Hello all,

Sorry for the generic Email but we have been under a little stress lately and don't have time to write personal notes.

As most of you know (I apologize to those we haven't had the chance to tell yet), Julie had our baby girl on Sunday, February 20, 2000 at 9:28PM. Due to complications, the baby was delivered 17 weeks premature (at 23 weeks) by C-Section. The baby's name is Kellie Christine Crooks. She weighed 1 lb. 2.6 oz at birth. Julie is recovering rapidly from the surgery.

Kellie hasn't done very well since she was born. Her tiny body has struggled to survive in her new environment. The doctors say she faces so many different struggles that they can't tell us how she is really doing. They also said the first 36 hours are the "honeymoon" hours. Things become more difficult after this time period.

The important part to us right now, is that she is still ALIVE!!! As long as she is alive we can continue to have faith that she will get better.

I know that not all of you share our belief in the Bible but I would like to share one of the scriptures that has helped me deal with this.

Please continue to remember Kellie in your thoughts and prayers. She really needs all the help she can get. This past year we've seen several impossible situations turned completely around and we would like to add Kellie to this list.

Thank you to all of our friends for all your support.

Sincerely,

Peter

Hi everyone! I am home now and able to write.

This will most likely be a long message, as it is not only to inform you, but also therapeutic for me to make some sense of the situation. If I seem disjoint, you will have to know that my mental organization is at a loss.

First I want to thank everyone for the support you have shown through calls, flowers, gifts, and most importantly, PRAYER!!! We lost count after 13, but think that Kellie and us are on at least 25-30 prayer chains nationwide!!! How incredible is that? If we thought Jacob had a lot of prayer support....

If we were to start writing thank you's today, then we would have a project to last quite a while. We will try to get to you all via personal mail or email, and since Kellie will be in the hospital for four months, as things settle down, I will most likely be doing that to pass the time.

Just a reminder that this note is going out to so many people in our lives, that we have to include all things for all people. If you wish to not get our updates, please let us know.

I was dismissed late last night from the hospital, and am recovering nicely from the surgery. I had a "classical cesarean", versus a "low-transverse" like with Jacob. This makes recovery a little harder, but so far so good. We are just now this morning adjusting to home life and striking a balance between home vs. hospital, Jacob vs. Kellie, and keeping ourselves afloat.

Now on to Kellie.....

Since Peter didn't say what the complications were, I will give you a short summary for those who are wondering, "just what happened". On Sunday, 02/20, I started bleeding around 1:30pm. The doctor said to get to the hospital. Upon examination, it was discovered that my cervix was dilated to 4cm, and the amniotic sac ("bag of waters") was down low in my vagina. Immediately the perinatologists and neonatologists were consulted while I was placed in a "trendelenburg" (head down) position on the bed, and monitors were hooked up to check Kellie's condition, and my contractions.

A sonogram was done at 4pm to determine Kellie's health, where the bleeding was from, and to confirm her gestational age. At that time, I was still around 4cm. Kellie was great, and we found out her gender then, as well as viewed her heart valves beating. While the sonogram was conducted, however, the neonatalogist was discussing the situation with us, so it was hard being torn between both sides of the bed, and digesting all the information thrown at us.

Next, the perinatologist consulted with us. In a nutshell, I had to make a decision how to deliver Kellie...vaginally or cesarean. They let me make the choice, which was very hard to do while three doctors are staring at you and giving you all sorts of statistics and risks. I had to make the decision alone, as they didn't give Peter and I time to talk it over. Thankfully he agreed with my decision. The justification I made was that Kellie's chance was a little better with the c/section due to her size and her breech (feet down) position. However, the risks for me are much greater for this delivery and any subsequent pregnancies. The doctor told us that, "she is 48 hours past the point of viability", meaning had she been born just 2 days earlier, they would not even try to resuscitate her.

We knew we had hours to up to two weeks to try and put off her delivery, and of course were hoping for the latter. At 9pm however, I felt like she was going to kick out, and that I needed to keep the bag of water squeezed inside. I now was at 9.5cm dilation (10 is full). I had only had one contraction while vacuuming on Friday, and then three strong ones during the sonogram.

The next thing we knew, I was being prepped and rushed to the operating room while Peter dressed into scrubs....20 minutes later we heard our daughter's cry and saw her tiny little body. I honestly didn't think she would live but a few minutes, so every minute she was worked on and I saw her tiny chest rising, was worth it all. Not to mention the emotion of hearing her cry. The doctors have said, "babies this little don't cry....." Well, our little warrior proved them wrong!!! (Her name means, "warrior (Kellie) Christian (Christine)". This name was picked out when we were expecting Jacob.

That tiny, kitten-like cry set off a whole gamut of blessings that have come since then. Also, God was putting other blessings in place before the birth. I may save the "blessing" list for another email. We are so amazed!!!!

Now on to Kellie's life....

She is the smallest, youngest patient in the NICU. She has a whole staff of wonderful, dedicated, compassionate, experienced doctors and nurses by her side at all times. More importantly, angels all around and the Mighty hand of God over her, hiding her in the shelter of His wings.

Her life is a delicate balance of machine and medicine settings. The main things we watch as she lives is the pressure and oxygen settings of her ventilator (which tell us the condition of her lungs), her heart rate and blood pressure, her oxygen saturation levels, her bilirubin level, temperature, electrolyte balance, glucose, and other various medical terms. She has received several blood transfusions, x-rays, enemas, and sonograms. If we thought we learned a lot about conception and pregnancy while dealing with infertility, well, we might as well enroll in nursing school after this!!!

While all those things hang in a delicate balance of highs and lows, we get good news on one level while hearing bad about some other level. We are just praying, and it has been the case already, that the good continue to outweigh the bad. It is an hour by hour, day by day roller coaster ride.

Kellie is beautiful and looks like Peter and Jacob. She sticks her big toes up in the air just like they do also. She responds to my touch, and will hold our hands if she isn't too drugged up at the time. Twice a day she must be lubricated with Aquiphor (basically, Vaseline) that keeps her skin lubricated to help keep moisture in and also protect her frail and transparent skin from tears and infections. If I am around when she needs that, the nurses let me do it and it gives me a chance to touch and love her all over. At other times, we can only touch her gently. Some times, just my gentle whisper will over stimulate her and make her vitals drop. We have to balance the love we give her between getting in her face and loving her from across the room or city.

Jacob loves his little sister and worries about her. He is understanding quite a lot for an almost two year old. He does get to visit her and the nurses also take wonderful care of him. He has his own "big brother" chair, and they bring him books and toys, etc. He also likes the other babies, who number around 35 right now. We are so thankful that we bought a high-tech video camera after Christmas. It is Jacob's, (and ours and visitors) link to Kellie. We can use it to take video or digital stills. Plus, we have taken several "normal" stills and the nurses take tons of great Polaroids. As we get time, we will send photos over email or post them on the web site. The problem with posting to the web site is it ties up our phone line since we have to work on it on-line. Since we don't have a cell phone yet, we can't do that should the hospital need to get ahold of us. Anyway, Peter did produce a small video clip that is there now. You will just need to check the site daily if you want for updates. Here is the link:

http://homestead.juno.com/threecrooks/kellie.html

You may wonder why we haven't changed our address to FourCrooks...we'll we just aren't sure how to do that now with the web site. We will probably begin a FourCrooks email account and keep this one, and eventually get everyone used to the new address. For now, we are FourCrooks in mind. Some people are having problems with the video clip. Peter suggests downloading it first then playing it, and not trying to play it from the web page. Yes, please feel free to forward our messages to prayer chains, friends, etc. We try to protect your privacy by sending "blind carbon copies".

I think I've said enough about the physical and emotional state of the situation. Now, like Peter, I want to share one of the many Bible verses I'm leaning on now for Kellie....

The most critical need Kellie has today is continued healing for two terminal conditions. She has air escaping from her alveoli in the lungs into her chest cavity.Right now there are visible bubbles under her skin that are most likely causing her pain. If the escaped air builds too much pressure, it could crush her frail little chest. If it gets into her blood, therefore, her heart, her heart can't pump air. So either of those two conditions would mean certain death. The other critical thing is that she has fluid, most likely blood, building up in her abdominal cavity and flowing upward into her chest and neck. They don't know, but assume, it is blood, and don't know where it started or when. So please specifically pray for these two conditions. God promised she is healed and we are waiting for the miracle and the testimony to come from it. As of 4am, all her other conditions were basically stable.

While many have shared stories of premature babies born her weight or less, we need to inform you that her weight it not the issue, it is her gestation period of only 23.1 weeks at delivery. The statistics say she has/had a less than 1% chance of survival. At 24 weeks, that jumps to 54% and at 25 weeks, it is 87%. Many babies much smaller have survived with no complications, but most were 26 weeks or older.

Yes, as Peter mentioned, the "honeymoon" period is over for her, which I believe was God's way of comforting me while I was bedridden. And also, so family and friends could visit her before it got too stressful for her. Once the first 36 hours were up, her risk for seizures (she's had one, but Phenobarbital is keeping others at bay), infections (NONE, Praise God), intestinal failure (also fine), and also the need for blood transfusions (she's had four) increases. So other than the two more uncommon conditions listed above, she is already a miracle baby. She is now 87 hours old! In fact, she may be growing in stature because last night they noticed the need to reattach the "sticky glue" headband on her head because it was getting tight. It may also be from fluid, but we trust it is true growth!

Thank you for your time and "listening" to me. We must eat lunch, get out the door, take Jacob to a sitter's, and then visit Kellie now. I also need to pump breast milk several times a day to store up for the day when she will eat it.

Please call her Kellie when you talk about her. Thanks.

You are all blessings to us! Please write as you are able, and know we wish we could respond personally at this time.

Sincerely,

Julie

Today Kellie is one week old! She is still in very critical condition, and the roller coaster ride of her machines, medicines, and monitors continues to go up and down. When one or two things improve, one or two go downhill.

Happy Leap Day! We are leaping with joy over the works that God has done and is doing! Since I haven't written since Thursday morning, this is sure to be another long message.

Well, the fog is starting to clear for us and we are coming down to solid, but not level, ground. Words cannot adequately express the love and appreciation we have for all of the concern, prayers, cards, gifts, emails, thoughts, food, encouragement, scriptures, etc......Please know we deeply appreciate all you've done. We can honestly feel the support of those holding us up. If we didn't, I don't know what condition we'd be in!

We are trying to get back into home life. Peter returned to work yesterday, and so did I...trying to get everything in some semblance of order at home, and get Jacob back into a routine, albeit a new one. It is a delicate balance, and since we are in this for a very long haul (most likely four months before Kellie will come home), we have to pace ourselves. Last week wore all of us out and we came crashing down on Saturday, especially Jacob. He has been ill (runny nose and cough) since Friday, so he hasn't seen his Baby Sister since Thursday. He is doing pretty well with that, but he is liking Mommy around now. He will be two years old on Saturday, and so turning two is helping and hurting his condition. Peter is trying to get back into work, and figuring out the schedules for the projects he is working on. He was supposed to go to North Dakota for awhile at the end of March, but now that is something to be worked out.

On our web site, we will get some still photos uploaded, and have a text update. We will also post other things Kellie-related like poems and drawings and scriptures. Several songs have brought us through this journey, and we will share the lyrics with you so they can encourage you also. We will also add some links to web sites with Preemie information for those of you who are asking some of the common questions. We are getting quite worn out repeating the same information over and over on the phone. We tend to get very mixed up as to what we've told whom, what, and when. The past few days we've mainly kept the grandparents updated (and not as often or quickly as we'd like) and let them pass the word from there. We have to have some stability. On the web site, we will also keep a running list of praise reports and blessings. For the most part, no news is good news....

On to Kellie's condition, which is what most people are interested in. She is still in very critical condition, even though we tend to use the word stable quite a bit. The stability comes in with her everyday monitoring of her: oxygen saturation levels, ventilator settings, electrolytes (sodium, calcium, potassium, chloride), fluid input and output, blood gases, blood components (CBC, hematocrit, hemoglobin, platelets, etc.), heart rate, blood pressure, glucose levels, weight, X-ray, lung condition, bilirubin levels, and on.......we need prayer that these will remain within range, and that her body would take over more of the work instead of the settings of machines and medicines. We are amazed at the things that go on in the human body and how God formed us...it is amazing any of us are alive!!!!

The up and downs that happen everyday with the above are expected. What we want held at bay is the status of her lungs - that they would not leak (they had a lot, but stopped - Praise God), that the fluid (pulmonary interstitial emphysema, PIE) in her lungs would clear, and that she continued to be weaned off the ventilator (the oxygen levels and pressure to come down). Also, she had many seizures over the weekend. She was at an almost lethal dosage of Phenobarbital to keep them in line, and so she got an additional medicine. As of early Monday, the seizures stopped. We account this and the decrease in the air leaks from her lungs to many, many prayers. She is still struggling with some edema (water retention), but that also appears to be coming around (also due to prayers). When we were there on Sunday, and things were looking bad again, Peter prayed and told God that He had to keep His promise of complete healing and restoration. She had been "maxed out" on her ventilator settings all day, and the edema was very bad. Well, during our visit, her vent settings came way down, and during the night, she started urinating. The nurses said to one another, "it was amazing!". Well, we can attribute that to prayer...so when we tell you your prayers are helping, we mean it!

We also need to pray that the bleeding she had into her abdomen will stay stopped, and that she will absorb all the blood that is making her coloring look so bad. Also pray that it will not start up again, and that any organs will not be damaged. They don't know where the bleeding was coming from, or when it started. They could've investigated with surgery, but not in her frail condition. The abdominal bleeding and lungs leaking were the things that the doctors gave up hope about on Wednesday....well, we believe the report of the LORD! The head neonatalogist was amazed she lived through those things!

Many have seen or heard the statistics based on gestational age and wonder if now that she is over a week old, does it put her in a new column. No, it will still always be based on her birth at 23.1 weeks. She still has a less than one percent chance of survival and a very high chance of handicaps. We believe that God can take the statistics of men and show just how much he is GOD! He could take a zero chance for survival and turn it around!

I had the opportunity yesterday morning to speak on a local radio show. I was able to share the blessings and praises of God while talking about our situation. Kellie was discussed on Friday's show, and now I will be giving weekly updates. We have received cards, phone calls, and offers of help from the show, in addition to the word of mouth (and e-mail) spread by all of you. I think we are on over 40 or so prayer lists now worldwide.

Something very important I've neglected to tell you this time is our report about Friday. We claimed the scripture in James 5:14 about calling the elders of the church to anoint Kellie with oil and pray for her. An elder of the church came, and before we prayed for Kellie, he asked if I wanted to feel better. I had been trying to wean myself from the narcotic and was in severe pain from my 9.5 inch incision. Of course I told him yes, so he, Peter, and another friend prayed for me. I didn't get healed....yet. Then we went and anointed her bed and equipment with "Rose of Sharon" scented oil. Peter felt the presence and power of the Holy Spirit and knew that God was healing Kellie. He still felt it after we left NICU. Then as he was explaining that, I felt it come on me. I felt like someone had their hands inside and was putting all the pieces together. Then I felt just enough pain to take it easy, but not the deep pain, mainly just like I'd done a bunch of sit ups. I stood up straight for the first time all week and could bend and twist. It was totally amazing. I felt like I wanted to run up and down the halls!!!! It is my sign that since I was healed (haven't needed or wanted any painkiller since), that Kellie is healed also. The anointing of the Lord is all around her bed.

Many have shared visions of how she is protected. Peter had a vision early on that God's hand was over her body, and he is holding on to that and holding Him to that promise. My Mother had a vision of two angels standing on either side and giving her the "A-OK" sign. Then my hairdresser saw Jesus walk into the NICU and place Kellie in the palm of His hand and take all her pain away. So, we know she is in GREAT HANDS!!!! My five year old nephew, Ian, also drew a picture of three angels flying around her bed protecting her. We will post a scanned copy of this to the web site. Peter needs to teach me how to do that.

She also has many "surrogate moms" taking care of her - the nurses. They also act like mother hens if another visitor gets too close! The NICU is made of up of four teams of ten beds, and Kellie tends to have the same experienced nurses over and over. Also, there are seven neonatologists and several residents, interns, and respiratory technicians.

We have had a chance to bless others which is really neat. We are getting so many blessings, that we are passing them on! Saturday, Peter changed a flat tire for a lady picking up her husband - he had back surgery. Peter almost needed to be taken the 100 feet to the ER door, however, because he forgot to put her parking brake on, and the car rolled off the jack and back several feet. Thankfully, he had placed the tire behind the car, and it stopped it. I was inside the hospital and very glad I didn't see that! We have also been able to talk and share with the other parents of NICU patients. They think their situation isn't as bad as ours, but I think that regardless of the baby's age or condition, it is very stressful for anyone in there!

Since many have asked how to help, and we are doing fine for now, I did think of one small thing you can do! When dining at McDonald's, put a little change in the Ronald McDonald house "bucket/money drop". Also, some McD's stores collect aluminum can pull tabs. These donations support the Ronald McDonald freestanding houses (for out of town families) and the Ronald McDonald rooms within hospitals. The room at Wesley is reserved for all families of hospitalized children. There is food and drinks available for free, as well as a shower, refrigerator, laundry facilities, living and dining room, quiet room, and a computer with Internet access (we can get e-mail while at the hospital). There are also games, books, etc. We don't anticipate using the room too often, but it will be nice when needed over the next few months. You can help us and other families.

The list of blessings that I will eventually post to the web site is so long it's a struggle keeping everything written down! I am amazed at how God even cares about the seemingly trivial yearnings of our hearts, and will bring those to pass also. There were situations in place up to seven years ago that we didn't understand at the time, that He is revealing in His perfect timing!!! So don't give up faith or hope when all seems bad, you will find out in time why things are happening, and some things will happen that you don't even realize!

We cannot fathom why the Lord would bless US with a daughter that is affecting so many lives. We know as the testimony of her life spreads, that it will amaze more and more people. Peter is trying to hear what the call on her life will be. We are confessing the Word of God (the Bible) out loud and having complete trust in Him. He is whom we get our strength from, not ourselves, that is for sure!

Again, please feel free to send this message and link on to others, as there is no way to report the Lord's awesome power to all those who are praying!

From the bottom of our hearts,

Julie (and Peter, Jacob, and Kellie)

Today was a beautiful, spring day. My peace lily and my crocus bulbs are blooming! The flowers and sunshine have lifted my spirits. I started driving again, and Jacob and I went to zoo class. It is good for him to get back into his normal routine. He likes to help me when I use the breast pump - he gets me bottles and then puts them in the freezer. So now he feels like he's being a part of Kellie's life.

Today Kellie has done pretty well! Keep storming the gates of Heaven with those prayers! Her ventilator settings were up and down, and that is pretty typical. They've taken her off the "bili lights" (for jaundice) for now. She is peeing quite a bit...if you remember, that was the prayer request lately! In fact, they had to increase her intake to compensate for it - she needs those electrolytes!

The big news of the day is that she started on my colostrum (early breast milk)!! Now she gets a little "real" food!! They started her on 1/2 cc (1/10 of a teaspoon) every hour! She tolerated three feedings, but then spit up the last one. So then they stopped. She is getting it via a nasal-gastric (NG) tube. They will try again off and on. I hope I have lots of good antibiotics in there for her!

The other prayers have been answered regarding her seizures and the edema (since she's urinating). She hasn't had any seizures since Sunday! Also, her Phenobarbital levels have come down. Her electrolytes are stabilizing for now. Her kidneys appear okay now that she is flushing out fluid. While she has had two "good" (being relative) days, it could all come crashing down tomorrow, but we trust we'll stay on the "high" end of the roller coaster!

Kellie now has two sets of doll clothes (one from a close friend, and one from a nurse). If she could wear them (she barely wears a diaper), she could wear clothes for an 11-13 inch doll! A preemie shirt is way, way big for her! Some day she will wear it. For now, her bed is "dressed" up with floral and pastel blankets and snuggli's. It is quite a switch for me getting used to girl stuff...but it is so fun!!!

Thank you once again for your continued support and prayers!

Julie =)

We're sorry for the delay in the updates. We can see that the site has had many hits, with nothing new on it. All three of us at home have upper respiratory infections....and Jacob also has gastrointestinal trouble. So, we've been trying to keep up our health the last few days, and keep up with Jacob.

Overall, Kellie is doing pretty well, all things considered. The down side of her troubles the past few days have been her ventilator (vent) settings. She has had to be at 100% oxygen most of the time in order to keep her oxygen saturation in her blood (sats) up. They obviously can't turn her any higher than 100%. In order to keep her healthy, they have to turn up the pressure of the air in order to get her lungs inflated. When they turn up the pressure, that is not good because it can tear up her lungs more, and possibly cause more air leaks - something that is very critical (and a healing answer to prayer last week!). A couple of times in the past few days they have had to "hand bag" her air, which is not good. Please pray that the condition of her lungs improves...it has been stable, but no improvement. They are trying to figure out why her vent settings have had to be maxed out, after she was able to be weaned down some. They did yet another chest x-ray and also a chest sonogram yesterday to see what was going on, but they didn't find anything. They thought that maybe she had free fluid in between her lungs and chest wall. If that does become a problem, they will insert a chest tube to drain the fluid.

They started feeding her breast milk again on Thursday at noon. Since then, she has tolerated it well, hasn't spit any up, and is now "moving her bowels". This feeding is a trial run of her GI system and not for nutritional purposes. We will most likely have improvements and set backs with the feedings, just like all the other stuff.

Her edema (fluid retention) continues to improve, but she still weighs more than she should. Her electrolytes have been holding good for several days now. Her heart rate drops to borderline low when they have to sedate her, but otherwise is doing good. She hasn't had any blood pressure problems for about a week now! She has had a few more seizures, so they have increased her Phenobarbital and some times have to also give her a medicine called Ativan. Please pray that the seizures would stop completely. They were doing pretty good until the vent settings had to be turned up. The doctors don't know what damage the seizures will cause.

On Monday, they thought she might have some infection around her umbilical (belly button) catheter (UVC). They ran some cultures, and they all came back negative - Praise God!!!

Her primary doctor (there are seven doctors who rotate, in addition to interns and residents), who is the head of the neonatology department, talked with me yesterday. Overall, he said her condition is better and much more improved than they expected a week ago. Her body (through the massive prayer and God's touch) is starting to take over some of the processes, instead of just the machines and medicines. Another doctor was glad that she made it through the first four days with no head bleeds (also thanks to prayer and God's hand of healing and protection), since that is what causes many of the disabilities.

The best news that Dr. Bloom told me is that her chances of survival have jumped from less than one percent to 10 - 20%!!! He said, "or the optimists would say 50%"!!! That is good to hear! God in his magnificent glory WILL make her survival 100%!!! We are still believing and trusting that!

In the next week, Dr. Bloom said her eyes should open. We are waiting for this special time since her eyelids have been fused since birth (like a newborn puppy). It will be a great step, and will make us long even more for the time when we can hold her. Since we've had some cold/cough crud, we haven't even touched her very much. Jacob hasn't seen her for over a week, and under his doctor's orders, shouldn't see Kellie until at least Thursday. That means he will gotwo weeks without seeing her. We are very thankful that we have the video camera to keep him updated. He turned two years old today! I told Kellie, "I guess you just wanted to have a birthday close to Jacob and Daddy (his is the 7^th)". I told all of my family that after Kellie has her special one-year birthday, that there will be one big party every year for all three of them! Then I get my own party when my birthday comes around in August!

Here is the scripture that the Lord directed Peter to this morning...

Julie

Well, today has been a long day...I now have developed a fever and with it the aches and pains. We hope that it is related to the respiratory illness we've had, since Jacob also had fever Thursday and Friday. I will call the doctor in the morning to make sure it's not related to my surgery. That said, none of us were able to see Kellie today. Peter didn't see her yesterday, either, because he's felt ill, but has no fever. We know she is in good hands, and we don't want to risk getting her more ill or the staff, either.

The great news today is that Kellie's vent settings have been able to be turned down! Thank you for praying for the situation! In addition, her blood gases (Oxygen, Carbon Dioxide, and pH) have been good! That means she is respiring good with the levels! Her oxygen saturation levels (sats) have been holding in the 90's today. They should run 85-96%.

Kellie hasn't had any seizures since I last wrote - many thanks for praying for that, also! They haven't had to give her any supplemental Ativan. Her edema is holding steady, and could still come down some, but a good sign is her abdominal girth was down some. Today her electrolytes ('lytes), mostly her sodium (Na) were a little messed up, so they once again changed her fluids. They are not having to do this as often as last week, so please pray that the 'lytes would continue to stabilize.

They have more than doubled the rate of her feedings to 0.7cc per hour from 0.3cc per hour. So far she is still tolerating it well. We hope this is a sign that she won't have the common intestinal problem that preemies get. I will ask the doctor tomorrow if the feedings are nutritional yet. She did gain about 1/2 ounce today, but they still want to keep that to a minimum because of the edema. She now weighs 1 pound, 10 ounces - up 7 ounces since birth.

They are giving her a sedative as needed to keep her calm and let her sats hold steady. When they get in to "mess with her" (cleaning, drawing lab, moving, suctioning, diapering, etc) she gets worked up. They are trying to keep the area around her bed as quiet and dark as possible. She likes to lie on her belly, so they keep her that way as much as possible. Her overall color is much better, and she is looking more like a real baby with her diapers actually taped now. Her diapers are smaller than a deck of playing cards!

Overall, we are at the top of the roller coaster ride of her health, and we'd really like to stay up there! Please pray that all her functions would continue to improve, not just stabilize. When her primary doctor returns on Wednesday, I'd love to hear him be surprised at her condition! Obviously, her lungs still need a lot of work; so pray they would grow, develop, and heal. The left lung is still pretty full of fluid.

Here are two quotes I heard several years ago that got me through some rough times then. They are helping me now.

Julie

I see that the hit counter is way up this morning, with no new report, so here goes...I was still ill yesterday and didn't get to see Kellie again. Peter and my Mom visited her, and Peter said she looks a lot better. Her color is better and her skin is all wrinkly from getting so stretched out from the edema. Her chest x-ray yesterday showed that her lungs are overinflated, so they tried switching her from the high-frequency ventilator (HFV) settings (several breaths a second) to the conventional ("normal" breaths) settings. It only lasted a few hours before they had to switch her back to HFV. In the process, they had to "hand bag" her again (remember, that is not good). She had been weaned down on the HFV, but after the trial run, she had to be maxed out again. She is running at 100% oxygen again. Room air is 21% and is what we breathe.

She seems to be tolerating the feedings, so they increased her amount once again. She is now getting 1cc per hour (1/5 teaspoon). So it takes five hours for her to eat a teaspoon! The x-ray didn't show enough gas in her digestive system, so they are going to watch her closely. They are still watching for pneumonia symptoms as well. Her sodium was down a little last night and today, so they are adjusting her fluids again. She hasn't had any blood transfusions in a week, but today her hematocrit was down, so she may get one today. She lost some weight in the last day, and that is good. She really should be down to her birth weight (1 lb., 2.6 oz.), and she is at 1 lb., 9.5 oz. Her abdominal girth is stable, which is good.

This morning, Kellie's oxygen saturation is better, so that is one positive about her ventilator settings. She still needs to come down on her oxygen level and the pressure settings. They have weaned her some in that she gets five "normal" breaths a minute instead of just three. They are still trying not to disturb her much and are giving her the sedative to help keep her calm and breathe better. Her blood gases have come back great the last day or so, so that is another positive.

This is a song that spoke to us last night....it is by Rich Mullins

We still need to rely on Him to give us the grace to live through this trauma, and He is here for us, and He is also holding Kellie close and comforting her as well. He is the Prince of Peace. He can and will be yours, too, if you let Him, no matter what you are facing! Please remember that we are not getting through this by any strength of our own! It is only by His grace. I Peter 2:24 says, "He himself bore our sins in his body on the tree, so that we might die to sins and live for righteousness; by his wounds you have been healed". It doesn't say, "may be healed", or "will be healed", it says WERE healed! Jesus Christ died for all of us, and he bore our sin. He also has healed Kellie, and we trust and believe that! 

Please continue to pray that her lungs would improve. Thank you again for your love and support!

Julie

(FYI - when I update this file, the comment on Kellie's page that says "last updated" doesn't change, that only changes when we add photos. Since this file remains the same, the date will not change, so always check this file for current updates)...I don't think I made any sense with that!!! =)

Well, I got ill again yesterday. I was doing fine in the morning, but then I got the GI symptoms Jacob had. Then last night, when I planned on visiting Kellie, my fever came back. The nurses say that my fever needs to be gone for 24 hours before I visit Kellie. That means I won't be going today. I was fine with not visiting her until last night when it got to be too much. I don't know how I'll last waiting until tomorrow...and that is if I don't have any fever today! That will be at least five days without visiting her. Peter spent his birthday yesterday taking care of me and filling in for me with Jacob. He and Jacob have enjoyed getting closer lately, and I've enjoyed watching him try to be a "Mommy" (while I supervise from the couch or bed) in addition to a Daddy.

Kellie's ventilator settings are still very high and her lungs are very critical. She just can't be weaned down from the vent at all. Yesterday, the resident told the nurses not to mess with her unless absolutely necessary. She gets overstimulated so easily which makes her need higher settings. She has also had oxygen saturations in the 50's several times. (Remember the range needs to be 86-97) They try to do all the work on her at one time and then let her rest and recover for awhile. I think she's been trying to tell them that she needs Mom and Dad! We'd like to think that anyway! Please continue to pray for her lung condition, function, and healing! All other systems are fairly stable now, but there are still lots of risk factors and things that could happen at anytime. Please pray the other conditions (intestinal trouble, infections, eye problems, etc.) would not happen!

They increased her feeding amount once more to 1.2 cc/hour, so it is a four-fold increase since Thursday. She seems to still be tolerating the feedings. At the same time, her edema continues to slowly get better. She lost 35 grams (a little over one ounce) in the last day. Her weight is now 686 grams (1 pound, 8 ounces). That is still five ounces over her birth weight, where she should be. Slowly but surely, the water retention will subside. Her abdominal girth is still stable and actually went down some yesterday.

Kellie still hasn't had any seizures in quite a few days. She did need a blood transfusion yesterday. They were able to remove the heat pad from under her body. That means she is stabilizing her temperature well. She still gets heated from above her bed. Her skin is tougher and more resilient, so she doesn't have humidity in her box (Plexiglas sides and plastic wrap cover), and she doesn't need Aquiphor (Vaseline-like stuff) much any more. Her sores on her feet and neck from IV sticks and bandages are healing well. She has been off of the bilirubin (jaundice) lights for several days now.

God has brought her so far in 2.5 weeks and done so many miracles in her tiny body! We trust that her lungs will get better and better with time, it just so hard being patient and it is very scary knowing how critical she is. Please pray we would not get frustrated and continue to lean on the Lord for strength. I need physical healing and strength, and I'm starting to need some emotional healing also since I can't be with Kellie. We feel the prayers of those holding us up and supporting us when we can't do it. Thank you for the continued help! We sincerely appreciate it and couldn't do it without you. We are amazed at the care of people who don't even know us! That reinforces the good we feel for people in general.

The nurses assure me that they will tell Kellie we love her and they love her too. I know she is in good hands. We just hope she waits to open her eyes until we can see it. I think it will help us connect with her. Then the next step will be to hold her, which will be several weeks away.

Here are two web links about preemies.

http://www2.medsch.wisc.edu/childrenshop/parents_of_preemies/index.html

http://kingproductions.com/babylink4.htm#medical

Thanks again!

Julie

Thankfully, I feel much better! Peter and I did visit Kellie late last evening. We were able to speak with one of her doctors for about 45 minutes. Yesterday afternoon I also spoke with one of the nurse practitioners for about 30 minutes. We feel better and worse after those talks! One little scare, that turned out to not be very bad after all, is that she had some thyroid tests that were very low. If there really is a problem (we will know after two rounds of tests that will take a week) it will be easy to fix with proper medication. The neonatologists consulted with a geneticist/endocrinologist about her thyroid.

Her lungs and ventilator status is still the same...still maxed out on pressure and oxygen. We learned a lot more of the situation last night, and it is not good, as we expected. While Kellie has pulled through the acute phase of her lung disease, it appears she is entering into a chronic phase. Dr. Lang said that it is a miracle (an answer to prayer we know) that she even pulled through the major air leaks two weeks ago! He said out of the thousands of patients he and Dr. Bloom have seen over many years, that maybe one or two have pulled through - and Kellie is now added to that very small list of survivors! Not to mention the fact that she had very bad abdominal bleeding at the same time! We know she is a miracle in process, and we have evidence of that!

The situation with her lungs is that they hope (it is hard to tell with x-rays) it is not deteriorating, but staying steady, with maybe a little tiny bit of improvement. If she does get worse, and continue down that slide, there is not much they can do - it will be fatal. They can try steroids, but only as a last resort as the side effects are tremendous - for her brain, heart, and other organs, plus other stuff. Her lungs are possibly very inflamed and are for sure overextended. Plus, where there should be many small alveoli, there are clumps of them that are basically "blown out" and appear like cysts. Barring infection and more deterioration, it will be a long recovery for her.

I feel that God has had her on the precipice several times in order to just snatch her back at the brink of disaster to show how much He cares for her and just how powerful He is. I trust this phase is just His way of making sure we continue to rely on Him, thank Him for the blessing of her life and the healing He has done, and teach us patience as we continue to seek Him.

Please pray that this condition will stabilize and improve as well. She has so many other good things going on, that we'd love to add this to the list! She is continuing to tolerate increased feedings. They are following a very cautious protocol in regards to her feedings, and she is doing great. She is now receiving one half of her nutritional needs via breast milk! They have been able to back off on her IV therapy so much that this morning they discussed removing one of her venous lines - either her umbilical (belly button) catheter, or her central (back of head) line. We will find out later today the status of that.

Her coloring and appearance looked so much better to us last night! Also, as things are removed from her bed and body, things at least appear to be better! The NICU staff continues to be glad about her not having any infections, but still continue to monitor her for the smallest sign of one. Her improving edema is a sign of her cells and tissue recovering and mobilizing the water!

Kellie has come a long way and has a long way to go, but with the continued prayer support and faith of many, we know she can pull through this. We want her to be a survivor of everything thrown at her tiny body! She is a warrior and is fighting hard. The doctors say they'd like to take credit for several things that are improving, but they say, "Mother Nature is taking over". Well, we know that God IS "Mother Nature", that He made all of us, breathed life into us, and is healing Kellie. We are all miracles of His creation!

A woman at our church made a sign for Kellie with these scriptures, and I want to share them:

K - The Lord is your keeper, the Lord is your shade on your right hand. - Psalm 121:5

E - The Lord shall be to you an everlasting light, and your God your glory and your beauty. - Isaiah 60:19

L - From the end of the earth I will cry to you, when my heart is overwhelmed and fainting; lead me to the rock that is higher than I. - Psalm 61:2

L - But as for me, I will look to the Lord and confident in Him I will keep watch; I will wait with hope and expectancy for the God of my salvation; my God will hear me. - Micah 7:7

I - For with God nothing is ever impossible, and word from God shall be without power or impossible of fulfillment. - Luke 1:37

E - Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord. - Psalm 27:14

We sincerely thank you for your prayers! Please keep them coming! Of course pray that her lungs will continue to improve!

Julie

Kellie is now 19 days old! I told Peter this morning that soon we will be saying "one month old"! Last night when we visited, her nurse was in the process of suctioning and repositioning her, so I got to give Kellie a little massage! Since she is so easily overstimulated, it didn't seem like much, but oh boy, was it ever good for me! The nurse coached me on how to do it...rub in one direction, from her trunk out, hard enough not to tickle, but not too hard, and watch her for signs when she's had enough. After her massage, we let her recover, and then the nurse turned her on her tummy (which she likes) and I was able to finish her Aquiphor treatment on her back. This time when touching her I didn't have to wear rubber gloves like her first week of life (which was the last time I really touched her), so we actually had a lot of wonderful skin-to-skin contact! Touching her is not like touching a full-term baby since she is so skinny and tender. The closest I can relate it to is handing a raw chicken and greasing it up. That may sound bad, but it's true...a chicken without bumpy, thick skin. Kellie weighs less than most chickens I cook, but it is a good comparison. Her arms and legs don't have any meat like chicken wings, and when rubbing her chest or back, I can feel every teeny tiny rib, which also are about the size of chicken ribs. This poor girl has been compared by me to lots of animals..."she cried like a kitten, looked like a newborn puppy, and feels like a chicken!!" Please don't remind her of this when she grows up! =)

Kellie's feedings were increased once again to 2.0cc/hour. She will most likely stay there for awhile because she is starting to spit up some food, and she still isn't having any bowel sounds. She hasn't had any seizures for one week - PTL!!

Dr. Bloom (the director of neonatology and her primary doctor) called yesterday and updated me on where we've been, where we are, and the treatment alternatives for the future. He had been gone since Friday evening and wanted to touch base with us. He said Kellie's lungs have never functioned well, and this is simply because of her extreme prematurity. He actually stated, and it was weird to hear this, "a couple of times we thought we lost her, and we did some pretty drastic moves with the ventilator to keep her here." The drastic moves are what has caused her so much damage, but it was a risk we are glad they took! They will work with her lungs to lesson any long-term damage now. One of the things they've done is to switch her back to the conventional settings on the ventilator. Since 11 am yesterday she has tolerated it well, obviously much better than the trial run on Monday. The high frequency settings were great for her acute phase, but now the conventional is better for the chronic phase because they have more control over weaning her.

Dr. Bloom explained that her blood is "shunting". This means it is going to her lungs but not picking up oxygen or giving up carbon dioxide. It is returning to the heart without any changes. So we will most likely see her have "blue spells" (short periods of desaturation) for two or three more months. They can help her keep these at bay by sedating her, changing her environment, suctioning her often, and not increasing the vent settings too often or too fast.

Her new phase is nutrition and growth. Dr. Bloom said they'd like to see her have real weight gains of one-half to one ounce per day. Earlier, with her edema, gain was bad, but now all gain is not bad. Her bowels need to work well. They are increasing her suppositories so she can get out the rest of her meconium since it is so sticky. This growth phase will be a very, very, slow process.

Overall, they are really glad to see her skin tone and condition improve and her electrolytes stabilize. Her kidneys are regulating everything well. Dr. Bloom said we can expect to see some feeding problems and setbacks, some infections, and some continued lung impairment. He explained how steroid treatment for her lungs looks really great for the first several weeks, but in the long run, it just prolongs mortality. If they can hold off treating her like that, she has a better overall survival rate.

Last night we were very glad to see how well Kellie was tolerating the conventional ventilator. It was strange, but neat to see her "taking" normal breaths of about 31 per minute rather than vibrating pulses of 10 breaths a second. This makes her look more alive and real to see her chest actually rising and falling!

I added three more pictures to the web site yesterday. They are the bottom right thumbnails. If we get time over the weekend, we may add a short video clip of me massaging her to the site also. Thank you once again from the bottom of our hearts for all the love and prayers! We love you!!!

Here is a song called Peace, from a group called Grammatrain:

Could never be without You. Could never be without Your love. I feel You from above. Don't ever want to be alone.

Julie

I'm sorry there haven't been any updates lately. Grandma and Grandpa Crooks came to visit this weekend so we could celebrate Jacob and Peter's birthdays. That left little time for an update. Then this morning, I couldn't get on Juno to even get email. This is the first time I've had all day to do this. (When I tried posting this to the web site at 5:45pm, I could delete the old file, but the program wouldn't let me import the new one - ugh - that is why it was "down" for awhile.)

Kellie turned three weeks old yesterday! She is considered 26 weeks "GA" (gestational age). I think of it as 23 + 3 weeks! Her ventilator settings did pretty good until Saturday afternoon, then she was "maxed" out the rest of the weekend until earlier today, when they were able to wean her rate and oxygen. Over the weekend, her carbon dioxide levels (CO2) levels got pretty high. They were really scared for awhile, then they found out the monitor wasn't properly calibrated. The levels were high, but not as high as the monitor said. When her CO2 is high, she is essentially hyperventilating.

Since last evening, her problem has been fluid retention (edema) again. She gained two ounces a day for two days in a row. She should be having real weight gains of only 1/2-1 ounce per day. Her weight is now 1 pound, 12.5 ounces. She didn't urinate properly last night so they put in a urinary catheter, and still she didn't get much out. She is "stooling" okay, and it is now "breast milk" stool, meaning the meconium is gone now. That is a good sign. They want to find out why her urine output does well for a few days and then drops off. So, they ordered a renal (kidney) sonogram. They also say her symptoms may indicate that she is having silent seizures (she hasn't had any seizure activity that was obvious for over a week). So they also ordered an EEG of her head. When I called at 3:00pm, they hadn't done either procedure yet.

Today they did do a chest x-ray, which showed her lungs are about the same - in not very good condition. They also did an echocardiogram to check for PDA - patent ductus arteriosus. This is a heart vessel that connects the pulmonary artery with the aorta in a fetus and normally closes after birth. Before birth, it sends most of the blood directly from the right ventricle of the heart to the aorta, and bypasses the lungs. Kellie's PDA closed on her own when she was a few days old, with a little help with some medicine, but they have to check periodically to make sure it is still closed.

I'm sure Kellie is just "loving" the medical staff today after all the messing they've done to her. Earlier in the day she wasn't even tolerating diaper changes. I hope she will be glad to hear our voices tonight, and that she knows we don't do anything to hurt her or make her mad! The hardest part on her will be getting all the electrodes stuck to her head for the EEG. They held off even doing one until today for that reason - her skin is just to frail and there was no need to put her through it when they knew she was having seizures anyway. I've seen eight-year olds getting EEG's, and they have most of their scalp covered - I'm sure Kellie won't have any bare scalp showing, since her head is the size of a large lemon (here I go, relating her to food again!)

Kellie's nurse informed us that in rounds Sunday, the doctors discussed starting steroid therapy some time this week. We haven't spoken with the doctors directly, but in discussion last week, we were told this would be a last resort. There are too many risks and side effects. It appears today that since she was weaned some on the ventilator, that maybe we can hold off for some time longer. The justification for the steroids will be how well she does on the ventilator and its settings.

Thank you once again for all your care and concern! We couldn't do it without you! Below is a song that I think illustrates how much we know we need people and encourages us to help others. Speaking of that, while I have your attention, we learned of a situation concerning the niece of a Crooks' family friend. The niece recently gave birth to a healthy, six pound baby. The baby is fine, but the mother (niece) is in critical condition with kidney and liver failure. That is all the specifics we have now, but we are praying for this situation for healing for the mother, care for the baby, and strength for the father. Please join us in prayer for this family. Thank you. If and when we get any more details, we will update you. Also, my mother fell and broke a bone in her leg on Saturday and is in pain and can't go to work. This also means that she is unavailable to help us with Jacob's care. Please pray for her to have a rapid recovery and no pain. She will see an orthopedic surgeon tomorrow.

Here is the song, it is by Rebecca St. James from the album Pray. The album recently won a Grammy, and the whole thing has really been ministering to us lately.

I'll Carry You

I know that look in your eyes, I see the pain behind your smile. Please don't hold it all inside. Together we can run to the finish line. And when you are tired, I'll carry you.

I can't walk this road without you, you cannot go it alone. We were never meant to make it on our own. When the load becomes to heavy, and your feet too tired to walk, I will carry you, and we'll be carried on.

Share your burden now. I will listen. And when I'm weak, will you hold me to the Truth. That we can go on, for we are carried, three strands a chord cannot be easily torn...

I can't walk this road without you, you cannot go it alone. We were never meant to make it on our own. When the load becomes to heavy, and your feet too tired to walk, I will carry you, and we'll be carried on.

God will carry us. God will carry us. God will carry us. God will carry us.

Before I say one more word, hear me say I love you. My love comes from a heart that overflows with love Who fills me. Comforts me. Comforts you. With arms stretched out He said, "I'll carry you"

I can't walk this road without you, you cannot go it alone. We were never meant to make it on our own. When the load becomes to heavy, and your feet too tired to walk, I will carry you, and we'll be carried on.

Julie

There was no report yesterday because I couldn't get this file posted from our computer. Also, we were waiting on the results of Kellie's many tests from Monday, and I wanted to wait for them to share any news. The great news today is that Kellie was able to be weaned some from the ventilator! They turned down her rate and pressure, and at the same time she was able to have her oxygen turned down as low as 60% at times during the past day. Her carbon dioxide levels have improved (lowered), and when they go up, they give Kellie some more sedative (Nembutal, or Pentobarbital) that brings the levels in line. She really likes her sedative, so we have a little "druggie" on our hands! Seriously, it does help her saturations and should also help her grow better. She is "wheezing" a bit. The nurse explained this is from air leaks around her ET (endotracheal tube). This may be a sign that she is growing and the tube is too small. Eventually they will increase the size of the tube. In the meantime, they will watch it closely.

Kellie's urine output increased to twice the amount they'd like to see, after she wasn't going at all! They had to go the other way and give her more IV fluid to make up for it. Poor little baby, we tell her to pee, and then we say, "no, not that much!" It is a delicate balance just like the rest of her systems. There was some suspicion yesterday that she may have an infection, so they did a septic, or blood, workup, which will take 3-5 days to culture. In the meantime, she will have antibiotics in case there is an infection. Please pray that she has no infections now and that she will be protected from them in the future. The last time she was tested, there wasn't any, so we pray it will be the same this time. For the past two days, Kellie's calcium level was too high and her blood sugar was too low. They helped this along by decreasing her breast milk amount in half and increasing the type and amount of IV fluids. This morning the two levels seem to have stabilized, so they increased her feedings a little.

The unofficial word from the ultrasound technician is that her kidneys looked okay. Of course we have to wait on the official word from the doctor. They ran the first sonogram and then did a more thorough one. They were looking for little blood clots and didn't find any.

The EEG Kellie had done on Monday was abnormal, but the neurologist hadn't had a chance to completely look over it. Hopefully I will get to speak with him this afternoon. The endocrinologist will speak with me today about the thyroid tests that were run last week. I also hope to catch up with Kellie's primary doctor today.

Since today is Wednesday, and the trend has been for us to not like the news we get on Wednesdays, we hope today will be different. We guess Kellie just likes the term "hump day". I will most likely get overloaded with more medical information today, but that is they way I like it, the more I know, the more comfortable I am.

This weekend they will test Kellie for PVL - Periventricular Leukomalacia. PVL is softening of the brain near the ventricles (fluid spaces). The softening occurs because brain tissue in this area has died. It is thought to be caused by too little blood flow to that part of the brain. There is no specific treatment for PVL. They will do a sonogram of Kellie's head to check for this on Sunday. If she has PVL, she will be at very high risk for abnormal development later on. She may have mental or motor problems, hearing or vision loss. Please pray that Kellie does not have and will not develop PVL.

On Monday evening when the three of us visited Kellie, she was pretty overwhelmed from all the things done to her that day. I couldn't get her "sats" to come up by either talking softly to her or gently touching her. Jacob however, got her sats to come way up when he sang to her. He sang "Jesus Loves Me", "Twinkle Twinkle Little Star", and "The ABC Song". Kellie really responded to him. I think she remembers hearing him constantly while in utero! We will have to make a tape of him singing and talking to her. It was like she realized he had not visited in quite a long time! He used to talk to "Mommy fat tummy" and say, "Hi Baby!" He's learning that Baby Sister Kellie is that baby and Mommy's tummy isn't fat (well, not from a baby anyway!).

Last night when we visited, Kellie was curled up in her snuggli and also had a very small quilt over her. She is able to regulate her temperature better and so she can be covered up without messing up the heater in and over her bed. It was really great to see her have a blanket over her, although all we could see was her head and one hand! She looked very peaceful. A few times it looked like she was straining to open her eyes, which we are still waiting on. I do want her to save her energy, but I long for the day she can "connect" by opening her eyes.

It is hard to believe that Kellie will be one month old in five days! Jacob's birth didn't sink in completely for me until he was five weeks old. Kellie's birth is sinking in faster than that, even though the situation isn't ideal. I am feeling more drawn to her and love her more everyday.

Thank you once again for your continued support and prayer! We don't feel like we will ever adequately get everyone thanked for their care. Please know we do care and are very grateful!

Julie

PS. We received an update on the friend's niece we mentioned. Her name is Vanessa, she lives in Iowa, this is her third baby, and she is now home. She has to remain on bed rest for six weeks, but things are stabilizing for her. Thank you for praying for her.

Also, there is a new "23 weeker" in the NICU. It is a little boy and our hearts go out to him and his family. We definitely know what they are going through. The baby is in Kellie's team (unit), so we will most likely interact with the family at some time. Please join us in prayer for them. Thank you!

Just as I suspected, I got a little information overload yesterday talking with Dr. Bloom, Kellie's primary neonatologist, as well as the geneticist/endocrinologist! I will try to keep the specifics short and to the point and restate them as best as I can (as best as I understand them!). Kellie's lungs are stable with maybe a little bit of improvement - Praise God! That is definitely an answer to prayer! We are seeing those answers more and more! She still is "very sick" as Dr. Bloom always says, but she is still fighting. Yesterday and today the trouble has been her kidneys and therefore urine output. She has stopped having any urine. They thought maybe the high amount of sedatives was keeping her from letting it go, but when they've put catheters in her, nothing, or minimal, urine comes out. So it is her kidneys, which we found out haven't been right in quite awhile - they are just too immature. Please pray that her kidney function would improve. They are giving her a "big gun" drug now that they hardly ever give to see what happens. It is a diuretic called Edecrin. She is already receiving a drug called Lasix and also some albumin for the edema (water retention). We will see what happens with this latest addition of drug therapy. Of course we know that the prayers will help!

Kellie's insufficient kidneys are also having a problem regulating her calcium and phosphorus levels. They think they see some rickets developing in her bones as well, which is caused by this imbalance and also the lack of Vitamin D. I haven't talked with Dr. Bloom to get all the specifics on this yet, but Dr. Lutz, the endocrinologist, was explaining it some. They will try to control the levels of the minerals with her IV therapy. Please pray this would stop and the levels would stabilize.

Kellie's EEG was abnormal with some "spikes". It appears that the Phenobarbital is helping with the seizures, but as of yesterday afternoon, the "PB" level was too high, so they have to back off on it for a few days. Dr. Bloom is most concerned with this seizure activity for now. Please pray that the seizure activity would stop and not cause Kellie any long-term effects. In the future, the doctors will consult with the developmental experts and make sure she gets the treatment she needs for her motor and cognitive skills.

Another big issue that Dr. Lutz discussed at length is Kellie's thyroid levels. The tests came back okay for the most part. The problem is that one of her levels is so low (T4) that it is undetectable. This could mean that there is or isn't a problem. She is so premature that she doesn't have any T4, but whether that is an indicator of a primary disease is hard to tell. They have to decide whether to treat her or not. If there is a problem and they don't treat her, it could mean serious damage to her central nervous system, including her brain development, mostly her "thinking, or IQ cells". If they treat her, with or without a problem, it can mean side effects on her metabolism and other functions. It will be a difficult decision for them to make. Please pray that the doctors make an informed decision and the one with the least amount of damage to Kellie.

Kellie is now affectionately (I think) referred to as a "Micro Preemie". I've heard the term several times over the past two days. When you compare her to the tiny "two and three pounders", she is pretty "micro". I was able to watch the nurse and respiratory technician do her assessment yesterday afternoon. I'm not sure if I was glad to watch it or more upset. They are as gentle as possible but it still makes her mad and since she can't cry she looks in agony. Also to see her flailing about is pretty rough. I was glad when they were done and had her curled back up on her belly. They also had to hand bag her air and that is pretty scary. Peter visited late last evening and watched them put her urinary catheter in and he agreed that it is unsettling to watch her in that state. We will take resting peacefully under a blanket over that!

Well, I will try and get this posted. Thank you once again for the continued prayers!

Julie

Today we had a literal wake up call from Dr. Bloom. The call wasn't necessarily bad news, but not a great way to wake up! He was calling to say it was time to start steroid therapy. The decision was made because the risks and the benefits are now equal. The therapy isn't primarily for her lungs, even though it will help them; it is for her kidney function, which has been very poor the past few days. There was nothing else they could do to "fix" her kidneys except to try the steroids. She also is having low blood sugar (hypoglycemia). A side effect of the steroids (Decadron/Dexamethasone) is high blood sugar, so the drug should help her sugar levels.

The most dangerous risk (and there are several) from the Decadron is an increased risk for infection because the drug will impair the activity and decrease the number of Kellie's white blood cells. She is already at an extreme risk for infections. The staff is very surprised that she hasn't had any yet. Twice they've had indications of them, and both times the tests came back negative (the most recent tests were three days ago). We are confident that the prayers of many and the grace of God have made this possible! Please continue to pray for protection from the infections!

Kellie really puffed up overnight! She gained 3 ounces last night after gaining 4 ounces over the previous 2 days. That put her close to 2 pounds, 2 ounces...almost twice her birth weight. The majority of this weight gain is her fluid retention (edema). She really needs to lose the fluid, and so far today she is excreting a lot, too much in fact, as a result of the Decadron. They are having to "chase" her fluids quite a bit by adjusting her feedings and IV therapy. They have to closely monitor her electrolytes, sugar, and blood gases.

Kellie will get the Decadron over a four-day period. We are already seeing improvement with her kidneys and expect to see lung improvement soon. Tomorrow we will speak with Dr. Bloom in person in depth about this treatment.

Jacob has cold symptoms again so that is messing up our hospital visiting. He is also having trouble with the upheaval in our lives. He has good days and bad days, and being a two-year-old is complicating things. Please pray for his health and understanding. We are trying the best we can to keep some stability in his life. Just when we think we have it all figured out, it all changes!

Have a great weekend! We will post more information as we get it and as we have time to upload it!

Julie

Happy Spring, and Happy One Month Birthday, Kellie!

As you may imagine, this may be long since I haven't written since Friday night! I will try to be as brief and clear as possible! Peter, Jacob, and I are all getting some kind of sinus infection/cold again, so we aren't feeling so great. This means we won't be visiting Kellie tonight. Friday night, Peter and I crashed and burned. I started running out of steam last Wednesday, and it peaked on Friday night. We made it through the first four weeks of this crisis in fairly good shape, by the grace of God, but it is all wearing on us now. We figured out the hardest part right now is the uncertainty. We usually plan our lives out months and years in advance, and now we can't plan much more than one day, if that. Kellie is still so critical that she could die at anytime. By faith we trust she won't, but our hearts still jump a little with each phone call, especially from the hospital.

While praying a few weeks back, we dedicated our children to the Lord once again. We know that He is allowing us to raise these two children of His here on earth. We thank Him immensely for giving us the opportunity to do that, and love Him for entrusting them to our care. Yesterday in church, I was so grateful for a wonderful church family and the opportunity to worship God freely. I knew that the best place to be was worshiping God in the midst of the trial. Anyone who has trials should get into a good church and surround himself or herself with God's love. Our pastor's wife was speaking about how the bigger the problems in our lives are, the more they become opportunities to see bigger miracles in our lives. (Romans 8:18 - I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.) While no one wishes sufferings on another, we (and others tested by fire) understand how it strengthens faith. There is no way we could go through this on our own, and I do not know how any one could go through it without God's merciful help. We do know that when we see the Lord God face to face, that all the trials we've gone through will be dim, and His eternal glory will be all we see. I was just encouraged by James 1:2-8

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. That man should not think he will receive anything from the Lord; he is a double-minded man, unstable in all he does.

A line from a song that was sung in church - "Gently lay your head on my chest, and I will comfort you like a mother while you rest" also encouraged us. I was reminded to just give all my grief, lost dreams, burdens, uncertainty, and fear to the Lord and let Him take it. At the same time, I am longing for the day when I can hold Kellie and comfort her. As much as I long for that, how much more does God want me to let Him comfort me?

Jacob must not have seen us reading our Bibles in awhile, because Saturday night he got all three of our Bibles, passed them out, and then said, "Daddy, Mommy, read!", and he read his, too. We realized we did need that and it was so precious that our son knew it too. He is such a sweet child, with such an amazing spirit! What a blessing we have. Whenever he sees Kellie's crib, he asks, "Kellie home?" I think he wants her home too, if nothing else than to not visit the hospital! Although today, after I changed his clothes, he said, "Hop-ital?" He was excited for once to go, but I told him not today. He seemed okay with that, but then refused to take a nap!

We spoke with Dr. Bloom for quite some time on Saturday afternoon. He said Kellie is still the sickest baby in the NICU, even with the addition of a new "23 weeker" last Monday. He said that they aren't doing any major life-saving techniques with her (obviously her care is keeping her alive - especially her ventilator), now they are in the mode of making sure she comes home with the best body possible. She is not growing as much as she should be, although there is some evidence that she is growing. Her survival statistic (survival meaning coming home) is now 50-60%. She could take a turn for the worst at any time, so we trust she will continue on the uphill path to recovery. The steroid treatment is helping her kidneys, but not helping her lungs as much as they thought it would. She may have some kidney failure that will need some long term, low dose hydrocortisone (a different steroid). Only time will tell.

Kellie had a fairly good weekend (being relative). She was weaned some on the ventilator settings and she is peeing like a faucet - up to ten times the amount she should be. Her weight dropped six ounces in two days, and that has helped her fluid retention immensely. The medical staff is challenged to keep her intake in line with her output, and making sure the intake is what it needs to be (regarding electrolytes, sugar, lipids, etc.) She has been restless at times, but they cannot give her any more of the sedative Nembutal, because it is a barbiturate like Phenobarbital, and her "phenobarb" level is too high, and has been for days. The alternate is to give her Ativan - a seizure drug. It helps with the sedation and her seizures, but doesn't help sedate her as well as Nembutal. She needs to stay calm so she can oxygenate well and also so she uses her calories to grow.

Soon we plan on posting all the specific prayer requests we've had and when we've seen them answered. We just have to organize it all. For now, here are the specific prayer requests we have: that we would not get discouraged and worn out, that we would all heal and stay healed of our colds, that Kellie would have greater growth, that she would continue to be protected from infections, that her seizures would stay under control, that she continue to be weaned from the ventilator, that her kidneys will function better and stay healed, that she would be protected from the side effects and risks of the steroids, and that she will continue to be protected from any long-term problems.

Many have asked how they can help us financially. Hopefully for now, Kellie's insurance (my policy) will cover her mounting bills, which are running about $10,000 a day. Due to her extremely low birth weight, she qualifies for Supplemental Security Income (SSI) from the Social Security Administration. Qualifying for SSI also qualifies her for Medicaid; both are effective for the duration of her hospital stay. Medicaid should cover anything her insurance doesn't cover, so we shouldn't have to pay her deductible or anything "above allowed charge". For now, we trust the bills will be taken care of. Once Kellie comes home and isn't covered with the additional plans, then the situation may change. If she needs home health care, oxygen, monitors, etc, the insurance may run out. We will cross that bridge when we get to it. She will use up at least half of her lifetime maximum benefit before she comes home. We are very thankful we have the coverage that we do!

The only financial changes that are happening are the increased costs of gasoline to go to and from the hospital, increased long distance telephone bills (and soon, a cell phone bill), and increased eating out and convenience foods. We truly appreciate all the offers for financial help. We should be able to carry the burden for now!

Thank you once again for your support!

Julie

After a fairly good (being relative) weekend, Kellie was very restless Sunday and Monday nights. That makes it hard for her to keep her oxygen saturations (sats) up - they should run 85-97. Well, I just found out that she had a very bad night last night. Her sats dropped into the teens! The medical team had to hand bag her air for 40 minutes before she came back up! Then this morning in one hour she sat'ed into the 60's four times. Then she sat'ed into the teens again, and they had to hand bag her again - this time only for 5 minutes, but that still is bad. It is hard to say what damage the low oxygen is causing her.

They are not sure what caused this all of a sudden. She normally has episodes of low sats whenever she moves a lot, or when they have to work with her (suctioning, diaper changes, giving meds, drawing lab, etc), but not normally when she is just resting. The doctors haven't done rounds yet this morning, so maybe they will come up with some answers. Kellie's nurse thinks there could have been some big seizure activity. Kellie hasn't received any Phenobarbital for six days because the level in her body was too high. Today it is back down, so maybe some doses of Phenobarb will help her out. They gave Kellie 2 doses of a sedative called Nembutol (which usually calms her right down) and 5 doses of a seizure and sedative drug called Ativan all from Midnight to 7 am. The drugs didn't help.

PLEASE PRAY THAT SHE WOULD KEEP HER SATS UP AND THAT THE MEDICAL STAFF WILL FIGURE OUT WHAT IS WRONG! PRAY THAT NO LONG-TERM DAMAGE HAS BEEN OR WILL BE DONE FROM THESE EPISODES!

Thank you so much! On the upside, we got great news yesterday that the sonogram of her head still showed no bleeding, and also showed no evidence of PVL (Periventricular Leukomalacia), or dead areas of brain tissue that can cause abnormal development. This is a major answer to prayer. Also, she is still free of any infection and she is tolerating higher amounts of feedings. She is also starting to take some breaths on her own. These are all positive things.

Thank you for your prayers once again!

Julie

I wanted to update you about Kellie's day. With the prayers of the faithful, she pulled through another scary day on the down side of our roller coaster ride.

We went to the hospital at noon and stayed with Kellie for a few hours. She was doing much better when we got there. Her oxygen saturation was better, even though her oxygen requirement bounced around from 70-100%.

We had a small scare when we got there because her nurse had just found some blood in her diaper. She and the doctor weren't sure if it came from her urine or from somewhere on her body (since she gets poked so much). Given the current state of her kidneys, the doctor wondered if it was from a damaged area of a kidney. He does suspect there has been some damage in her kidneys. The great news for now is that no other diapers today have had traces of blood. They will watch for it very closely.

Thank you for joining us and others in caring and praying for Kellie! We are sure that the prayers truly helped today. By the time we got to the hospital, I'm sure most of you had read the message and prayed. She really did have a great turn around. This is just another example of how the prayers are helping her! She is a fighter by the grace of God and we are very happy about that!

She is receiving Phenobarbital again for her seizures and their prevention. This should help her relax and keep her saturations up. Hopefully the level in her body will not get so high that they have to stop giving it to her. It stays in the body for quite some time.

Kellie did crack one eye open while we were there! As you know, we were waiting for this time for her to open her eyes since her eyelids have been fused. This was a great happy time for us in the midst of the scare. God was letting us know He is still in control! Thank you once again for being faithful! God bless you!

Julie

Just a quick note on how Kellie did overnight. She is still having episodes of desaturations (desat's, or blue spells). They did have to hand bag her again last night a few times but not for very long each time. This morning her blood gases were a little "off" so they increased the pressure on her ventilator. We want to see them decrease her pressure over time, but maybe the increase will help her sat better today. For whatever reason, there hasn't been much improvement in Kellie's lungs from the steroids. At least it did help her kidneys. Her urine output is still twice where it should be. We hope it stabilizes and stays right where it should and doesn't stop again! They still haven't seen any more blood in her diapers. Speaking of diapers, they had to go up in size on her diapers over the weekend. No, not because she has grown, but because she was filling up the tiny ones so fast that they had to change them too frequently (thus, making her mad), and since they were leaking, they couldn't get an accurate weight to chart her output. These next size diapers more than cover her entire body! Yesterday we watched the nurses weigh her - on the diaper weighing scale! Any babies under 1000 grams get weighed on that scale, which is smaller than my food scale!

I have forgotten to tell you a neat story. Saturday when we visited NICU, Kellie had a beanie baby by her bed. I didn't recognize the name on the card with it. The nurses said a little 8-year-old girl named Kaitlyn Adams donated her beanie baby collection to the NICU babies! She wanted to share her toys since the tiny babies didn't have any. She even bought some with her own money! Well, she had a special beanie named "Hope". Hope is a kneeling, praying bear. Kaitlyn wanted to give it to the smallest, sickest baby in NICU. Kellie is that baby, so she has a little bear that to me represents all the people who are so diligently praying for her! The name of the bear fits, too! It was very special and sweet of Kaitlyn to bless the babies (there are around 35 of them), and it was such a blessing to receive that bear! I was in a store yesterday that had beanie accessories, and I'm pretty sure Kellie could wear the clothes made for beanies. The Fisher Price Briarberry Bear dress that a friend gave Kellie could fit her too. The doll outfits that one of Kellie's nurses bought her would still be too big - they are for a 15-17 inch doll! I bought Kellie a pair of beanie shoes that are too big for her, but I can keep them and tell her that at three months old (or so), she could have worn them! Little did I know when playing with my dolls growing up that I would have a baby as small or smaller than them!

Julie

Okay, this will be long again. Please bare with me, I have to try and make some sense of this! Yesterday I was pretty numb and needed a break from the computer and also from re-telling Kellie's story. I saw that our hit counter wasn't going up very fast, so I decided to wait until today.

Wednesday afternoon I visited Kellie while Jacob was playing at a friend's house. She was still having "blue spells" off and on, needing manual breaths from the ventilator and also some more hand bagging. Just before I started to leave, while I was reading through her chart, I noticed that her O2 saturation suddenly dipped into the 50's and kept dropping. The nurses were busy with an irate father and didn't notice. Thankfully I did and was able to alert them. Kellie kept dropping while the nurses called for the RT's (respiratory technicians), the resident, and Dr. Bloom (who thankfully was the doctor on call that day!). The resident was obviously nervous and asking Dr. Bloom to hurry when she was talking with him on the phone. The nurse was running around trying to get Kellie the proper dose of Ativan, the RT's couldn't her sats up with bagging, and all the while I was sitting around feeling utterly helpless and out of control. It didn't help that when I walked into the nursery earlier that day I didn't recognize anyone on the medical team. With spring break all the staffing was turned topsy-turvy, and even though Kellie's has had at least 30 different nurses taking care of her over the past month, I still didn't know anyone. Not that I don't trust new nurses taking care of her, but they aren't as familiar with her as her "regular" nurses, or even us (we frequently have to tell new staff about her likes, dislikes, positioning, etc.)

While on the phone with Dr. Bloom, the resident read Kellie's chart incorrectly about some doses of medicine and I knew it she did. I didn't speak up, but a nurse realized the mistake. Also, since Kellie's primary nurse was new to her, she had to calculate what dose of Ativan Kellie should have, which took up precious time. When Dr. Bloom arrived he asked what happened. The RT's didn't know and Kellie's nurse was running around, so I ended up having to answer him - that all of a sudden, not due to seizure activity or stimulation, her sats dropped. I was just a little upset that the nurses weren't paying attention to Kellie's monitor beeping and her "blue light special" (Peter's term) flashing. I'm very glad I didn't leave when I started to.

Anyway, upon Dr. Bloom's arrival, he listened to Kellie and decided her endotracheal tube (ET) sounded like it was out of place. He decided to get a new ET into her. This is a very delicate, slow process with Kellie because of all the tape holding the ET in place. Her skin is so frail that they can't just get in there and rip it off. While they were working on her, I couldn't see anything because there were four people around her. All I could do was continue to watch her monitors take nosedives. I was hoping that they were reading incorrectly due to the activity. I learned later that they were giving a true picture of the situation. I was doing fair until I saw her heart rate (HR) drop to 53. We had been told the day before that when she has blue spells (cyanosis) that as long as her heart rate is above 80, they will keep working until they get her oxygen saturation up. So seeing the HR in the 50's and dropping was the last straw. I couldn't even watch the monitors at that point. My "flight or fight" instinct tried to kick in, but since I was frozen I couldn't run away, and I wanted to do all I could to fight, which amounted to sitting there crying and praying, pleading with God to turn it all around. We know that Kellie's life is in such a fragile balance at all times, but to sit there and watch her so close to death was more trauma that left me even number. Of course Peter didn't like hearing about it, either.

Later that night I wondered if things had been as bad as they appeared. After talking with Dr. Bloom, I learned that they were. He said the monitors were functioning, that all the staff was very tense (I could tell), and that my response was appropriate. While in the middle of the crisis, as soon as he could, Dr. Bloom let me know that when they pulled out the old ET, a huge clump of very thick mucus came with it. I saw it and wondered how it fit in Kellie's tiny trachea along with the ET. Dr. Bloom's hunch is that the mucus had been building up for awhile and may have contributed to her many blue spells. Then it must have suddenly slipped to the bottom end of the ET, thus blocking any air exchange to and from Kellie's lungs. (As her oxygen sats dropped, her carbon dioxide level went up). The mucus is a symptom of her chronic lung disease. She has transitioned from Respiratory Distress Syndrome (RDS) to Bronchopulmonary Dysplasia (BPD). BPD can stick around for several years, and it will be a long recovery. I may go into details about in a different update.

Kellie was started on a second round of the steroid Decadron early Thursday morning. Hopefully we will see more lung improvement with this round. The first round helped her kidneys (which still need to improve), but didn't help her lungs much. Last night Kellie didn't need any manual breaths or bagging, and her oxygen requirement was running 60-70%. This is a wonderful answer to prayer that she has stabilized in this area. She hasn't been weaned from the vent this week; in fact, her settings are higher. We will continue to keep track of this. We pray that today she could have some weaning and that it will continue to get better and better. Hopefully the doctors can keep her lung fluid and secretions from getting any worse. With another round of Decadron, Dr. Bloom really expects her to get an infection in the next week. Please keep praying like you have for protection from infections! It really is a miracle and the work of God that she hasn't had any, and we trust she won't! After the Decadron is done in 5 days, Kellie will more than likely be going on a long-term small dose of hydrocortisone, also a steroid.

I was reading my Bible Tuesday night, meditating on Psalm 91 (a suggestion from a friend who is a survivor of breast cancer!), I found a note in my Bible that brought me comfort. When our Pastor's wife visited me after Kellie's birth, she told me to write down four things I wanted to see in Kellie's life while I focused in on Mark 11:22-24 ("Have faith in God," Jesus answered, "I tell you the truth, if anyone says to this mountain, 'Go throw yourself in the sea', and does not doubt in his heart, but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours"). One of the things on my list, which was stuck in my Bible, was "Kellie will open her eyes at just the right time". Well, Kellie did that on Tuesday, while we were so worried about her. She also opened her eye for me several times on Wednesday just before her downward spiral. I clung to that as a sign of hope and peace from God. We have had a lot of those, you know - more and more signs and wonders and miracles. We are starting to feel like a broken record with our prayers to God, but we know that is what He wants us to do. We are also thanking him for all the wonderful things He has done!

Thank you again! I forgot to tell you that Kellie was exactly two pounds when they weighed her last night (I got to help!) I'm not sure if this is a weight she should be, but her edema is better, so hopefully it just isn't water retention.

Please join us in prayer for the cousin of a friend (who so graciously loaned us their cell phone for a month!). Her cousin, who is from Kansas City, 22 weeks pregnant with twins, and started having contractions while it Dallas, Texas. She is hospitalized on bed rest (head down like I was) and is 6 cm dilated. The doctors want her to hang on for six more weeks. Please pray for the safety of her babies, for her and her family's sanity and peace, and for healing for her body. Her name is Stella.

Blessings to you for your care and prayers!

Julie

Once again, I apologize for not having any updates in quite a long time. Over the weekend we tried to clear our heads by doing yard work because the weather was so nice - and it really did help us! Peter and Jacob also flew their new kite and model rocket! Peter's parents visited from Kansas City. Monday was a busy day, and then yesterday I couldn't get on the web to even get email, let alone post an update...so I took a nap instead!

First off, I want to say I hope my last post didn't sound like I was ungrateful for the medical staff. I am continuously thankful for them and the work they do. I was just upset about the whole situation and needed to blow off some steam. With as many different people we come into contact with, we are sure to not like some of them as well as others. They care about our daughter and take great care of her, but like some of the nurses say, "we are not the parents - you are!" We are Kellie's advocates for her health care and we want to make sure she gets the best care possible, especially since her life is in such a fragile balance. This week Kellie is back to her "regular" nurses, so we are a lot more comfortable.

Kellie had two really great days on Friday and Saturday. So good on Saturday, in fact, that I almost got to hold her skin-to-skin to my chest (kangaroo care). We were all set to go to the hospital to try that out when her nurse called and said that there was a new admission in the bed next to Kellie. That meant we couldn't even visit her, and also that the activity of the new baby would make her overstimulated from the lights and noise. We were going to try again on Sunday, but Kellie wasn't tolerating handling as well. We will keep trying. I figured holding her would still be a long way off, so I was really shocked when her nurse wanted to try it! I was really, really, excited. The only "holding" I've done with her is lifting her via a cloth diaper when they've weighed her or changed her bedding. She really is tolerating being handled and messed with very well now.

On Sunday, Kellie got to have a pacifier and she loved it! The nurse said she was "going to town" on it. I'm not sure how she did it with the vent tube in her mouth, but since she's a fighter, she figured it out! The pacifier was the smallest preemie size the hospital had, and it was still huge. I went to the specialty baby store and bought her the teeny tiny preemie size and it the whole thing is one-half the size of Kellie's head! When I get the photos downloaded from the camcorder I'll try to get one on the web site so you can see! A nurse also gave Kellie a hat to help with the noise and light stimulation, but since it was for a full-term baby, it had to be taped up by three inches! So I bought her a preemie size hat. It fits around her head just fine, but it is very tall! She will be able to wear it for quite some time, but I'm anxious to see her outgrow it!!!

Speaking of growth, Kellie is now 13.5 inches long! That means she's grown two inches! Her head circumference has grown 3.5 centimeters, or 1.5 inches since birth. Her weight is 994 grams, or 2 pounds, 3 ounces - up one whole pound since birth! The 1000-gram mark is a big step for her and now she is there! This means she may get a bigger size ventilator tube soon! She has also outgrown the "size one" blood pressure cuff! Her nurse let me have it as a keepsake - boy is it small! Starting today, Kellie will get all of her nutrition from breast milk! No more IV fluid except to replace the high amount of urine output! Kellie is now eating at a rate of 6.5cc/hour. This is one and one-fifth of a teaspoon per hour - up quite a bit from where she started at one-tenth of a teaspoon per hour! She is eating a little more than the average, which is good. What a little piggy! That is why she is having true growth now. She also isn't spitting up much of the food like she was in the past.

We did post some new photos on the site in case you didn't notice. One is a close up of her hand, one is Peter and Jacob by her bed, one is a close up of her face (drooling milk out - but she looks like a real baby spitting up like that =) ), and one is the first photo we have of her opening her eye. Yes, it's not very far open, but it is open! Her nurse tried to get her picture with both eyes open on Sunday, but by the time she got the camera, Kellie had closed them of course!

We are still trying to get the list of blessings and specific answers to prayer written up. We will most likely post it to the site under a different file name. As you may know when printing out this file, it is pretty long. You can just print out certain selections of it if you want. In my Word file, this is now 58 pages long. I will definitely have a book when this is all over! The blessings journal will be a long list, too, and most likely we still won't have it all covered!

Kellie's health is doing pretty good. She finished her second round of the Decadron steroid on Monday and then started on a low maintenance dose of Hydrocortisone (also a steroid). Tuesday she also started on some thyroid medicine and she will get it for five weeks. The Hydrocortisone and thyroid medicine will hopefully slow down her urine output, which until this morning was 10-20 times higher than it should be. This morning she slowed down quite a bit, we just hope she doesn't stop again! Please pray for continued healing of her kidneys! If the medicines don't stop the high urine flow, there will be another test they will run. This all has to do with kidney and thyroid function, and also aldosterone hormone and anti-diuretic hormone. We will let you know how this turns out.

Kellie is still having swings in her oxygen requirement and also her ventilator settings. She is having slight improvements with her lungs, though! This is a true answer to prayer. The other huge answer is that she still hasn't had any infections. A week ago Dr. Bloom expected one within the week! She is definitely protected by prayer on this one! She is at such an extreme risk of catching one! Please keep praying!

Please also pray for our strength! Jacob is doing much better now, mainly because he is well and has settled into a new routine. We are just trying to keep ahead of the "snowball". I spent four hours late Friday just catching up on bills and other paperwork. Now the insurance forms are coming in and they are all messed up - one more headache we don't need! Thankfully there is a nurse liaison at the hospital whose job is to fight with our insurance company! 

Please keep checking this site for the updates! Please know that no news means there isn't anything critical. If there were, we'd let you know ASAP so you could pray. For those of you who have emailed us, you are in the address book so we can get you urgent information (like last week's scare). If you check this site and want to be updated, email us through the "email me" button on Kellie's page and we will add you to the list! Thank you once again for the prayers! They really are working, as you will see when we get the blessings page typed up!

Julie

YESTERDAY WE HELD KELLIE AND ROCKED HER!!!!!! Yes, after 39 days of waiting, we were able to hold our precious daughter in our arms!!! Kellie's Daddy was honored with holding her first!!! Then Mommy got to hold her, too!!! We were able to rock her and talk to her softly. We each held her about 15 minutes! She handled it great once she was in position in our arms. It is quite a chore for the medical staff to move her and her numerous tubes and wires, but oh, do we appreciate their effort!!! =) Kellie's primary nurse, Vickie, had her all dressed and bundled up when we arrived yesterday. This was Kellie's first time wearing clothes, too!! Vickie had to search all over for an outfit that would fit her. Too bad I hadn't left her doll clothes at the hospital (I'm going to take them there now!). Vickie also dressed her in the hat I bought for her. I fixed up the hat with ribbon and a "small" bow (it is huge on Kellie).

Kellie was also bundled in some blankets, which made her look a lot bigger. Peter commented though that while holding her, you really get an idea of how small she really is - she seems smaller than when she's lying in the bed. We both were and still are glowing about getting to hold her. It was an emotional time for us and also for Vickie and the other staff! Peter said holding her was like a first kiss and ranked it with our first kiss. I snuck in a kiss on Kellie's forehead. I haven't been able to kiss her until then because I am too short to reach her in her bed. In fact, we both are too short to even take good photos of her at times...we have to hold the camera in the air! We didn't do skin-to-skin contact with Kellie because she probably wouldn't have tolerated both of us doing it. Since she was bundled we both could hold her and not worry about her temperature - she stayed really warm!

Kellie's carbon dioxide level rose a little while we held her, so we reluctantly let her go back to bed. Before Vickie undressed her, I decided that Kellie should get to wear the doll shoes I bought for her. After all, she was wearing clothes and a hat, she needed shoes! Peter was cracking up and feeling sorry for Kellie...and he sure didn't want her to start the "shoe thing"...he says she will have enough shoes the rest of her life!! I figured, why not start her off now? =) (She has to keep up with her Aunt Kris.) Peter said Vickie and I were playing dress up - yes, we were, and loving every minute of it!!! She slept through the whole ordeal, but she did crack one eye open while getting undressed as if to say, "are you guys done yet?" Once Vickie got her all snuggled up on her belly with her had in her mouth, Kellie didn't move for quite awhile - we wore her out! Later that day she did need to be turned up a little on the vent settings, but today she is being slowly weaned back down as she can tolerate it. Yesterday and today her oxygen requirement has been as low as 40%!!!!!! Our goal is 21% (room air). Her carbon dioxide levels are the thing that is high now.

There are three new photos on the site: one of Peter holding Kellie, one of me holding her, and one of Kellie "all dressed up with no place to go!"...well, except Daddy and Mommy's arms!!!! The first two photos are dark since the room is kept dark and they were taken with the camcorder. When we get the still (regular) photos back, they should be better since it has a flash attachment (something we realize we need for the camcorder). The third photo has a blue tint because we turned on the florescent lights above Kellie's bed to get better lighting. I am anxious to see how the still photos turn out since we got some good close-ups. When Jacob saw the photos last night, he said, "Daddy, Baby Sister Kellie hold you!" Jacob has really wanted to see Kellie's eyes open since he saw those photos; now I'm sure he will ask to hold her! I bet he will want to give her a bottle since he did that with a friend's baby and his "big brother" books talk about it. We will just have to teach him patience as we learn it too!

Kellie has maintained a feeding level of 6.8cc's per hour for a few days. This seems to be giving her some slow weight gain. Yesterday she was 1000 grams (one whole kilogram!) and today she lost 3 grams. So she is about 2 pounds, 2 ounces. Her urine output is still higher than it should be, but at least it hasn't stopped! She is pooping quite well also! (If she only knew how we discuss her bodily functions!) She doesn't drool out as much breast milk now.

Please continue to pray for protection from infections. Please pray that Kellie can continue to be weaned back on her ventilator settings. Pray that the doctors will figure out the urine problem and that it can be healed. Pray that Kellie will continue to have good growth. We continuously thank God for all the wonderful miracles He is doing in Kellie's life and in ours!

Thank you so much once again for standing with us in prayer for our sweet, tiny daughter!

Julie

I just got off the phone with Kellie's nurse, Vickie. Kellie is very red today and is swelled up and her limbs are hard. This may be a symptom of an infection somewhere. They have started some blood cultures to check for infection and have started Kellie on three antibiotics. The reports from the cultures will come in at 12, 24, and 48 hours. One of the biggest risks for Kellie is a yeast infection, which could be fatal for her. Please pray that the symptoms she has are not from an infection! She hasn't had any yet, and everyone has prayed for protection from infection. Please keep doing that! Thank you!

Oh boy! I think the past 24 hours have been the worst two extremes we've had on our roller coaster ride so far! And just like at an amusement park, we are feeling sick to our stomachs! We just found out that Kellie's CBC (complete blood count) does indicate she has an infection. We just went from the complete joy of holding her to the fear of losing her again! We won't know for awhile what type of infection it is and where it came from. She is at such a high risk with all the tubes going into her and all the needle sticks she gets. Also her underdeveloped immune system - which is even working less due to the steroids - can cause her great trouble. Please pray that it is a small, easily treatable infection and nothing very serious. Pray that the antibiotic treatment will work quickly and that it will be the correct treatment. Please pray for our peace as we wait out the results! Thank you once again!

Well, to determine how best to treat Kellie, they ran two blood cultures (one from her CVC line and one from a vein). They grow the cultures for 12, 24, and 48 hours so they can see what it is. It's been over 24 hours and so far nothing has grown. We're not sure if this is good or bad. In one way it seems good because maybe there is nothing there to grow and the infection has gone away. In the past they thought bad things were going on, (head bleeds, etc.) but when they checked it out, everything was normal (praise the Lord!). Maybe this is another one of those things. On the other hand, it is possible that something is going on except they don't know how to treat it because they don't know what it is.

We'll keep praying that this will simply go away without any long lasting effects. You probably think we sound like a broken record (or CD now days) asking for prayer all the time. I know I feel like a broken record continually praying for Kellie's health. Sometimes I feel that if I just had more faith, I wouldn't need to keep praying (repeatedly for the same situation) because one time should do it. Then I was flipping through my Bible and came across a heading that read "Why Pray?" in Luke 18:1-8. Jesus told a parable about a widow who kept bothering an unrighteous judge for protection. The judge got tired of this widow bothering him day and night so he gave in and did what she asked. Jesus said if that's what an unrighteous judge did, then how much more will our righteous God bring about justice for His elect, who cry to Him day and night? He will bring about justice for them speedily. God wants us to cry to Him day and night. He wants us to turn to Him in everything we do. God knows that if we keep the communication line open with him, he can do great things in our lives. GOD IS GOOD!

Julie let me write the update today since I haven't written much in this 61-page document. I just want to thank everyone for all your thoughts and prayers for our family. This ordeal has been extremely difficult and I'm thankful for everyone's support. It really has given us strength to know that we can share our situation with others and we don't have to face this alone. Please continue to remember the other families we mentioned earlier.

Peter

I had an old Imperials song come to my head yesterday that I would like to share with you. It really has an appropriate message. It is amazing how the Lord brings back memories of old songs (this one is over 20 years old) at just the right time!

"Praise the Lord"

Words and Music by Brown Bannister and Mike Hudson

1978 by Bug and Bear Music and Home Sweet Home Music

Sung by Imperials

Good morning! It is a great morning for us, as we celebrate that nothing grew from Kellie's blood cultures! The 12, 24, and 48-hour results were all negative! The tests will also be read today at 72 hours just to be sure. It is very good news for us and the medical staff is amazed once again. On Friday, Kellie looked and acted like she had an infection, and her CBC test indicated an infection, but once again she's pulled through a bump in the road! Praise God! They stopped her antibiotics yesterday.

Twice on Saturday, Kellie woke up and looked around for about 30 minutes while her nurse assessed her. She is now able to open both eyes together! When I visited her Saturday evening, she woke up again and it was fun to talk with her face to face. We could tell she was feeling better because she had so many alert times. I watched the nurse weigh Kellie and change her bed. Kellie has now moved up to the "big girl" scale instead of the diaper scale since she now weighs over a kilogram (1024 grams - 2 pounds, 4 ounces). After all the activity, Kellie had "spaghetti bed" - a term the nurse used for all the wires and tubes being tangled up! Once the mess was cleaned up, Kellie was all snuggled up. She was lying on her side with her eyes open so I was able to put my hand on her and sing to her. She really seemed to like it. She also had her pacifier and liked that also! One song she really seemed to like, and I did too, was "Praise Him, Praise Him". It was a song I hadn't sung in quite some time; in fact, I don't think I've even sung it to Jacob. I'm sure it was the Lord laying it on my heart! It's a "kids" song and if you don't know the words, well, I'm going to give them to you....

The song is so simple yet is so profound and it gave me peace. It also did my heart good to sing to Kellie. In spite of my singing ability, I got her back to sleep with out her desat'ing! =)

Yesterday Kellie turned six weeks old! If our NICU experience turns out to be an average stay until her original due date (June 18), then we are one-third of the way through it! That still means we have a long way to go, but Praise God we've made it this far! Last night Kellie wore socks for the first time! I bought them for her, and even though they were preemie size I figured they would be way too big. They actually fit her, and the extra room was good because it made them a little loose. Her legs look so skinny with those socks, just like they did with the doll shoes on!

Kellie's urine output is still high and so they have to replace the extra fluid she loses. Other than that, she is not receiving any other nutrition intravenously. They did start increasing the calories in my breast milk by mixing equal parts of it with a high-calorie formula. Kellie has been weaned back on the ventilator little by little in the past few days. The great news is that she is having fewer and fewer desaturation spells and also her oxygen requirement has been running quite a bit lower. She got as low as 47% over the weekend! She's been averaging 60-80% even on the weaned settings! Remember her goal is to get down to room air, which is 21%! A couple of the desat spells she had also lowered her heart rate, which is scary, but she recovered well from them. Today Kellie's thyroid function was tested again. In about five days we will know those results. Soon she will be tested for sensitivity to Anti-Diuretic Hormone to try and figure out the urine problem.

Thank you for the continued prayers! We are absolutely certain that God is listening and answering them! Below is a song that has ministered to me over the past few days. It is based on Psalm 91 (which I mentioned in an earlier post), Psalm 62:5-8, Mark 12:29-30, I Peter 5:6-7, and John 3:30. A group named Sonic Flood wrote it and sings it.

Julie

I just wanted to let you know that Kellie's 72-hour blood cultures also came out negative! Also, last week I forgot to post this verse. It was on the Hallmark card that I gave Baby Daniel's family. It really says it all....

We still are not sure why we were chosen as a "special father and mother", but whatever the case, we do know that God has us close to His heart as we are challenged. He is giving us strength and teaching us patience. The small steps Kellie makes are so rewarding to us and make us long for more!

Just like when Jacob was a newborn, it took me five weeks to really believe that Kellie is mine. I remember nursing Jacob at five weeks old and finally feeling connected to him, even though I knew that I carried him in my womb and delivered him! I guess it's all the bonding concept. Both times it has really seemed like a dream! Jacob because he was the first and we waited so long for him, and Kellie because it really is like a dream...a bad one, but such a good one, too! I think that holding her, buying things for her she can really use (hat, pacifier, socks), and talking and singing while her eyes are open have really let it all sink in for me. I am so blessed to be a mother and I daily thank God for the opportunity to raise these two children for Him.

Julie

I apologize for not having any updates all week. I am trying to keep my head above the water with all the things to do at home in addition to visiting Kellie. Time is such a precious commodity for us right now! We are so behind that Peter had to take off from work on Wednesday just to catch up a little. This message may be a little choppy since I'm doing it in a hurry.

Kellie still doesn't have any infections! She is steadily gaining weight at one-half to one ounce per day. She is now 2 pounds, 6 ounces! She also grew another half inch in length the past week! She looks big to us, even though she is still so tiny! She has been weaned down some on the vent. She has started having bradycardias ("bradys"), which are drops in heart rate. They seem to correspond to desat spells or times when she is angry or filling a diaper. The bradys are a sign of maturation for her, but we don't particularly like them! As long as her heart doesn't stop we'll be okay! She was accidentally extubated Wednesday night, which means her endotracheal tube slipped out some. She had a major desat and brady spell, and the nurse noticed what happened. They quickly reintubated her and she recovered fairly well. If they wouldn't have moved as fast as they did, she could have died. She had another head sonogram Wednesday and it was still normal - no head bleeds and no periventricular Leukomalacia! That is great! Her thyroid tests also came back normal this week! She is still eating great and getting increased on her amount. She is getting it out the other end really good, too! She now receives Vitamins A, D, and C supplements as well as the formula supplement for increased calories. Praise the Lord for all of the great things He's done in her life!

Kellie has been diagnosed with Diabetes Insipidus (most medical books explain this if you are interested) This is what caused her very extreme urine output. Her pituitary gland is not producing enough Anti-Diuretic Hormone (ADH). She is now receiving synthetic ADH - a drug called Desmopressin. It seems to be working, and the doctors are just trying to figure out what dose she needs. They have to monitor her urine output and electrolytes closely.

I was able to hold Kellie "skin-to-skin" on Wednesday for the first time! That was really neat! She was so warm and tiny! She was given a sedative before our snuggle session, and between that and lying on my chest, she relaxed - too much! She forgot to breathe and she let the ventilator do all the work, so she had to be given extra manual breaths to keep her sats up! Next time we will try it without the sedative!

Jacob was really cute when visiting Kellie yesterday! He was so interested in all her body parts. He wanted to, and did, touch her fingers, play with her toes, feel her head and ears, look at her belly button, and kiss her. He really loves her. He also thought she needed to play with her "Hope" beanie baby! I had to explain that she couldn't play with it, just look at it. So he made sure it was in just the right place for her to look at! I put Kellie's hat on Hope and he didn't like that at all. He will tell you so, too! He'll say, "No, Baby Kell-yee's hat, no like on Hope bear!" Once I put Kellie's hat on her head, he was very happy and satisfied!

Kellie occasionally gets to wear shirts and gowns, although they swallow her up! She also gets to be snuggled under blankets more and more. She has graduated from her "house", that is, the temperature shield that was over her...the Plexiglas and plastic wrap box.

Thank you for your continued care and concern! We can't do it without you and the Lord on our side!

If you have any specific questions about her status at any time, please feel free to email us! We really like the personal notes we've been getting...especially from those of you we don't even know...the ones from all over the country! It is really neat to find out how people found out about our situation and our web site! We don't even have this on any search engines or link lists (that we know of!)

We will continue to post updates as we find the time. We will try to get some new photos updated soon also!

Happy Friday! Julie

In case you didn't notice, there are seven new photos on the site! We still need to put them in the correct order. Five of them are at the bottom, and the other two are at the right of the fourth row. We ordered a light for our camcorder so we'll get better exposure when the NICU lights are turned down. When we get it, it should make the digital photos better quality; they tend to get grainy. The still photos come out fine with the flash. I told Kellie to get used to the flash... she will see it a lot! Between our camcorder, our still camera, the disposable cameras we leave for the nurses, and the NICU Polaroid camera, Kellie is not hurting for photos! Just like full-term newborns who change so much in their first few months, Kellie has changed dramatically! If you've forgotten (we had, and so had the medical staff), take another look at her earlier photos and then look at the new ones! She actually looks fat! She has more than doubled her birth weight! She is now 2 pounds, 8 ounces!

The new photos include the following: Peter holding her for the first time; wearing her first outfit (hat, shoes, and all); Kellie's hand on her face; Kellie with both eyes open and looking around (check out her hair!), me holding her skin-to-skin for the first (and only, so far) time; wearing a 0-3 month size t-shirt (she's swimming in it); and Kellie comfy on her back (and fat!). In a couple of photos you can see how flat and folded her ears get. They have grown so much, and they get flat and folded when she lays on them. Sometimes we forget to fix them for the camera, and then they look funny!

Yesterday Kellie turned 7 weeks old! I held her for an hour on Saturday, and it was so nice! Even though she's only 2.5 pounds, my arm and hand fell asleep because once I'm in position, I can't move because of her vent tube and all the monitors. On Sunday, Jacob held her with Nurse Vickie's help. He seemed to like it and was very careful and concerned. He saw her with one eye open, it's something he's been waiting for a long time. When he saw her like that, he almost poked her eye out, but I stopped him in time. I had to let him know she isn't a doll or stuffed animal. Now he goes around and says, "Kell-yee's eye, no touch, careful!" Vickie has Jacob all set up with a tape player, complete with a Sesame Street tape and headphones! She's also given him three different size syringes - great for popping and squirting water! It's no wonder when you ask Jacob, "who is at the hospital?" he says, "Baby Kell-yee...and Bickie, Nurse Bickie!" Yesterday when visiting Kellie, he was dressed in his scrubs and carried his doctor kit. The doctor said, "my goodness, these residents get younger and younger all the time!"

On Sunday, my mom was able to hold Kellie for the first time. She hadn't seen Kellie for five weeks because of her broken leg. Of course she was surprised to get to hold her and very happy about it! When I was with Kellie on Saturday, she sneezed several times. That was cute to see, but it was hard for her with the vent tube. She also yawned a lot and sucked a lot on her pacifier. She likes it when there is someone available to keep it in her mouth for her! Kellie obviously had a great weekend, or we wouldn't have been able to handle her so much. Last night it all caught up with her, and she had to be turned back up on her vent settings. That's how it goes with the vent - up and down. She had to be bagged twice overnight, and she had one brady (heart rate drop) into the 20's - yikes! Hopefully she will pull out of the rut today.

The diagnosis of Diabetes Insipidus means that Kellie's pituitary gland isn't functioning quite right. This may be a temporary problem that she will outgrow, or it could also mean something chronic. Only time will tell. For now, the problem can be controlled with the Desmopressin. The drug is very strong and it is hard to get such a small dose for her, but so far all is going good. The reason she had a sonogram of her head last Wednesday was to check for tumors on her pituitary gland, but none were found. She also had her first eye exam on Wednesday. I've left a message for Dr. Bloom to call us about this today. We weren't able to talk to him about it on Friday night. We are anxious to find out the results, because reading her chart; it's not too encouraging.

Saturday, Vickie told me there was yet another "23-weeker" born at Wesley. That makes three within seven weeks - Kellie, Daniel, and this new baby. Usually there are not this many micropreemies at one time. Hopefully we will meet this new family soon. All I know is they are from Wichita and the mother is a respiratory therapist who may know me from my seven years of volunteering at Via Christi-St. Francis. Daniel's mom is a nurse. If I was a nurse or RT, I'm not sure if it would help or hurt for the situation! The nurse Kellie had over the weekend asked me if I was a nurse! I guess I'm absorbing quite a lot of this medical stuff! The research I do and the notes I take are my way of dealing with it. Some parents just want to know if their baby is alive...I want to know it all: vent settings, urine output, blood gas levels, electrolyte levels, the number and severity of desat spells, test reports, etc. Peter and I make a good team because he understands the chemistry and mechanics, and I understand the biology and nutrition. I guess our college education in those areas really is getting used for something!

Speaking of the prayers, I was driving along Saturday and this song played on the radio. After hearing it, I said to myself, "yeah, that is it!" The song is by the group DC Talk.

Yes, we know that God is watching out for all of us, and He is giving us signs and wonders with Kellie's life! He is also there to let us know He is in control. He is so powerful and wonderful! Praise Him! He worked miracles in the time of Christ, and He works them now...for whatever the circumstance! It is not just religion or cosmic forces - it is our Almighty God! He loves us more than we could ever know. He loves Kellie more than we do!

Julie

You can tell we've had a fairly good week since we haven't written since Monday! We are finally able to breathe a little as Kellie is, for the time being, in a growing and healing stage. While her week wasn't as good as last weekend, ventilator wise, she has been stable. There hasn't been much to write about! She has been slightly weaned on her vent settings and had her feedings increased a little.

I keep forgetting to mention something every time I write, so I'm going to do it now while I'm thinking about it. Many of you have asked in the past how you can help Kellie. Well, you can indirectly help her and others by donating blood. Kellie has had about 15 blood transfusions and various other blood products. While she only receives about three teaspoons at a time, someone had to donate the blood for her. I haven't been able to donate blood in recent years due to several things, but once I can give again, I plan on it. One pint of blood can help many people!

I was thinking this week how I had the privilege of meeting my daughter 17 weeks earlier than I thought I would! While most mothers at this stage feel their babies growing in the womb, I get to watch my daughter grow! It is a toss-up, I think, between feeling and watching! I am enjoying watching her change and grow! I remember how impatient I was with Jacob's pregnancy; I just wanted to meet him. Not knowing his gender made it all the more exciting. We didn't know Kellie was a girl until five hours before her birth and I was excited to meet her, too, even though I hoped I would get to wait a few days or weeks longer!

Kellie is getting very, very short eyelashes, but they are curly like Jacob's. I'm sure they will be beautiful when fully grown! To me she looks like Peter, but others don't see it. She also has so much hair that she is getting bald spots on the back of her head! In order to keep her head round and not get "pancake head", the nurses turn her body and head frequently. Well, little Miss Kellie has decided she doesn't like to lie on the back of her head! She is old enough and strong enough now to try and get her way! She will pull to either side when laid like that, but it is a little hard to drag the vent tubes with her! She gets mad about that and other things! She can really show her temper! Even though she doesn't audibly cry, she cries. She turns purple and red and makes faces and clenches her fists until her knuckles are white!

A family who heard about us via our diaper service blessed us this week. They brought us some yummy chicken and noodles! It has been really nice to have a decent meal that we can just heat up and eat with a salad and bread! Many thanks to them for being so kind! We didn't even know them until they delivered the food! Also, one of my Dad's co-workers blessed us with some cute preemie clothes. They are used so they are already soft - the way I like them. We sincerely appreciate everything everyone has done from cards, calls, emails, hugs, and prayers!

Kellie was dressed in her doll clothes yesterday that Nurse Vickie got her. We waited too long to try them on her, though, as they were just a little short. She couldn't keep one of the outfits buttoned because it was messing up her CO2 monitor. It was cute to see her in clothes that did fit, though! Vickie has started digging out the hospital's clothes that Kellie can wear. Kellie does wear her hat quite often. I bought her a doll-size Easter dress. Maybe that and her shoes will fit next Sunday! She'll just need a little purse! She will have to have more pictures taken!

The only medical thing that has changed this week doesn’t have to do with Kellie. Well, not directly. Since I have been exclusively pumping for almost eight weeks now, my milk supply is drying up. Women were not designed to pump this long, even with the best of pumps! Since I've been messed up hormonally in the past, it really is no surprise. Even though our deep freezer looks like a "Got Milk?" commercial, we don't want to run out of supply - from a nutritional and financial standpoint. The good news is that since Kellie is getting a ratio of one-to-one formula and breast milk, it will stretch mine out longer. Last night I started a medicine called Reglan (metoclopromide) that is normally prescribed for gastrointestinal disorders, but it has a side effect of increasing the hormone prolaction, thus increasing milk supply. Hopefully it will get me back on track until Kellie can start nursing - which won't be until she is off the ventilator. How long will that be? We don't know. One more reason to pray for speeding healing of her lungs! The way Kellie sucks on her vent tube and her pacifier, she will be more than ready when she is able!

I have met the parents of the new, 23-week micropreemie. The baby's name is Michael and his parents are Bill and Christa. He was born Saturday, April 8. He joins Kellie and Daniel in his prayer needs!

Since it takes me at least an hour to write these updates and post them, they will probably come every three or four days now. If there is something urgent that changes for good or bad, I will either email everyone who I have addresses for, or I will post a short note, or maybe even both! We are still waiting for news about Kellie's eye exams. She will also have a repeat EEG next week.

Please continue to pray for increased healing in her lungs. Pray for the continued miracle of no infections. Pray for her eye and brain development. Pray that her pituitary gland would heal and work properly. Pray for my milk supply. Pray for Michael and Daniel and their families! We want to see all three of these kids grow up together and have great testimonies of God's marvelous grace!

Thank you once again!

Julie

As you can see, Peter had fun making this page more interesting! While he did that, I got quite a few projects done around the house - in spite of being worn out from getting up at 2am and 5am to pump...nervous energy, I guess! We are obviously breathing a little easier now! The photos above show a little bit of Kellie "before" (02/23/00) and "after" (04/15/00)..."You've come a long way, Baby!" Looking back at all her many photos, we are so touched by how far she has really come! It is truly an amazing work of God!

Kellie had a great weekend! She has been weaned down quite a lot on the ventilator! She has also rested well and not had any major spells of desats (oxygen desaturation in her blood) or bradys (lowering of her heart rate). Yesterday I was able to hold her for 30 minutes. I would have been able to hold her today, but there was an admission on her team so I was only able to visit her for ten minutes. Her EEG on Friday showed she is still having silent seizures, but they are not as bad as before. They are in the right temporal lobe - we didn't think to ask the neurologist about that...maybe later. Since she is still having seizures, they increased her maintenance Phenobarbital level so that may be what is helping her improve. That and your faithful prayers! Kellie now weighs 2 pounds, 12 ounces! She is really in a growing and healing mode - Praise the Lord!

We do want to update you on Baby Michael. We spoke with his parents on Friday and found out his six-day head sonogram showed he had a stage 2+ head bleed (Stages are from 1 to 4, 4 being the worst). This is something that Kellie has never had and it can be quite serious. Please pray for Michael for protection from damage from the bleed. Pray he won't have any more. Pray (like we all do for Kellie and Daniel) for complete healing. Pray for the parents and grandparents. They need peace about this diagnosis. Thank you for standing with us in this prayer request. We feel so close to this family because of what we all are going through. We trust we will see the same miracles in Michael as we have seen in Kellie!

We have wanted to post this praise song for quite some time, but couldn't remember all the lyrics. We sung it in church the first Sunday after Kellie was born and several times since then. It chokes us up every time.

Something our pastor said today really touched me. We are not going through this; we are growing through this. This has been evident since the beginning. We would love to hear how our words have touched you! It humbles us to think how many lives are being touched because of Kellie.

Thank you, Julie

I've been "itching" to write since yesterday afternoon, but I'm just now getting the chance to do it. Kellie is doing very well! Before I update you about her, I wanted to tell you that Kellie and Jacob have a new cousin, Emily Jane (named after Peter's maternal grandfather, Emil John), the third girl and eighth grandchild on the Crooks' side. She was born at 4:45 am on Sunday the 16th, and weighed 8 pounds, 14 ounces and was 21.5 inches long. We don't have all the information, but Emily and her mother, Beverly, have not been able to leave the hospital because Emily has streptococcal pneumonia. They will remain in the hospital for at least a week. We should know more tonight. Please pray for them. Thank you!

We also found out that Baby Michael had two other problems related to his extreme prematurity. In addition to his head bleed, he also had surgery to correct Patent Ductus Arteriosus (PDA) - a condition in which the blood vessel that connects the aorta and the pulmonary artery does not close as it should shortly after birth. Kellie's PDA closed either on its own or with the medicine (Indomethacin) and your prayers. He also had a pneumothorax - or a hole blown out of his lungs. He had a chest tube inserted to relieve that problem. Kellie never had the same condition with her lungs; she just had small air leaks that bubbled under her chest skin. Please pray for Michael that he wouldn't have any long-term complications from these problems, and that he will be protected from others. Thank you!

If you notice on this "new and improved" site, there are buttons to the left. The bottom one is labeled "Poem". The poem is titled, For Kellie Christine, and was written, through Divine inspiration, by a dear friend and former Kansas State University instructor, Sharon Morcos. Sharon has walked through many trials by fire in her life that have strengthened her faith in the Lord. After this trauma with Kellie, I understand how Sharon and many others, including my mother, have come to such a deep strength in Jesus Christ. Sharon is quite a blessing to me and Peter and our children. This poem came to her "through a torrent of tears" one morning when Kellie was five days old. It is very touching, so please read it and the scriptures that back it up!

The update on my milk is that the Reglan has tripled my supply, almost to where it started. The lactation doctor only expected it to double it! Yeah! Thank you for prayer about this unusual situation!

I spoke with Kellie's primary doctor, Dr. Bloom, today about where we are and where we need to be. There were several great reports yesterday about Kellie's condition! Kellie had new, bigger ET tube put in place yesterday because she had outgrown the smaller size. After they extubate and reintubate her, they have to do an X-ray to check the placement of the tube. She had those procedures done three hours after she had another eye exam. The exam was to check for Retinopathy of Prematurity (ROP). This was her third exam. The first one showed hemorrhages in Kellie's right eye, on the second one, her eye was too hazy to see the retina clearly, and this third one showed no ROP!!!! She could still develop this in the next eight weeks. Dr. Bloom is very happy and surprised that she doesn't have ROP and said, "that is great news!" We think so and thank you for the continued prayers, since Kellie's first week, for protection from this disease. We trust she still won't develop it! It could mean something as minor as lazy eye or sight impairment or at the worst, blindness.

The other great news is regarding Kellie's ventilator settings. I need to explain the settings a little bit before I tell you what the goals for permanent extubation are. The first setting is the oxygen level Kellie is receiving. What we breathe is room air and is 21%. The vent can be set somewhere between 21% and 100%. In the past, Kellie hasn't spent much time below 60%, but over the past week, she has been running anywhere from 27% to 70% (at the worst). The past four days have been the best! The next setting is the rate of the breaths she receives. She started at 40 breaths per minute when she switched to the conventional (versus high-frequency) ventilator, then quickly came down to 30, then hung around the 20's. This past week she has gone from 20 to 18 to 15 to 12 to 10! The lower the vent rate, the more breaths Kellie is taking on her own! The third and fourth settings relate to the inflation pressure and expiration pressure her lungs receive. The PEEP (positive end expiratory pressure) is the expiration pressure. Kellie has been at 4 (I'm not going to explain the numbers on this one) on this setting for a few weeks. This is where she needs to be! The other pressure is the PIP (peak inspiratory pressure) and this is the one she still needs work on. Today she is sitting at 24 on this pressure. She needs to get down to at least 18 or 16, but 14 would be the best. Okay, that said, (whew! =)), Kellie is really close to being of the ventilator!!! The goals are: oxygen 21%, rate 10, PEEP 4, and PIP 14-18! She is there on two of them, almost there on one of them, and only 4 "weanings" away on the fourth one!!! This means that if all goes well, the doctors may try to take her off of it in 10 days to 2 weeks!!! After the ventilator, she will be on CPAP (continuous positive airway pressure) for up to a week. This is a fat tube that is placed in her nose with prongs and delivers a constant pressure of air into her lungs. After she is off of CPAP, she can try oral feedings - breast or bottle. It will be awhile before she can take all her feedings orally, because it will mean a lot of work for her. If she gets to this stage in 3 weeks, she will not be very far off from where "non-micro" preemies learn to oral feed! YEAH!

Peter keeps saying the past few days how we are really seeing the manifestations of the long-term prayer requests. We have already seen so many miracles on acute problems, and now we are seeing them for the chronic and potentially chronic problems! Praise God!

Last night and today I changed Kellie's diaper! I'm not sure why I'm so excited about it...I will have thousands to change before she potty trains! I guess I am getting out of doing most of them the first few months! Anyway, it is nice to do something so simple but yet so important for her! Today I "kangarooed" her for 2.5 hours! That was really neat! She handled it much better than the first time we did it two weeks ago. (That time only lasted 30 minutes.) Kellie relaxed quite well, almost too well at one point, because she didn't assist the vent and needed to be turned up for awhile. She recovered quite well. She did decide when she wanted to lie a different way and lifted her head off my chest and tried to turn her head. These two things are nearly impossible with all the tubes...they are cumbersome and taped to my shirt. She is getting quite strong and gets mad when she doesn't get her way! It was neat to hold her today because it is the third-year anniversary of my miscarriage of our first baby.

We are very encouraged by Kellie's progress and hope you are too! We really wanted you to know just how much the prayers are helping! The doctors are still trying to figure out the kidney/urine/pituitary problem. Dr. Bloom thought they had it figured out a couple of weeks ago, but now it is evident they didn't have it 100%. They took several cultures today to check for viruses that may be causing it. We will let you know how the tests turn out.

Thank you again and again! We are still trying to get the "blessings and answers to prayer" list typed up. We think it will encourage your faith like it has ours! It will take time to read back through these 78 pages plus my notes to get everything included!

We hope to have some new great photos posted in the next day or two. Hopefully over the weekend we can add a newer video!

Julie

PS. For those of you who were email photos today, I apologize for you receiving them three times...something was wrong with Juno and our "sent" file, so Juno sent them three times!

This isn't a Kellie Update but an Internet browser update. Many of you haven't been able to see this page since I made some "enhancements", particularly if you have Netscape as your browser. I obviously found the problem, which was a bug in my HTML program. I guess Microsoft Internet Explorer overlooked the bug and loaded the page anyway but Netscape wouldn't load the page. I tried it with Netscape 2.0, which is very old and it seemed to work okay. I guess from now on I will test my web page on both MS Internet explorer and Netscape. I'm sorry for the inconvenience; I was only trying to make it look good!

Julie will probably update this with Kellie's info later tonight. Just as a teaser, Julie said if things keep progressing the way the are, Kellie might be off the ventilator as soon as this Tuesday. PRAISE THE LORD!!!!!!!!! That will be a day of celebration!

Peter

Well, I obviously didn't get this done until tonight. It's been a busy weekend and Jacob is ill with some type of respiratory infection and fever. My grandparents visited from Manhattan and met Kellie for the first time on Friday. That was great for all of us! Kellie is the third great-grandchild, and there is another one on the way. Today Kellie wore her Easter dress...a blue and white plaid, Fisher Price Briarberry (Stuffed Bear) sundress! It has a headband, but it was too small for her head, so Hope, her Beanie bear, is wearing it! Kellie looked so cute it the dress! Eventually we will get a picture uploaded!

Peter was correct in his update...Kellie is coming off the ventilator on Tuesday!!!! Early tomorrow morning she will be started on the high-dose steroid, Decadron, and will receive five days of it. This will be to "get her over the hump" of extubation. After Kellie is off the ventilator, she will be on CPAP (continuous positive airway pressure - see the 04/19 update). I realized today that we will be able to hear her cry when she is extubated!!! YEAH! It will be the first time since her birth - when she let out two tiny little "mews". I don't know if the nurses will be glad to hear her...! Actually, they are as excited as we are and said they will put up with it! Please pray that the extubation process goes smoothly, and that Kellie will continue to be protected from any infections while she is receiving the Decadron. Please pray that the extubation will be permanent and Kellie won't have to ever go back on the ventilator!

Today Kellie weighs 3 pounds, 1 ounce! She hit 3 pounds yesterday. What a "chunk"! She also had her CVC (central venous catheter) removed. It was the big white tube in her neck that went into her right atrium. She looks so much better with it removed! When the pediatric surgeon "installed" it, he figured she would outgrow it within a few weeks. Well, it lasted 8 weeks! The reason it was pulled was because she doesn't need it now! She is receiving her Hydrocortisone and Phenobarbital orally and her Desmopression by nasal spray. If she needs any injections or blood transfusions, they will use an IV in a peripheral site.

Kellie is getting really strong and continues to lift and move her head to try and get into the position she wants to. She is pulling on her vent tube and its tape. She also pulled out her feeding tube last Tuesday...at least it wasn't the vent tube! On Wednesday, they drew cultures for viruses from three places - lungs, urine, and stool. They are still trying to figure out her urine problem. So far the cultures have been read once and they are all negative. They will take several weeks to completely grow. Today Kellie started receiving caffeine for apnea episodes (forgetting to breathe). These episodes are hard to distinguish from desaturation spells, but she is having them because her ventilator rate is so low - 10 breaths per minute. She has to learn to take all her breaths on her own. CPAP will give her a constant, low pressure and oxygen, but no breaths.

Yesterday Kellie smiled for me several times! Even though they were involuntary, they were cute just the same. She also appeared to be laughing! After she did that, I held and rocked her and she fell asleep. Then when Peter visited and held her, (we had to "tag-team" visit Kellie because of Jacob's sickness; he couldn't visit her) she wouldn't do it because she was so relaxed. Instead, she desat'ed a few times! We will also have pictures of her smile when we get the film developed. Wouldn't you know, we didn't have the video camera!

I spoke with Baby Michael's parents last night. He is doing fairly good (being relative) after a long week. He "coded" after his PDA surgery on Monday, but they worked with him for five minutes and kept him going. Even though he has had some bad stuff, he has great lungs. His ventilator settings are better than Kellie's ever were until recently. She is 9 weeks old today, he was 2 weeks old yesterday. So, Michael has/had things Kellie didn't, and vice-versa. It is really interesting comparing them. Please continue to pray for Michael and his parents, Bill and Christa. I haven't seen Daniel's mom recently to get an update. He is 6 weeks old tomorrow. Please continue to pray for Daniel and his parents, Jeff and Christy, and his big sister, Sarah. So far, for these three babies who have a less-than-one per cent chance of survival, I'd say the stats look pretty good! The term survival means going home, but we are all on the long road to that day! We are all certain that our Almighty God has great things in store for these micropreemies! I now affectionately call the babies "The 23-week Musketeers!"

We also have an update on Cousin Emily. She and Beverly went home on Friday. Emily's second strep pneumonia test came back negative! Hmmmm......can you say prayer, not a false positive?! She is also nursing well now. The fact that they went home so much earlier than planned is great since Emily has four older brothers and one sister! Thank you for praying for them!

We have another song that ministered to us. It came to Peter in the middle of the night Saturday. Do you get the picture yet that Christian music ministers to us? I'm not sure how many songs are in this post! I have another one I'm saving for another day. I do miss my DJ'ing at the radio station (I used to be on Midnight-5am, Monday through Fridays) I had to stop it when I got pregnant with Kellie. I was too tired. Speaking of the radio station, have I ever mentioned that I speak live on the air every week regarding Kellie, Daniel, and Michael? Usually I call in on Mondays or Tuesdays between 8:00am and 8:30am. It is on 90.7 and 100.1 FM here in Wichita - KZZD - during "The Preacher's Wife" morning show (Monday through Friday, 7-9am). Tune in to the show when I'm on and even when I'm not! If you found out about Kellie by listening to the show, please email me and let me know!

Here is the song, it is by the group Petra and is from 1982.

He definitely has given us His power and strength to make it through this trial, and He can help you make it through whatever you are going through if you will let Him. Don't turn away from Him, run to Him!!!!

Happy Resurrection Sunday!

Julie

I was able to be with Kellie when they extubated her about 11:15 this morning. She did great, was glad to move around, and peeped a little and cried as hard as she could. She was pretty quiet, but they said she had a good voice for being on the vent for over 9 weeks! She has a lot to say! They said her vocal cords and trachea are pretty sore and inflamed. The ventilator machine is over in the corner of the unit where it belongs! YEAH! Kellie came down to 58% Oxygen right after the procedure, and now is sitting at 40% three hours later!

She still has a small tube down her throat to vent some air from her stomach. Since the CPAP uses pressurized air, when Kellie takes breaths it ends up in her tummy and has to be let out. She bubbled quite a bit when they removed the vent tube. Jacob will be proud of the bubbles she blew!

She also had her fourth eye exam today...the report is still no ROP disease....Praise the Lord! Her doctor was there and said it is just "amazing"!!!! =)

We will have some photos on the site of her without any tubes on her face and with her CPAP just as soon as we get the chance!

Happy Tuesday!

Julie

Kellie is plugging along "flying solo"! On Wednesday, the hard work of breathing on her own caught up with her after she did fine on Tuesday. She was very close to going back on the ventilator, and everyone was sure she'd be back on it Wednesday night. Well, true to her name, she fought and with some help from increased CPAP pressure and a good night's sleep, she is doing much better now. We know you prayed for her to stay off of the ventilator, and we prayed hard on Wednesday, and God heard our prayers and let her pull through another rough day!

When Kellie wants attention, she knows how to get it now! She cries pretty good! The NICU staff is amazed at just how loud and strong she does cry since she is so tiny and was on the ventilator for so long. The Decadron is probably helping her out since it will reduce the inflammation in her vocal cords and trachea. She really likes being able to turn her head at will and get more comfortable. She still doesn't like to lie on her left side, and she can't lie on her tummy very often, but she is learning to deal with the positions she is in. She does like it when she gets to sit up a little bit.

I forgot to tell you a cute story about Jacob. A couple of weeks ago when we were driving to church, Peter said, "I love Jacob!" and then Jacob replied, "I love Baby Kell-yee!". It was sweet. He really does love her and has been pretty good about not getting to see her this week since he's been sick. He is getting a little better, so maybe soon he can visit her. He has the hospital routine down pretty good!

I know we are slow at getting the pictures on the web. It's been a busy week for us. Yesterday we had to have a new air conditioner installed, and that was something that was a pain to work out, but now it is done. Since I couldn't go anywhere Thursday, and Jacob slept all afternoon, I was able to catch up on most of my email replies. I responded to over 80 emails yesterday. If I missed you, I'm sorry! When you write, please know that we do get the notes and really appreciate them! It is our lifeline to the outside world at times! I print all the emails related to Kellie and they are going to be in a big "Blessing Book" as soon as I get a hold of a good 3-hole punch! We really want to share with Kellie, and remind ourselves over and over, how her life has touched so many people. I've already been asked by our Pastor's wife, to come up with some sort of presentation about her.

We both are amazed now looking back at Kellie's life. When she was so little and so frail looking, all I saw was my beautiful baby girl. Now when I look back at the photos, and especially the video, I cry and realize just how amazing she is! I was blinded in the past and couldn't understand why her story and photos touched people and made them hurt. Now I know. Peter says he always felt "sick to his stomach". We are so glad that we bought the video camera when we did. Full term babies change a lot during their first two months; Kellie has changed even more. Most kids triple their birth weight in a year, she's doing it within 3 months!

Kellie really likes to suck on a pacifier now and I think she misses her vent tube...it was always there to suck on! If she doesn't have a pacifier, I guess she likes to suck on fingers. That is what Nurse Vickie tells me. I haven't tried it with my finger yet, but I'm glad she is practicing for nipple feedings. I am anxious for her to get off CPAP so she can try oral feedings. My milk is staying ahead of her again since I've been on the Reglan; it has almost quadrupled my supply.

Thank you for still sticking with us! She is not out of the woods yet, but we've come so far!

Here is a song I've been saving. It is by Pete Stewart, former lead singer for the group, Grammatrain, who I met twice while hosting them and their wives for a concert at the radio station - really great people!

Have a great weekend!

Julie

In case you didn't notice, there are several new photos of Kellie posted on the site. You can compare the recent photo of Peter's wedding ring on her foot (taken at 2 months old) with the same shot we took at 3 days old...quite amazing! You can also see her in her Easter dress, without any tubes on her face, with her CPAP, and in her new isolette bed. We tried to get a movie uploaded yesterday, but it takes a lot of time that we didn't seem to find. As it was, it took Peter 3 hours to get the 9 new photos uploaded.

Yesterday in church our Pastor had us come up to the front and give a testimony of the miracles that have happened in Kellie's life and also talk about the things God has done for others who have been touched by her story. It was nice to be able to share with so many people. In turn, other church members touched us some more with new scriptures and words of encouragement. I realize how important it is for me to get the list of answered prayers and blessings and miracles typed up. It is in our heads but has never made it to print yet! I plan on working on it in earnest this week so I can share it with you!

Many of you have told me not to worry about replying to email, or writing these updates. Yes, it takes a lot of my time, but it is a great way for me to deal with the situation, to make some sense of it, and to stay in touch with the "real world". So, as I find the time, I will continue to do both for my sake. Thank you for being concerned.

Kellie is still doing great on the CPAP. In fact, at least once she has gotten one or both prongs out of her nose and breathed just fine without them. We hope she can be weaned back on her pressure so she can be weaned off the CPAP and placed on just oxygen from a nasal cannula. She is done with her third round of Decadron now and is back on low-dose Hydrocortisone, but being weaned off of it. She is now 10 weeks old. If she was born now, she'd still be 7 weeks early! That puts it into perspective! She weighs 3 pounds, 5 ounces now and is 14.5 inches long. Three more ounces and she will have tripled her birth weight! She is still feisty and gets upset when no one answers her cries, which are getting louder by the day! She is getting quite good at pulling out her NG (nasogastric) and OG (orogastric) tubes! She needs the NG to eat and the OG to burp! Crazy girl! She actually chews out her OG when she doesn't have a pacifier or finger to suck on! I told her to just heal up and get off of CPAP and then we can start feeding her by mouth and she won't need the OG "vent" tube.

Kellie is now the oldest baby in the NICU. There had been a baby in the nursery since New Year's Eve, but he went home this week, passing the title to Kellie. She moved into a "big girl" bed on Friday night - a closed isolette bed. They needed her radiant warmer bed since they are now at full capacity - 40 babies. It was also time for her to move since she is on CPAP and not a ventilator, and also since she is bigger. The isolette cuts down on the sound and lights in the nursery and should help her rest better. When she was laid in the bed for the first time, she looked around as if to say, "where am I?" It was cute. The bed also muffles her crying, a benefit for the nurses, I'm sure! Now she can have her bed decorated inside and out! Currently it has a lot of PINK! You can see the photo on her main page.

You will have to check out the current issue of Life Magazine - May 2000. On the cover is a baby boy born at 25 weeks gestation. He looks quite a lot like Kellie did with all the tubes and wires and the same tiny diapers! Actually, Kellie now wears the preemie size diapers, not the tiny micro sizes. Anyway, the article is interesting and sounds so familiar to us...and to you if you've kept up with us! It is Life's last monthly issue, so I'm definitely getting a copy for Kellie! When Peter saw it he asked what Kellie was doing on the cover. Jacob saw it at said, "Baby Kay-ee!" I don't think the issue is on the newsstands yet, but I'm sure it will be soon.

Thank you once again for your continued interest, care, and prayers! Kellie has come a long way, but she still has a way to go! Lately the NICU staff has told us things like, "we really didn't think she'd make it this far," and "she's come such a long way," and "we thought she'd die". It is strange to actually hear people say that, and they hadn't until this point, even though we knew they were thinking it!

Have a great May Day!

Julie

I haven't written in a week because there hasn't been much to write about. Peter and I spent the last week in a time of reflection...thinking of what we've been through, what we've learned, and what Kellie's life has meant to us and many others.

Last Monday, Peter held Kellie skin-to-skin for the first time. She liked it and relaxed quite a bit. Peter liked it, too, and realized how warm she is and just how small! On Saturday, Jacob held Kellie in a rocking chair. He rocked her, sang to her, and wanted her to play with him. He took her hand and made her feel his hair, and then he gave her his basketball goal and said, "Hold it!" He also wanted her to hold his hand all the time. He was impressed by the spit bubbles she makes (the pressurized air makes her bubble). He "baby talks" her really cute. They are so sweet together! It is really special watching the sibling bond develop. We will have a photo uploaded soon of them together.

If you didn't notice, there is a new icon on Kellie's main page of a baby crying. When you download it, you can hear her crying. I recorded it last Wednesday while changing her diaper - she didn't appreciate me doing it very much! She has quite the cry! The nurses tell me she gets really mad now when she is not held. Whenever we leave and put her back to bed, she gets mad and screams her head off because she likes to be held so much. She does, however, find comfort in her pacifier, but gets mad because she can't keep it in her mouth - she wants someone to hold it for her! I think she is making up for lost time not being held (in the womb or in our arms) and not being able to talk! The roof of her mouth has a deep ridge from it growing around the vent tube for so long.

Last week Kellie had another eye exam. This one showed some ROP (retinopathy of prematurity) developing in her eyes. At this time it is at Stage one. Stage one and two ROP generally correct spontaneously, but can also progress, so she will be checked again this week. Please pray that the ROP would heal up on its own and not return. She did great not developing it until now and we'd like to see her completely healed from the condition. We will update you just as soon as she has her repeat exam this week. She is also still having silent seizures that are causing her problems. For the most part they are controlled by the Phenobarbital, but it would be nice if she'd stop having them at all. Please pray for the seizure activity to stop completely. Also, her kidney and pituitary gland problems are being controlled with medicine, but we'd like to see her not need the drugs. Please pray that the problem would heal up. Kellie will also get her thyroid function tested soon to see if that condition is any better. Pray that there would be no problems with her thyroid.

Kellie is doing fair on the CPAP. She was able to be weaned back to 4cm on her pressure, but on Saturday had to be turned back up to 6cm. We hope she can be weaned back again soon. Since she is in an incubator now and is growing, her bed is now set to heat up based on the air temperature and not Kellie's skin temperature. They set the bed at about 29 degrees Centigrade (84º F) and she has to make up the difference and keep herself warm to about 37 degrees (98.6º F). This means she is wearing clothes - mainly sleepers, and is also getting snuggled up. Sometimes she gets too warm and gets to be unwrapped. Once she can handle room temperature (26.9º C - 80º F) on her own, and weighs 1800 grams (4 pounds), she can move to an open crib. She is now 1669 grams - 3 pounds, 11 ounces. She is growing like a weed and steadily gaining one ounce or so per day. Please pray she would continue to have the great weight gains and can regulate her temperature well.

We read a book in the last week titled, Dear Zoe. It is by a man named Max DuPree who is Zoe's grandfather and was her surrogate father due to divorce. Zoe was born at 25 weeks gestation in December 1988. The book is a collection of letters that her grandfather wrote to her during the trauma of her early birth. Through the book we have been able to make some sense of our feelings and reflect on the things we learned from Kellie's situation. I took the time to write up more of my thoughts after reading the book. I also spent some time this week working on the "Blessings and Answers to Prayer" list. I hope to have the writings finished and posted this week.

I can't describe how wonderful it is to hold Kellie most of the time when we visit and also to be able to dress her and change her diapers. It is also wonderful now when she has wide-awake alert periods! She is so cute and tiny! As much as I want her to grow more and more and heal up, it is also sad to see her change so rapidly! It is a weird paradox. Kellie is now 11 weeks old and has an adjusted gestational age of 34.2 weeks. That means if she would have been born now, she still would be 6 weeks early! We really hope she can come home before her due date - Father's Day, June 18. Jacob came home from the hospital on Peter's birthday, so it is only fair that Kellie is home by Father's day! I am looking forward to nursing her and was hoping it would happen before Mother's day. It may still happen if she can get off of CPAP and onto oxygen via a nasal cannula sometime this week. The way she sucks, she will have no problems getting any milk; it will just surprise her when she gets something out while sucking! She will most likely gag a lot!

I have some news regarding Baby Daniel. He also got off the ventilator this weekend! He is 8 weeks old (31 weeks AGA) and is 2 pounds, 10 ounces. He is doing great on CPAP so far and is also enjoying being held. His parents love it too, of course! He likes the pacifier just like Kellie does. I think the babies miss those tubes down their throats! I haven't seen Baby Michael's parents recently, so I don't have an update on him. Please continue joining us in prayer for both boys.

Thank you for standing with us! We have come so far together and still have a way to go. We could not do this without you and your prayers! It is so neat to see the Body of Christ working together on behalf of our daughter.

Julie

I forgot to mention that this is National Nurse's Week, and Nurse's Day was last Saturday. I want to say a special thank you to all of Kellie's nurses and her medical team. They have been completely wonderful during these last three months! Thank you, Thank you, Thank you! They take such great care of Kellie and us! We couldn't do it without them!

This is a quick note to let you know that Kellie is receiving another round of the steroid, Decadron. As far as we can tell from reading her chart and without speaking with her doctor, this is to help her lung status without putting her back on the ventilator. Kellie had some pretty serious apnea/bradycardia/desaturation spells on Sunday and Monday. In addition to starting the five-day round of Decadron yesterday, she also had the dosages of her caffeine (for apnea) and Phenobarbital (for seizures) increased due to her weight gain over the past week. The three drugs combined are most likely helping her out. She hasn't had any spells since 9:40pm last evening. It is hard to tell what is causing her episodes; it is most likely a combination of things. The apnea is a very common thing for preemies and the bradycardia usually happens in conjunction with the apnea (called "A's and B's). Also, her chronic lung disease can make her not breathe well; she has a lot of lung inflammation and secretions. All of this can be complicated by her silent seizures.

While our updates have sounded like Kellie is doing great and is spending time healing and growing, she is still critical and needs to pull out of these episodes. Her lungs need to continue healing and the seizures need to stop. Her urine output/kidney/pituitary gland still needs to heal instead of just being controlled with medicine. The eye disease, Retinopathy of Prematurity (ROP) needs to completely stop developing. Please pray for these conditions and also that she will once again be protected from infection while on the Decadron.

Some time this week we hope to speak with Dr. Bloom, Kellie's primary neonatologist. He has been gone for two weeks and we haven't talked with him at length since April 8. Once we touch base with him we will have more to tell you. We are also anxious for her repeat eye exam this week to find out the status of the ROP.

Last night Jacob held Kellie again and he told her, "oh, sweet girl!" It was very touching!

Thank you for your faithful prayer and for showing so much love for our daughter and family!

Julie

We added two photos to the site. One is Jacob holding Kellie for the first time and the other is Kellie awake and holding Jacob's hand.

Kellie's episodes of apnea/bradycardia have slowed way down. It seems that the Decadron is helping her out. She has also been weaned down on her oxygen from around 40% down to around 30%. The goal on CPAP is still room air - 21%. Her pressure needs to come back down to 4 from 6. Kellie is doing great on her temperatures; her incubator is set almost at room temperature now.

Julie

Hi everyone! It is with a heavy heart that I write today. While I was out at our annual neighborhood garage sales today (56 of them!), Kellie's primary neonatologist, Dr. Bloom, called and left a message. Of all the days he needed to get a hold of us, today was the day that Peter took the cell phone with him to El Dorado while working. I normally keep it. Dr. Bloom reached Peter via the cell phone while I was out merrily buying Kellie clothes. The news he needed to tell us was that Kellie's eye exam today showed a rapid progression of the Retinopathy of Prematurity (ROP).

I am waiting on a return call from the ophthalmologist, Dr. Varenhorst, regarding Kellie's condition. Dr. Bloom filled Peter in a little bit on what has happened. It is hard for Dr. Varenhorst to say for sure what the condition of Kellie's eyes are because she was fighting him during the exam...yes, our little girl has quite the fight and lets you know it when she doesn't like something! What he did see troubled him and there is a need to either heavily sedate Kellie or give her anesthesia in order to get a better look at her retinas. If she truly does have a bad progression of the ROP, then she will have laser surgery, while they have her knocked out, to hopefully correct the problem. Unfortunately, the surgery and the recovery will be hard on her and she has a 50/50 chance of needing to be intubated (put back on the ventilator) for 3-5 days after the procedure.

Please pray in earnest for Kellie and this downside of her hospitalization. Pray that the ROP would turn out to not be a major problem. Pray that the ROP will be healed and either not need the surgery, or if there is surgery that it would be effective. Pray for our strength and peace as we worry about her and truly are scared. Thank you in advance! Just as soon as I have word from the doctor, I will fill you in on more details.

There is a great web site that describes ROP. If you are interested, here is the link.

Thank you once again for standing with us and helping us in a time of great need!

Julie

Tonight I never received a call back from Dr. Varenhorst and didn't call Dr. Bloom back, but when we visited Kellie we read her chart. She has "Stage 3 (stages are 1-5) ROP in Zone 2 for 12 clock hours". She will have the exam/surgery at 11:00 am tomorrow. We will be at the hospital for the procedure. We will let you know more tomorrow afternoon when we get home.

Julie

Kellie pulled through her laser surgery just fine. She ended up having it around 1:00pm. The sedation knocked her out but she didn't need to be put back on the ventilator - she kept breathing just fine! She came back from the surgery room screaming her head off! She really wants to eat because she hasn't had any food since 7am, and she won't get any until about 5pm.

Kellie will be rechecked on Tuesday. It may be 2-3 weeks or more until the effectiveness of the surgery is seen. Her eyes are a little puffy, but she should recover just fine. Dr. Varenhorst said her chance for visual problems is 25%, versus 50% without the surgery.

Our pastor and his wife stayed with us at the hospital before and after Kellie's surgery. It was their day off and we really appreciate the time they took to comfort us and pray with us. Thank you to all of you for your prayer support also! We will let you know the long-term outcome of the surgery as we know new things!

Have a great weekend!

Julie

We're having a great Monday! Kellie came off of CPAP support today at 10:30am! She is now on a high-flow nasal cannula. We talked with Dr. Bloom for 1.5 hours on Saturday night and were told she might come off of CPAP sometime this week, so we are very surprised and happy to find out it was today! This means that she can probably start nipple feeding tomorrow! My goal for nursing or bottle feeding was Mother's day, so even though I was sad we didn't make it yesterday, I'm very happy that we may get to do it only two days off from my goal! Also, we will now get a better look at Kellie's face without all the tape and tubes! She's happy too because she gets to lay on her tummy and doesn't have the oral tube now!

It will be hard to summarize what we discussed with Dr. Bloom since there is so much information. My notes are scratchy because I was trying to listen intently to Dr. Bloom and at the same time keep Jacob occupied (he did great sitting there by Kellie's bedside for all that time!) I'll do my best to be brief and explain things clearly! (Dr. Bloom now visits this site - I hope I get it correct! =) This is the way I understand it) Regarding Kellie's urine output problem, the Diabetes Insipidus, she is slowing being weaned from the synthetic anti-diuretic hormone (Desmopressin). It appears she may not need the drug after awhile. Her urine output is still on the high side of normal, but the sensitivity of her kidneys to the hormone is improving. It is all hard to explain, and Peter understands it better than I do. I should let him write about it!

Kellie is still having problems with her calcium and phosphorus levels. They are up and down. She receives supplements when she needs it. She is also getting a "human milk fortifier" added to my breast milk to help with the levels and also her caloric needs. Her thyroid gland function will be rechecked sometime soon also. Her adrenal gland function will also be tested a week after she is completely weaned off of the hydrocortisone.

Dr. Bloom feels her apnea/bradycardia/desaturation spells are caused mainly from her pulmonary status. Her lungs are still really wet and also damaged. It is hard to tell what the status of Kellie's seizures are, but she will be having another EEG in a couple of weeks. She will also have either a CT or MRI scan once she is successfully off of CPAP for one week. Her apnea spells should slow down in a few weeks as she matures some more.

Two of the viral cultures (stool and respiratory) that were drawn several weeks ago have finished with no growth. The urine culture is still out. These tests were drawn to check for a virus that may have caused Kellie's high and low urine output. If the urine culture comes back negative also, it could be that there was a virus, but it wasn't detected. It will always be a mystery as to what really happened. In any case, the urine problem seems stabilized.

Peter asked Dr. Bloom what he was most concerned about in the long run. Dr. Bloom said her neurological status and her lungs. It is hard to detect what damage, if any, her brain may have, and only time will tell what lies ahead. Kellie will be at an extreme risk for pneumonia and RSV (respiratory syncytial virus), so she will need to be protected from exposure. She will also need monthly injections from October to April for the next two winters to help protect her from RSV. Thankfully she is coming home in the summer and will have time to grow and heal before the cold and flu season.

The tough question we asked Dr. Bloom was, "when do you think she can come home?" He thinks late June or at least by July 4th. This would be 2-3 weeks past her due date of June 18 (Father's Day). If she can't make Father's day, then maybe she will make it home for Independence Day or our 9th wedding anniversary on July 6th! It looks like we will have a big celebration in July! Gather up your fireworks! I can only imagine what a collection of fireworks Peter will have, considering his nickname is "Pyro Pete!" Unfortunately, since we aren't in the city limits, shooting them off is illegal...maybe we'll be brave and take a risk!

The main goal that Kellie must achieve before coming home is to take all her feedings by breast or bottle. This will be a long, slow, process...obviously, or there wouldn't be a 6-7 week wait until she gets there! Even if she nurses well, she will still need some "jet fuel" (Dr. Bloom's term) of higher calorie formula or supplemented breast milk. She really needs this for brain growth and healing. Hmmm, bottle feeding...maybe Peter can take some nighttime duty! =) Actually, Jacob likes to help with bottles, he may come in handy on those days I need a few more hands!

Today Kellie is 1705 grams, or 3 pounds, 12 ounces. She is 12 weeks and one day old, and is 35.2 weeks adjusted gestational age. She hasn't grown much in length lately and is still about 14.5 inches long. She will be measured tomorrow night. She will also have a follow up eye exam tomorrow. Once she reaches 4 pounds, she may get to move into an open crib. She has been doing great on her temperature control.

Last Thursday night, when I was so worried about Kellie's ROP surgery, I was able to hold her and Jacob in my lap together. That was a great early Mother's day present...rocking my two precious kids! Jacob liked it, too. So far he doesn't seem jealous of Kellie. At bed time last night when we were saying our "good nights" and "I love you's", Jacob said, "I love Baby Kay-ee, too (in addition to Mommy and Daddy)". He really has a great sense of family in spite of the fact that Kellie isn't at home. I trust he will do fine once she is here.

Three weeks ago, when Kellie came off of the ventilator, I forgot to update you on something. For those of you who have followed us from the beginning, or have read through the entire story, you may remember how I was challenged by our Pastor's wife, when Kellie was two days old, to write down four things I wanted to see happen in Kellie's life. I wrote: 1) she will open her eyes at just the right time, 2) Kellie will wear clothes, 3) Her vent tube will come out so she can audibly cry and we can record it, and 4) Kellie will nurse. Well, she did open her eyes at the perfect time, she did wear clothes the first day we held her, and now she is wearing real preemie clothes, not doll clothes, and also clothes that are hers, not the nursery's. On April 25th, she did get off the vent and we heard her cry...I recorded it and put it on the site. All she has to do now is nurse and that is not too far off. It looks like I need to re-evaluate my goals for her and write some new ones so I can see them come to pass. It is amazing to think back to that second day and look at the simple things I wanted her to do, that they were so important to her being alive and becoming "real".

I also remember back to Kellie's fourth day of life, the day after Dr. Bloom said they'd given up hope. We spoke with my brother-in-law, who is a funeral director, about the death and funeral process. We really trusted we wouldn't need the information but wanted to prepare anyway. During the discussion, my brother-in-law said to us that "yes, Kellie is alive, but she hasn't really lived!" We are glad to finally see her live and be more like a "real baby". We anxiously await the future of watching her grow and develop!

Yesterday in church I was honored for being a mom who is going through a lot. Peter and I stood up on the platform while our Pastor's wife talked about Kellie and me. Just two weeks ago we stood up front and told about Kellie's life. I'm glad I didn't have to speak yesterday, I don't think I could have handled it. I still don't know why I was chosen to be the mother of this special child, but I'm thankful for the opportunity. The church gave us an outfit for Kellie and a care kit for me for the hospital. It was really nice and we are so thankful to be part of such a giving, loving church. As a whole, many churches continually stand behind us and support us through prayer in addition to all the individuals who pray. The Body of Christ is a wonderful family to be a part of!

A few weeks ago Peter was reading John 9, where Jesus' disciples were asking Jesus about the blind man. They asked him, "who sinned, this man or his parents, that he was born blind?" Jesus answered, "neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life" (John 9:1-3). We know Kellie was born "on time" (see her poem) so that God could use her life to strengthen our faith and prayer lives and also to touch many lives and show what a loving, graceful God we serve! Peter says that looking back, he wouldn't have wanted her birth and life to happen any other way! (Although I'd have more hair and Peter would have fewer gray ones!)

Yesterday our Pastor preached from Psalm 71 about the Lord being our refuge and our rock. When we turn to Him in times of trials, He sends a commandment from Heaven to save us. Oh, how He has saved us, not just from our sin, but also from Kellie's traumatic birth and the fear of losing her! It is only through Him that we have managed. His grace is sufficient. Psalm 71 and Psalm 91 have such great meaning to us! We continuously praise God for the work He's done in our lives and in Kellie's! What a mighty God we serve!

Happy Monday! Julie

Kellie is back on CPAP. They were putting her back on it when we got there tonight. Actually, they waited as long as they could for us to show up, but we got there about 30 minutes later than usual. Maybe in a week she can try to come off of it again. We briefly got to see her without the big CPAP tubes on her, and she was wide awake so she looked really cute. In addition to the RT needing to get her back on the CPAP before she had another episode, there was an admission on the team, so we couldn't stay with Kellie very long. Then Jacob was acting up, so overall, we didn't have a very good evening or a good visit. Maybe later. Also, this means Kellie will have to wait another week to start bottle or breast feeding.

Julie

Kellie's eyes were examined on Tuesday, but there was no improvement yet. Before the surgery, Dr. Varenhorst said it might be 2-3 weeks before anything can be seen. Her eyes are no longer swollen and the whites of her eyes are no longer red, so she looks a lot better. The Decadron was completed on Friday also, so her color is pinking up again. The Decadron gives her a dusky tan-gray color that makes her look really sick and I like it when she becomes a normal color again.

She has not had any major episodes of apnea or bradycardia for two days. Dr. Bloom says he will try her off of CPAP again in a few days. Maybe without the A's and B's she will do okay this time. He had told us that she should eventually outgrow them. When Peter was holding her Tuesday night, she had a little bit of apnea...I think she just relaxed too much and didn't want to breathe. She's done that to me before when I hold her.

She is still regulating her temperature very well. Now that she is 1804 grams (10 grams, or one-third of an ounce, away from 4 pounds!) she may get to move into an open crib/bassinet soon! She will probably like it because the beds can be made to automatically rock. That should settle her down when she gets restless...which she does well! In fact, she has been rolling around in her incubator - she wants out! She also rolled around on the scale Tuesday night. She may be small, but I think she wants to act like a "big girl" baby! She loves to be held and rocked. Yesterday she really liked me singing to her, too. Now all she needs is a way to keep her pacifier in! She sucked hard on it for 45 minutes yesterday. Hopefully this means she won't have too many problems learning to nipple feed. Kellie will be three months old on Saturday!

There is a new "23-weeker" in the NICU now. All I know is her name is Jacey (sp?), she was born a week ago, May 11, and her family is from Minnesota. They were here visiting grandparents when she was born. I cannot even imagine delivering so far from home and being away from support people and familiar doctors etc.....My heart goes out to them on the early birth and the circumstances. I think once Jacey is stable there is talk of transferring her closer to home. I hope to meet the family soon. Now the "23-weeker" count is 4 in our nursery - Kellie (12 wks), Daniel (9 wks), Michael (5 wks) and Jacey (1 wk). Please remember to keep all these babies and their families in your prayers. Daniel is doing great off of CPAP (since Monday) and on high-flow nasal cannula. Michael's head bleed has stopped and he may get extubated early next week. Jacey has low ventilator settings, so that is a positive, but she may have other serious problems, and she is coming out of the "first week honeymoon" period.

Kellie still needs prayer regarding her eyes. We've heard some not-so-good reports about ineffective ROP surgery from some parents in our online ROP support group. While we trust the Lord for complete healing, we know Kellie needs prayer for healing and complete restoration. I don't want to speak any negative information regarding her sight, but want to speak words of healing. She also needs prayer that she can get off and stay off the CPAP so she can learn how to eat by mouth. We really would like her to progress rapidly in her eating ability. The faster she learns and can handle more oral feedings, the faster she can come home. Please pray also for her neurological development - that she would progress normally without any problems with learning or motor skills.

Unless there is some urgent news, there will most likely not be an update until late Sunday or early Monday because I have some very busy days coming up! Hopefully the next time I write it will be to tell you that Kellie is off of CPAP!

Have a great weekend!

Julie

Yes, today Kellie is three months old! She is also 4 pounds, 3 ounces. She gained over 3 ounces last night just so she could say she was 4 pounds at 3 months old!

Yesterday was Kellie's last dose of Desmopressin, the synthetic anti-diuretic hormone drug. It was the one that kept her urine output in check. She was slowly weaned off of it, and now it appears she won't need it because her output has been just fine without it so far! That means that the problem she had (diabetes insipidus) must be healed! Praise God! Another prayer answered!

On Monday Kellie will also get her last dose of the low-dose steroid, hydrocortisone. She will also attempt another try off of the CPAP support. Let's pray she can stay off of it this time! She has been at a low pressure on the CPAP of 3cm and also low oxygen, 28-32%, so maybe she'll be better prepared this time to try a high-flow oxygen nasal cannula! She hasn't had any apnea or bradycardia for two days now! Yeah!

Please continue to pray for her eyes, for the ROP, that it is totally resolved! Thank you!

Julie

Today Kellie moved into an open crib! That means she is big enough and holding her temperature well enough to make the big move! She gained a couple of more ounces and is now 4 pounds, 5 ounces. You can see a new photo on the main page of her in her crib. It is only about one-half the length of a home crib, but she still looks lost! You can also see a photo of her smiling that was taken yesterday!

Here is an older praise and worship song we sang in church today that touched us...

We do give thanks and are so grateful to our Almighty God for the healing He has done in Kellie's life, and all the other things He's done for us! What a Mighty God we serve!

Julie

I have a request from all of you. We are compiling a list of all the individuals and churches/prayer groups/Bible studies that are praying for Kellie. Would you please email us with any information you have about this? We'd like to know where everyone is from and where the churches are. Recently I have received several church bulletins in the mail listing Kellie on the prayer list. It is neat and I'm adding them to her box of keepsakes. Also, if you know the email or postal addresses of the churches/groups, we'd like to send them a note of thanks. We have a "running total" in our heads of the people and churches that are praying, and we want to get it into print in order to be reminded of just how many lives Kellie has touched and how many churches are standing with us. This way when Kellie grows up we can show her and not just tell her about all the kindness. Thanks so much!

Julie

I just uploaded two cute photos of Kellie to her main page. They were taken last night. It is so nice to see her (almost) whole face without the white adhesive tape and the fat tubes and the foam pads! Now all she has is a small cannula tube and her feeding tube and they are held on with clear silk tape!

In the photos, you can see her smiling and yawning. She does have dimples like Jacob and us! The tape and the tubes on her cheeks make the dimples sag a little, but they are there! Peter got her to smile by tickling her chin. She seems to have a strong "rooting" reflex, so hopefully she will do great with the oral feedings! The rattle in the photo is one Jacob picked out for her when we first found out I was pregnant. He finally got to give it to her last night, and oh did he think that was neat! She even "held" it! It will be nice for her to look at in her bed since young babies like the high contrast of black and white. There were many different sports balls for Jacob to pick out, but he liked the soccer ball for some reason. I really thought he'd choose the basketball, since he lives for b-ball, but I guess he had something else in mind!

Kellie is doing fine on the nasal cannula. She is on the low-flow oxygen and is needing 80-200cc's of oxygen. The max they want her is 250cc's. I will explain the settings sometime later. (For those of you reading from the "Preemie-l" list, you will understand =) !)

Julie

I am writing this at the above time, but I have no idea when it will show up on the web page...we are without phone service for at least 36 hours. Some construction workers knocked out the lines for our entire neighborhood and maybe more homes. I can't get email, which is probably a good thing, considering I have 95 emails to reply to as it is! We are very thankful we have the cell phone now so the hospital can get a hold of us if they need to!

Today Kellie had a repeat eye exam and a repeat EEG. Dr. Varenhorst, her ophthalmologist, said the exam was good because it showed slight improvement. Yeah! We won't know the results of her EEG for a few days. We have to wait for Dr. Shah, her pediatric neurologist, to read the test and give a report. We hope and pray that it is also a good result - that the seizures have once again slowed down.

Today, after her two tests Kellie also tried nursing for the first time! I've waited a long time for that to happen! She wasn't as happy about it though! She was a little too tired. She did suck some and I trust she will get it with time. Vickie, her primary nurse, was helping us and gave her a little taste of milk via a syringe. Kellie seemed to wonder what in the world it was since she has never had an oral feeding; she ended up choking on it a little bit since she doesn't yet, and won't for awhile, have the "suck, swallow, breathe" thing down, which is very common in preemies. Between being too worn out, having spells (apnea, bradycardia, and desaturations), and choking, we gave up after a short time. We will try again tomorrow with either with the breast feeding or a bottle.

Yesterday, in preparation for oral feeding, Kellie started receiving bolus feedings instead of the continuous feedings. She now receives 26 cc's (28cc's is one ounce) of milk (one part breast milk with one part formula) every two hours. It is dispensed over 30 minutes via her nasogastric tube each time. She is starting to figure out when she is getting hungry. She's never had that sensation except for when they didn't feed her for her eye surgery...and remember, she wasn't too pleased with that!

Kellie is crying louder and harder every day. Today when I was visiting she was sleeping in bed and every time her pacifier fell out of her mouth she had a fit. She is getting a stronger suck and more able to hold in the pacifier, but when she loses it she lets you know it immediately! She summoned me from across the nursery...and of course I came running....=) We all rig her up with some sort of brace to hold it in so we won't have to hear her wail!

Yesterday, the occupational/physical therapist examined Kellie for the second time. Kellie was pretty sensitive and needed lots of extra oxygen, so the exam was pretty inconclusive. It did show that her hips are okay for now, something they expect to be a little messed up. Next week Kellie will get a follow-up and we will be taught exercises to help her muscle tone.

So far since Monday, Kellie is doing good with the nasal cannula oxygen. Her oxygen amount has to be turned up when she is "messed with", but at rest she's doing okay. She likes having the smaller tubes because she can turn her head at will and roll around some. I keep thinking about those air tubes and wonder how our cat will handle them when she comes home. He chews our fish tank hoses all the time and suffocates our fish. I DO NOT want him to suffocate Kellie! Anyone up for a black cat living with them for awhile? Just kidding. The vet said we could coat the tubes with hot pepper or bitter apple spray. I can just see it now if Kellie gets a taste of that! Talk about an apnea monitor going off! Well, it is late (11:15pm now) and I'm digressing. I should get to bed! 

Yesterday I was on the "Preacher's Wife Morning Show", live in the studio, instead of on the phone. I am still on the air about once a week giving updates about Kellie. Being in the studio again made me want to get back to "DJ"ing again, but it will have to wait a long time. It was weird to hear my voice on the air again through the headphones. Of course you know I love to talk about Kellie! We played the tape of her crying on the air. That was pretty fun! I look forward to the day I can take her in and have her "talk" on the air herself. Recently I think they can just point the microphone toward the hospital and it will pick her up when she cries!

Thank you once again!

Julie

On Friday, Kellie tried a bottle right after she failed at breast feeding again. With both the breast and the bottle she just relaxed too much and didn't want to wake up to eat. When I hold her, she just decides to go to sleep. Vickie tried to give her the bottle after I tried, and Kellie did a little better, but not by much. Today, however, we tried bottle-feeding again (Jacob was with me so it was out of the question to nurse her) and this time it was a great success! We started her with 5cc's (one teaspoon) of milk in the bottle, thinking she would just play around with it. Well, she took 3cc's right away without any trouble. We then thought, "she won't take more than 5 again", so that is how much we put in the bottle the second time. Well, she drank that too! We filled the bottle a total of 4 times. Kellie drank 18cc's - over half of her feeding amount of 28cc's (one ounce). She received the remaining 10cc's via her NG tube. During the bottle feeding she had a few bradys and a couple of desats, but all in all, she did wonderfully! I can't wait to see what the next time brings! She is now getting 12 ounces of milk per day...that's equal to one can of pop!

Kellie's oxygen requirement has been great the past two days! On Friday she was so low that it was hard to measure on the gauge. Today she was around 50-100cc's. During the feeding she had to be at 300-400, but that is to be expected since she doesn't know how to breathe while she eats.

The EEG on Thursday showed she is still having seizures but they have slowed down once again. Praise God! She is having them in both temporal lobes - in the right side worse than the left. They kept her Phenobarbital dose where it is. She will be having her MRI this Tuesday. She will be sedated for it and it will take about 40 minutes. I hope to be there with her. The speech therapist was consulted on Friday to help Kellie with her oral feedings. She will get her first formal exam on Tuesday, hopefully before the MRI. I will let you know how both exams turn out.

Kellie now weighs 2035 grams, which is basically 4.5 pounds! When she is 4 pounds, 10 ounces, she will be four times her birth weight! Jacob isn't even four times his birth weight! You can imagine how much she's changed! She is fitting into more and more of her own "preemie" size clothes and looking cuter everyday! She is, however, getting her days and nights mixed up. She only has five weeks to get that straightened out...hopefully before she comes home! We think it is because it is quieter overnight in the NICU and she has learned to tune out the noise during the day...it's just too quiet at night around there! She should like it at home with Jacob talking and running around all the time! She is really attached to her "womb sounds" player and now also her tape player. It looks like we'll be using those at home a lot!

Kellie will have her car seat trial soon. During the test, she will sit in her car seat for 90 minutes while they monitor her. Then they will know if she can handle riding in a car - something she has to do to come home. Jacob sure looked lost in that car seat at over 8 pounds; I can't imagine how small she will be in it! Thankfully we don't have to buy a new car seat; the seat is safe for preemies. That saves us some money! Something else that has to be done before she can come home is we have to take the infant CPR class. We pray we never need the knowledge - for Kellie's sake and any other baby who might need it!

As I talk about these "homecoming" requirements, I realize that we are getting closer and four or five weeks will pass before we know it! I am starting to prepare for Kellie being at home more and more. It is the "nesting" thing pregnant women do. In a sense, I'm still "expecting", it's just that Kellie is growing in her temporary home at the hospital rather than her permanent home. It has been so neat being able to watch her grow rather than just feel her! Today it was wonderful seeing her eat with her mouth! She just has to learn how to take a full feeding, then work up to 8 a day!

Thank you once again for all your support!

Julie, Kellie's Mommy!

I am sad today because Kellie has had a setback. I normally do pretty good through all this, but since we haven't had a downhill run on the "preemie roller coaster ride" in awhile, it's gotten to me this time. I guess it's not necessarily downhill, but more like a reverse run. To top it all off, on the day I most need Kellie to have her primary nurse, she wasn't assigned to us.

Anyway, Kellie had to be put back on CPAP late last night. She was frequently having critical apnea/bradycardia/desaturation episodes. They also suspect an illness, so they did a complete blood count test. It showed elevated white blood cells, but that can be a stress reaction and not a true indication of an infection. They will continue to monitor her closely, and at the smallest, additional sign of illness, they will draw blood cultures and start antibiotics. She will probably stay on CPAP for another week to let her heal up more.

What this means is that she will not be getting her MRI today and she had to stop bolus feedings and oral feedings - the MRI and feedings can't be done on CPAP. She also won't get her speech therapy exam today, and she probably won't have her occupational/physical therapy exam this week either. However, she should still have her repeat eye exam.

She will be set back for at least a week, most likely making her hospital stay a week longer...which puts her discharge sometime in the middle of July. This also means she won't be "graduating" to the special care nursery as soon as we thought.

On the positive side, she is now 100 days old and is four times her birth weight at 4 pounds, 10 ounces. I also just found out she is moving to another bed slot on the team. She will now be in a somewhat remote, quieter, darker corner of the unit. This should help her rest better and will also help us with feeding sessions. I've secretly been wanting her to move there since the end of March when another long-term baby went home who had been there. It was the baby who handed off the "oldest one in the NICU" baton to Kellie, so I guess that is just where the babies with "seniority" get to stay!

Thank you!

Julie

I will try and be more positive in this post! I know several of you were very concerned over my last one. I got over my sadness once I realized that the time back on CPAP was necessary and good for Kellie. Hopefully now she is stronger and healed up better. I do have great news to report...would you expect any less after all the prayer?

Kellie has only had a few minor apnea and bradycardia episodes since going back on CPAP. Since the main reason they put her back on it was her increasing apnea, they tested the level of Caffeine in her blood on Wednesday. The results came back to show she could use an increased dose. I don't think she'll mind, except I think she wants some chocolate to go along with it! They also tested her Phenobarbital level and it was fine. She will stay on the same dose of it. Both drugs get weight adjusted on Mondays.

Kellie was moved to a different "bed slot" on the NICU team. The new spot is larger, quieter, darker, and more private for us. She may not stay there long, however, because during rounds today the doctors said she might get to "graduate" to the Special Care Nursery the middle of this week. That will be a big change for us, but it means she is one step closer to home! The plan is also that she will have her MRI this Friday since she wasn't able to have it last Tuesday.

Kellie is growing like a weed and gained one-half of a pound in one week. She is now 4 pounds, 14 ounces. Today she is 38 weeks actual gestation age, meaning she is still two weeks "early". Tomorrow she will be 15 weeks old. If she continues with the weight gains she's having, she will be the same weight I was at my full-term birth. If so, she has two weeks to be 5 pounds, 11 ounces! She is getting a new supplement to the breast milk, MCT (medium chain triglyceride) oil, which gives her extra calories.

This morning Kellie was taken off the CPAP and put back on nasal cannula oxygen. She is doing fine so far. She will now be able to try oral feedings again soon. Maybe this time she will get the hang of it better since she is older and rested. She likes to get baths and doesn't like it when she has to come out of the water. She is getting older and wiser now. She knows when she is uncomfortable from a wet or dirty diaper or from lying too long in one place. She loves to be held and talked to and still loves her pacifier. Today we are taking her a mobile to look at. It was a gift and is the Fisher Price Soothing Symphony mobile. It has sound and lights. Maybe it will keep her entertained. She still loves her "womb sounds" player and the tape player. She was held for the first time Thursday by one of the volunteer "cuddlers". She liked that.

The best news in the past few days is that her eye exam on Thursday showed that the ROP disease has regressed even more than last week! Before the surgery she had Stage 3-plus in both eyes and now three-quarters of each retina has regressed to Stage 2! That still leaves one-fourth at Stage 3 that needs prayer for healing, and both retinas need to completely regress. Please keep praying for continued regression of the ROP.

Kellie was also examined Thursday by Dr. Kerschen, the Developmental Specialist. Dr. Kerschen said it is a little too early to tell what Kellie's long-term developmental problems will be since she was so early and so little and still isn't medically stable. Kellie's exam showed she has high muscle tone, stiffness, tremors, and is jittery. The MRI will not give any diagnosis, but may give an indication of what to watch for. Any significant problems will show up within one to two years. Kellie will continue to be examined for developmental improvements and delays. As she gets older it will be easier to tell what may be wrong. Please pray that Kellie will develop normally with regard to her neurological and motor development. Pray that she is protected from and healed of any major or minor complications.

Thank you once again for standing with us for the long haul. Thank you for the continual prayers! I am sorry I've been so slow in responding to any emails! Thank you to all those who have sent church, bible study, and prayer group names. I'd also like to continue my list of all the individual people who are praying, so if you read this and have never told us you are praying, please email us and let us know. It is very encouraging for us!

Julie

I'm sorry it's been a few days without news. I was waiting on Kellie's MRI results, but since they still aren't here, I figured I'd go ahead and write. I've also been going through 125 "inbox" emails trying to respond to them. That is a task. I somehow let it all get ahead of me.

Kellie did have her MRI Monday night. Hopefully we will hear some news about it today. She had to have two doses of sedative for the MRI and that still didn't knock her out, so they gave her some sucrose and wedged her pacifier in and then she settled down for the test. After that it went well. I will post just as soon as we know something about the results. Kellie also got her first round of immunizations on Monday - two shots in each leg. The shots made her cranky and sleepy. It was funny because Nurse Vickie didn't want to give them to her since they would hurt. My comment was, "after all the heel sticks, IV's, etc., I don't think this is any big deal!" The nurses tell me it's different to give shots, though. At least Kellie gets to have Tylenol for the pain this time around!

On Sunday, Kellie took in an entire feeding from a bottle! It was 30cc's, or 6 teaspoons. Monday she did fair with 20cc's, and yesterday she was just too tired to try it. We are going to wait to try nursing until she is on a three-hour schedule so that maybe she will be more interested. She tipped the scales Monday night at 5 pounds, and today she is 5 pounds, 1.5 ounces and 15.5 inches - 4 pounds and 4 inches bigger than at birth! She hasn't had any apnea or bradycardia for over three days. She is doing great with her oxygen requirements this time around. All that said, she may be graduating to the Neonatal Special Care Nursery today! She is now considered a "feeder and grower". The doctors haven't done their rounds yet today, so we will know more later. This move means she is one step closer to home and she doesn't need the intensive care anymore. All she needs to do now is stay there until she is strong enough and smart enough to take in all her feeding by breast or bottle. It will still be weeks away. The goal is usually to get preemies home on or before their due date. She was due in 11 days (Father's Day, 06/18) and won't make it home by then, but that is okay; early on we didn't think she would make it since she was so early and had so many problems. I want her nice and well before her homecoming so we can avoid having to be re-admitted.

Kellie will get a repeat eye exam tomorrow. We are hoping for more good news about the ROP. We will let you know how it turns out.

I have news about the other babies. Jacey, the fourth 23-weeker, was transported home to Minnesota last Friday, so now her family won't have to be so far from home. The transport went well. Daniel had laser surgery for ROP last Friday; he will have a follow-up exam tomorrow also. He is now over 4 pounds. Michael is closer to getting off the ventilator and he is now 2.5 pounds. We met a new family over the weekend. The baby's name is Ashley and she is a week younger than Kellie, was born at 25 weeks, and was due a week before Kellie (06/11). Her mom, Shawna, is worried about her because Ashley also had ROP laser surgery, but the disease kept progressing and her retinas are detaching. Now Dr. Varenhorst has said she needs to have scleral buckle surgery, which is where they place a silicone band around the eyeball in the hopes that the pressure will stop the detachment. Please pray for Ashley and her family. Pray that the buckle surgery will go well and that the disease will progress no further. Pray that Ashley's sight would not be lost. Pray for peace and comfort. Ashley will also have her eyes examined tomorrow.

Thank you once again for praying for us and the other babies. We really have a burden for the other families and know they need the same amount of prayer as Kellie, sometimes even more. We have seen so many miracles already and like to see even more and more!

Our prayer request today is that the MRI results would show nothing major and that the ROP exam would show more good news. Also, pray for an easy transition to Special Care...it will be hard to leave the NICU. That probably sounds weird to you, but it is true. We are quite comfortable there and we will have to get to know new nurses, new surroundings, and give up the intense care. We have mixed emotions about moving. On the plus side, our family doctor will now be involved with Kellie's care, (in addition to the neonatologists and nurse practitioners) making the transition to home easier.

Julie

After 108 days (15.5 weeks) in the Neonatal Intensive Care Unit, Kellie is graduating to the Neonatal Special Care Nursery this morning! I was hoping to be there when they moved her, but I won't be there until 2:00 and they will move her by then. Peter and I, and the Nurses, want to jump for joy and cry for sadness all at the same time. This is a really big step! Just when we "had it all figured out, someone changed the rules"! This will be an adjustment period, but it will be healthy and prepare us for her eventual homecoming!

In other news, Kellie's MRI came back normal!!!! Praise God! They were mainly checking her pituitary gland (because of the urine trouble she had) and it is fine! Her brain is fine, too!!! Yeah!! Thank you for praying so faithfully!

Kellie will have a sonogram of her liver today. Dr. Bloom wants to make sure it is okay. It goes back to her third day of life when she had the internal bleeding. They never did figure out where it all started. This sonogram will just double check that it wasn't her liver. Remember that the bleeding just miraculously stopped! We trust that there will be nothing wrong with her liver!

Feeling mixed emotions...

Julie

Kellie's liver/abdominal sonogram was fine! I was with her during the procedure and she liked having someone hold her pacifier in! I found out the reason for the test - her liver enzymes were elevated and they were checking for abscesses and cholestasis (stagnation of bile in the liver). Kellie will have a hearing exam on Monday. Please pray that her hearing is fine. She is doing great with her oxygen requirement. She took in one-half of a feeding by bottle today. She has to get through these steps, which will take about 3-5 days per step: one feeding per day (every 24 hrs.), then two (every 12 hrs.), then three (every 8 hrs), then every other feeding (every 4 hrs.), then every feeding (every 3 hrs.). Once she can get through all that, she can come home, barring any other problems. Dr. Bloom said that would still put her homecoming around July 4th, or four weeks from now. She had a great weight gain last night and is now 5 pounds, 5 ounces. She is really filling out her preemie clothes and even wore one of Jacob's newborn outfits yesterday, which wasn't really too big on her. She did have an eye exam today and it showed "regression". That is all Dr. Varenhorst told the nurse. We will read her chart tonight to see if it was improved over last week. Kellie will have a follow-up MRI in four months just to double-check everything.

The move to the "penthouse" went pretty well. Kellie is in a corner (leaving more room around her bed) and has a window above her bed. I think she likes seeing the light of day! I know it is nice seeing her in natural light. The same respiratory technicians work upstairs so we saw several familiar faces. It also worked out great because Kellie's primary night (7pm-7am) nurse, Bonnie, worked up in the Special Care nursery last night and we requested she take care of Kellie and she did! That was a nice transition. Vickie, her primary day (7am-7pm) nurse, transferred Kellie up there yesterday and that was great also because she knows Kellie and her history and could do the proper reporting. Bonnie wrote up a list of Kellie's likes and dislikes for the new nursing crew. We trust Kellie will be in good hands! We actually were allowed to adjust Kellie's oxygen settings, so that was empowering and a neat step. We will have to do it when she comes home, so we get to start getting comfortable with it.

While our transition to Special Care went fine, we were saddened by some news we heard. Remember I said that Jacey was transferred home to Minnesota on Friday? Well, she developed an infection and died early this week. We are really grieving for the family. That very well could have been us and while we don't know the feeling of losing our daughter, we know the feeling of almost losing her, and that was bad enough! We are so thankful that Kellie still has not had one infection and we don't understand why Jacey got one that killed her. We are thankful that the family could be at home when it happened rather than here. Please pray for the family. We feel their pain even though we never did get to meet them. Jacey was 3 weeks old.

Julie

We looked at Kellie's eye exam report last night. From what we can tell, the 3/4 of each eye that had regressed to stage 2 has totally regressed, and the remaining 1/4 is still at stage 3. We tried to call Dr. Varenhorst to clarify the results, but he is out of town until Monday, so we will call then. Kellie will be re-checked in two weeks.

Peter had a comment about our move to the Special Care nursery. While Kellie is (we think) still the oldest baby in the neonatal nurseries, we are new to (almost) everyone upstairs. It is weird. I know it is for me because now I'm "Mrs. Crooks" again, not "Crooks' Mom, Kellie's Mom, or just simply, Julie". I have to retrain everyone not to be so formal! Peter compared Kellie's graduation to a school graduation, where you've made so many friends, and you now wonder when you will get to see them all, and you'll miss them!

I thought of another blessing today as I was dealing with insurance. It is VERY good that Kellie was born early in the year, so that we get more "out of" her deductible. If it was the end of the year, we'd have to start all over again. Her specialists' visits, home oxygen, OT/PT therapy, etc., is all applied to her major medical deductible with no co-pays. It is a double-blessing since Medicaid is covering her deductible this year. Hopefully next year she won't meet it! It is $2,500! Peter says I'd better not meet mine...I've done that the past 6 years!

I want to share this verse from "Jesus Loves Me". It is a new one to me and is so appropriate for Kellie. It is off of her "Baby-go-to-sleep" Heartbeat therapy lullaby CD:

Have a great weekend!

Julie

We have a funny incident to report. We had a good laugh last night. When I called to check on Kellie, her nurse, Tonia, gave me the usual report and then asked, "What type of music did you bring for her tape player?" I said, "lots of lullabies". Well, Tonia said that she was over by Kellie's bed and swore she heard some Metallica (a heavy metal band) coming from the tape player when just a short time before that it was playing lullabies. I told her all I taped for Kellie was her quiet CD's, and then it dawned on me......when I was copying her new Celtic Lullaby CD, I thought the CD player was set to repeat that disc. WELL, it was set to repeat all five discs in the player. Once the Celtic one was done, it changed over to a group called Applehead, a Christian hard rock album, which is one of the hardest rock albums we have. (It is my house-cleaning CD...I guess I've cleaned house at least once in the past four months!) Since I hadn't listened to what I copied, that disc got onto Kellie's tape. Tonia said there were some other parents visiting a baby, I bet they thought, "what in the world?" I know Tonia was shocked. I guess you have to know us and that we have ALL types of Christian music except country and opera. Anyway, we are SO glad that it was Tonia because she knows us from the NICU. We can't imagine what any other nurse would think, since Tonia thought we were a little loony anyway. I guess we just want Kellie to hear what she will hear at home! What made the mental picture even more funny was that Kellie was awake and watching her mobile go around (something she loves to do now). She was probably thinking, "where am I and what is happening to me...someone please save me!" It gave us a good belly laugh before bed. Tonia said she would insert a different tape into Kellie's player!

Yesterday Kellie pulled her nasal cannula out. She was still sat'ing 92, so her nurse, Bobbie, decided to just leave it out. After 20 minutes Kellie's sats dropped to 88 (her lower limit), so Bobbie then put the cannula back in her nose. That means she can last at least that long without oxygen support! Way to go Kellie!

Also on Friday, the speech therapist assessed Kellie and coaxed her into taking a full feeding. On Monday, the therapist will show me how to work with Kellie. Earlier in the day, she took about one-third of a feeding for me before she had a bad brady. We later found out the brady was because she was overfilling her diaper. Oh my, was that fun to clean up! The nurse had me do it. It was everywhere, including through her sleeper and into the blanket. It was even under the tape from the monitor leads, making a new set of leads necessary. After that was all cleaned up, Kellie was searching and rooting for some more bottle, but by then she had received the rest of the feeding via her NG tube. I think she is getting the hang of "suck, swallow, breathe", but she didn't now how to add one more task to the process!

Well, it happened again...Kellie got to listen to Applehead, only this time it was VERY LOUD!!! Saturday morning, her nurse, Sandy, was trying to get her tape player to work and tried all sorts of things. She had been warned about the rock music. A little while later, the nurse practitioner, Janie, was examining Kellie when Applehead started playing - LOUD! She thought, "what in the world"? and went and got Sandy. In the process of trying to figure out the tape player, Sandy must have turned up the volume and then left the tape to play. Kellie was wide-awake, of course, and probably wanting to run away; or maybe she's getting used to the type of music! Tonia never changed out the tape the night before. In any case, there were lots of other parents visiting at the time this happened. We didn't hear about it until late yesterday, so it's no wonder when we showed up at the hospital after church that the parents were really checking us out - dressed in our church clothes and looking clean-cut...they probably were expecting black leather, chains, and tattoos! I'm sure Saturday morning they were rather surprised and wondering what we were doing to our child! Just like the many concerts I helped with when I was pregnant with Jacob and when he was an infant, Kellie may end up liking the stuff! Jacob's favorites groups are the ones he heard in utereo. Recently he's been asking us to turn up the radio in the car and also at home. Then there were the many hours he spent with me at the radio station when I was DJ'ing. I guess all this with Kellie will just prepare her too! At least it's put some big smiles on our faces! And I'll have you know the tape is now at home awaiting re-dubbing!

In other funny news, I added up how much milk is in the freezer...2496 ounces...that's 20 gallons! No wonder there's not much room in there! I guess when it's full I'll have to stop pumping!

I thought I'd explain some of the new photos. One is of me holding Jacob and Kellie the night before her eye surgery. I was really down, but holding both kids together for the first time sure felt good and it helped ease some of my tension. Another photo is of Kellie screaming. Vickie had just removed all the tape on her face to change her cannula and NG tube so she wasn't very happy about that. I have a shot of Jacob like that at age 3 months also and to this day, when he cries hard, he looks the same way! There is also a picture of Kellie getting her first bottle. The photo of her lying on her side wide-awake shows off her own pink and white receiving blankets. She looks so much better wrapped up in them instead of the standard hospital blankets! The "Little Bo Peep" shot is her dressed up in the outfit our pastor's wife gave her on Mother's Day. Then there is a photo of her watching her mobile go around, and she is sticking out her tongue like the "star" on the mobile. We just had to add another photo of Jacob holding her...they are doing the same hand motion. The last new picture is Kellie "talking".

Just as I was writing this, the head nurse called and said that the CBS affiliate is coming to the hospital today to do a follow-up story and would I be interested in speaking with them? Of course! Pass up a chance to show off our miracle daughter?!!? I have to get moving to get Jacob and me out the door now. Kellie will finally get an occasion to wear one of her "party dresses" that she will soon outgrow! She is 5 pounds, 10 ounces today. The dresses are sized to 6 pounds!

Have a great Monday! I'll let you know when we will be on Channel 12!

Julie

We were filmed at noon by Channel 12. The segment will air as part of their "Baby Your Baby" stories. It won't be on until sometime in August because the reporter is about to deliver her own baby. They will let me know the exact date it will be on. The "Baby Your Baby" segments air on the 10:00pm news every Tuesday, and then repeat on the Noon news on Thursdays.

Kellie's nurse had her dressed in one of her lacy dresses, but because I had her bundled and was rocking her, all you can see is the lace of the collar. I did wrap her up in her own pink blanket. I don't think she even noticed! Of course every time the camera man turned off the camera she opened one eye and then would smile and show off her dimples! Silly girl! In any case, she will be cute. The camera man took some shots of the four photos on the end of her bed, one of which is from her third day of life. The reporter also did a story about the NICU. When interviewing me, she asked me if I was scared about Kellie's birth and life (YES!) and what I would tell other parents. She also asked me my opinion of the NICU and the staff. Of course I had nothing but good to say about them! I told the parents to just take it all one day at a time and prepare for the ups and downs. I told them to trust the babies to the doctors and nurses and to rely on their faith.

I realize I've written quite a bit over the last week! That is probably why the house looks like it does!

Julie

Happy almost due date Kellie!!!

Sorry it's been a while since we've done an update. The pace is starting to pick up as we get closer to the end of Kellie's hospital stay. We need to be more involved so we will be better trained to take care of Kellie once she gets home. We have mixed emotions about bringing Kellie home. While she's in the hospital, she gets constant care by people who know how to take care of her, are awake all hours of the day, have monitors to measure how well she's doing, and have the right equipment (and people) to handle any major emergencies. At home we won't be able to be by her bedside 24 hours a day because we will need to sleep (if we can!) We won't be able to keep track of her very well at night, we may or may not have any monitors (and if we do, we understand that there are usually lots of false alarms), and we'll have to "assess how she looks" to determine if she is okay. I know lots of people have been through it, and we'll make it too. It is just a little scary to have to take on the responsibility. I remember when we brought Jacob home after he was born. Every night Julie or I would wake up several times and put our hand on his back to make sure he was still breathing. I guess it won't be much different with Kellie.

Kellie is now 6 pounds, 1 ounce and 17 inches long!!! She is outgrowing some of her clothes. She was due tomorrow, on Father's Day. Now that she has reached 40 weeks gestation age (full-term), her age will now be "corrected". She will have her actual age, which is 17 weeks tomorrow, and she will have a corrected age - next Sunday it will be "one week". This corrected age will help us assess how she's doing as she gets older. For example, when she is an actual age of 6 months old, her corrected age will be 2 months, so she should be doing things like a 2 month old, not a 6 month old.

The speech therapist is working with her on bottling skills 3-5 times a week. Kellie is making very slow progress with the bottling. She can usually get down about 1/2 of a feeding before she wears out or gets too mad. Three times, including once today, she has gotten down a full feeding. She is trying a bottle every 12 hours or so, or twice a day. She still gets breast milk mixed one-to-one with high-calorie formula and MCT oil.

We finally got confirmation from Dr. Varenhorst's office that Kellie's ROP has truly regressed in 3/4 of both eyes but 1/4 of each eye still has stage 3. They said it is not likely that her eyes will get worse, but it is possible. Kellie was supposed to get her hearing exam this week, but she keeps being put at the end of the list because there are other babies who are going home that need it first. Hopefully she will have it this coming week. They will use the brain wave method to check her because it is more accurate that just seeing her responses. The Occupational and Physical therapist will also work with Kellie this week and show us and the nurses ways to help her in that area.

The other baby, Ashley, who we asked for prayers for, had a good ROP eye exam this week. Her retinas really aren't detaching; however, the ROP isn't yet regressing. Ashley went home today! Yeah for her! Her homecoming was only 6 days past her due date. Please pray her ROP will completely regress. Pray for her oxygen needs, they are still quite high. Pray that her family will adjust well to her homecoming, especially her big brother Preston, who is almost 3 years old.

Baby Daniel will have hernia surgery this week. Please pray all goes well with that. He may get to go home in the next couple of weeks! He was due July 6th.

Kellie and Jacob have a new cousin! Brendon was born on Wednesday, June 14, at 1:55pm. He was 9 pounds even and 21.5 inches long. Somehow we don't think Kellie will ever catch up to him! Brendon was joined on the other side of his family by a cousin, Matthew, who was born 3.5 hours after him! Kellie very well could have been born that day, too, but of course she was in a BIG hurry!

The prayer request for Kellie is that she will get the whole bottling concept down so she can take more oral feedings. That is all that is keeping her from coming home now, and it is frustrating for us to just sit around and wait for her! A great thing is that her oxygen needs are stable and she is needing just a small amount. Pray that it will stay on that course.

Thank you once again for standing with us!

Peter

Yes, Kellie's due date was today and she is 6 pounds, 2 ounces...not bad for her age!

Happy Father's Day to her Daddy, Peter, who continues to amaze me with the support he's given through this whole ordeal. It hasn't been easy on either of us, and he has to support the kids and me financially by working long hours every day, then coming home and supporting us emotionally. He and Jacob are getting closer because of the times when they stay home and I visit Kellie - their "buddy time". I have trouble keeping up with things and I'm not working...so I don't know how he does it! He devotes lots of time, dedication, and love into every role he has - husband, father, and engineer!

On Saturday I replied back to 125 emails so I should have everyone caught up. If I missed you, I'm sorry, your mail must have ended up in the Delta Quadrant! It is a load off my back, and I will try better to keep up in the future!

On Friday, I was contacted by the Wichita Eagle reporter in order to finalize the newspaper story. While the story isn't specifically about Kellie, it will be neat anyway. It is about Kaitlyn Adams, the eight-year-old girl who donated her Beanie Baby collection to the NICU babies back in March. To refresh your memory, Kellie was the "smallest and sickest" baby at the time and was the only baby Kaitlyn was allowed to visit. She gave Kellie her most treasured Beanie - Hope the praying bear - who is still in Kellie's bed as a reminder of Kaitlyn's generosity and the hundreds of people who had and still have hope for Kellie and who are praying for her. The story will be in the "Neighbors" section, possibly this Thursday - if not this week, then in the future when space allows. If you are in Wichita, you will have to check it out. If it is on the Eagle's web site, I'll post the link! ...okay, we've been interviewed by a news station and a newspaper...when is the magazine article.....ha ha ha, just kidding!

Thank you for praying for Kellie's eating progress! Just over the weekend she's done better and we trust she will stay on that path! On Saturday she bottled a whole feeding (36 cc's, or 7 teaspoons), then today she took in another full feeding and also two-thirds of a second one (25cc's). Neither time today did she choke, brady, forget to breathe, or desat. When I fed her at 8pm, she was really excited to get the bottle and knew what to do right away. She took the first 12cc's in 5 minutes, and then the other 13 in another 25 minutes. Then she just decided she'd had enough and spit the nipple and milk out when I offered it to her. At least she is getting the hang of what to do and knows it will help her hunger, and knows when she is satisfied. When I fed her, her oxygen requirement was also low, which is a really good thing; usually she has to be turned way up to bottle.

Please continue to pray that she will keep learning how to eat! Remember she has to get these two feedings a day down, then three, then six, then eight, and then she can COME HOME! So the faster, the better, without wearing out and needing more oxygen!

Thank you! Have a great week!

Julie

Kellie is four months old today! She is 6 pounds, 4 ounces!

Yesterday Kellie was switched to a 3-hour feeding schedule instead of a 2-hour one. This should hopefully give her better rest between feedings because every time she is feed via NG tube, she has to be unbundled and partially undressed so the nurses can check the placement of the tube. Now she will only need to be messed with every 3 hours. Also, she will hopefully be hungrier when it's time to eat and therefore do better with her bottle-feeding. They cut back on the amount of fluid she gets but increased the amount of MCT oil that is added to her milk. That way she won't get too much at one time, but she can still have extra calories.

We found out yesterday that Baby Daniel gets to go home this week! He didn't need hernia surgery after all! He is going home two weeks before his due date...that is great for a "23-weeker"! Thank you for praying for him! Please pray his family - Mom, Dad, and big sister, Sarah, will adjust smoothly to having him home. They will have to make frequent visits to Wichita, which is four hours away from home, to take Daniel to various doctor appointments! We will miss them at the hospital, but are so glad they are going home!

Please continue to pray for Kellie's eating status. With her new schedule, she has to get down 51cc's of milk instead of 34cc's in order to complete one bottle. That is a lot harder work. Last night she got down 24cc's then she decided she was done. Pray she can make great progress so she can come home, too!

Thank you!

Julie

Today Kellie is 6.5 pounds! She is still pretty short - 17 inches, so she's pretty chubby for a preemie! She was able to sit in her bouncy seat on Tuesday for 25 minutes, and then she started desat'ing. The occupational therapist was really happy that she lasted that long!

She is now on a fixed amount of oxygen, instead of being turned up and down in relation to her oxygen saturations. This is to wean her off the monitor. They want to find a level she can stay at without any problems. A steady amount of oxygen should give her more reserve for bottling. Yesterday she got down three-quarters of a feeding. Yeah!

She had an eye exam yesterday and it showed the ROP is still regressing. However, she now has "slight dragging of the macula". The macula is the center of the retina. It can be pulled out of place from the scar tissue from the surgery. This could cause her to have reduced vision - 20/200 or worse. Please pray the dragging would stop so she can have the best vision possible! She did pass her hearing exam yesterday! Praise the Lord! She needed a hearing exam after all the loud rock music....ha ha ha!

The biggest news of the week is that I will be taking care of Kellie at the hospital soon! The nurses will be there to guide me, but I will be doing most of the care! This is to prepare all of us for her homecoming! We trust she will do better once she is out of the nursery environment where I am her consistent caregiver and where it is dark and quiet. We will be sharing a hospital room. This will go on until she can get down all of her feedings by mouth. It is hard to say how long it will be. It means there are several changes on the way in our household! Once again just when we get everything figured out, it changes! Please pray for my confidence in caring for Kellie and pray that Peter and Jacob will do fine without me to take care of them, too!

Have a great weekend!

Julie

I just called to see how Kellie did with her 2pm feeding with the speech therapist. She took the whole feeding - 56 cc's - a full two ounces! Yeah for her!!! She did it in 35 minutes, which is great, because she needs to do the feedings within 30 minutes (so she doesn't get so worn out).

I forgot to mention earlier that we received Kellie's itemized bill through June 16th. It is 87 pages! It is quite interesting. We've been going through it seeing just how much certain things cost. Many of the things used in her daily care aren't charged for directly, but they are part of her "bed charge". Thankfully as time goes by she is costing less per day! It looks like her hospital stay won't top a million dollars after all! She's still worth that to us!

Julie

I am in a sleep-deprived state after spending two nights with Kellie at the hospital. She slept great the first night and I only had to get her up for feedings every 3 hours. The second night, she fussed most of the night, leaving me with about 3 hours of sleep (and not all at once)! ...the joys of having a newborn...=)

Actually, I am overjoyed at the time I was able to stay with Kellie and take care of her! It was so wonderful holding her whenever she fussed, changing all her diapers (am I nuts?), feeding her, and sleeping next to her bed (but that's why I'm sleep deprived!). Staying with her was like we finally had some "post-partum" time - like she really was in her first week of life, not a four-month-old. Kellie really enjoyed being out of the nursery and in a private room where it was quiet and dark. She ate a little better but still has so much progress to make. The nurses, speech therapist, and I made the decision to give her a bottle three times a day now instead of just two, even though she's not getting down a full feeding very often. This will give her more practice and hopefully increase her stamina. I've tried nursing her again, but she gets really mad and wants no part of it. She is happy with her pacifier and nothing else. In the meantime I keep pumping away.

In the room, Kellie had an apnea and bradycardia monitor, but no oxygen saturation monitor. The monitor she had went off several times the first day. I can get out of bed pretty fast! It wasn't too bad checking on her with her right next to me, but when she comes home and I sprint through the house (including up the stairs), now that will be a sight! Hopefully she won't have too many alarms at home! In the nursery, Kellie gets her gavage feedings from a syringe that is hooked up to a pump. In the room we didn't have a pump so I had to hold the syringe in the air and "gravity" feed her. The nurses taught me how to check the placement of her NG tube. It is extremely important that we check the placement of the tube to make sure it's in her stomach and not in her trachea. I've watched the procedure for months, and it was neat to get to do it myself. It is rare that babies are gravity-fed, and the hospital's supply department had a hard time coming up with the equipment for it. Leave it to Kellie to have something "unusual". That is par for the course with her!

Jacob did pretty good leaving Mommy at the hospital! Peter said when they left Sunday night that it took Jacob a few minutes in the parking lot to say, "where's Mommy?" Peter explained that I was going to take care of Baby Kellie at the hospital. He accepted it just fine. When they pulled into the garage at home, Jacob said, "Mommy not home. Stay Wesley Hop-ital Baby Kellie. Take care of her." (It is always "Wesley Hopital", not just any hospital!) On Monday and Tuesday, Jacob went to day care for the first time in his life. He did great, but Peter sure had a hard time with it! He said when he dropped Jacob off it was sad - like he was going to the first day of kindergarten or something! We are really blessed because it was our church's day care, so we knew he was in great hands and at peace with it! He just thought he was going to the church nursery. I'm sure he wondered why he had to take a nap there and stay so long! Our church won't let us pay because it is their way of helping us, and it was a big blessing!

I will be going back to the hospital on Saturday to stay with Kellie until she can come home! It could be two weeks...or six...it is hard to say. We trust that she will figure out the bottling quickly and our time at the hospital will be short so we can come home and be with the whole family. "The boys" are going to have to do it without me. It will be hardest on me, I think! I will be able to take care of Kellie, but not them. In some ways it will be a "vacation" from home, but since I do all the household things, it will be hard to do stuff like keep up with the bills and insurance mess, etc. while I'm gone. We are trying to work out arrangements for a laptop computer I can use at Wesley. Then I can at least stay connected to the world via email and continue to write these updates. One of the main things that kept me from going nuts with my four months of bed rest (while pregnant with Jacob) was the ability to use a computer. We hope it works for this.

While on bed rest I was able to direct Peter through many tasks at home while lying in bed or on the couch. With me across town this time, he will have a lot to learn! He will have to do the cooking and all of Jacob's care...in addition to working! As a family, this will be the hardest time of this whole ordeal, but it is the best for Kellie. I will not be able to leave my room without a nurse coming to sit with Kellie...not even to walk down the hall for ice or a change of scenery. Peter can come stay with her to give me a break, and we plan on doing that occasionally. That way I can take care of necessary business and spend some time with Jacob, and Peter can do some of Kellie's care. Unfortunately, the "Mother/Baby" rooms at Wesley don't have any good views. I think I'll get the "coops" pretty bad. I won't be able to have many visitors so that makes it worse. I've already convinced some of Kellie's nurses to spend some breaks with us to help pass the time. I plan on finally getting thank you notes written and also organizing Kellie's photos. I'm also behind on filling out her baby book and filling in the missing pieces of her health history. I know this web site needs a short version of her birth story for the people who haven't kept up with this from the beginning, so I plan on writing it. It will be under another link.

When I come home from the hospital, Kellie will be with me, so before I leave I not only have to get Peter and Jacob set up for my absence, but I also have to get everything ready for Kellie's homecoming. I will be quite a whirlwind the next few days! Peter told someone at church that the past four months have been like a pregnancy of sorts...really bad in the beginning, more comfortable in the middle, and now, just wanting to get it over with. For those of you who asked how they could help in the "early days", remember I said the closer it got to Kellie's homecoming, the harder our lives would be. I was right. Now is when we need more help with things. We know we will get through it, but we will be exhausted when it is all said and done. We know we will look back on this in a year and wonder how we did it. We already say that about the first month of Kellie's life.

I found out when Wesley's NICU, including Kellie and me, will be on TV. The "Baby Your Baby" segment was taped on Monday, June 12th. It will air on CBS - KWCH (Channel 12 in Wichita) on Tuesday, August 22nd at 10:00 PM and repeat on Thursday, August 24th on the noon newscast. The NICU head nurse, Cindy Harmon, will also be on the 5:00pm news (Newstalk) on Wednesday, August 23rd. If you are on my email list, you already received notice of these dates. I will send everyone a reminder closer to the date. (If you aren't on our "Kellie list" and wish to be, email me and I'll add you!)

In other media-related news, the Wichita Eagle newspaper story will run in the Thursday "Neighbors" section sometime soon. This is the story about Kaitlyn Adams, the eight-year-old girl who donated her Beanie Babies to the NICU babies. I was interviewed for the article since Kellie received Kaitlyn's most beloved beanie - Hope the Praying Bear. Since we don't get the daily paper, you may read it before me! Someone let me know if you see it! I'm hoping they will put it on their web site for those of you out of Kansas (and the USA!).

Well, I need to get plugging away at one of my many "to do" lists! I'm not sure if I will post an update before I leave home, and I'm not sure when I'll get a chance to post again.

Please pray for our entire family. Pray that this time apart will go smoothly and that we all can handle whatever comes along. Pray that Kellie will make great progress with me taking care of her. Thank you!

I had this song come to my head this morning, and it is appropriate for how we are feeling:

After singing that, I had to read 1 Peter 5:7 - Cast all your anxiety on Him because He cares for you. Then I read the surrounding verses. They brought me peace. I want to share them with you.

Julie

Here is the link to the newspaper story that mentions Kellie. The article appeared in Thursday's (06/29) Wichita Eagle in the "Neighbors" section. If anyone has a copy of it in print, please save it for us. Several editions, including our copy, didn't have the article. We would really love to have the "real thing", but we are very grateful this article was chosen to appear on the web site. We are not sure how long it will stay on the site. For that reason we downloaded it. In the future, if you want to read it, we can email it to you.

Kellie is 7 pounds, 2 ounces today! She isn't doing very well on her bottling skills. We hope to change that for the better once I can be her consistent caregiver. If for some reason she doesn't get the hang of it, we may opt for a gastrostomy tube (G-tube) to be surgically placed into her stomach. We hope we don't have to do that, but it may be the only way to get her home.

Julie

I have no idea when this will be posted to the web site. I am sitting in Kellie and I's room at Wesley hospital. We have been here since Saturday night and we are pretty settled in now. Peter is so wonderful! He spent the better part of three days setting me up with this laptop computer - borrowed from his company (what a blessing!) We were hoping that I could use an extra phone line in the room to write these updates and send and receive email, but because of the internal phone system, I can't. So, I will type these updates and send them home on a floppy disk so Peter can upload them to the site. I am lost without email…I guess it's a sign of the times! Peter is either reading the email to me over the phone, or printing notes out for me. The problem is I can't reply, and he doesn't have the time to do it. So, please forgive us for not replying. Tomorrow I am escaping by sending Kellie to the nursery for a few hours so I can enjoy fireworks with Peter and Jacob.

Kellie and I are really getting to know each other! The first night we were here I didn't get much sleep because her saturation monitor was going off all night. Needless to say I was quite a zombie yesterday. Last night we didn't have the monitor…I told the doctor I was going to throw out the window onto the roof! Her apnea/bradycardia monitor hasn't gone off much, so it isn't as much of a problem. Kellie isn't making much progress with her bottling skills yet, but we are learning together. She is sleeping wonderfully…especially at night! She has to be fed every three hours, but we are both getting adequate rest now. She had an occupational/physical therapy exam this morning and she is progressing nicely with those skills. The therapist taught me how to do some exercises with her to increase her flexibility and ability to handle touching. She is tolerating touch better now that she is receiving more positive touching since I can hold, rock, and massage her anytime. She has her fussy moments, but settles nicely most of the time. Tomorrow she gets her last dose of Phenobarbital because she isn't having any signs of seizures…another answered prayer! The only medicines she will have after tomorrow will be vitamins and caffeine (for apnea). In fact, her caffeine was going to be stopped last week, but she started having apneic episodes again.

It is wonderful taking care of Kellie! I gave her a bath for the first time tonight! She loved it, but the little tub she used to use is too small for her. I have a photo of one of her early baths to post that is really cute. Hopefully Peter can post it soon. He also took some photos tonight. Peter and Jacob are surviving at home with the help of our niece. Some night they will probably come stay overnight at the hospital. Peter is going to come up and stay with Kellie sometime so I can have a break and also spend some one-on-one time with Jacob. I was able to pick out one of the "better" rooms in the unit to stay in…one that is more like a hotel room, not a hospital room.

We have been meaning to let you in on some of our feelings regarding this web site. Ever since the beginning, every time we see the "hit counter" go up, it makes us feel great! Every hit on Kellie's site is a (somewhat) silent, "I'm thinking about you!". Even if you can't write, call, or visit, you let us know you care by visiting the site for updates. Some of you visit more than once a day! WOW! We cannot say it enough how much everyone's thoughts and prayers mean to us! We never dreamed in the beginning how many new friends we'd make because of Kellie! It is quite amazing!

I had a Bible verse really sink in on Saturday…"man does not live by bread alone but by every word that comes from the mouth of God" - Matthew 4:4. There is absolutely no way we could have made it through all this with out the mercy, grace, and love of our Heavenly Father and the truthful words of promise, comfort and hope he gives us - in addition to the people He's brought into our lives to bless us! We love being a part of the Family of God! Thank you for helping us in our time of need. We hope we can give back just a small part of it to others.

Julie

I'm waiting for Peter to come pick me up so we can enjoy the holiday as a family (minus Kellie). I thought I'd write again while I have the chance. Peter added several new photos to the web site this morning. I don't know which ones they are since I can't go to the site here at the hospital. I plan on checking them out during my brief visit home tonight. I will try to post their descriptions soon.

Kellie is all decked out in a patriotic dress today. I will have a photo as soon as one is available. It is a red and white sundress with stars all over it and a flag applique on the chest, a red cardigan, and a red and white knot cap with stars that match the dress. I've been waiting a long time to see her in the dress. It is the only outfit I've bought her full-price because I couldn't resist it. At least she can celebrate her first July Fourth holiday in style! We were hoping to get her home by now and the outfit was supposed to be her homecoming outfit…it still can be, I guess.

Today Kellie is 7 pounds, 7 ounces! Her length, chest, and head will be measured tonight, like every Tuesday. I'm curious about her length. Last week she was 18 inches. She has an adjusted age of 2.5 weeks. So, she is a 4.5 month old in a two-week old's body…with an even younger brain. She is getting her last dose of Phenobarbital tonight. Most babies go home on it, so it is another big milestone and answered prayer!

Kellie is making slight progress with her bottling. For her last three bottles, she has been more relaxed and coordinated. She is getting about 10cc's more down (2 teaspoons) each feeding. She is not having any brady's (heart rate below 100 bpm) during bottling, and she is aggressive with her rooting. She has learned to like laying on her side in her Boppy (c-shaped) pillow while eating. I am going to discuss advancing her bottles with the speech therapist in the morning - to every other feeding, giving her 4 bottles a day instead of 3. I think she is ready. Her oxygen saturations have been great during bottling, and I haven't even increased her oxygen settings. I've made the decision to not even try to nurse her. It will be too much stress on both of us that we don't need. I'll just keep pumping until it makes sense to stop. Please continue to pray for more advancement with the feedings. Pray that her brain and lungs would continue to heal and grow.

Kellie has been sleeping wonderfully, although she does have a few fussy periods every day. We are both trying to figure out what she wants when she cries. She does enjoy snuggling more and more.

It's time to move Kellie back to the nursery so I can leave for a few hours. The respiratory technicians have to accompany the nurse because of Kellie's oxygen, so we have to work within their time slots.

I am passing the time quite nicely without getting too bored. Kellie's care actually takes quite a bit of time. Since we are up at night doing feedings, I nap in the morning to make up for lost sleep. I am actually getting caught up on all the thank you notes I have to write. I just wish I could reply to the email waiting in our inbox! Please know I read your mail and appreciate it!

Have a great holiday!

Julie

Today is our 9^th wedding anniversary. We really get to live it up this year! I think we'll celebrate by having him bring me a scoop of ice cream…I’m having withdrawal from it!

Kellie has made some good progress with her feedings the past two days! She is taking every other feeding by bottle now, and got 3 full feedings down within 12 hours on Tuesday night and Wednesday morning. Since then she has consistently gotten down 40 cc's of her needed 62 cc's. We've learned how she likes to lay while eating and now we're figuring out what temperature she prefers the milk.

Kellie had an eye exam yesterday and it showed that the ROP has completely regressed in the right eye and still has some improvement to make in the left eye. Dr. Varenhorst is really pleased at how well the surgery improved her ROP. He is really glad she didn't have any bleeding or retinal detachment. She may still have some impaired vision, but nothing that can't be corrected. Praise the Lord! Please continue to pray that the disease would completely regress in her left eye soon. She will have another follow-up exam in 3-4 weeks.

I'm still getting about 3 hours of sleep at night that comes in spurts. Last night Kellie's monitor wasn't picking up her shallow breaths, so it had about 15 false alarms in one hour. The next hour she fussed around every few minutes. Then the next hour it was time to eat. Finally about 2:30am she fell asleep (for 6 hours) and from 3-5am I was able to sleep, then it was time for another feeding, so I slept again from 6-7:15 am, when the construction crew in the next room woke me up with their drills and screwdrivers. Not to mention that the air conditioning unit in the room is very loud when it comes on and off. Add to all that the fact that the air ambulance lands outside my window, and it must have been a busy night for their service! Whew! Once I write this I am going back to bed…my very uncomfortable bed, but the way I'm feeling, I will sleep anywhere!

Since yesterday was Wednesday, the lunch was the same meal as the Wednesday 19 weeks ago when they told us Kellie wasn't going to make it. Eating my chicken fingers and mashed potatoes reminded me of how I ate that day not because I was hungry, but because I knew I'd pass out if I didn't eat. I remember almost choking on my food that day in-between sobs and prayers. I was able to enjoy the chicken a little more this time, especially since I was so happy about the three full bottles Kellie took all in a row. What a change 19 weeks makes!

When Kellie sleeps, she sleeps really well. She is outgrowing more and more of her clothes, so I will need to bring up some more of her bigger clothes. It seems weird to have her wear clothes other than doll or preemie sizes. Today she is wearing one of Jacob's baby outfits and it brings back memories. Before we know it she will be the size Jacob was at birth - 8 pounds, 1 ounce.

Well, I'm about to fall over into this keyboard. I have to catch some sleep before Kellie decides to start stirring.

Julie

PS. After I wrote this I slept about 15 minutes and then the fire alarm outside my door went off! Whoever said hospitals were the place to rest?

Kellie had a wonderful Saturday! She took four whole feedings, plus one-third to one-half of three others. She may have been able to take all 8 by bottle, but we are trying not to push her too hard. When she is hungry, a tube-feeding doesn't satisfy her. During the past two days, when she want to eat, it's not enough that her stomach is filling up. She wants to do the work, too. For that reason, I started giving her "token" bottle feeds during her NG feedings. That way she thinks she's done the work. I did that for one feeding Friday night, and then two on Saturday. I would have done the third one, too, but it was 5 am and she was sleeping so soundly that I just hooked the feeding on. Two days in a row she's pulled out her feeding tube - I think she's trying to tell us something! After she can consistently get more and more feedings down she can COME HOME! We are thinking that she will be able to do that by the end of the week! Dr. Bloom has been gone for awhile, but he will be back on Monday morning, so we are anxious to talk with him!

Kellie is 20 weeks old today (3 weeks adjusted age) and weighs 7 pounds, 10 ounces! WOW! She is really getting snuggly with Peter and me. She loves to lay on our chests. What a long way she's come from the days when we couldn't even whisper to her, let alone touch her! We are all, including Jacob, starting to bond with her more and more. Thursday night I told Peter I'm finally starting to feel like we are a whole family. When all four of us were hanging out in this hospital ("hotel") room, I imagined we were just on vacation somewhere…Peter was flipping channels on the TV (with cable, which we don't have at home), Jacob wanted to go get ice and water from the machine down the hall, I was running around doing "business", and Kellie was crashed out on Peter's chest. Sounds like our evenings on vacation if you ask me, with the addition of Kellie. It makes me really long for one, but we don't know when we'll get one.

Jacob continues to love his sister more and more. He wants to do everything he can to take care of her…get me clean diapers, throw the dirty ones away, hold her bottle and pacifier, put her dirty clothes in the hamper, help me pump milk (he's been doing that since the beginning), and give things to the nurses. I let him push the reset button on Kellie's monitor a few times and you would have thought I'd given him the world! For so long he's had to have so much self control, and done such a fantastic job of it, where all of Kellie's buttons, lights, tubes and wires are concerned. He was so excited to finally get to touch something medical related. He really was a big help, because when her alarms go off during a feeding, it is quite a task to get up reset it. It is also annoying, so the sooner it is reset, the better! I have a feeling I'll be letting Jacob push that button at home quite a lot!

I was able to run downstairs to the NICU last night and see Michael and talk with his parents. He is 13 weeks old and is 3 pounds, 10 ounces. He has been off the ventilator for 3 weeks. His eye exam this week showed that he has ROP developing also. It is at the stage now where it could resolve on its own, but things can change rapidly, as with Kellie's ROP progression. Please join us in prayer that Michael's exam this coming week will show the ROP has not progressed. Pray he won't need the laser surgery. Thank you!

I've also been in contact with Daniel and Ashley's mothers. They are both doing great at home and are making great progress. Their eyes are healing nicely from their surgeries also. Please continue to pray for all these kids - they still have to get through their first year (two, actually) without any other sicknesses. Thankfully all four of them will be fairly old when the winter cold/flu/RSV season hits from October through April. All of them have, or will have, oxygen and monitors at home for a few months and will need to be protected. Pray for all our families' sanity as we try to learn new routines with our babies, hold up under the pressure of the medical equipment, and adjust to not being able to just go anywhere at anytime. Christi, Daniel's mom, and Shawna, Ashley's mom, tell me it is quite a chore just getting the kiddos out the door with all their stuff! I'm sure we will know about it all too soon!

Today I'm going to send Kellie back to the nursery so she can have her car seat trial. They will let her sit in it for 90 minutes while they monitor her oxygen saturation. If for some reason she can't handle a typical car seat, we can borrow a car bed from the hospital. I don't anticipate any problems since she is so big. Daniel needed a car bed because he was barely 5 pounds at discharge. Since Kellie will have to go to the nursery anyway, I plan on leaving her back there a little longer after the trial so I can run home and spend some time with Peter and Jacob, an also pick up stuff for new projects to work on this week. This past week with Kellie has gone fast and I'm sure I can keep handling it. I'm so excited to get her home, but I’m not too excited to start cooking again! …there are advantages to having food brought to you on a tray three times a day, even if it isn't the best tasting!

Well, it's now 1:15 am and I'd better catch some rest before Kellie's 2 am feeding!

Please continue to pray for Kellie's eating progress! It's working so far! It'd be wonderful if she could make it home this week, before we hit the "5 month" mark!

Thanks again for listening and giving your support!

Julie

Your prayers are working once again! Kellie has taken off wonderfully the past few days! Everyone is amazed at the progress she has made! She had her feeding tube removed today!!! She hasn't needed it since 5am Tuesday! She has bottled complete feedings ever since then! She has consistently eaten 60-90cc's (2-3 ounces) each feeding! Until today she was eating every three hours, but now she is eating so much at one feeding that she can go for four hours if she wants to. Her minimum intake must be 19 cc's per hour. So if she eats at least 57 cc's she can eat every three hours, but if she takes at least 76, then she can wait for four hours.

Since she is eating so well, and has taken all 8 feedings for two days now, she gets to come home soon…as in Monday or Tuesday!!!! This will give her 4-5 days eating well to make sure she can keep it up and gain the right amount of weight. Today she is 7 pounds, 14 ounces! She will be over eight pounds when she goes home! Jacob was 8 pounds, 1 ounce at birth, so it will seem like taking a newborn home, not a five-month old! Kellie passed her car seat trial on Sunday! She had to sit in it for 90 minutes without desat'ing in order to pass. This way we know she can handle riding in the car in a regular car seat. Had she failed, she would have needed a car bed. She didn't care for being restrained in her seat, so it may be a loud ride home!

Since her car seat trial was performed in the nursery, I was able to "escape" from the hospital room for a few hours. We ate out as a family then I did some things at home. It was nice to get out, but the time went fast. Kellie didn't like being back in the nursery with all its noise. She has really liked the quiet (for the most part), dark room. The consistency of my care has helped her out so much! On Tuesday night when Peter and Jacob visited, Peter stayed with Kellie and Jacob and I went across the street to the drug store. It was great to get some exercise and spend time with Jacob. It all happened at the time of Kellie's feeding, so Peter attempted feeding her. She got one-half of a feeding down before I returned, but it took her awhile. Peter was ready to let me try when I got back. Kellie and I have a system down and it amazing just how much work it takes to feed her. The only other person who can feed her well is the speech therapist, who originally taught me how to do it. Today the therapist said "you don't need me anymore!" That is one less "specialist" Kellie has to see! She hasn't had a physical/occupational therapy visit in awhile, but the last time she had one, it was better than the previous visits.

Thank you once again for your faithful prayers! We still cannot do it all without you! My time in the mother baby program has been extremely beneficial for Kellie, and I've been handling the boredom fairly well. Peter and Jacob are doing good at home. It is so wonderful to think we will finally be a family at home next week. It has been 21 weeks in the making!

Julie

Announcing the homecoming of Kellie Christine Crooks...

YES, KELLIE IS FINALLY HOME!!!!

She arrived home at 5:10 PM today, Monday, July 17, 2000, after 148 days in the hospital (108 in the NICU, 23 in the Special Care Nursery, and 17 in the Mother/Baby program). She is 21 weeks old and is four weeks past her due date.

Her homecoming means she has officially survived according to the hospital's definition (a baby going home). This means she has for sure beaten the "less-than-one-percent chance of survival" statistic given to us before her birth.

Kellie weighs exactly eight pounds today and is two ounces away from being seven times her birth weight! She is one ounce less than Jacob was at birth. She is still really short at 17.5 inches.

We are very happy to be home and we will not miss the hospital, but we will miss all the friends we made there. Kellie was seen by seven different neonatologists (one primary), several radiologists, a cardiologist, an endocrinologist, a pediatric surgeon, a retinal-specialist ophthalmologist, a neurologist, a speech pathologist, an occupational therapist, an audiologist, several neonatal nurse practitioners (one primary), and 102 of about 150 nurses (two primary)!

We left the hospital with a promise to visit and update the staff with photos. Everyone cheered us on today and it's the one time when they can say, "we're glad to see you go!"

Kellie screamed most of the way home mainly because she doesn't like her car seat...it's too restraining! She did finally settle down and when she woke up in the living room, she really checked everything out. Jacob is taking toys over to her and introducing them, and he has already helped feed and burp her, read to her, and laid down in her boppy pillow with her. Peter hung a big "Welcome Home" sign on the house and when we pulled in the driveway, Jacob was the first to yell, "Welcome Home, Baby Kell-yee!"

Well, I need to get some rest since I got the usual three hours sleep last night, but didn't get any naps with all the discharge activity. Now that I am home I can start emailing again and updating the web site easily and more often. We will post some more photos soon.

Kellie had her hospital photo taken this morning and it will be available on the hospital's web site in two days. We will email you the link once it is available.

Thank you all once again for the support, encouragement, love and prayers you have given our whole family. We finally feel complete as a family and are glad to put the Wesley days behind us as we anticipate the future!

Thanks again!

Julie, Peter, Jacob, and Kellie

We see there have been a lot of web site hits in the past few days with nothing to report. As you can imagine, we have our hands full at home. Most of the things we are dealing with are like bringing home any other new baby, but we have additional things to deal with - mainly her oxygen and monitor. The first night Kellie was home we only had one oxygen tank for her, so we could only take her about 6 feet from her tank. We now have three sizes of tanks: a huge one by her crib, a medium one in the living room, and a smaller one for travel. Since is on a monitor, one of us has to be within earshot of the alarm at all times; we have to make sure to coordinate which one of us is "on duty". She will be on the oxygen and monitor for 3-6 months.

We are settling in and trying to find places to put all the necessary baby equipment. At least we've done this before, only this time we also have Jacob's stuff to deal with. The whole house is getting re-arranged! I called our church yesterday to set up her baby shower and dedication. That was neat to finally be able to set up those two things! Our pastor's wife wants us to have some type of slide show for her dedication. We plan on having it August 27th. What a celebration it will be! We have to choose photos from the hundreds of digital and regular photos as well as the three hours of video! Sounds like a great project for Peter!

Kellie is getting less fussy everyday, but she is a HUGE pacifier addict! It seems like all we do is feed her and stick her pacifier back in her mouth! I think she misses all her tubes and stuff! Oh well, the more she sucks, the better the condition of her palate will be (it has a deep groove from the ventilator tube). She is sleeping great - going 5-6 hours at night and waking up on time for her every-three-hour feedings during the day. It is amazing how far her bottling skills have come in three weeks! Not only did she learn to bottle well "all of a sudden" while I stayed with her at Wesley, but now she is getting less picky by the day. When I originally got her to bottle good, she had to lay on her side in her boppy pillow with no noise and minimum lights. I also had to hold the bottle "just so", and it had to be nice and warm. Now she can eat with all sorts of noise or lighting, be held without the boppy pillow, lay in any direction, and take the milk cold. The only thing she doesn't do well is let Peter feed her. He tried again today and she didn't make very good progress, at least not until I was in the room talking. Once she heard my voice she started eating well. Hopefully she will get over that soon.

On her weight check yesterday she had gained 1.5 ounces in 1.5 days...right on target! That makes her 8 pounds, 2 ounces - officially seven times her birth weight! She is really interested in checking out things in the house and constantly looks around. Peter and Jacob had a "Veggie Tales" CD playing loudly on the stereo and she slept right through it, actually I think she slept better! Just a few minutes ago she did a "360" in her play pen, on her tummy. It was quite amusing! She thinks she is a big baby! That reminds me how the nurses kept saying before our dismissal how it was neat to see her doing "big baby" things! It is really neat! She did another cute thing last night. Peter had the cordless phone next to her and he was pushing buttons and making them beep. When she heard it her eyes got big and she turned her gaze and head toward the phone. Then he rhythmically pressed the buttons and held her interest for a long time. It reminded her just a little too much of her hospital days with all the monitors and pumps constantly beeping. We think she was saying, "didn't I leave all that noise behind?"

Tuesday night we went for a walk around the neighborhood - Kellie's first one! It was really nice to do that as a family. Since we have a "Welcome Home" banner on the house, when people saw us coming they had to check Kellie out. Neighbors we don't even know had heard her story and were anxious to see her; we were just as anxious to show her off! We ended up not getting much of a walk in...not for exercise anyway...which is something I desperately need after being cooped up in a hospital room for over two weeks! Last night we decided to venture out again. I needed to get some odds and ends for Kellie, so we decided to go out as a family. This time we went to Toys-R-Us and K-Mart. Both stores were not very busy, and we enjoyed being "out and about" rather than spending 2-3 hours at the hospital! Kellie was oblivious to what was going on. It gave her a chance to get used to her car seat. Her mode of transportation for the duration of her oxygen therapy will be our "4-in-1" car seat/stroller. She can ride in her car seat and there is room for her monitor and oxygen tank in the stroller. It is quite a chore getting her in and out of the house and car! We were doing it as a team, but then I told Peter I had to figure out a way to do it myself in order to get a system down. I think we'll get there, it just takes time to juggle the two pieces of equipment and the related tube and wire. Any five-minute errand will now take 30 minutes at the very least!

Jacob still loves his sister and wants to help around the house all the time. It is such a blessing. Instead of regressing, he has decided to grow up overnight! I know he did a lot of it while I was gone, but now he really wants to be a BIG brother. He decided to finally get the hang of potty training this week! He went to the bathroom for the first time in his potty chair last night, and now constantly takes off diapers and training pants...no matter what the condition...if you get my drift! Oh what fun to keep up with a potty-training toddler and the related mess at the same time as caring for a baby! At least what Jacob uses in our time consumption with him he makes up for by helping with Kellie. He loves to fetch things and gets mad when we don't let him. He is usually the first person to run to her side when she fusses. He says things to her like, "calm down, it's okay, oh sweet girl, don't cry!" When I feed Kellie, he sits next to me and we read. Our dog, Kaeci, also thinks she needs to be next to me, too! She is handling this fairly well. Of course she finally got used to Jacob and we go and spring another baby on her!

Sorry for the delay in updates, we've just been swamped. Then today we received an email message that locked up our Internet program and email files. As you can see, I more than made up for not writing by posting one of my famously long updates! I'm sure in a few days I'll have lots more to write about again! Thank you to everyone for staying with us in this long journey!

Speaking of our journey, I want to publicly thank the Neonatal Services staff of Wesley Medical Center for their excellent care over the past five months! Our tragic experience was made more bearable by their compassionate concern and genuine respect for our whole family. The love and care they all gave our daughter (and us and Jacob also) went way above our expectations. We are truly blessed to have been a part of the unit and are thankful for the team of professionals that were assigned to us. We made many new friends and have a lot of great memories in spite of all the scary, sad experiences. Wesley's motto is "In the Hands of People Who Care". That could not be a truer statement! We will miss our time at Wesley in some ways but are now so glad that Kellie is one of their graduates. We cannot wait to make her graduate poster to hang in the lobby of the NICU! Several of the Wesley staff visit this site and for that we are very thankful. It shows they really do care. Many of them visited on their days off just to keep track of Kellie - through the good and the bad! A great big "thank you" to all of you!

Well, I had better see how much trouble Daddy and "the kids" are getting into! I hear lots of noise upstairs!

Julie

Well it certainly has been a long time since I've updated everyone! Life is quite crazy with a potty-training two-year-old and a "new" baby! It seems every spare moment I have to write an update I have to use in a different manner...like taking a nap! It is very seldom that both kids are napping at the same time, which is when I either need to write this or rest...and the rest has been winning out! Today Peter is "on duty", so I can get this done! Kellie has finally decided to let him feed her and they are doing a fine job of it! I was able to leave yesterday afternoon and run errands on my own. It is much more efficient than having one or both kids with me! It takes quite a lot of time to get Kellie in and out of the car!

Since I wrote last, Kellie has been to see our family doctor and all was well except she didn't gain any weight the first week she was home. She is still eight pounds even. She really needs to grow and gain weight, so we are hoping this Monday, when she goes to the doctor for another weight check, that she has gained this time. The main problem is that she isn't eating as good at home as she did in the hospital. She is not getting down her minimum "daily intake" that she needs. I just can't seem to get it down her. She eats what she wants and that is it. Even with increasing the number of feedings per day she doesn't increase her total intake. Please pray that she would eat better so she can continue to have steady growth. A few of the days the problem has been that both Kellie and I sleep through her nighttime feedings. I just don't hear the alarm and shut it off in my sleep. Kellie will go seven hours without waking if I let her, so sometimes I wake up and it's been 5-7 hours since she's eaten. She really shouldn't go more than 3-5, and when I'm trying to work in extra feedings it needs to be closer to three. Yesterday Peter was able to get down twice the amount as usual at one feeding, so I told him he could start feeding her...that's what he's doing now! There are several advantages to bottle-feeding! I do feel like a kitchen chemist at times mixing her bottles! I have to measure the breast milk and then add the same amount of fortifier, and then sometimes add her medicines. It takes a lot of shaking! Keeping it all straight in the fridge is fun! At any one time we have thawing breast milk, half-opened bottles of fortifier, and 1:1 mixtures - which have to be rotated according to the time they were mixed!

Kellie is starting to make "baby noises" and talking in her own little way. She still has a loud set of lungs on her and can get rather fussy at times...usually in the afternoons and evenings...thankfully not at night! She makes quite a few different "faces" and is very tolerant of her big brother...who still adores her! Jacob is having a hard time figuring out just what having Kellie home means. Every time we go to the car he says, "go Wesley hop-ital!". We have to keep telling him we don't have to go there every day - now we can just go to visit the nurses! We were even taking a walk and going in the direction of the hospital and he asked, "go Wesley hop-ital?!" We had to tell him, "no, we aren't walking there either!"

Last Sunday we took Kellie to church for the first time! She loved it! She was very alert and observant during praise and worship and only got a little fussy at the start of the sermon because it was time to eat...a bottle to the rescue! Our pastor's wife, Debbie, held Kellie during the singing and then Peter, Debbie, Kellie and I went up on the platform after the music so Debbie could finally introduce Kellie to the congregation. It was quite neat to be able to show her off! So many people were happy to see her! After church Kellie went to her first family get-together at my parents' home. It was my Dad's birthday and two of my sisters and their families were there. If Kellie can survive the family, she can survive anything! She was passed around quite a bit and we had to "wean" her from all the attention on Monday! (Peter went back to work and I was running things "solo")

On Wednesday, Kellie needed to have some blood drawn to check her liver enzymes, so we did it at the Wesley lab. This gave us a good reason to visit the NICU! Everyone was so glad to see her, even if she'd only left 1.5 weeks earlier! She had been sleeping but when we entered the nursery, she woke right up and was very attentive, like she knew where she was! It didn't seem to bother her and she felt right at home...familiar sounds and voices! It was such a joyous occasion for me to have her there as a graduate, NOT a patient! While at the hospital, I signed a release form to get a copy of Kellie's discharge summary, which is what our family doctor received from the neonatologists about her hospital stay. He said there are 51 different diagnoses on the report! I will pick up my copy next week and I'm anxious to see the list! Even though I read through her very thick chart most of her hospital stay, when you see everything condensed it puts it into perspective. I have a list in her NICU baby book of all her medicines. It is quite a list!

After our visit to the hospital, Kellie had a visit with her ophthalmologist. She had an EXCELLENT report! ALL THE ROP EYE DISEASE HAS REGRESSED - IT IS GONE!!!! Praise the Lord once again! Dr. Varenhorst said she "had a great response to the surgery!" I sensed in his voiced that he was rather pleased and shocked. Thank you for your faithful, fervent prayer for this disease! I asked the doctor about her macular dragging and he said it is very slight and shouldn't affect her vision at all! She still may have some loss of peripheral vision from the surgery itself. Dr. Varenhorst (a retinal specialist) will check her one more time in six weeks and then we will see a pediatric ophthalmologist to follow other vision problems she may be at risk for.

We will have Kellie's dedication ceremony sometime in August. Everyone is invited to attend and we'd be so happy to see you there! The entire church service will be dedicated to Kellie and the power of God! Peter and I will be giving a presentation (including photos and video) of all that has been done in Kellie's life and all the ways God's grace, love, mercy, and healing have been evident. We will also talk about how He carried us through and how He can get anyone through tough times. We will talk about how our own faith and prayer life, as well as many others' were touched through these past five months. We will share examples of how so many people have supported us - how the Body of Christ, standing together, can do so much! When we know the date and time, I will post it to the list. If you would like to come and are not on my email list, send me your email address and I'll add you. That way you will get notice of the ceremony. Planning all of our "speech" and getting the presentation together will take lots of time and we are praying about just what we should say. Like our pastor said last Sunday after we talked just briefly, "if you have about 3 weeks to listen to their story, you could hear the whole thing!"

As a family we are still settling in to our new family structure and making progress with our disorganization around the house. Between my absence from the house for two weeks and now having to make room for all the baby stuff, it's been quite interesting! Jacob continues to grow up right before our eyes and is a really big helper for us in many ways. We are thoroughly enjoying watching him and Kellie together.

Thank you for sticking with us this long!

Julie

I forgot to mention in my post that we have finally captioned Kellie's photos. You can start at any photo by clicking on it's thumbnail. From there you can link forward and backward to the other photos. We have a list of 10 other new ones to add when we find the time to upload them. We hope you enjoy the captions!

Any new photos will now be linked from this Kellie Update page. Click on the "Photo" button to view them. The main page was taking 2.5 hours to upload this weekend just to add one photo! So we are re-arranging things for the sake of saving time online.

Kellie's hospital photo is available on the web! Go to:

The "personal access code" for Kellie is: 018-07564

In the photo you can see her fat cheeks and tiny head! She didn't want to cooperate (what baby does?!) and look at the camera. This is the best shot we could get. You can see how tense she was because she was making two fists!

I didn't realize it had been so long since I'd written again! On Monday, Kellie went to the doctor for a weight check and she'd only gained one ounce in a week. She should be gaining that in one day, not in 7-14 days! I took her back in on Thursday and this time she had gained three ounces. That is more like what she should be doing. However, she hadn't (and still hasn't) soiled a diaper in two days - that could be some of the gain. She still isn't eating any better.

On Tuesday, Kellie was evaluated by five therapists from Rainbows United, an Early Intervention program for special needs children and those at risk. Kellie did great for her adjusted age in things like motor skills, hearing and tracking. We have a Family Services Coordinator who will coordinate her many therapy sessions in our home (saving me from taking her out). Kellie will have Early Childhood Special Education once a week, Speech Therapy (for now, eating skills) once a week, and Motor Therapy twice a month. This Wednesday, their Feeding Specialist will also evaluate her. Rainbows is a wonderful organization that operates largely on private donations, so if you ever have the chance to help them out, it will indirectly help us, too. Their website is:

I received a copy of Kellie's hospital discharge summary this week. This is the report that our family doctor and all the other specialists she sees received. Peter got quite emotional reading over it and remembering all the things that happened and when. When reading the dates on the summary it brings back lots of feelings. There are 51 diagnoses on the summary - 41 different ones (she had some things more than once). Some of the diagnoses she was only at risk for and was treated accordingly. Sometime I will write all of them out, but not now because this is one of the few times both kids are sleeping and I actually got a little cat nap in...now I need to focus on the house...it's a disaster area again! Kellie had 14 blood transfusions and 5 platelet transfusions. She had 3 EEG's and one MRI. She seems to have had "hyper" and "hypo" everything in relation to electrolytes and nutrition. The list goes on and on....

Kellie's dedication service will be Sunday, August 27, at 11:15 am at: Word of Life Church, 3811 N. Meridian, Wichita, Kansas, 316-838-9200. The church is on North Meridian just South and West of the Interstate 235 interchange. Everyone is invited and we would love to see you there! Please come if you are able! (No gifts, please.) We will be telling Kellie's story. We have to somehow condense it all, which is something I still need to do for this web site - write a birth story summary.

In other news, Kellie has rolled over from tummy to back several times this week! She also will follow us across the room with her head, not just her eyes! It is so neat to watch her develop! Since she is on oxygen therapy, we qualify for a disabled parking permit; something I never thought I'd need, but I am very thankful for since lugging her monitor and oxygen tank in addition to her (usually in her car seat/carrier) and her brother, is quite the challenge! This gives us a few less feet to walk when going places and gives us more room between cars to get everything in place.

Have a great weekend! Please continue to pray for Kellie's growth and eating skills. Pray that she would continue to be protected against illness. Pray that she will continue to develop normally for her adjusted age (the multiple steroids she received could still mess her up pretty bad).

Thank you!

Julie

On Tuesday this week, Kellie had not gained any weight since the previous Thursday. In speaking with other preemie parents, reading my preemie books, and talking with two speech therapists, we concluded that Kellie most likely has reflux. This may be causing her to not eat well, be fussy, and not gain weight. It is also making her spit up out her nose...not a pretty sight! She may have some damage to her soft palate from the ventilator tube being in place for 9 weeks and the nasogastric feeding tube down her nose for almost 5 months, which could be causing the food to come up her nose.

Kellie's doctor prescribed Reglan for her reflux (which is the same drug I took to increase my milk supply) and we are starting to see some progress. We are also doing some other "reflux precautions" like sitting her up for at least 20 minutes after a feeding, elevating the head of her bed, and thickening her milk with rice cereal. Little by little she is eating more, having more wet and dirty diapers, acting less fussy, and not spitting up as often. If she needs it, she may also get an antacid prescribed. Hopefully at her weight check next Tuesday she will have put on weight.

In other health news, her liver enzyme problem seems to be resolving just fine, and her hemoglobin is doing great. She got two immunizations on Tuesday and will get two more in another week. The doctor didn't think she had enough thighs to get stuck four times in one day...nor would I have wanted to put up with her crankiness! She does have chunky thighs, though...I just hope she doesn't have to put up with that her whole life!!! When she got the shots, she barely flinched or cried - same with her heel stick. I'm pretty sure she has a high pain tolerance after all the stuff done to her in the NICU. At least now she has learned that all touch is not bad. Over the past two months she has become more trusting and cuddly.

Kellie really shocked the nurse this week because she rolled over on the exam table. It is quite cute to see such a small baby rolling over, and Kellie does it quite frequently. She is still moving all over her bed, too. She is getting very social. Peter got her to smile for the first time the other day, and this morning she smiled when I baby-talked her during a feeding. When I make faces at her, she really studies me and will stick out her tongue if I do it to her. She even did that for the speech therapist! Like her brother as a baby, she absolutely loves to study the unfinished ceiling in our basement. She will look at it for hour or more and not go to sleep. She loves all types of music and loves to be outside.

Next week is very busy for us. Kellie has four doctor appointments and one therapy visit. Then we have three other family commitments. If I thought I didn't get much done this week, I'm not looking forward to next week...(including my 31st birthday)! Although I do seem to get more done the busier I am. You may not hear from me again until next Friday. At that time I can report on her weight gain, and her pulmonologist and neurologist visits.

I am looking forward to Kellie's baby shower on Thursday, August 24th. I didn't have a "party" shower with Jacob (it was an "Across the Miles" shower in the mail, where we received two gifts a week for 8 weeks), so this will be exciting. I'm glad I waited to have it until after she was home so she can join in the excitement. She will finally get a chance to wear one of her party dresses...although I don't think she cares!

There have been several media reports lately about the outcome of micropreemies. One of the statistics reports that micropreemies, at age 2.5 years, have a 48% chance for disabilities. Since Kellie has beaten so many other odds, and is doing so well now, we trust she will not be part of that statistic. The NBC news report said that the average cost of the hospital stay for these babies is one-quarter million dollars. We had to chuckle at that one because the unofficial number we have for Kellie is three times that amount. I have the final number for her hospital charges, which doesn't include all the doctors' fees, and it is $658,000. We have been VERY blessed with a great insurance company and policy that has paid it all, minus our deductible, which was picked up by Kellie's Medicaid coverage.

Well, I need to get busy with my list of many errands to run! Thanks for "stopping by"! Have a great weekend!

Julie

Once again, I apologize for not having an update in over a week. Last week was probably the hardest week since Kellie's been home, and one of the hardest since she was born. Needless to say, we are very worn out - emotionally and physically! I wanted to write an update over the weekend, but our computer time has been tied up with producing the video for Kellie's dedication...and tie up it has...the files take up over 4.5 gigabytes!!!!! All of our spare time (what little there is!) has been used up making the video. We are pleased with the progress, and the almost-finished final product, but we are extremely tired now. To top it all off, on Friday, it took seven hours to take Kellie to one doctor appointment, run two errands, and eat lunch at McDonald's (Jacob's treat for being such a great boy through it all !)!!! It was a very long day and halfway through it I was laughing a lot just to keep from breaking down and crying in public. I did end up crying once Peter came home. The chore of lugging Kellie's stuff around with Jacob in tow is quite a task! The fact that Jacob is now potty-trained just adds to the stress...even though we are so proud of him. We've been cracking up lately, and not just from laughter!

On to Kellie's news...she went to the new pediatrician on Tuesday and we found out she is eating fine. I guess at the hospital they wanted her to eat lots more in order to catch up. When I found out she was eating okay, it was a BIG load off my back. The next burden that was lifted was that I found out I can let her sleep as long as she wants to at night without waking her!!! She will sleep for 6-7 hours for the first feeding, so I am slowly making up for the sleep deprivation! The third item of great news was that she gained five ounces in five days - making her 8 pounds, 9 ounces! I think the cereal in her milk helped that. The last great news from Tuesday is that she's grown nearly two inches in one month! I thought she'd been getting longer because all of a sudden her sleepers didn't fit...and they used to be way too long! Dr. Chong didn't want to do anything else with/for Kellie, because she hadn't received her file from the hospital. We will she her again on the 29th.

On Wednesday, Kellie had an early intervention (EI) therapy session. She is doing great for her adjusted age! We are so happy! Next week a physical therapist will start working with her also. He will work on things like getting the tightness worked out of her neck (she tends to keep it turned to the right). In two weeks a new speech therapist will start working with her. Somewhere in between she will also have motor therapy.

On Thursday, Kellie went to the pulmonologist, (lung doctor) Dr. Riva, for the first time. Dr. Riva was amazed (and said so many times) at Kellie's lungs! She couldn't believe they were in such great shape for someone so "messed up" early on! Dr. Riva increased Kellie's Reglan by almost two times, and she also added Zantac for the heartburn caused from the reflux. We have seen great improvement in Kellie's eating since the changes. Dr. Riva does want to rule out any physical problems with Kellie's esophagus or stomach, so on Wednesday Kellie will have an "upper GI", or barium swallow study. If the test doesn't show anything and Kellie still has reflux problems that the medicines don't help, then she may go in for a pH probe study also.

Dr. Riva said Kellie probably doesn't need her oxygen, since she is on such a small amount now. However, since Kellie isn't having optimal growth and is having feeding problems, the doctor wants to wait one more month before trying to take her off of it. This will involve having Kellie stay at the hospital for about 24 hours while she is monitored off of the oxygen. Dr. Riva said she either needs the O2 or she doesn't. We are looking forward to that hospital stay! At the same time, barring no monitor alarms, Kellie may get to discontinue her monitor also! Getting rid of those two things will be SO GREAT! Please pray that it will happen in a month! There is the possibility that Kellie will still have oxygen therapy at night, but we can definitely deal with that! Dr. Riva did order changes in Kellie's monitor settings. Instead of the heart rate limits being 80-210 bpm, they are now 60-220 bpm. Since the change, there have been no alarms! Before that they were mostly false alarms, so the new settings eliminate those, and the benefit is we get more rest!

At Dr. Riva's office, Kellie had "lost" three ounces in two days (8#, 6 oz). We are sure this is probably scale error...especially since the next day, at the neurologist's office (Dr. Shah), Kellie weighed a whopping 8 pounds 13 ounces! We will wait and see what she weighs this week! Dr. Shah examined Kellie and said it looks like she is doing great! He checked her reflexes and muscle tone and didn't find any problems. We haven't seen any seizure activity for a couple of months, and she hasn't taken any Phenobarbital since July 4th. He doesn't need to see her for four more months!

Kellie and I visited the NICU and NSCU on Thursday and it was great to see everyone from Kellie's first home! We really do miss them. The nurses could tell that Kellie had changed in one month. They could see the increased length because that combined with the lack of good weight gain has made Kellie thin out and not be so pudgy. She is also losing some of the preemie look, and her hair is getting longer. Kellie still recognizes her primary nurses and feels right at home in their arms. It is really neat to see!

While at the hospital we saw Baby Michael and his mom. He is going home tomorrow - two weeks past his due date. He is just over 5 pounds and doing great, too! I heard that Baby Daniel is still doing great at home also. I need to call his mom and get the whole story. All in all, these three "23-weekers" are doing great! Thank you for all the prayers for each of them!

If you live in the Wichita area, I will remind you that Kellie will be on the Channel 12 (CBS) "Baby your Baby" segments this week. The story is about the NICU, and will be on at 10pm tomorrow (22nd) and at noon on Thursday (24th). Also, on Wednesday, the head nurse will be discussing the unit on the 5pm Newstalk segment.

Also, if you would like to meet Kellie in person, you have two opportunities this week (of course you can visit anytime!). Her shower is Thursday night at 7pm at 3131 N. Maize Rd. Come for the fellowship, and don't worry about a gift!

We also would love to see you at her dedication on Sunday! It will be during the 11:15 am service at Word of Life Church, 3811 N. Meridian, Wichita (838-9200). Actually, it will be most of the service! We will show our video, which is about 13 minutes long and we will also be speaking. Then we will formally dedicate her. We trust you will like the video! It was quite a task to sort through 3.5 hours of video and over 800 photos to select the right ones, and then add just the right music to it all!

Thank you once again for your continued support and the love bestowed on our family! We will say it again...we can't do it without you and the Lord! Please continue to pray for Kellie's growth, her reflux, and her long-term outcome. Please pray that the Upper GI test will go smoothly. Thanks!

Julie

Life is starting to settle down for us here at home and we are trying to get back into some sort of normal (whatever that is!) routine. Jacob did not like all the time we recently spent on the computer, so this is the first time I've had a chance to write since the weekend. Both kids are asleep at the same time for once! In addition to potty-training "overnight", Jacob has decided to drop his nap most days, much to my dismay!

Kellie's baby shower was last Thursday and it was fun. She raked in the clothes, so I think she will be the best-dressed baby around! Her dedication was Sunday and that was a neat day that we'd been waiting for a long time! The church was pretty full and it was quite a whirlwind day for us! Peter had to go to the church early before first service to get everything set up, came home and ate, and then we turned around and went back as a family. Jacob had his usual "two-year-old moment" before church and we were running a little later than planned. First service got out early, it was 108 degrees, and when we walked in the building, we found out that a TV news reporter wanted to interview us before the service. We were happy to oblige, but Kellie screamed during the whole interview! The reporter also filmed part of the church service. The story was supposed to run at 5:30pm on Sunday, and they even "pre-sold" the segment, but the news was pre-empted for a golf tournament! Tiger Woods winning was more important than Kellie, we guess! =) After talking with the station's news department, it seems Kellie's story won't be on now. Oh well, I probably looked and acted goofy just like when we were on last week!

The church service was wonderful! After praise and worship and the offering, we were allowed to give about a 15-minute talk about Kellie's life. It was really hard to summarize her life in that time. We could have talked all day! When we were done, we showed the 15-minute video and had most people in tears. Kellie decided to "talk" during the video and then during the next part - her actual dedication service. We think she wanted to tell her story in her own words! I took her to the cry room after that and she went right to sleep, but I missed most of the sermon, which I hear was also wonderful. I will have to listen to the tape next week!

It was wonderful to have so many family members and friends attend Kellie's service. We know several people went out of their way to be there and we truly appreciate it! Even for those who couldn't make it, we are still grateful, since so many people have shared in her life!

Kellie's "upper GI" test last week showed nothing wrong, not even any reflux, although we know it is happening. That is the bad thing with the test - to be positive, there has to be reflux going on at that time. Anyway, Kellie did fine drinking the barium because she was so hungry from not eating for 4 hours. She let the technician hold her down on the X-ray table just fine. It was neat to watch the test being done. I had one done a few years ago but couldn't watch the monitor very well. After the test was done and I was getting ready to dress Kellie, she puked most of the barium up and all over me. My clothes were ruined, but at least she wasn't wearing any of her clothes! She then proceeded to throw up all the next day out both her mouth and nose. She also had fun getting the rest of the barium out...the other end! It was a really fun day...ha ha!

Today Kellie visited the pediatrician, Dr. Chong. She only gained two ounces in the past week, making her now 8 pounds, 11 ounces. Dr. Chong says she is eating and gaining enough, so we will try not to worry. She will continue bi-weekly visits to monitor her growth. Kellie may still have a pH probe study done, but it will be up to Dr. Riva, the pulmonologist, to decide. We see her on the 18th. Next week Kellie goes back to the retinal specialist for one last visit before visiting the pediatric ophthalmologist. Then she will also see an endocrinologist for her hormone issues. In between all of those visits, she will continue her "early intervention" therapy visits at home. Yes, our calendar is full!

Kellie has really started smiling in the past week, and most of the time I pick her up she gives me one. It is very neat! She also is cooing more and making vowel sounds. She is still fussy quite a bit, but now it is down to about every other day that it goes on for hours. Hopefully with time it will get better!

We will try to continue updating every week or so or as we have news. We have some new photos and we may try to get them posted in the near future. Thank you once again for all your support! As the cold/flu/RSV "season" hits late next month, Kellie will need prayers to keep her protected from all of that. She will have very expensive shots to help protect her from RSV, but there is a high possibility of her getting an infection that could be very major and land her back in the hospital. The only hospital visits we want are social visits and the one for trying to get her off of oxygen (and maybe the pH probe study).

Take care and if you are also having day after day of over 100-degree heat, stay cool

Julie

Okay, I know it's been a really long time since I've written an update! Things have just been so crazy around the house! I have a huge pile of stuff on the desk that I should be working on, but I thought I'd better write so you will know what is going on in our lives! Afterall, for the first time in a long time all the dishes and laundry are clean and put away! The toys are even picked up! There isn't too much news about Kellie, and that is one reason I haven't written. She did go to the pediatrician on Tuesday, and she finally gained some good weight! She gained 8 ounces in two weeks! She now weighs 9 pounds, 3 ounces! Of course we are really glad! I think she worked on growing some length when she came home and now she is putting on the weight!

The pediatrician, Dr. Chong, confirmed what I think the pulmonologist, Dr. Riva, is planning (we will know for sure on Monday when Kellie visits Dr. Riva). The plan is to do a "room air" trial on Kellie next week, where she will be admitted to the hospital for 24 hours and be monitored without oxygen to see if she really needs it. If she passes the trial, she will most likely still have oxygen at night, which is fine with us. I asked Dr. Chong if Kellie could be taken off of the apnea/bradycardia monitor since she hasn't had an alarm in over a month, but Dr. Chong wants her to stay on it through the winter. She did say I should ask Dr. Riva about it and she what she says.

Next week, in addition to seeing Dr. Riva, Kellie will also visit an endocrinologist, Dr. Dykstra. This will be to check on her cortisol, TSH, and growth hormones. Sometime in the near future she will also see an "ear-nose-throat" (ENT) doctor about the ridge in her palate (from the vent tube) and to be monitored closely for ENT infections, which she is at risk for (in addition to everything else!). Last week, Kellie saw Dr. Varenhorst, the retina specialist, and he said her eyes are still doing wonderfully. He will see her one more time, in two months, to check for late-onset problems from the ROP laser surgery. In the meantime, Kellie will see Dr. Johnson, a pediatric ophthalmologist for other vision problems she is at risk for. Yes, my calendar is still very full, because in addition to all these doctor visits, Kellie is still having "early intervention" visits from Rainbows United once a week...but at least those are in our home!

Kellie is learning new things every week and smiling and cooing quite a bit now. She especially likes it when Jacob kisses her on the head and sweet-talks her. She likes to wave her right hand in front of her face and watch it. Sometimes she bonks herself on the head and then gets a funny look on her face. She also likes to lick her upper arm. Her reflux is quite a bit better now and she only has bad episodes once or twice a week. She is starting to eat better and she isn't as fussy. She does not need her pacifier as much now, which is great! She is sleeping 8-10 hours at night! Of course on the nights she sleeps 10 hours, Jacob finds some reason to wake up...bad dream, wet diaper, etc. One of these days I will get a full night's sleep! Ever since she came home, Kellie has been able to put herself to sleep at night, in her crib, without any stimulation, so that is a big blessing. For naps, though, she usually needs a pacifier, music, or rocking.

Kellie is starting to eat a little better, but she should eat more as she grows. She will now eat about 120 cc's (4 ounces) in 5-10 minutes. We used to have to fight to get 30 cc's down her in 30 minutes! I really do think the reflux medicines are helping a lot. Kellie still tends to turn her head to the right most of the time and use her right arm more. The physical therapist says it is an "ATNR" reflex that should go away by the time she is 6 months adjusted age. Because of lying with her head to that side, the back of her head is pretty flat there. We try to lay her in different positions, but because she is so strong and stubborn, she will lay how she wants! She is still quite a wiggle-worm and is very active and constantly looking around. She is now 12 weeks adjusted age and I can't believe she will be 7 months old next week! Before we know it she will be one year old! Jacob still adores her and gets along with her great. He works out his jealousy by saying things like, "Put her in her bed/bouncy seat/blanket" (when I'm feeding or holding her), or "leave her in the car" (when we are running errands).

Well, that is about it for now. I will have more to talk about next week after Kellie's appointments. Thank you for sticking with us and continuing to pray for Kellie!

Julie

Monday, 6:30pm

Hi everyone! Kellie is free! Permanently free from her apnea monitor and it's wires and false alarms! She is also free from oxygen therapy and it's tanks and tube during the day! I cannot describe the joy I felt today leaving the pulmonologist's office with a "real" baby who wasn't attached to anything! Putting her in the car was a joy, not a headache! I took her to the baby store to celebrate by buying her something special...and I was able to carry her around the store in my arms...make that ONE arm...with nothing on my shoulders! Then I was able to go to the grocery store and hold Kellie in her carrier in one hand and hold Jacob's hand with the other! Whoopee!

Okay, now that I let that out...=)

We will try and have some new photos soon. This past weekend was the first time we were able to spend together as a family with no pressing chores or projects. The dishes and laundry were caught up for the first time I can remember this whole year! Now with Kellie being "unhooked", life will get even better as we can carry her more than six feet without dragging all her gear! She will be on oxygen at night for at least six more weeks until we visit Dr. Riva again.

Tuesday, 8:30 am (I was interrupted last night)

Peter and I had so much fun last night! We carried Kellie all over the house and showed her rooms she's never seen! She feels like she weighs about 2 pounds, not 9 lb., 5 oz! She also feels skinnier since she doesn't have the monitor belt around her chest! Jacob keeps yelling, "no monitor, no tube, no oss-a-sin...yeah, yeah, yeah!"

Kellie is sleeping 8-10 hours at night and last night I got my first full night's sleep in a long time! Usually when Kellie sleeps through the night, Jacob finds some reason to wake up! Well, last night they both slept 10 hours! I feel like a new person!

Kellie has an appointment with the endocrinologist today to check her growth hormone, thyroid stimulating hormone, and cortisol. We are anxious to find out how they are doing because it's been a few months since they were checked.

We got the okay from Dr. Riva to take Kellie on vacation. We weren't going to take one this year, but in the past few weeks it's been evident that we all really need one. We are planning on going to Colorado and basically just sitting for a week! I've already started planning the trip. Kellie will have her oxygen day and night while we are gone and we will have an oxygen saturation monitor so we can adjust the O2 as needed while in the higher altitude.

We have had several requests to give out copies of the video we made of Kellie's life. We will make copies, but right now we are in the process of getting official copyright permission from the five music publishing companies whose songs we used on the video. If you would like a video, please let us know. We need to let the companies know how many copies we will make. The video will include the testimony we gave at church the day of her dedication, the dedication prayer, the video we produced, and the news segment that Kellie and I were on the week before the dedication. The tape the news station filmed before and during the dedication never aired (Tiger Woods winning pre-empted the news that evening) so we were not able to get the footage.

Please e-mail us (FourCrooks@att.net) if you would like a copy of the video, or just want to see it. Several people want to show it to their churches, bible studies, friends, etc. who have prayed for Kellie since the beginning. Just as soon as we get permission, we will send the videos out.

Thanks for reading my longwinded note! Thanks also for your continued support!

Julie

Kellie visited the Pediatric Ophthalmologist, Dr. Johnson, today. This is a different eye doctor than the one she sees for her ROP disease. Dr. Johnson diagnosed Kellie with Alternating Esotropia - a type of Strabismus, or "cross-eye". One eye looks straight ahead while the other turns in, and she continuously alternates which eye is going what direction. She also has a little farsightedness in her right eye (the slower one to regress from ROP).

What this means is that she will most likely have another eye surgery in a few months. We return to Dr. Johnson on Dec 4th, or sooner if we notice her turning one eye in more often than the other. She may also need glasses after the surgery is done.

I'm hoping she can have the surgery by the end of the year so we don't run into next year's insurance deductible! What a lovely Christmas present that will be for her!

Peter had eye surgery at 2.5 years to correct lazy eye, so Kellie's just trying to keep up! While we were waiting for her eyes to dilate today, I put a pair of baby glasses on her from the display and she smiled really big...and she looked really cute! They only had one type of baby glasses, but I tried some "bigger kid" ones on her and she smiled again! Maybe the glasses thing will be alright!

We will keep you updated on this issue!

Julie, and the rest of the Crooks

I wanted to update you on Kellie since it has been awhile. I apologize to those of you who already know part of this.

Kellie had a visit with the new ophthalmologist on Oct 16. He diagnosed her with a form of strabismus called esotropia (alternating). One eye will look straight ahead while the other turns in at a 60 degree angle. Then she will switch and the straight eye will turn in while the other one looks straight. She will most likely need surgery in the next few months to correct the problem. It will need to be done before 18-24 months so that her brain doesn't get used to using the incorrect visual patterns, making it harder to correct past that age. She also has a little bit of far sightedness in one eye. Because of the two things, she will most likely need glasses after the surgery. I tried a pair of baby glasses on her and she looked really cute and seemed to like them. She has a follow up appointment on Dec 4th and we will know more then.

Both Kellie and Jacob (and us!) survived our 10-day vacation to Colorado! We drove 1700 miles and spent 35 hours in the car and we all loved every minute of it! It was so nice to get away from the stress of the past 9 months! Kellie didn't need much oxygen when we were at 5000-9000 feet, but when we went higher over passes she did need more. She didn't cry any more in the car than she usually does...which is when she is tired and refuses to go to sleep! She has a hard time finding her thumb in the car seat and that made her mad a few times.

Last Monday Kellie had her first dose of Synagis, a monthly shot she will need through April, and then again next Oct-Apr. This will reduce her chance of illness and hospitalization by 55% from Respiratory Syncytial Virus (RSV), a virus that most children get before age two, but in healthy children or adults it normally just causes upper respiratory problems. For Kellie, due to her prematurity and lung disease, the RSV could be very serious and cause lower respiratory problems and/or pneumonia and the need for a hospital stay with or without a ventilator. For this reason, we have to be very careful about not exposing her to people with any cold symptoms, no matter how minor. The shots cost $1000-$2000 per dose, depending on her weight, and, thankfully, we were able to get our insurance company to agree to pay for it. (Afterall, they've already paid out $800,000, what's a few more thousand?) One night in the ICU would cost more than the whole course of the shots.

Kellie will stay the night at the hospital tonight to do a room air study to see if she is ready to come off of her nighttime supplemental oxygen. She will be monitored to make sure her oxygen saturations are okay. I will stay with her overnight. We will check in to "Hotel Wesley" at 6pm and leave sometime in the morning. I will see how much rest I get with the activity of the hospital and the beeping of the monitor...which hopefully won't go off too much....those false alarms are not fun!

Kellie had her first "Neonatal Follow-Up" clinic visit on Monday. She isn't doing all the things that 90% of average 4 month olds (her adjusted age) are doing. She needs to get better control of her head and develop control and strength in her upper torso. One reason she may be having problems with this is that she doesn't like to be on her tummy for long...probably due to her lung disease and the inability of her diaphragm to work properly in that position. We are trying to get her to tolerate her tummy time and have started sitting her in the Exersaucer to give her the needed exercise. The Occupational Therapist showed us other things to do with her. She will have her next clinic visit in another 4 months so we will see how she catches up by then.

She is now nearly twice her birth length at 22.75 inches. She has grown over 5 inches since she left the hospital 3.5 months ago, even though she's only gained 2.5 pounds - and is now 10.5 pounds. So, she is long and skinny and I'm having an awful time getting clothes to fit her. Her head, length, and weight have all evened up on the charts, which is a good sign. When adjusting for her prematurity, she is at the lowest edge of the growth charts.

Kellie is either smiling all the time, or crying because she's tired. She will smile at anything and everything. She just refuses to go to sleep during the day...she thinks she'll miss something, but at bedtime she goes right to sleep when I put her in the crib. Jacob was the opposite. He did fine with naps but had to cry for 5-15 minutes at bedtime.

Kellie and another micropreemie were the subject of a graduate school presentation this week. Two of her former nurses who are getting their master's degrees to become nurse practitioners did a report with the topic, "Resuscitation of Babies less than 24 weeks Gestation and/or less than 1000 grams". They wanted to show that these babies need to be given a chance and that there are some good outcomes. They used part of Kellie's video and some of her pictures to prove their point, and one of the nurses wrote me and said, "You should have seen the looks on the faces of our classmates. Shock, disbelief, extreme sympathy, it was all there. I'm sure you encounter the same reactions every time you show the video." It was neat that the video was used in that setting.

I will close with a list of Kellie's prayer needs. She needs continued protection from RSV and other illnesses, continued developmental growth and "catching up", restoration of her eye muscles, and continued growth at a good rate.

Thank you all so much for your support once again! We will try to get the website updated with new photos as soon as we can. We are so far behind, that is one thing that has suffered.

Julie

Well, it is official...Kellie is completely off of supplemental oxygen. All the oxygen tanks are leaving the house tomorrow!

She went to the pediatrician yesterday and she weighs 10 pounds, 14 ounces. She gained almost one pound in three weeks. Finally she's gaining well! We are so pleased! She also received three booster vaccinations and her first shot of the new one for pneumonia, Prevnar. Because of that she is a little cranky, but all is well!

Julie

Kellie's video is now available on the web! Watching it in streaming media isn't as good as from a VCR, but the quality isn't too bad, and about as good as it gets online!

The video is about 15 minutes long. You can view it by accessing her main page and clicking on either link (whichever one works for your modem speed). If one doesn't work, try the other one.

We appreciate any feedback about the video. Feel free to share the link with others. If you would like the actual VHS tape, contact us for ordering information. Included in the VHS copy are: the presentation video (same as online), the 20 minute dedication, the "Baby Your Baby" news segment featuring Kellie, and bonus clips with her latest photos, for a total of 45 minutes.

If you have any problems with the links or with viewing the video, let us know and we will try to help. You may need a different or upgraded video player, etc. When Peter viewed it at work it acted differently than here at home.

Thank you! Julie

Hi! I just wanted to let you know our family will be featured in an article on Thanksgiving Day in the Wichita Eagle newspaper. The article is about thankfulness. We are one of four families featured. I wrote the Eagle to tell them how thankful we are for Kellie's life and the people who have supported us this year.

Unless there is some big news that day (like the election results!) the story will be on the front page. The photographer said our photo/s may or may not be on the front page. She took a lot of pictures so we are anxious to see which ones are printed! We are a little overwhelmed, but excited, about being in the largest paper of the year.

If the article is on the Eagle's web site, we will email the link that day. The "state of Kansas" editions of the paper may be different than the local one. If you receive a paper that day, would you please save it for us so we can have copies for out of town family, and for Kellie and Jacob's scrapbooks? Thank you in advance!

Julie

Here is the online link to the story about Kellie in the Wichita Eagle newspaper. The paper had a huge photo of all four of us on the front page. This online article doesn't have the photo. (You can see a scanned copy on our "photos" page. The photo was 6X9 inches!

We are a disappointed that the writer changed some of my words, but put them in quotes anyway. (One instance is the "people of different faiths and beliefs". I know I said, "the entire Body of Christ...people from different (Christian) denominations") Also, the article doesn't do a good job of giving glory to God like we wanted it to, but all in all, it is pretty good and we didn't know we'd be featured in the beginning, middle, and end of the story.

Happy Thanksgiving!

Julie

We will be showing Kellie's video and speaking about her life this Sunday. We would like for you to join us, especially those of you who we've never met face-to-face! We would also like everyone to see Kellie and how much she has changed!

The service is at 7 pm, this Sunday, December 3, at West Haysville Baptist Church - 141 N. Lamar, in Haysville. The church number is 524-6302. We are honored to speak since this is not our home church. This body is one of the many churches that have stood with us since the beginning and we look forward to meeting those who have so faithfully prayed.

Last Sunday we visited two churches in Manhattan, Kansas - First Lutheran and First Baptist. It is incredible to meet our prayer warriors in person! We hope to meet many more as time goes on! The neatest moment this last weekend was watching the face of an 87-year-old Sunday school teacher as she held Kellie for the first time. Her 4-5 year old class has been praying for us for months. They have a big photo of Kellie and Jacob on their bulletin board!

Thank you and we hope to see you on Sunday evening! As an incentive for coming...we will need someone to hold Kellie while we speak...here's your chance =) !!

Julie

Hi everyone! I am happy to report Kellie cut a tooth today! She is 5.5 months adjusted age - the same age Jacob cut his first tooth! We knew it was coming by the way she's been chewing and drooling, we just didn't expect it this soon! I have to say it came it with a lot less work and stress than Jacob's first! It is going to be so cute to see such a little baby with teeth! If she gets them at the rate Jacob did, she will have a mouthful soon! (He had 12 at 12 months!) It is nice to be discussing "normal" baby milestones! Her spoon feeding is going fair and the speech therapist will evaluate her eating skills this Friday.

Kellie is really turning into a "poster child"! Last Sunday, another church showed her video and we were able to give a short testimony. We joke that we are "on tour!"

Speaking of being a poster child, we've been asked by the March of Dimes to be the local Ambassador Family this year. We are meeting with them Thursday to get more details before we say yes. We are honored and humbled to be asked.

Yesterday Kellie had her follow up visit with the ophthalmologist. She is scheduled for eye surgery on January 12 to correct her cross-eye (esotropia/strabismus). Dr. Johnson is confident she will respond immediately and very well to the surgery since she has the "good" type of strabismus. The surgery will be under general anesthesia, so she will need to be healthy and get the okay from her pediatrician and pulmonologist. The doctor will cut the inner eye muscles and then reattach them in another spot to straighten her eyes. Otherwise, her vision is good and the farsightedness she has is normal for this age. She does not need glasses any time soon. We are, of course, thrilled! If she ever needs them in the future, it will be independent of her muscle weakness.

Today at the pediatrician, she weighed 11 pounds, 6 ounces and is 23 inches long. This puts her at the edge of the chart for her adjusted age. She is on a very good growth curve now and will hopefully catch up between 2-3 years old. Her health is great and she has recovered from the cold she had a few weeks ago (which gave us quite a scare!). Her latest trick, besides chewing on everything, is blowing raspberries...actually it's more like "motor mouth"! She greeted the doctor that way today. Sunday while we were speaking at the church, she did it the whole time as if to say, "I've heard this story hundreds of times and this is what I think of hearing it again!" At least she wasn't screaming like she did during her dedication!

The new photo on the site (her 9-month one) was taken last week. Kellie was the size of the teddy bear at birth! It was her first gift! You can see why we think she's huge! We have reformatted the main page a little bit. The link to her video is on the main page as well as links to the preemie doll sites.

Here is an interesting link to an article that appeared last week in "USA Today". I discussed this topic for 30 minutes last Friday on the radio program "The Preacher's Wife Morning Show". It reminded me of how grateful we are that everything was done to save our precious daughter's life and the people that played a part!

Thank you for listening! If you'd like to see a photo of Kellie on Day 3 with the same bear as in this picture, email me (from the main page) and I'll send it. It is quite amazing! Kellie will see her neurologist on the 19th, so you can expect another update after that visit!

Happy Holidays!

Julie...and the rest of the Crooks

We finally found the time to update Kellie's web page with 18 new photos! They are no longer on the main page. Please click the click on the "Photos" button.

We reversed the order of the photos so the most recent is first. To see a larger image and caption, click on one of the thumbnails. Under each caption, you can navigate to the other photos. If you start at the newest photo, then click on "Previous" to go to the picture before it, etc. We included the photo from the newspaper Thanksgiving day. (We are waiting on them to send us the real photo)

We hope you like them!

Julie

LOOK!!! Lots of updates since September 19th!!!

We will be reorganizing the buttons as soon as we find time...for now this is all under "September".

If you are on our email list for updates, you've read the updates besides this one. If you aren't on our list, then you can read what's been happening the past three months!

If you'd like to be on our email update list, please email us (from the main page...click "click here to email us") and we will add you. Then you can get "late-breaking" news without having to wait months for us to update this site! =)

It was actually easier to do these updates when Kellie was hospitalized...we actually had more time...I know it sounds odd, but we did. Also, a few months ago there was more to tell. We guess the less there is to tell, the better! Kellie is turning into a more "normal" baby, so hopefully once her eyes are fixed, we will only deal with the normal baby growth and development issues...although it seems she is refluxing more recently...but that isn't necessarily a preemie thing...lots of babies get it.

Since I've had many people ask me about Kellie's birth-size doll, there is now a link on the main page to the website where I ordered hers, as well as another preemie doll maker. Kellie's photo with her doll (taken in July) is on Sandy's site.

We found out Kellie's Synagis shots for RSV cost $2548.24 each month...that is nearly $15,300 for the six-month RSV season! Thankfully insurance is covering the cost!

I'm in the process of completing Kellie's birth story for this site. When I have it done, we will create a link button to it so "those of you just joining us" can get a shorter version of Kellie's history without having to read through all these pages. When it's done, we'll let you know.

Well, back to working on Christmas stuff...

I have some big news about Kellie! I was just contacted by a research editor from Woman's World magazine. They want to do a story about Kellie! It is a weekly, national magazine. They read the Thanksgiving day article about Kellie in the Wichita Eagle (they get all the major newspapers).

The editor heard a short (if there is one) version of Kellie's story from me. The next step is a writer will contact us, then a photographer will come to the house (and hopefully take a great photo like the Eagle's). I have no idea when the story will run, but of course we will keep you updated!

We made the decision to be the local March of Dimes ambassador family for 2001. Our first public appearance will be at the annual Chef's Auction fundraiser in early February...just in time for Kellie's eyes to be recovered from her surgery (they will be red for a couple of weeks)!

Well, I'd better get back to Christmas activities...

I just found out that the Woman's World article won't be published for at least three months. That will give us plenty of time to prepare! =) At that time the writer will contact us for the story, so I'm sure it will take another month or so after that to be published.

Anxiously waiting for that time,

Julie

Yes, we've been bad about updating lately! I can't even keep up with email replies so finding the time to write this and post it is hard. Last week I deleted all my "Kellie Update" emails that I send to those on our email list. (If you'd like to be on this list let me know by emailing us from her main page. Then you can always get the latest info without waiting for us to post it here. I promise to not fill your box!)

A lot has happened in the past two months. I'll summarize it here:

18th: Kellie had a cold that got worse. Her hands and feet turned purple that night.

19th: She went to the doctor and they did an RSV test. She was sat'ting okay, but her lungs sounded awful.

20th: She returned to the doctor. She wasn't sat'ting well at all - 82 or so and it should be above 92. Thankfully the RSV test was negative, but it was definitely a respiratory virus. The pediatrician wanted to put Kellie in the hospital, but I convinced her we could treat her at home with oxygen and a pulse ox (sat) monitor. Her oxygen needs were 20-30 times what she had been on before.

21st: She was "maxed out" on her O2 level, but she was eating and acting fine with no fever.

22nd: She started puking all of her feedings. I called the Wesley Pediatric Intensive Care Unit doctor on call (Kellie's pediatrician and pulmonologist were both unavailable because of the holiday.) After talking with him for awhile, we decided it was most likely from her antibiotic and that she didn't need to be admitted. We were very thankful because we DID NOT want her in the hospital for many reasons. The main one being we didn't want her exposed to more illness.

23rd: We were able to wean her oxygen a little bit.

There is a link on that page to an excerpt of the book, which is the introductory chapter:

I highly recommend this book to anyone who has been touched by Kellie's life, any preemie parent, or anyone wanting inspiration of how to handle difficult times through faith. You can read my review at the link.

This is to let you know my interview with the Woman's World writer went well last night. She planned on it taking an hour but it took 2.5 hours to tell the story (and I left lots out!). The magazine originally gave her a deadline of next Friday, but they moved it up on her to Monday by noon! The "best" part is...she has to do it in 1200 words! I told her "have fun!" =)

I told her from the start that I could not tell this story without sharing the faith that goes along with it and she said that is fine because it is "my" story. She doesn't know what angle to take yet, but most likely it will have the emotional side of the story. She told me this deserves a lot more attention than 1200 words. She will have a hard time taking all that info and condensing it. She also said she'd do the best she could do and she wanted to get it as factual as possible. The interview was recorded. I helped her prepare by sending her Kellie's web page link. She read a lot of my journal here and looked at all the photos. This gave her a better grasp of the situation.

She told me it takes about 10-12 weeks for publication, which would be early to mid-May. It seems the editors want this rushed through, so I'm wondering if they want it in time for Mother's day. I'll let everyone know when it will be printed as soon as I know. Now I just have to endure the photo session sometime!..maybe they can just put Kellie's sweet face in there!

Thanks for your prayers and notes of support!

Julie

This morning we had another March of Dimes appearance. Kellie wore a red velvet dress for the occasion! It was nice to tell her "five minute" story again to another group of people!

Our photo shoot for the magazine is this Sunday. The photographer said it would take about 1.5 hours and he'd take about five rolls of film. He will try to get us the unused ones. The WW writer said she'd try to get me a copy of the interview transcript also. She managed to write the article in about 1180 words...20 less than the maximum in an attempt to prevent the editors from cutting any part out.

I've just started reading the book Baby ER. It is good. It brings back lots of memories! This morning at the MOD event, they showed a video that briefly told three babies' stories...it choked me up like Kellie's video does for many people. I had a hard time talking for awhile until I got over my emotion.

Well, back to frantically producing Kellie's "Graduate Poster" for the NICU in time for her birthday party this Saturday!

If anyone would like to support the March of Dimes on Kellie's behalf, please let me know. I'm taking pledges. If not from me, then sign up from someone else! Thank you!

We will try to get some photos uploaded in the next few weeks so you can see Kellie at ONE YEAR OLD!!!!!

If you would like to write a note to Kellie saying how she's touched your life, please do so. I want to gather them to read to her as she grows up. You can email us from the main page or sign her guest book. Thank you so much!

Julie

WOW WOW WOW!!! Kellie is ONE! We are SO blessed! We never dreamed a year ago we'd be here now! What a year it has been!

We celebrated her birthday last Saturday with about 30 people at my parent's house. Today we will celebrate at home and then at the hospital! I finished her "NICU Graduate Poster" so we are taking it up to the NICU to post it, take a cake to the staff, and some gifts for the babies. We will also called in on the "Preacher's Wife Morning Show" (90.7 & 100.1 fm in Wichita) to celebrate with all the listeners who've been following Kellie's story since the first few days!

This is a new beginning for us as we hit this milestone! The year has finished with a "bang" since in the past two weeks we've had: two March of Dimes ambassador appearances, one magazine interview and photo shoot, the birthday party, making the poster, and appearing on the news (unbeknownst to us!). As I prepared for the public appearances, the interview, and made the poster, I've had some closure and healing to the past year. I've been able to relive the pain and also remember all the blessings and miracles! A year ago we couldn't even imagine where we'd be today! It has been truly amazing!

In "Kellie Update news", she is working on her third tooth, is 13 lbs even (over 12 times her birth weight), 25.5 inches long (more than twice), and is getting cuter every day! She is slowly catching up on development. We will know more when she has a follow-up appointment at the developmental pediatrician on March 1st. She also has a pediatric gastroenterologist appointment in Kansas City on March 12. We will find out more about her gastroparesis (lazy stomach) and reflux at that appointment. We should also learn about her growth in more detail.

We are trying to get the photos updated on her web site this week. Also, for some reason the "Journal" is only loading up to Mid-March of '00. We are trying to solve that. We will also be adding more links as time allows. Never did we dream we'd have over 7000 hits in one year! Every hit of the counter and every e-mail or guest book entry has meant a great deal to us! Thank you 100 times over! We will say it again...we couldn't have done it without your incredible support and encouragement!

Thank you for celebrating with us!

Julie, Peter, Jacob, and Kellie!

PS...............

Our next big event for the March of Dimes is the WalkAmerica fundraiser on April 28. We are taking sponsors/donations for the event. Kellie benefited from the March of Dimes' work establishing Neonatal Intensive Care Units and developing surfactant drug for her lungs. She also benefits from one of their grants to Rainbows United, her early intervention service. Of course there are others things also. Here is the message from the March of Dimes office:

"When you join March of Dimes WalkAmerica, you give babies born prematurely a fighting chance. Unready to meet the world, many of these babies must struggle to survive. But they are not alone, because the March of Dimes is there to help them win their fight. You can help, too. The funds you give support lifesaving research and innovative programs."

If you'd like more information, contact us, or visit the March of Dimes website at: http://www.modimes.org. In Wichita, call 267-9255. As the ambassador family, I'd love to have at least $200 in donations in Kellie's honor and other babies' behalf! You can send the money to us and make checks payable to March of Dimes, or give to your local office. Thank you!

Little Miss Kellie loved her birthday! She was an angel the whole day! She knew how special the day was! It was a welcome contrast to the past few days....cutting a new tooth!

Jacob blessed our hearts yesterday, too. When we were preparing to visit the NICU, he decided HE wanted to give something to the "berry sick" babies, too! (Kellie was giving them some new hats). So on his own he picked out four books from his collection to donate. He even picked out some of his most special ones. He wanted to have the babies read them, but I told them we'd leave them for their older siblings to read when they were visiting!

He loved helping me and Nurse "Mickie" hang the poster up. Then he said, "Nurse Mickie, know what? When Kellie was here at the Wesley Hospital she was sssssssssiiiiiiiiiiiiiicccccccccckkkkkkkkk!"

One of the nurses who has worked there for about 25 years says Kellie is the biggest miracle she's seen! We don't know about that, but we do feel awfully blessed!

Thank you to everyone who sent notes, cards and gifts! We really appreciate all the love!

I just found out when the Woman's World Magazine article will be published! It will have an issue date of May 15, 2001, but will be on the newsstands on May 8th...my Mother's Day present!

It will be in the last section of the magazine, under "It's a Happy Ending"!

I will hopefully find time to post an update next week after Kellie's GI doctor appointment. I have updates on her development, eyes, and eating skills!

If you haven't noticed, we added 11 new photos to her photo page. We also added lots of links. For either one, click the appropriate button on the left. The links are mostly preemie-related in an effort to pass on some good sites we like to other preemie families!

Julie

I want to let everyone in the Wichita (and Kansas) area know about a new bulletin board for preemie parents. It is just getting off the ground and is a "work in progress". Please visit http://www.preemieconnection.com/ and join the forum! This is a way for parents to network and support one another through the preemie journey. We invite you to join even if you aren't in the local area!

The rest of the story is pretty accurate. The photo of Kellie with her doll is not captioned. I wish they would have explained it. That is her "birth size doll" made by Sandy Eding at: http://www.macatawa.org/~eding/dolls.html.

We feel pretty overwhelmed by the magazine's 1.5 million circulation! That is something to think about! I keep thinking how last year on the Friday before Mother's Day Kellie had her eye surgery and that was my "gift"...actually my gift was holding her and Jacob together for the first time the night before the surgery. This year my gift is seeing her story in print across the nation! What a difference a year makes!

Our news segment that aired on April 27th was really good. They used parts of Kellie's video to show where she came from. They took a lot of video and interviewed us for quite a long time, so the two-minute segment turned out nicely. They kept in a shot of Jacob giving her a big kiss and saying "mmmwwwaaahh"! When I saw the reporter the next day at the WalkAmerica, she said she just had to leave that part in. It is such a great representation of Jacob and how much he loves Kellie. He loves her more everyday and loves to protect her. Lately he's been reading to her and teaching her letters. He's also training her how to be patient and wait to eat until after we pray at mealtime. He always says, "Kelllllll-lllllie, you have to wait!"

We enjoyed the March of Dimes WalkAmerica, but we didn't walk the whole thing...we took a shortcut! We were at the tail-end of the walkers and then the news camera man interviewed us again (same guy that was at her dedication) and so we got really behind...and we had to be back in time to speak after the walk! My younger sister and her mother-in-law actually sent security to look for us and check on us! They had a basketball goal there and sneaking back early gave Jacob time to play it. He is still "Mr. Basketball". They also had some other activities for kids. I gave a two-minute speech (I'm getting good at getting it down to that short time...amazing, huh?!) and when I held up Kellie's "birth size" doll, there was a collective sigh from the audience. I think most people just can't comprehend how little she was. Someone commented (a man actually) about a month ago that a Barbie doll is 11 inches...so Kellie was only 1/2 inch longer! That puts things into perspective! Thank you to all who donated to the MOD in her honor!

Kellie is doing really well with her new therapists. She is making great strides already. The occupational therapist started doing an assessment on her last week. She's doing many of the things she couldn't do six weeks ago when she started. She can sit up like a little weeble if she has a little support on her lower back. Last week she learned to wave "hi". It is so precious and she loves doing it. She stares at her hand like, "Wow! I'm doing that!?!" Today she accidentally hit herself on the nose while waving and got really surprised!

Last week I gave her peanut butter for the first time and she loved it! She even ate some off of a spoon! She would not take anything from a spoon before that...and still won't unless she can smell it and know it is peanut butter! We said she could have all she wanted since it has lots of fat and protein! If I let her have too much she will not drink her Kindercal, so I have to limit her. One day last week she had the peanut butter on club crackers...and learned that it is fun to "finger paint" with. Then she had an Oreo cookie and then some canned whipped cream...also good paint. She was a mess! I have some really cute photos from that day to post when Peter can help me with the formatting. Right now he's working a lot of overtime and the last thing he wants to do when he gets home is sit at a computer!

We haven't received a letter from the endocrinologist yet about the tests he ran a few weeks ago. Hopefully we will know something soon. Kellie hasn't been measured in a few weeks so we don't know her current weight... but it's probably still close to 14 pounds (6.4kg). I asked our Rainbows United (Early Intervention Service) family coordinator to schedule their nutritionist to evaluate Kellie. Hopefully she can give us some good ideas on helping her gain weight. Kellie is currently cutting four more teeth, three of which are molars! If she cuts two more in the next month or so she will have the same number (12) that Jacob had at 12 months (her adjusted-age birthday)! No wonder she wants to eat like a toddler: McDonalds hamburgers and fries, peanut butter, Cheerios, cookies, bread, and nothing else!

The kids and I still don't have a new insurance policy. I couldn't apply for any until May 1 for the July 1 start date. Now we are in a waiting mode to see if the ones I applied for will cover Jacob and me. The underwriters already said they would not take Kellie on. Then Kellie and I were both denied by all of Blue Cross' policies. Kellie will have to be covered under the State of Kansas high-risk insurance pool which costs $300 a month just for her...which is what we pay now for the three of us. If I am also denied from companies (only two would take me three years ago with ONE c/section in my history), I will have to get the state policy also and then it will cost us $1267 per month in premiums. So it may really push our budget. Kellie has already maxed out her deductible and coinsurance ($2500 total) for the year with our current company and will max out the new one also. We are really praying for a miracle and ask you to join us. If Jacob and I can get on a policy it will cost around $200 a month, and then adding Kellie's $300 a month is a big chunk of money. The Lord has blessed our finances from the beginning of our marriage nearly ten years ago, so we will continue to trust in His care! We are very, very thankful that we have no debt and haven't in over three years. That is a huge burden off of our backs during this time.

My parents watched the kids overnight for us a few weeks ago and we actually went on a date! We haven't done that in a long, long time. We went to a Rebecca St. James concert. She sings the two last songs on Kellie's video. We respect her a lot and she is wonderful in concert. We are all enjoying our spring weather. Jacob even got out and played in the water last week because it was nearly 80 degrees! Kellie loves to be outside, too. She has started enjoying bath time so I'm sure she will like swimming this summer.

Okay, that should do it for another few weeks or a month! Thank you for your continued support!

Julie

We hope you enjoy the "new and improved" site! In addition to everything now being displayed on this page instead of two, there are new links and a birth story! We added 15 new pictures to the photo page - cute ones (as always) of her and Jacob, some of her learning to eat, and some in her KSU Wildcat outfits! For those of you who used to link through our "ThreeCrooks" page, you will see it now directs you to this page. These are all improvements we wanted to make a long time ago but couldn't find the time. We still need to do a little work to the "multimedia" page...we ran out of energy this past holiday weekend! That page is where you will find the links to her online video, her first video clip, and her sound file.

As usual, this will be a long update! Next month Kellie has several doctor appointments, so there will be another long update at the end of June. She will be 12 months "adjusted" age on June 18 (her original due date) so many of the doctors want to see her again. We are also trying to fit in as many appointments as possible before our current insurance expires at the end of June.

Speaking of insurance, let's just say it continues to be a nightmare and we don't have any good news right now. I applied with two companies on May 1 and I was told I'd have underwriting decisions in about 30 days. Well last week we hit some "snafus". One company had changed all their plans, prices, and applications effective May 1, so I had to re-apply. The other company decided they wanted a copy of all my medical records, so I had to get them and copy them. Both situations set the application process back by three weeks...precious time we don't have. Another company that I was all set to apply with (had the forms filled out but not sent) decided to no longer offer coverage in Kansas just like our current company. That narrowed down our choices again! We found out that the kids and I can join Peter's policy through work, but not until November for a December 1 effective date. If we were coming out of a group plan we could join anytime, but since it is an individual policy, we have to wait until the open enrollment period....another example of how the laws differ for individual versus group coverage! Today I researched getting group coverage through IEEE - a professional association for Peter. He'd never joined in the past, but now it may be worth it! We will see what happens - hopefully soon! Please continue to pray! Thank you!

I want to say congratulations to three of our NICU "extended family" members! Kellie's primary RN, Vickie, received an "Excellence in Caring" award from Wesley. Only one RN from each department receives the yearly award! Kellie's primary nurse practitioner, Janie, had a research paper published in the Journal of Neonatal Nursing (Feb 2001)! Kellie's primary neonatologist, Dr. Bloom, has a new position as the Director of Clinical Improvement for his national neonatology group (Pediatrix), a position he is well suited for! Congratulations to all of them! We are so proud! They've all played such a big part in Kellie's life along with about 150 other staff members!

Since Kellie hasn't been to any doctors in over a month (really nice!) we don't know her current weight and length, but it is around 14.5-15 lbs. (by holding her on our scale) and 27 inches. She is now 15 months old! She's outgrown her infant car seat because of her length, so she graduated to Jacob's convertible seat (still rear-facing) and he graduated to a toddler booster. She had an evaluation by a nutritionist last week and we are trying some new ideas she gave us. She still picks at a few solid foods: crackers, cookies, french fries, chicken breast, green beans, cream cheese, peanut butter, cheerios, and her favorite - Pop Tarts! She sounds like a typical toddler! She's been really receptive to learning lately and has is now waving "hi/bye bye" and "clapping" her hands (bringing them together). She is also learning what "no" means and likes to test us by giving us a sweet little grin when we say it to her! She's making progress with her motor skills. In a few weeks she will be re-evaluated on both the Denver II and Peabody assessment scales. We will know more of where she is at the end of June, but with quick assessments by her OT and PT, she is around 7-8 months (which is 3-4 months delayed). While she isn't catching up, she is making improvements. If she is distracted enough she can sit unassisted for a few seconds. As she learns to bring her hands together like she's clapping, it's getting her hands out of the "high guard"/hands-to-ears position (you can see it in four of her new photos).

Kellie seems to be laughing all the time! She is such a happy baby! Well, except for when she's cutting a new tooth, which has been at the rate of about one per week! She has all eight front teeth and just cut her third molar today! She is really maturing in looks and in her social ability! She still thinks Jacob is the neatest thing she's ever seen and she laughs at the silliest little thing Daddy does! Last night and today when Jacob's been out of her sight, she's been saying "Bub-bub" so we think she's asking for him! She's been saying "Mom-mom" today also. She loves to get praise and does things to make us give it to her!

Jacob still remembers when she was in the NICU. Last week we were all having a "slumber party" in the living room. Peter and Kellie were already asleep, and Jacob and I were still talking. He gave Kellie a kiss on the head and then told me, "I used to not like to kiss her. I was afraid to hurt her. She was berry sick. I used to kiss her like this..." and he patted her gently on the head. Then he proceeded to tell me all about the NICU..."Nurse Mickie (Vickie) used to take care of her. Then remember that monitor Mommy? It used to go "beep, beep" and that man (an RT?) would come and stop it. Me and Daddy used to walk in that tunnel. And remember that room you and Kel-wee were in? (mother/baby unit) We used to walk down the hall and get snacks and then we went to where the babies were (special care nursery) and we'd put those bottles in that machine (pump parts in the sterilizer)." It was really cute. He summed it all up with, "Mommy, I just love Kel-wee. She's so adorable!" (his new "word of the day") He's always calling her Little/Sweet Angel and Superstar (learned that one from Daddy).

Speaking of her "superstardom", we were supposed to be included in another newspaper story last weekend, but the writer ran out of space to include us and our story just "didn't fit". Gee, I don't know why he couldn't tell our story in a few words! If you missed the magazine article this month, please email us and let us know! After we got over our initial shock of the dramatization of the article, we realized it wasn't as bad as it seemed at first. It was just so different than how we would have told it. It has achieved the response the editor wanted - many people have cried reading it!

All around we are enjoying Kellie more and more everyday! She brings us so much joy! Since her doctor's appointments have slowed down we've been able to focus less on her medical issues and more on her as a sweet, cute, loving normal baby! Just like her birthday brought a lot of closure to her first year, I think her due date and homecoming (July 17) anniversaries will also bring a sense of re-birth and new beginnings! Thank you all once again for your support and encouragement!

Julie

Wow! I have finally found time to write an update! I am so sorry for the delay, but it seems that the summer months just disappeared from the calendar! It has been a quick one! I kept notes all summer about Kellie's activities, but I've misplaced them somewhere, so now I'll have to rely on my memory!

MERRY CHRISTMAS! I thought I'd better get an update on here since it's been three months since the last one! Many of you are visiting the site after reading our annual family letter, so some of this is redundant, but you will find some news that was not covered in the letter.

If you haven't already, please remember to update your links and bookmarks to this new site. The URL changed in November and the old one has expired. We also have a new email address: FourCrooks@att.net.

Kellie will be 22 months old tomorrow, which is 18 months adjusted age. We cannot believe she is nearly two years old! She is 17.5 pounds and 30 inches. Her head circumference is on the charts at 5% for her adjusted age and her length is at 10% for her adjusted age. Her weight has a long way to go, though, so she is long and skinny! She started sitting independently in early October and as of a few weeks ago can get out of sitting and just yesterday got herself into a sitting position. She is not crawling, but as she gets herself into sitting she stops and rocks on her hands and knees, so she may be close. She is also learning to pull to a stand. She has low tone in her trunk, but the tone in her arms and legs is fine. She likes to pivot around while sitting and still loves to get around by scooting along on her back. The Christmas tree and presents are a real temptation for her and so she's getting scolded a lot more recently! She loves to give us an adorable "but I'm so cute" smile and most of the time she gets to us! That's because she gets more beautiful everyday!

Kellie is still getting one hour of physical therapy (PT, gross motor) and one hour of occupational therapy (OT, fine motor) every week. Both therapists re-evaluated her last week. In six months time, she improved her gross motor skills by 2-4 months and in three months time, she improved her fine motor skills by 3-5 months. This puts her at these skill levels:

With the direction of the nutritionist and her pediatrician, we have switched Kellie's "formula" to whole milk with Carnation Instant Breakfast and canola oil. This is a switch from her very expensive Kindercal and costs one-half as much, saving us about $60 a month. She is taking her milk by bottle, but we keep introducing a sippy cup and hope she gets the hang of it soon. Her wall of oral defensiveness is breaking down as she will let us feed her crackers by spoon and cheese puffs by fork. We cried when she allowed us to do this. It was the day before Thanksgiving and we were so thankful since we've been working on this for over a year! Now her next hurdle to get over is her texture and temperature aversions. There's been a little progress as one night she ate about 1/4 cup of diced carrots and another day she ate a few spoonfuls of tomato soup and some macaroni & cheese. For the most part she eats her "5 C's": Carnation Instant Breakfast, crackers, cookies, chips, and her beloved cheese puffs…she's still our "Cheese Puff Princess"!

Next month Kellie will be fitted for Ankle-Foot Orthotics, or AFO's. These will be braces on both feet to help her stabilize herself in a standing position. For photos of what they look like, go here: http://www.dafo.com/ and then click on "Overview". When Kellie gets her AFO's we'll be sure to post a picture! In the next month or two she will start learning to use a walker while at therapy, and possibly at home. In March she will begin hippotherapy, which is physical therapy on top of a horse! She will love it because she really enjoyed riding a horse at playgroup last fall! For information about therapeutic riding, go here: http://www.narha.org. Many thanks to our wonderful friend (you know who you are!) who paid for five of Kellie's sessions! Wow! We are blessed!

Kellie's speech therapist visits twice a month to check her feeding skills and work on her communication. Kellie does not speak verbally but is communicating with a combination of smiles, cries, whines, body language, and hand signs. She signs "I love you" when she likes something and signs "more" and "all done" in her own way. Her "words of the week" awhile back were "doot, doot" and "dooey dooey". She also pants for "dog" and does a high-pitched squeal for "cat"… the -eow part of meow! She dressed as a KSU cheerleader for Halloween, but we haven't posted pics yet. She loved the Tootsie Rolls and Smarties! Jacob was great to share some of his loot with her!

Kellie saw her retinal ophthalmologist last month and he said everything looked great! She will only see him once a year now until adulthood to check for late-onset complications from her ROP disease. She sees her pediatric ophthalmologist in January to check her eye alignment (12 mo. post-surgery) and her vision. She will also visit the developmental pediatrician in January. She's continued to fight off ear and sinus infections and a few colds this fall. We just pray she doesn’t get any respiratory viruses, the worst of which is Respiratory Syncytial Virus (RSV). She is now getting her monthly preventative shots, Synagis, for RSV, and she isn't too happy about it! Last year she barely flinched every month, now she is older and wiser and does not like them, especially since she has to have two of them (due to her weight). She did like the holographic band aids she got last week though!

The article I wrote for The Preemie Place (Nov '01), "The Isolation of Prematurity" is up on the website at: http://www.thepreemieplace.org/archives/narticle07.htm Many thanks to all the preemie parents who gave me input to the article!

Kellie was a big hit at the March of Dimes "Bikers for Babies" event in September! She was the only one in our family that fit in since she wore a black-pleather mini skirt! She was featured in a Wichita Eagle article related to the event. You can read the article here: http://web.wichitaeagle.com/content/wichitaeagle/2001/09/24/localnews/0924bikers_txt.htm and see the newspaper photo on her photo page. The March of Dimes has asked us to remain on as the ambassador family for 2002. We are honored to do it another year! The March of Dimes is also funding a new project that I am heading up. It is a parent and nurses' resource room for the Neonatal Intensive Care Unit (NICU) at Wesley Medical Center where Kellie was born. It is really needed and with the help of other parents and medical staff, we hope to have it up and running in March.

We've finally resolved most of the insurance issues! Jacob and I were able to get a new policy for less cost than our other one! I still have a permanent exclusion for infertility, pregnancy, and c-sections. Kellie was added to Peter's policy. Even though the premiums and out-of-pocket expenses are much higher than we expected, we are grateful for the policy and know the Lord can meet our financial needs in this area!

Since the last update, there are 26 new photos on the photo pages! Of course it's time for us to add a few more! Please note that we changed the way the photos are arranged. They are currently on three pages instead of one: NICU, First Year, and Latest. The photos default to "latest" so you will need to click the links to go to the other pages. For more photos of interest related to Kellie, please visit: http://www.godslittleones.com/ There are two photos of Kellie's portrait doll on the start page, one at the top, center, and one at the lower right. Catherine, the artist who sculpted Kellie, has more photos of Kellie's doll, "Warrior of God" (male) and "Glory of God (female) at this link: http://www.godslittleones.homestead.com/KellieCrooks.html All of Catherine's dolls have names that describe the attributes of God. We chose the name "Warrior" since that is her name meaning, and we chose "Glory" due to the Glory of the Lord shown through Kellie's life! We just received this doll in mail yesterday and it is FANTASTIC! It so hard to believe Kellie was ever that small! The doll is stunning and beautiful! When we get photos of Kellie with the doll we will post them. Thank you, Catherine! What a wonderful Christmas present!!!

We wish everyone a very merry, and very blessed Christmas and a wonderful 2002! Remember during the rush of the holidays to stop and reflect why we celebrate. It is the birthday of our King, our Savior and Lord, Jesus Christ, who entered this world as a baby, God's own, and only, Son, to grow and be a living sacrifice for our sins. Who was crucified but rose from the dead three days later and LIVES TODAY to redeem us and bring us into the Family of God! Without Him we can do nothing on our own! He completes us and give us eternal life if we would only turn our hearts and lives to Him! He loves you and died for you! Turn to Him and trust Him! He still works miracles today!

Julie

WOW!  We can't believe it!  Our "baby" is TWO YEARS OLD!  This birthday is so different than the last!  Last year we were so amazed at her survival and all the things she lived through in her first year, and this year we are amazed at the things she has accomplished!  It seems to me like she should only be one year old.  She is definitely the size of a one-year old (actually smaller!) and has the skills of one, and it seems like this past year she's really been living, not just alive.  She still has a long way to go, but she's getting there little by little.  She brings us all more joy everyday!

We added 20 new photos to her site in the past week.  Included are pictures of Kellie playing in the fall leaves, in our only snowfall this year, and with some new Christmas stuff.  She also models some new hairdos and her new skills.  We have photos of her new ankle-foot orthotics (AFO's), working with her occupational therapist, and pics of her new portrait doll.  Please take a look to see how much she's changed!  We've been doing a few changes to the site again, so please let us know if you have any trouble with things.  We haven't added new internet links in awhile but hope to soon.

Kellie is not a whole lot bigger than the last time I wrote, but she has gained one pound which puts her up to 18.5 lb (8.4 kg).  She's still 30 inches tall.  Her newest skills are scooting around on her bottom and standing holding on to things.  I scooted around instead of crawling when I was an infant, so she's just taking after her Mama!  She can almost pull herself to a stand, but she needs a little help because she tries to do it the hard way.  She's getting good at getting down from standing.  She finally got her AFO's last month and they've really helped boost her confidence.  They prevent her from standing on her tip-toes which lets her develop proper posture, tone, and balance.  She's become quite the explorer everywhere she goes!  My mom said when she babysat last week, "she's all over this house!"  That was a great thing to hear!  With more exploration comes more boundaries, so she's having lots of fun!

Just as we suspected, Kellie stalled out on her spoon feeding.  She'll let us feed her familiar food (dry, hard stuff) from a spoon, but nothing else.  Once in awhile we can sneak a soft or liquid food under something, but most of the time when we do that she spits out what she doesn't want and eats the thing she does want....little stinker!  She ended up developing chronic constipation so she's on an over-the-counter medicine for it.  The prune juice just wasn't enough.  The new medicine is Maltsupex (Malt Soup Extract) and it works wonders.  It is a natural bulk-forming laxative that can be used for maintenance.  It's fairly expensive but well worth it!  We add it to her bottles and make "malted milk"!  Actually her bottles have quite the concoction now:  whole milk, vanilla Carnation instant breakfast, canola oil, prune juice, and high-fat plain yogurt.  So she gets "smoothies", which are 44 calories per ounce.  She really likes them.  If she starts putting on more weight, we will push her to get off the bottle and onto a sippy cup; it's been a pretty hard task so far.  We found an alternative to cheese puffs that she loves.  It's a snack called Veggie Booty.  It is basically cheese puffs with veggies instead of cheese.  It has a lot less sodium, a lot more fiber, and a bunch of vitamins.  Many thanks to another preemie mom, McCall, for telling me about them!  Kellie gobbles them up like crazy!  She also eats Fruity Booty, which I think taste so much better - tropical fruits instead of cabbage, kale, broccoli and spinach!  But Kellie loves both!

Kellie saw the pediatric ophthalmologist in January and had a great report!  She's a little nearsighted, but it's not enough to need correction.  He said when she's in fourth grade she may need glasses, but most likely not before!  She also saw the developmental pediatrician who is concerned with Kellie's lack of eye contact, so we are working on it at therapy and at home.  She also said Kellie will walk, it will just take time.  If she ends up with a diagnosis of cerebral palsy, it will be very mild.  It's not likely that she will get it, but we will know more when we see the neurologist in June.  Her physical therapist will start teaching her how to walk with the help of a walker in the next couple of months.  She will also start her hippotherapy (PT on a horse) next month, and we are excited to see what improvement that brings!  She has an appointment with our family dentist next month; it should be interesting with an orally-defensive child!  She did do well at the orthodontist (palate check) last year, so we'll see!

Kellie's getting much better at communication and is having a recent spurt of cognitive growth.  She signs "more" and "all done" with more purpose.  She also "sings" all the time and she's very good at carrying a tune and melody!  Her first song was the first six notes of a song from her Fisher-Price Cruise and Crawl Playground toy (photo of her standing at it with her AFO's on in the files).  Then she moved on to the first nine notes of the Blue Danube Waltz, which plays on two other Fisher Price toys.  She does little sing-song notes for words like "hi", "bye-bye" and "thank you".  It is really cute!  She also likes to growl when she's upset and make tornado-siren sounds (something we hope not to hear for real this spring!).  She loves to visit the zoo, especially the jungle building!  She belly-laughs at the small fast animals, and loves the plants, fish, and birds.  She could sit and watch the waterfall all day!  She and Jacob will have a joint birthday party at the zoo with their friends on March 2nd.  Jacob will be four years old on March 4, and it's all he can talk about!  He still loves being a big brother, but gets a little upset (okay a lot!) when Kellie gets into his stuff, which is pretty often now!

The biggest news is that five weeks ago she started potty training!  She's very good at it (both things) but can't tell us when she has to go and obviously can't get there herself.  It is the cutest thing to see her sitting on the potty chair or toilet, since she's the size of an average nine-month old!  When she's done, she claps for herself and is so proud!  It's made my diaper washing much easier!  We are excited for the day when she can tell us she needs to go!

We are enjoying our second year of being the March of Dimes Ambassador Family. We had our first event of the year last week - the Walk America kickoff breakfast.  Everyone was amazed at how much Kellie changed in one year...and Jacob, too!  While I was giving my speech, Jacob took it upon himself to display my small photo album, in Vanna White style!  I didn't see him doing it, but I guess it was just precious!  After hearing all the speeches that morning, he decided to raise his own money for "the berry sick babies".  He is collecting quarters and dimes and in one week has filled one $5 card.  I told him at that rate he'll beat me for donations!  He can't wait to "do the walk" again!  So if you have some spare change, you can help him out.  I'm also collecting in Kellie's honor.  Our local walk is April 27th.  The March of Dimes Resource Room project at our NICU is coming along nicely!  It is such an honor to be a part of this committee!  Our goal is to have it open the first week of April.  It is desperately needed and I'm excited to get it rolling!  It is neat to be directly involved with a March of Dimes project!  If you are interested in what we are developing, please write me.  I can email you the resource lists and other data.

Kellie's made so much improvement in one year that we can't wait to see what the coming year brings!  Now that she is building her self-confidence and self-motivation, she's really taking off.  She's just amazing!

Please join us in prayer for two new preemies, Baby Jessyka and Baby Elijah.  Jessyka was born at 26 weeks at 10 ounces and 9 inches long!  Elijah was born at 24 weeks and was 17 ounces and 11 inches, just a little smaller than Kellie.  They both are fighting off bowel trouble and are around six weeks old.  We want to see them have good outcomes!  There is also a mom in our city who is expecting sextuplets.  She will be 25 weeks gestation tomorrow.  Please pray for safety and health for all her babies, and peace and strength for her and her husband as they wait out the birth in the hospital....which everyone hopes is a LONG way off!

Thank you for your continued interest in and support of Kellie!

Julie

Well, I just have to report the incredible progress that Kellie has made in the last two weeks!  It's truly like a switch went on!  We are so amazed and happy!  Here is a run-down from her calendar where I keep track of all she does:

March 10 - Totally off a bottle and drinking her milk from a sippy cup!  We've worked on this over a year...she got it in a day's work!

March 12 - Cruised independently for 2-3 feet without any cues!

March 13 - Dove into Grandma's arms when she came for a visit (she won't do that for us) - A first!

March 14 - Dove into the director of the therapeutic riding program (still not for us!)

March 15 - Independently, without clues, placed three wooden puzzle pieces into their proper places (hexagon, triangle, pentagon)

March 18 - Ate food from a SPOON!!!!  We've been working on this for 15 months!!!!  It was mashed potatoes and gravy, and she didn't fight us very much!

March 19 - Ate more food from a spoon!  AND allowed us to give her sips (okay, drips) of water from a sippy cup!  She's never had anything but milk for fluid!

March 20 - (25 months actual, 21 adjusted age) Pulled to a stand, with cues.  She's been working on this for months!  Cruised completely around her Crawl and Cruise Playground, a distance of about 6 feet!

March 22 - Pulled up to "high kneel" position independently!

March 23 - Tried to climb the stairs.

Today - Crawled properly (quadruped - all fours) for 6 paces twice!  She's been working on this at therapy for months also!  She's slowly worked from scooting on her bottom, to a combination scoot/crawl.  Now we know she is able to crawl, she just has to want to.

Also Today - Independently pulled to a stand in her crib....and screamed because she didn't want to get down and go to sleep!

She's done other neat stuff in the past month:  plays tug-of-war with Jacob when in the car, plays "follow the leader" (she's the leader and has us do all sorts of silly stuff!), always has a "song of the week" that she "sings"...Jesus Loves Me, Old McDonald, Rock-A-Bye Baby, London Bridge....plays on the Rock-n-Bounce Zebra, show us "so big", learning animal sounds (especially loves her Baby Doolittle DVD's), playing for long periods in the sandbox (even when Jacob poured sand over her head), and eating new foods by spoon everyday this week!  We are overjoyed and more amazed than the last time we wrote!  What a month it's been!

It is time for her therapists to re-evaluate her this week, so in a week or so I will report her assessment scores.  We are anxious to see how much improvement she's made since December!  We should also have new photos posted soon since we just got two rolls back!

If you notice, we now have a search feature on here!  If you are visiting and want to find info on her site about a topic, then enter the item.  It won't take you directly to the word, but it will take you to the page, where you can do "edit" then "find on this page".

We welcome all new visitors to the site, especially those reading about Kellie in relation to the March of Dimes!  Thank you for supporting this wonderful cause!  Please come say "hi" to us at WalkAmerica or any other MOD event!

I wanted to also update everyone about the babies I mentioned last month!  Elijah and Jessyka are still going strong!  They've overcome many, many potentially fatal obstacles and it's miraculous!  Also miraculous was the birth of our children's pastor's baby, who was born with several congenital heart defects on Feb 21.  She's had surgery and is a miracle child!  Please continue to pray for these three babies.  Also keep a local family in your prayers; the mom is expecting sextuplets and has been on hospital bed rest since early January.  She's currently 29 weeks pregnant and really needs to make it another two at the least to give all her babies a chance.  Pray for a safe delivery for the babies (3 boys, 3 girls) and their mom.  Pray for the health of all involved!  Thank you so much!

I'll try to write more in a week or so!

Julie

Obviously since the last update, I didn't get Kellie's assessment scores posted like I promised.  Sorry!  I've been spending a lot of time working on the NICU resource library project.  It is so fun and I can't wait to have the room open!  Many thanks again to the March of Dimes and all the MOD supporters for funding this much needed project!

Kellie's had a couple of assessments over the past month.  Her physical and occupational therapists re-evaluated her motor skills using the Peabody Developmental Motor Skills assessment.  They do this every three months.  Here are her results at 25 months actual (21 adjusted age):

Gross Motor

• Reflexes - 10 month level, up from 7 months
• Stationary - 10 month level, no change
• Locomotion - 9 month level, no change
• Object Manipulation - 12 month level, not previously tested

Fine Motor

• Grasping - 15 month level, no change
• Visual Motor Integration - 14 month level, up from 12 months

While she doesn't appear to have much improvement this time, she actually did.  What happened is that the age ranges she's at have many skills within that age.  So on paper it doesn't look like much improvement.  On the gross motor items, she almost made the 12 month level on everything, but she missed just one thing each of two categories:  she wouldn't pull up on a chair and she doesn't crawl over things like our legs.  In December she had made great improvements in fine motor, so she stalled some in this area, but actually is doing quite a lot more than in December.

Last week, at OT, I filled out a Sensory Profile on Kellie so we can get a better idea of where her sensory processing deficiencies are.  These are the results:

Within Normal Range for:

• General Processing
• Tactile Processing (touch)

At Risk in:

• Visual Processing
• Auditory Processing
• Vestibular Processing (balance, motion)
• Oral Sensory Processing

As she gets closer to age three, the sensory profiles are more accurate.  She is a sensory seeker, the opposite of the children who get overwhelmed by sensory input.  So she does things like shaking her head side-to-side and up and down, putting everything in her mouth, licking things (this is a new one) like her clothes, our skin, the doctor's stethoscope, etc.  She also still loves to be thrown around and do backbends from our arms and then sit up, causing herself to have a head rush.  We've noticed over the past few months where her visual and auditory processing are having trouble.  The developmental pediatrician first mentioned it in January.  Kellie will not make eye contact very often, even with her reflection in a mirror.  Nor will she turn and look at you when you call her name.  So these are concerns we are working on and following at therapy.  Her OT sessions are now 50% fine motor activities and 50% sensory input.  Her need for spicy food is part of the oral sensory processing, as was her long-term oral defensiveness to the spoon and certain textures.

When Kellie turns three years old, she will transition out of the Early Intervention system (locally, Rainbows United) and will transition into our School District (Haysville) for her special education and therapy needs.  This is 10 months away, but we are already having to work on it.  One of the concerns will be proper transportation to the preschool and proper sitting arrangements at school.  This concern, combined with her lack of standing and walking, has brought up the possibility that she will get either an adaptive stroller or a push chair or wheel chair.  The advantage of these is that it will help her sit properly, we can transport her better, and any of those can be tied down in the school bus.  The PT said a wheel chair is preferred so that Kellie can ambulate herself, whereas in a stroller or push chair (basically the same as an adaptive stroller) she has to be pushed by someone.  Kellie is not liking to be held and carried around and she sits very poorly in her "normal" stroller.  She's just so long and getting heavy, that she's hard to hold, especially when she's wiggly or doing some of her "acrobatics".  She's a toddler stuck in an infant's body and it frustrates her at times.  The PT has been introducing her to a therapeutic walker, but since Kellie is fascinated by wheels, all she wants to do is sit down and spin the wheels on the walker.  So the wheels are coming off!  I ended up having to buy her her own Tonka truck because she goes nuts over all of Jacob's toy cars, big and little.  He gets mad when she plays with them, especially the Hot Wheels since he knows they can choke her.  She could sit and spin wheels all day long.  Maybe she'd be great in a wheelchair!

The majority of her motor skills delays are caused by her low muscle tone, defined as "hypotonia".  She has generalized low tone throughout her body, but her legs and trunk are affected more than her arms.  She's changed her bottom-scooting into more of a scoot-crawl motion and can get around pretty fast.  She has the ability to pull to a stand, but is rarely self-motivated to do it.  She does, however, pull to a "tall kneel" position quite a lot.  Her scoot/crawl and her kneeling have made her more apt to sit in an improper way.  Called "W" sitting, it is bad for her hips and legs.  She likes the position because it gives her stability without a lot of work, but we are constantly on to her to "sit properly".  Jacob normally takes it upon himself to scream at her and move her legs into a proper position (he's been to just a few too many therapy sessions)!  Her hips and legs are classified as "hyper mobile"; what many people take as just being limber, but it's actually a problem.

On the good side of development, Kellie has gotten very good at doing wooden, non-interlocking puzzles.  The shape puzzle I mentioned in my last update is no longer a challenge at all for her.  She doesn't just place three shapes in the correct places, she does all eight of them on her own!  At OT, there is a fruit puzzle and she can do all five pieces with just a little help getting them lined up properly.  She also loves to play with our Magnadoodle toy, drawing circles and arcs with the magnets.  She is also completely fascinated by the sand box and will play out there for hours!  One Saturday she played there for two hours and only got out because I made her take a nap!  She also loves the bathtub and I don't think I'll ever get her out of the wading pool this summer!

Her spoon feeding is going well.  Many people have misunderstood us that she's feeding herself by spoon, that that was what we've worked on for so long, but it's actually that she will allow us to feed her by spoon.  She's a long way off from feeding herself.  That is why it was so frustrating, she wouldn't let a spoon near her mouth for over 15 months!  We had a little setback with the feeding the week after I reported it.  We had to go out of state for a relative's funeral and she got out of sync.  It took another three weeks to get her to eat without much fuss again.  Now she pretty much eats anything, as long at it isn't cold or too lumpy.  Her favorite food is guacamole!  She loves it mixed with hot sauce and either bananas or applesauce!  She loves anything spicy and I end up having to put garlic and/or pepper in most of her food!  Since she seeks out oral stimulation, that is why she loves the spicy food.  Since she's been eating fruits and vegetables for the first time in her life, her chronic constipation has improved and we've been able to wean her down just a little on her fiber medication.  Kellie's never had much ability to sense appetite, and whereas before with her bottles we had to nearly force it down her (she never felt hungry) now it's gone the other way and she doesn't know how to tell us to stop spoon feeding her.  She fights through most of the meal, so we never know if it's just a "normal" fight or a "stop feeding me" fight (hands up in front of face).  On more than one occasion we've overfed her by mistake, thinking, "wow, look how much she's eating!?!"  It's not a good combination since she still suffers from an occasional reflux episode.  Yuck.

We consulted with the nutritionist (RD) again when Kellie started eating by spoon.  The RD said to add butter or whole milk powder to everything she eats.  So she gets one tablespoon of butter (100 calories) per small bowl of veggies and one tablespoon of whole milk powder (40 calories) in fruits and yogurt.  The extra calories in the add-ins, in combination with all the stuff she's eating, has made her gain nearly 1.5 lbs in 6 weeks time!  It took her 7 months to gain the previous pound!  So she's at 19.5 lbs as of last week.  Her length is 31 inches, so she's still long and thin.  But with the weight gain her cheeks are filling out and her ribs don't show as bad.  Once she reaches 20 pounds, she can finally sit forward-facing in her car seat!  Now that is a big milestone we've been waiting for!  While we were gone on our four-day trip, she got her three final teeth, all molars, all at once.  She was quite the trooper about it!  So now she has all her teeth!  She even visited the dentist!  He said everything looked great, which is good news since her teeth are at risk for things like enamel hypoplasia and discoloration due to her extreme prematurity and many of the medicines she was on early in her life.

Many things with Kellie's development are beginning to point to a possible mild diagnosis of cerebral palsy (CP).  She saw her pediatrician (ped) last week and he wants the neurologist and the developmental pediatrician to make the diagnosis.  She sees the neuro in June and the developmental ped in Oct.  For now, Kellie's major diagnosis is just "global developmental delay".  The ped says this is a "soft" diagnosis, whereas CP is an "organic" diagnosis.  Cerebral palsy has a wide range of definitions and disabilities within it.  Kellie does not have the more common, more recognizable form, spastic CP, or hypertonic (high tone), she would get a diagnosis based on her low tone/hypotonia.  It will not change anything in the way of therapy or how we think of her, it would just be a label.  CP is not degenerative, meaning it doesn't get worse with time.  In fact, with proper therapy, it can actually improve.  Even if she gets the diagnosis, most people would not be able to tell she had it.  It would mean she could possibly get better insurance coverage for things like a wheelchair or other adaptive equipment.  We don't know how her insurance would pay, but many won't cover "soft" diagnoses or non-static problems.  (Kellie isn't static since she does show improvements).  She could also qualify for more services as needed like therapy.  The developmental pediatrician does think she will walk, it just may still be awhile.  Kellie was released from the pulmonologist (lung) last month after her final Synagis shot (RSV protection).  Both the ped and the pulm agree that Kellie has just about lost the diagnosis of Chronic Lung Disease/Bronchopulmonary Dysplasia!  Yeah!

We had to miss our ambassador family appearance at the March of Dimes WalkAmerica because I had strep throat and Kellie had a slight fever.  We are sorry we missed you if you came to see us!  Since it was raining, it was a miserable morning anyway!  Please see us at the Bikers for Babies or Star Chef's events!

I have some updates about the other babies I asked for prayer about.  Baby Jessyka got off her ventilator yesterday after 15 weeks!  Baby Elijah has also been on the ventilator for 15 weeks and hopefully will come off in the next two weeks.  Both babies passed their due dates still on the ventilator and both babies are struggling with liver problems.  They both have very extended tummies!  Jessyka just passed 3 lbs (she was born at 10.7 ounces) and Elijah passed 6 lbs (he was 1 lb 1 oz at birth).  The Headrick sextuplets were born Apr 6 at over 31 weeks, the longest sextuplet pregnancy on record.  They are doing well and are "co-bedded" in pairs.  They have an NICU-mate, our children's pastor's daughter.  She was born Feb 21 with congenital heart defects and sent to Michigan for heart surgery.  She came home two weeks ago to a local hospital and is trying to get stronger so she can go home.  She needs prayers for her lung status, surgery recovery, and learning how to eat.  Please pray for her as well.

We also have a new prayer need.  Another online preemie friend of ours, Haley, is a former 25-weeker, now 3 years old.  Last month she was diagnosed with Acute Lymphoblastic Leukemia (ALL), a type of cancer.  Please pray for her speedy recovery!  You can check out her website for updates: Haley's Leukemia Updates

We will update this site with new photos soon.  We have four rolls to scan in the computer before we can!  We've gotten a little behind in that area!  I have birthday party pics and also photos at hippotherapy (therapeutic horse riding).  She also got her first hair trim (by me) and we'll have to get a picture of her with her new (but crooked!) bangs!

Thank you for reading so far!  It seems there was just so much to explain this time!  I'll let you know how Kellie comes out at the neurologist next month!

Julie

Well, this will likely be a long update as usual  It's only been seven weeks since the last one, but there is a lot to say!  As you can see by the header, today marks the second anniversary of Kellie's due date, so she's officially two years "adjusted" age.  She will be 28 months actual age in two days!  Just to let you know, we write these updates for a wide variety of people, and that is why we include so many details (and, if you know me, I like to talk!).  We have many preemie families reading this and they want a certain level of info.  We also have family, friends, and strangers, all with varying levels of information wanted.  Then we have many medical professionals reading who want other details!  Whew!  At it's most basic level, these updates, as well as the "journal", have always been therapeutic for me....and this update I definitely need that!  We still don't have any new photos uploaded on the site, but it is still on our "to do" list!  There are so many new cute ones, I don't know if I'll ever be able to decide which ones to post!

I guess I'll start the update with the most important information.  Two weeks ago, Kellie saw her neurologist who she hadn't seen for 12 months.  Dr. S is the neuro she's always seen since her NICU days.  He got her through her horrific seizures and he's been a good doctor.  But were troubled after the visit since he wasn't concerned with her low tone issues and he mentioned she had Autistic characteristics.  Her therapists (OT and PT) and her pediatrician don't agree with him that her tone is fine.  Her sensory issues (mentioned previously) correlate with Autism, but no one had ever used that label before, so we were very shocked to hear it.  We sought a second opinion and saw a new neurologist today, Dr. E, and now we have some diagnoses to deal with.  Dr. E wants to get some baseline views of Kellie's brain, so she's scheduled for a sedated EEG on July 17th and a sedated MRI on August 13th.  This way, if anything changes with Kellie, we will know where she started.  She hasn't had either test since she was in the NICU.  Kellie will follow up with Dr. E after the two tests.

Dr. E diagnosed Kellie with Hypotonic Diplegic Cerebral Palsy (CP).  Hypotonic means low muscle tone and Diplegic means affecting the legs.  This diagnosis does not come as a surprise and with it Kellie can hopefully get better insurance coverage (mainly for her walker and wheelchair).  We expected Dr. S to make the diagnosis.  Dr. E agrees with Kellie's developmental pediatrician (who she will see in Aug) that Kellie will walk, it will just take her some more time.  She also said since Kellie is showing improvement with her developmental milestones (even if very slowly) then that is good news.  With therapy, we will continue to improve Kellie's motor skills and strength.  She will now have some sort of therapy every week day:  Monday - PT, Tuesday - Hydrotherapy (new), Wednesday - OT, Thursday - Speech therapy at home, Friday - Language playgroup.  We've decided to try hydrotherapy in place of hippotherapy (horse) for awhile and Dr. S thinks Kellie needs the social play of the language play group.

Dr. E also agreed with Dr. S about Kellie's Autistic behavior.  Autism is a "spectrum" disorder so there are varying levels of severity associated with it, as well as many different manifestations.  Like CP, it doesn't get worse with time, and therapy can help overcome it.  Many of the therapies we are currently doing for Kellie's sensory integration dysfunction (see previous update) are also used for Autistic behaviors.  These are Kellie's Autistic "red flags:

• Lack of eye contact (she's showing improvement with this)
• Self-stimulating and repetitive behaviors (explained later)
• Spinning objects
• Intense focus on things instead of people
• Lack of imitative or imaginative play (may be caused by developmental delays)
• Hand flapping
• Not pointing to things
• Difficulty expressing needs
• High pain tolerance
• Rocking/banging head
• Not responding when talked to (even though hearing is fine)
• Non-verbal (may also be caused by developmental delay)
• Sustained odd play
• Uneven gross and fine motor skills
• Impaired social ability

You can see it's a fairly long list!  These are the self-stimulating ("stimming") behaviors she does:  loves to feel vibrations, spinning things to obsession, rocking head, and "fixating" on objects.  Her latest obsessions are the aquarium pump and running dishwasher for their vibrations, the air conditioner vent covers (she takes them out and then "strums" her fingers on them, the vertical blinds, flapping pages of board books, and looking at lights extremely up close.  Her OT (occupational therapist) is working closely with us on these issues.  The brushing and joint compression protocols we do should help these issues.  It takes so much time and we are supposed to do the activities every 90 minutes and we usually forget!

In addition to these new diagnoses, Kellie was just evaluated since it is time for a new IFSP (Individual Family Service Plan) through the Early Intervention service (Rainbows United).  Kellie's OT and PT do evaluations every three months, but she had not had her speech or cognitive areas tested for one year.  Kellie hasn't made many improvements in the past 6-12 months and it is discouraging.  This is how she tested (with the previous scores also) this month, at 27 months actual age, 23 months adjusted:

Cognitive - using Early Learning Assessment Profile - ELAP - (score 12 months ago)

    Cognitive - 11-12 months solidly, some in 14-15 month range (12 months)

    Social - 15 months solid - (11-13 months)

    Adaptive/Self-help - 15 months - (Splinter to 8 months)

Communication - using Rosetti Infant/Toddler language scale (score 12 months ago)

    Expressive language - 6-9 months (5-6 months)

    Receptive level - 11-12 months (8 months)

Gross Motor - using Peabody Developmental Motor Scales - PDMS II (score 3 months ago)

    Reflexes - 11 months (10 months)

    Stationary - 11 months (10 months)

    Locomotion - 9 months (no change in 6 month's time)

    Object Manipulation - 12 months (no change)

Fine Motor - using PDMS II also (score 3 months ago)

    Grasping - 15 months (no change in 6 month's time)

    Visual Motor - 14 months (no change)

In some areas she has shown slight improvement, but because the tests don't take into account some things like adaptive equipment (her therapeutic walker, for instance) she scores lower.  Her OT and PT are looking into using a different test next time.

Okay, I think that is enough sad news.  I've decided that these diagnoses are just labels and they don't change anything about Kellie.  With the Lord's help, she's overcome so many things in her two years and she will continue to overcome more ("I have given you authority to trample on snakes and scorpions and to overcome all the power of the enemy; nothing will harm you" - Luke 10:19).  I wish to thank our pastors, family, friends, and strangers who have encouraged us and prayed for us in the past two weeks.  ("Praise be to the God and Father of or Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God - 2 Corinthians 1:3-4) Thank you from the bottom of our hearts!  There is a common feeling/saying among preemie families that we "are waiting for the other shoe to drop".  Well, it's been raining shoes lately.  But you know what?!?!  We will get through the storm, as always, by trusting in the Lord and His wonderful promises he gave us in His Holy Word, The Bible.  We will stand on The Word and claim that we will get through this and even though it may be hard at times, Jesus Christ himself will guide and lead us.  We claim healing for Kellie in the name of Jesus Christ just as we have so many times before.  We will continue to be her advocate and love her just as she is, our beautiful, happy daughter!  We will continue to see the miracles of her life unfold daily as we did so many times during her first year.  I admit I was sad with the unknown fear of the future the past two weeks, but I have overcome it since it is straight from the enemy himself and I do not have to give in to the fear.  I am an overcomer and Kellie has a wonderful hope and a future!  Just as the storms were raging while we dealt with the NICU, and we stood firm in our faith, we will now.  The Lord has placed just the right songs and scriptures in my life to give me encouragement.  For those who've been with us from the "early days", you know Christian music is a big part of our lives (I'm a former radio DJ).  The CD that has ministered to me lately is from the group Tree 63, from South Africa, titled "63".  WOW! Many of the songs come from Psalm 63:

"Oh God, you are my God, earnestly I seek you; my soul thirsts for you, my body longs for you, in a dry and weary land where there is no water.  I have seen you in the sanctuary and behold your power and glory.  Because your love is better than life, my lips will glorify you.  I will praise you as long as I live, and in your name I will lift up my hands.  My soul will be satisfied with the richest of foods; with singing lips my mouth will praise you.  On my bed I remember you; I think of you through the watches of the night.  Because you are my help, I sing in the shadow of your wings.  My soul clings to you; your right hand upholds me.  They who seek my life will be destroyed; they will go down to the depths of the earth.  They will be given over to the sword and become food for jackals.  But the king will rejoice in God; all who swear by God's name will praise him, while the mouths of liars will be silenced" - Psalm 63 (NIV)

In news unrelated to Kellie, we had our open house for the new March of Dimes Parent Resource Library for the NICU at Wesley Medical Center on May 29 & 30th.  There were many NICU graduates there which gave the current parents hope.  Some of the top executives from the hospital as well as the March of Dimes were there and it was great to have their support.  One local TV station did a story about the opening and they showed a tiny bit of my interview, Kellie, the room, and some other graduate kids.  A photo of Kellie and I doing the ribbon cutting was in the Wesley employee newsletter the following week.  We will put the it in with the photos when we finally update them!  Some NICU parents used the room the first day it was open and it was very neat to see them already gaining information to help them through their journey.  I still have many things to finish up on the project.  If you need information on the specifics of what we did, please email me (link at left) and I'll get you the info.  I have a lot!  Many, many thanks to everyone who helped with the project, including Peter (who is dealing with the mess around the house) and my mom (who's put in a lot of babysitting hours!)!

It seems I cannot get get a break from "stuff" happening in my life lately!  In the midst of opening the resource library, I was plagued with one thing after another!  I have had strep throat twice, major dental work (a root canal, and three crowns!), and a new diagnosis (from the endocrinologist) of Polycystic Ovarian Syndrome (PCOS).  Having said that, in addition to Kellie's news, we are ready for a vacation!  Peter has been putting in a lot of volunteer hours at church and its school working on their computers (about 80 of them!).  So I've added to my plate planning a vacation!  We think we will go to Colorado for the sixth year in a row (Jacob won't hear of going anywhere else!), this time visiting the far west part of the state and Eastern Utah.  Our journey will take us to several national parks and monuments!  I am ready!

If you'd like updated information about the other babies I've previously mentioned, please email me and I'll fill you in.  If you'd like information about Autism or Cerebral Palsy, just do an Internet search.  We did update the links in the past month, and there are some CP links, but no Autism ones yet.  Also, if you have PCOS, I'd love to hear from you.  The endocrinologist said there's a big link to prematurity with it.  I know it was the cause of my infertility, and now it's nice to have some sort of "reason" to Kellie's early birth and my pregnancy complications with Jacob!  We will not be having any more kids!

To close, I'd like to share a true story about Kellie that happened 10 days ago...many of you have read this via email or preemie boards, but I had to share it here, too!  You can decide if you want to laugh or cry with me!  For parents of kids with reflux, (GERD - gastroesophogeal reflux disease) you will really appreciate this!!

"Well, I guess I needed some "humor" in my life lately....

 

I went to Walgreen's pharmacy last night to get my b.c. pill transferred. I forgot to get it via the mail and went to start a new pack yesterday...and oops! Of course since it was Sunday night they were busy (open 24/7). So we (kids and I) waited a long time in line.  So as I was finally talking to the pharmacist, Kellie decided she has to go poopy (she has chronic constipation due to low tone). Of course, she was probably signing it but with my back to her I didn't know. Anyway, I hear Jacob scream, "she's puking!!!!" So I try to help her some, talk to the pharmacist (who didn't have a clue what was going on, he couldn't see), calm down Jacob, and apologize to all the people in line. She was projectile out her mouth and NOSE (common for her) She usually pukes when she poops, even on the toilet (where she normally goes poop). Of course I didn't have the diaper bag, and the burp cloth I keep in my purse was gone (used all week for her snotty nose...it was in the wash). Then the guy behind me said an employee went for paper towels. This stuff was dripping everywhere!!!! All over the cart, in Kellie's jelly shoes, the seat, my purse, all over her, YUCK! I just told the pharmacist "whatever" when he said they don't carry my Rx plan. He said they have to call the doc in the morning.  I said, "just do what you have to".

 

So the employee comes back with paper towels....at the end of the roll...I managed to get a lot cleaned up (boy was their floor sticky!...she's on whole milk with instant breakfast added...) I told the guy behind me she has reflux (didn't want people to think she had some contagious puke virus! and he said he understood because his granddaughter has it and had a g-tube for a few years. Well, at least he could sympathize! I was just glad she hadn't had dinner, just her milk snack!

 

So we went to the bathroom....so Kellie could finish pooping...I knew she wasn't done...Of course she's SO tiny that she gets swallowed up with public toilets, and I didn't have her seat adapter....so I do the best I could (we've had practice at therapy) getting her on the potty sitting backwards, but she didn't want to keep her legs and feet on the seat...she wanted to splash them in the water!!!!!! ACK!!! I had left her cloth diaper on at home since I hadn't planned on being gone very long. No place to put the dirty diaper...should have just thrown it away....

 

So anyway, she finishes pooping and went potty (#1) some. By this time I'm near tears but just have to laugh....I thankfully keep a diaper and some wipes in my purse....I go to get the wipes and they were dried up!!! So I carried her under my arm (she had poopy and puke everywhere) to the sink where I moistened the TWO small wipes (the flushable ones). That helped some. There was no place to lay her, so I stood her up by the t.p. so it would keep her entertained!!! (fast thinkin' Mama!) Well, she decides to potty some more...all over the floor! Ha!!! I finally got her, the bathroom stall, and the cart cleaned, and had Jacob help me put on her pants...and used the empty wipes ziploc baggie for the dirty diaper...and off we went. That crisis over....

 

Then I decided I was NOT going to cook when I got home (it was 8:30pm) so we went to the burger/dairy store (Braum's) for milk and dinner. They were busy, too, and on the way out, I spilled one 20 oz Sprite ALL over ALL their shopping carts!!! What a hoot! All this is complicated by the fact that I feel horrible...not so much from Kellie's neuro appt...although that's a factor mentally...but because I think I'm getting strep throat again (had it for 14 days in April)!!!!  AND I'm having allergic reactions to the new drug (Aldactone) the endocrinologist has me on!!!

 

"Calgon, take me away, *PLEASE*!!!!"

Julie

Friday, June 28, 2002