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 recover