Birth experiences range from fear to gratitude to relief
Parents face unexpected challenges with seriously ill newborn

by Kendall Bilbow, reporter

    Editor’s note: This first-person account was written in May.

   Late night feedings, diaper changes, spit-up accidents and sleep deprivation have never been so appreciated.

   These incidents suddenly turned from burdens to blessings when I realized what a miracle a new baby is.

   I never imagined I would rejoice to see a dirty diaper, but I don’t think I could possibly take advantage of anything again.

   On March 16, we headed to the hospital to bring our first baby into the world, take her right home and start our lives as new parents. On March 17, we knew our lives would never be the same.

   Our beautiful baby girl was brought into this world by emergency C-section and immediately rushed to the Neonatal Intensive Care Unit with an airway obstruction due to a recessed jaw. She couldn’t breathe on her own.

   We were also told she had several other genetic abnormalities, though the doctors couldn’t exactly tell us why, where or what they were. They prepared us for the worst.

   The first few hours after her birth were unimaginable. The doctors didn’t know what to tell us, and we were scared.

   My husband John said, “It was the best and the worst day of my life at the same time.”

   He was strong right from the start. We relied on each other to keep our strength and faith. I didn’t have any answers, and all I wanted to do was hold my baby. I didn’t get to see my little one for almost two days because I was upstairs in recovery.

   I cried a lot in those first few days, but the moment I saw her I knew I had to be strong for her. I also knew that I would do anything for her. She was so sweet and so vulnerable in that little bed all alone.

   My husband and I both agreed that everything else we had worried about was small compared to our love, concern and care for our new little girl.

   Our baby girl was transported to Cook Children’s Hospital four days after she was born. Our daughter, Jylian, needed surgery to give her an airway to breathe.

   When Dr. Scott Tisdell, a neo-natologist from Arlington Memorial, said, “ I trusted Cook’s when my own son needed surgery,” we were confident in his recommendation to transfer her.

   Because of the ventilator tubes that went down her throat, we couldn’t hear Jylian cry.

   When I heard a parent complain about her “screaming baby,” I wanted to tell her just how fortunate she was to hear those cries.

   When I heard parents complain of fussy babies who just wanted to be held, I wanted to tell those parents to cherish every minute of that closeness because I was only able to hold my Jylian two times in the first month of her life.

   I began to realize that the ability to scream, breathe and hold those we love are things that I had taken advantage of.

   I told my husband that the whole world could come crashing down around us, and I wouldn’t care. Our baby was alive, and that was all that mattered.

   I have heard people say, “I never thought it would happen to me.”

   I could honestly say nine months ago that I never thought we would still be in the hospital on my daughter’s seven-week birthday.

   I never thought I could quit my job.

   More imortantly, I never thought that designing the perfect nursery just might not be my biggest worry about having a baby.

   I am now a proud parent of a very strong little girl.

   Jylian has had two surgeries, and her prognosis is excellent. I know that she will hear these stories about the beginning of her life one day and realize what a miracle she is.

   I also know that we were welcomed to parenthood with a great big slap in the face. I’ll never look at life quite the same. It is such a miracle.

   We are better people and better parents because of our experiences, and we wouldn’t change them for the world.

   As I sit in the hospital room that I have been living in for weeks, I thank God for all that he has blessed us with. I am thankful for today, and I am thankful for what the future holds. New motherhood is not what I expected. It’s better.

   I don’t think a bloody knee or a broken bone will ever scare me! My children will learn to appreciate their lives as much as we will.

   We have been through much in these two months, but we are taking our baby home soon, and we have all the time in the world.

Jylian Bilbow - overview

3/17/02—born—7 lbs. 2 oz.
3/27/02—abdominal surgery—7 lbs. 6 oz.
4/11/02—tracheostomy surgery—8 lbs.
4/19/02—moved from NICU to Transitional Care Unit—8 lbs. 2 oz.
5/13/02—surgery to close colostomy and put in G-button (feeding
button)—same weight
5/20/02—left Cook Children’s hospital
5/22/02—appointment with pediatrician—9 lbs.
6/20/02—appointment with pulmonologist at Cook’s (Dr. Dyson)
10 lbs.8oz.
7/22/02—appointment with Dr. Dyson—12 lbs. 6 oz.
7/25/02—appointment with Cranio-facial surgeon (Dr. Salyer)—set
first skull surgery for 9/13/02, then another skull surgery two
months later, then jaw surgery when she is healed and   ready.