Caleb’s Story
O Warrior Stories
Written by: Lauren Skoniecki
The date was Wednesday January 29, 2020 (SO close to omphalocele awareness day!) and we were headed into our 20-week scan. Holding hands as we waited for the ultrasound technician to come in. I've never asked to record a heartbeat before, but for some reason I felt compelled to this time, and so I did. After the scan was complete, he told us we were set and could go. We cleaned off my growing belly and held hands on our way to the exit only to be stopped and asked to come back to the room. We didn't speak. We quietly awaited the Doctor and squeezed one another's hands a little tighter. When she arrived, she said for the most part the ultrasound looked good except for one thing. The baby had a rare birth defect. The word she was saying was not discernable to us. We had never heard of this term. My mind was spinning, and I was no longer listening because I was in an instant panic.
The doctor proceeded to clarify that they were not super familiar with these types of birth defects as they aren't very common. Unsure if it was gastroschisis- which would be more in our favor or an omphalocele that tends to come with other anomalies. But she was leaning more towards omphalocele, which we would soon discover was accurate. Now, this was a Catholic hospital. Had we been ANYWHERE else, the topic of aborting would have been a conversation. But they could not discuss that with us, so she lightly said things like, "if the baby is viable, trisomy, amniocentesis, unsure of the future." and it was at that point that I went blank with confusion, anger, and hopelessness.
Our journey began, and we were still holding hands, on our way out of the hospital. Unprepared for the future, uneducated on this rare birth defect that would become our lives. For ONCE Dr. Google provided very little information, and this was probably for the best. I would be told I could no longer see my regular OB; I had the option of an amniocentesis (which we opted for), I would resume all of my prenatal care at a children's hospital, and have in depth ultrasounds, deliver my baby there, have surgery there & follow up care there... all while navigating through a pandemic and raising two small children, and being told my insurance was not typically accepted at the new hospital. They spilled the beans, and let us in on the gender which we didn't want to know. But for statistics sake, we were grateful to have another boy.
Fast forward through all of the scary appointments that I was forced to attend alone, making sure his small omphalocele was not growing too large, containing only bowel which became dilated so we feared dead segments, making sure he passed all of his breathing tests, discussing surgeries, and other possible syndromes. Never being checked for dilation when I approached 37 weeks and naturally went into labor.
June 13, 2020, two hours after parking, three pushes, & no pain meds; Caleb Augustus Gray made an appearance, ready to show the world his strength. The nurses were stunned to see his umbilical cord/small omphalocele but they did a fantastic job of caring for him immediately. He was breathing on his own. He touched my skin and I melted and bawled. I didn't think I would get this opportunity, but they let me kiss and hold him. A small victory for an omphalocele parent.
Our warrior was perfect. 6 hours after he was born, they discussed his repair surgery and moved forward with it. I sat in a hospital room alone. Asking for pain meds. I recovered alone and was discharged the following day. There was nothing else they could do for me. I was scared to go to the NICU and see him because I didn't think I could handle seeing him sedated, with a surgical scar, tubes, wires, no clothes, with strangers. And I was right, I hardly kept it together the first few times. I cried so much as I held that tiny hand. Letting him know his momma was there, letting him learn my voice from the outside.
He would need scans of every part of his tiny 20-inch body. Brain, spine, kidneys, etc. He would pass most but not all. He was sent home TEN DAYS later! With a bilateral hydrocele, hydronephrosis, omphalocele, VSD, and a heart murmur that would be gone before we even left. He would go on to see over 10 specialists, have routine appointments, and continue different meds. At 4 months he started seeing an eye doctor for colobomas of the retina, in both eyes and strabismus. At 6 months it was discovered that he had a dairy/soy intolerance. At 7 months he was hospitalized for his first partial bowel obstruction, at 8 months his second obstruction and at 9 months his third. Which resulted in emergency abdominal surgery to remove scar tissue, remove his appendix, and to place his intestines on their proper sides in hopes to keep things moving more freely.
A lot has happened since then. He suffers from dysmotility, a slowdown in the GI tract. He had had a few episodes since coming home from his second surgery but we have managed them at home and he rebounds well. He has seen a geneticist who has deemed this as an isolated omphalocele finding no genetic connection, and no syndrome connected. He now has a GI doctor, a GI surgeon, an eye doctor and a pediatrician. He sees the cardiologist two years from now. Almost all of the anomalies have been resolved on their own.
He is thriving at 2.5 years old, hitting his milestones and keeping us on our toes. He is mischievous, wicked, smart with a temper and he knows what he wants.
We treated him like he was glass and could break at any moment, but he was strong and showed us we could breathe and just enjoy watching him grow. And that is what we have chosen to do, embrace every minute- even the challenging ones that help us learn, because his beautiful life paved the way for our new journey.
