Baylee’s story
Written by: Tori Lindemulder
Let me start this by saying that there aren’t enough words and there isn't enough time to ever fully describe our journey with our daughter. The hard, the beautiful, the chaos, confusion and peace are all so complexly woven together that my husband and I will spend a lifetime untangling it, even with the help of the O community and other NICU moms and dads. Each omphalocele story is different. None “worse” or “better” than the others, just different. This is ours.
June 2, 2021 was the first time we had ever heard the word “omphalocele.” We were 12 weeks along in my first pregnancy when the doctor told us the ultrasound findings. She handed us a 26 page medical journal on omphaloceles and a referral to Maternal Fetal Medicine, and we were left alone to process…and to Google.
Google was a really scary place for us. Omphaloceles are often associated with many other medical conditions, both physical and cognitive, and while some of these could be diagnosed before birth, we wouldn’t truly know our baby’s full condition until she was born. For a while, the option to terminate the pregnancy came up at each appointment. That was never on the table for us, regardless of what additional ultrasounds or testing might find. We loved this baby - our baby, and more importantly, we knew our God did too. We met with a genetic counselor and had some initial blood work done, both of which determined a. I did nothing to cause the omphalocele (which is true for all moms! HEAR THIS!) and b. there were no other defects, conditions or disorders seen in utero. 35 appointments and 26 weeks later, our baby girl was born.
Baylee arrived five days before her scheduled c-section on December 1, 2021. Because of her condition, I wasn’t even able to see her before she was whisked away to the NICU, her father next to her. From my recovery room, my husband sent me pictures, videos and updates. Upon birth, Baylee was on room air, vitals stable and an overall “healthy” baby, other than her abdominal defect. It took a few hours for me to get down to see her, but when I did, my whole perspective changed: on motherhood, on life, on her. The last seven months I had spent so much time worrying about her and here she was, crushing it. I didn’t even notice her omphalocele to be honest.
The next few days of learning and loving Baylee were a blur. The months before her birth seemed to drag on and we were told to expect anywhere from one to six months in the NICU before considering treatment, yet here we were, two days in, attempting our first treatment plan.
Treatment and Closure Surgery
The first plan of attack was to create a ‘silo’ around Baylee’s omphalocele out of duoderm (a medical tape), secure it with popsicle sticks (seriously) and use the popsicle sticks to compress the omphalocele in a little bit every other day or so. This lasted about 8 hours before the duoderm split. Looking back now, we know this wasn’t as traumatic as it felt in the moment. The on-call surgeon had to come in, inspect her omphalocele for tears in the sac and create a new plan. All the hope we had felt shattered, and we made an abrupt and tearful decision to move onto treatment plan B.
Plan B was to surgically adhere a mesh “silo” to Baylee’s fascia and use the same technique to compress her omphalocele a little bit every other day by tying a new line of sutures further down the mesh. The initial surgery for this took place on December 5, 2021. For the next few weeks, we watched our very sedated, very swollen baby closely through her isolette. Due to the fragility of her omphalocele, myriad of ventilators, tubes and wires, and full paralytic (so she wouldn’t bust out of her silo), at times there wasn’t much interaction to be had with her. Still, we could see visible progress in the decrease of size of her O.
Baylee had her closure surgery on December 23rd, 2021. Christmas was spent rejoicing as a family of 3 in the NICU and eagerly awaiting recovery. Over the next few weeks, Baylee weaned off oxygen, pain and sedation medications, and we found ways to love on her while she healed.
After 7 weeks in the NICU, we finally got to bring our daughter home. Baylee came home on an NG tube for feeding and with a bandage over her wound. Both of those things seemed more manageable than the list of follow up appointments she also came home with. NICU Clinic, Surgery, Cardiology, Speech, Early Intervention (OT, PT, SLP), GI and Dermatology. Here she was, this perfect little being, seemingly healthy now that she had had her closure, yet here I sit...even as I write this, waiting for the rug to be pulled out from under me again at the next appointment.
Baylee has only been home for 3 weeks, so there is much we don’t know about what her future holds. What we do know is that she is perfect to us. We believe she has been uniquely created by God to have this story and that He has allowed us to be her parents and share it in order that it may bring glory to Him. We are grateful to the medical team who cared for her both in utero, and in the NICU and are hopeful for the progress she will make with her future team. We are grateful for the omphalocele community and other O warriors and are hopeful for the awareness and support they will bring to other beautiful, loved, and worthy babies.
