Kellie's Birth Story

By Julie Crooks - May 2001

Kellie's story begins a few years before her birth. In 1995, after four years of marriage, Peter and I decided to start a family. After one year with no success, we visited the doctor and had several infertility tests. The main problem was my annovulation. I started a fertility drug called Clomid to help me ovulate. Month after month we still weren't pregnant. It was the hardest time of my life. After ten months we finally had a positive test, but four days after we got the results it was apparent we were losing the baby. It was difficult to take, but at least we knew we could conceive; we just had to figure out how to stay pregnant. I wanted to take a break from the drug and its nasty side effects, but Peter convinced me to try again. Three months later, on the eve of our sixth wedding anniversary, Peter thought "something was up". The next morning I got out of bed, took a pregnancy test, then went back to bed and told Peter, "Happy Birthday!"...I knew our baby would be due around his birthday!

This time the pregnancy went fine - at least for the first five months. At 24 weeks, we found out I was dilating and then a week later I started having contractions. I was placed on strict bed rest and anti-labor drugs (Brethine). We managed to survive the bed rest and four months later (03/04/98) our son, Jacob, was born full term at 38.6 weeks. I was induced for pre-eclampsia and it was a very difficult delivery that ended up in a cesarean birth.

After Jacob's birth, I had to purchase my own health insurance because I was now a stay-at-home mom. The new policy had a one-year waiting period for pregnancy so we used birth control for that year. When the time was up we stopped it and trusted the Lord to provide us with another baby in His time. We decided not to ever use fertility treatment again and figured a natural conception was possible, but not likely to happen. Lo and behold, three months later I woke up ill one day and decided to rule out pregnancy. We were rather surprised by the positive result! I had mixed emotions because I never dreamed I would have children two years apart and I wondered how I would deal with it. I was also scared because I knew that if I needed to be on bed rest again it would be very difficult with a husband and a toddler to take care of!

With the exception of fatigue I was fairly symptom-free during the first trimester of my pregnancy. In preparation for the bed rest I hoped not to have, I did several things to prepare for the new baby. We had a sonogram at 10 weeks to date the pregnancy since we had no idea when it happened. With my ovulation history it was impossible to know. The sonogram indicated my due date was June 18, 2000 - Father's day! How appropriate since Jacob was due on Peter's birthday! I did some checking and Baby was conceived while we were on vacation...I remember noticing when I ovulated...I usually don't know.

At my 22-week doctor appointment I was checked for dilation. I was "fingertip" dilated, but there was no thinning. My doctor said he would watch it. That was a Tuesday. The following Sunday, at exactly 23 weeks pregnant (by the sonogram dates...22.4 weeks by ovulation), I started spotting and called the doctor on call. He said to go to the hospital and have it checked out. Upon examination, I was four centimeters dilated and the amniotic sac was bulging through the cervix. I was also bleeding a lot more. I hadn't felt any contractions and the fetal monitor wasn't picking any up. I was immediately placed head down in the hospital bed (trendelenburg) and a sonogram was ordered. The perinatologist spoke with us and then had the neonatologist speak to us. They said there was nothing they could do to stop the approaching birth of our baby. The question they couldn't answer was when the birth would occur.

The sonogram confirmed the gestation of the baby and told us the gender - a baby girl! She was perfectly healthy inside of me, and I saw her four heart chambers beating. It was tricky for the fetal monitor to pick up her heart rate because she was so tiny. A nurse basically had to hold the monitor belt in place all afternoon.

The doctors gave us a brochure to read that listed all the statistics about premature babies. Our baby had a less-than-one-percent survival statistic - defined as going home from the hospital. If she could stay in me for one more week her survival statistic was 57%, and for two more weeks it increased to 84%. The charts listed that a "24-weeker" would weigh 1 pound, 5 ounces and be 13 inches long, so, on average, our baby would be smaller than that. Other statistics were that if she survived, she would have at least a 33% chance of a major handicap and a 40-50% chance for a minor handicap. We were also told about the complications she would most likely develop: Respiratory Distress Syndrome (RDS), Apnea of Prematurity, Anemia, Patent Ductus Arteriosis (PDA), Intraventricular Hemorrhage (IVH), Infection/Sepsis, and Retinopathy of Prematurity (ROP).

Given the statistics we prayed for her and my body to hang on for at least another week. Knowing that bed rest and drugs worked to bring Jacob to full term, we were optimistic that we would have at least a few days. Every day she hung on would lower her risks. I was given a steroid shot to help her lungs mature faster but needed at least two days worth of shots to have them work. Since Baby was in a breech (feet down) position, I was given a choice of how to deliver her - vaginally or by c-section. My maternal instincts kicked in and I chose the c-section to give her a better chance, even though it meant surgery and its risks for me.

About six hours after arriving at the hospital, crying, praying, and calling our families, and just about the time I was getting comfortable, I suddenly felt like my baby girl was going to kick out of me. The resident checked me and found out my cervix was completely dilated and effaced. I only had two contractions during the day, and they were during the sonogram. Immediately after the resident left my room, "the crew" was taking me to the OR and directing Peter to put on scrubs, and we knew what was going on. I have never been so terrified in my life! While being wheeled down the hallway, I asked the resident if I'd get to see my baby, alive or dead, and asked what she would look like. She said, "you will get to see her and she will be a beautiful baby!" I found comfort in that statement.

Twenty minutes later we heard our tiny daughter's cry. They had told us earlier in the day that she wouldn't cry and kept saying, "IF your baby makes it out of the delivery room...". That barely-audible, kitten-like cry was so incredible! It was my sign from the Lord that everything would be okay. He had given me peace during the pregnancy and I felt it in the delivery room, too. I watched all the doctors and respiratory therapists work on Kellie Christine as much as I could. Peter had a better view than I did and we were amazed at how tiny she was. She was so still and lifeless and her eyelids were fused. They allowed me to see her up-close before they rushed her to the Neonatal Intensive Care Unit (NICU). I knew it would be awhile before I could see her again.

After I was stitched up I was taken to Kellie's bedside still on my gurney. I was told her birth weight and length - 1 pound, 2.6 ounces (527 grams) and 11.5 inches (29 cm) long. She was a mess of wires, tubes, and tape and was covered with plastic wrap. I don't care what anyone says, she was my beautiful baby girl! I was somewhat prepared for how she would look since I spent the majority of my bed rest with Jacob's pregnancy reading about premature birth and babies. I had also volunteered in pediatrics at another hospital for seven years.

I was sad to leave her bedside, but knew I needed to rest and recover. It wasn't until 12 hours later that I was able to get out of bed and visit her again...much sooner than I was up after Jacob's c-section...I had a ton of motivation! In the meantime, the nurses took Polaroid photos of her and brought them to me, along with her footprints. The photos made her look about ten times her size, but at least I could get to know her a little bit.

Kellie was SO tiny: her head was the size of a lemon, her arms and legs were the size of my fingers (Peter's wedding ring fit completely over her foot), her fingers were the size of matchsticks, her ribs were the size of a Cornish game hen, her eyelids were fused like a newborn puppy, and her diaper was the size of a deck of cards...and went all the way to her armpits (but they couldn't even tape her diapers shut). She was greased up (with Vaseline-like Aquaphor) to prevent her skin from breaking down and losing moisture.

Peter and I found ourselves thrust into the "parallel universe" of the NICU. So much information was thrown at us about Kellie and the fragility of her life. We were thankful for all the information the medical staff gave us. The more we learned about her conditions and what was being done for her the more we could feel a sense of "control" over an otherwise uncontrollable situation. Watching all the things Kellie had to deal with made us realize the miracle of any life!

Upon her birth she was added to several prayer chains and at the end of her first week we lost count at 40! It was very difficult for us to update relatives and friends with her day-to-day condition, so we emailed updates and posted them on the website. Every note we received and every visit to the site encouraged us on our journey. We could feel the prayers of all those people holding us up. We survived the first week only through the love, grace, peace, and mercy of the Lord Jesus Christ.

On Kellie's third day, which was also my last day in the hospital, she had a new doctor, the medical director of the NICU. His first time meeting us he had to tell us some really bad news. She had two terminal conditions...air leaks in her lungs (Pulmonary Interstitial Emphysema - PIE) and internal bleeding. We could see the air bubbles under her chest (her skin was translucent). It looked like sunburn blisters. Dr. Bloom told us that the air would most likely crush her frail chest (ribs) as it built up or if the air got into her bloodstream, her heart couldn't pump the air. They did not know where the bleeding was coming from, but even if they did they couldn't do surgery to repair it in her frail state.

We cried harder than we ever have in our lives. We also cried our hearts out to the Lord (in my hospital room). We begged him to spare our precious daughter and heal her completely. We called on all the prayer warriors to storm the Throne of God! We also had a church elder come anoint her with oil and lay hands on her and pray (James 5:13-16). She pulled out of both conditions! It was totally amazing!

The time in the NICU was a roller coaster ride of emotions. We'd have good news and bad news all in the same report. Kellie hung on to the edge of eternity for about two months. Little by little she became stronger and overcame her growing list of problems (see below).

Kellie stayed in the NICU for 108 days and then graduated to the Special Care Nursery. She stayed there for four more weeks learning how to take all her feedings by bottle instead of the feeding tube in her nose (nasogastric/NG tube). Her last two weeks in the hospital were with me in the Mother/Baby program, where we stayed together in a private hospital room getting to know each other better. I was in charge of all her care with just a little bit of assistance from the nurses. I was free to hold her whenever I wanted to, bathe her, learn how to work her monitors and oxygen, and teach her how to bottle feed. When she finally learned how to take all her feedings by bottle and could do it for two days, she was able to come home...148 days (21 weeks) after birth! What a day of celebration that was for us!

After her homecoming, she developed gastro-esophageal reflux disease (GERD or reflux) and gastroparesis (lazy stomach), both controlled with medications. Her eyes developed a type of strabismus, or cross-eye, called alternating esotropia - her eyes turned in. She had successful surgery to repair it. She has several specialists that she follows up with: neurologist, endocrinologist, pulmonologist, developmental pediatrician, two eye doctors, and her pediatrician. She also receives Early Intervention services from Rainbows United. She gets weekly occupational and physical therapy for her delayed motor skills, and monthly visits from a speech therapist.

Kellie is small for both her actual and adjusted age, but genetically she won't be very tall! Little by little she is growing and developing and we are ecstatic with every little step along the way! She has come so far and miraculously beaten so many odds stacked against her! She is a precious daughter and we are so blessed to be her parents! She has touched thousands of people all over the world through the website and her media appearances (local newspaper twice, local news three times, March of Dimes local ambassador baby, and a Woman's World magazine article!) We are so happy that we've been given the task of raising this child for the Lord! Her life has been a unique one and we are humbled by all the support we've received!

****Update April 2003 - Kellie is three years old now!  She is 25 lbs (11.36 kg) and 35 inches - very long and thin!  She is absolutely beautiful and very happy!  She's now been in the local paper four times (any other U.S. papers via news wire), on the local news four times, and in another magazine, Baby Years.  She's been featured in publications in the U.K. and Australia, too!  It's all amazing!  Kellie now attends preschool through our local school district.  She loves it and is making great improvements there, where she gets all her therapy services.  She was diagnosed last summer with very mild Cerebral Palsy affecting mostly her legs.  She hypotonic, which is low muscle tone.  She walks with the help of a walker or with hand-in-hand support.  She has a wheelchair for long distances.  She also has Sensory Integration Dysfunction and seeks out various sensory input:  visual, oral, auditory, tactile, vestibular, and proprioceptive.  She has global developmental delays and feeding challenges, but little by little she's overcoming the list of issues!  God continues to work many miracles in her precious life!****

Please email us with any questions you have or if you are needing any support as a family member or friend of a premature infant!

Below is a list of her diagnoses and respiratory support - mostly for the benefit of premature infant parents who are curious.

Extreme Prematurity

Respiratory Distress Syndrome (RDS)

Pulmonary Interstitial Emphysema (PIE)

Chronic Lung Disease (CLD) / Bronchopulmonary Dysplasia (BPD)

Hypotension (Low blood pressure)

Shock

Arrhythmia (Irregular heart rate)

Peripheral Pulmonic Stenosis

Thrombocytopenia (Low platelets)

Seizures

Diabetes Insipidus

Apnea & Bradycardia (A's & B's)

Hypertonia (High muscle tone)

Hyperbilirubinemia (High bilirubin)

Cholestatic Jaundice

Liver Dysfunction

Oliguria (High urine output)

Acute Renal Failure (Kidneys)

Retinopathy of Prematurity (ROP) Stage 3+ with rush and threashold - corrected with laser surgery

Hypothermia

Edema - Generalized

Euthyroid Sick Syndrome

Hyperglycemia (High blood sugar)

Hypoglycemia (Low blood sugar)

Hyperkalemia (High potassium)

Hyponatremia (Low sodium)

Hypernatremia (High sodium)

Hypocalcemia (Low calcium)

Hypercalcemia (High calcium)

Hypoalbuminemia (Low albumin)

Hypophosphatemia (Low phosphate)

Gastroesophageal Reflux Disease (GERD)

Alternating Esotropia (Strabismus, or "cross-eye")

Gastroparesis (Lazy stomach)

Oscillating Ventilator first three weeks of life

Conventional Ventilator from 3-9.5 weeks

Nasal CPAP (Continuous Positive Airway Pressure) from 9.5 weeks to 15 weeks

Nasal Cannula Supplemental Oxygen from 15 weeks until 9 months