Written by Desmond’s mother: Alex Boatright
Baby Desmond was born at 29 weeks gestation. Early on he was feisty and strong. We even talked about transferring him to another hospital with a lower level NICU to make room for the sicker babies at our hospital. We were shocked when he suffered a grade 3 brain bleed. Then two weeks later, he started having more events. I remember feeling like his color was just a bit off and his eyes looked dark, but his nurse told me he just needed a blood transfusion. I went home to sleep, not feeling quite right, but called before going to sleep and his night nurse said, “Frankly, he seems really sick. Something isn’t right.” So I hopped in the car and ran to the hospital immediately. That night I set up my rolling chair by his bed with a blanket and I didn’t leave. I was terrified. I felt paralyzed – like if I left his side he would die and I would have wasted minutes of his life eating or sleeping. His belly was swelling and the x-rays showed pneumatosis. I didn’t understand any of it but I knew what NEC was. I participated in rounds and learned a lot about his care. I read textbooks and studies, and asked a million questions.
The night of December 23rd the nurse, resident, and social worker all worked together to convince me it was safe and OK to go home. Desmond was stable. He was still on his nasal cannula and was his same old combative, feisty self. They told me to go home and spend Christmas Eve morning with a cup of hot chocolate and my husband and come back after a night of real rest in a bed. At 6am Christmas Eve morning I hooked up my breast pump and the moment I turned it on my phone rang. It was the resident telling me Desmond’s intestine had perforated and we needed to come immediately to the hospital. When we arrived he met us in the lobby and explained that Desmond was already sedated and intubated and would be heading down for surgery shortly.
We felt like we would lose Desmond. They took him away and we waited in a parent room with the lights off, waiting for the call that said he didn’t make it. Hours later, the surgeon came in, sat down, and told us that, as far as NEC surgery goes, Desmond’s was pretty good. They only took 4cm of bowel and would watch another area to make sure it didn’t perforate or deteriorate further. On Christmas Day, Desmond started to wither again. His belly was dark red and his blood counts were bad so they took him again to surgery. Luckily he just had some bleeding and they didn’t take any more bowel. His recovery was difficult and involved a popped stitch, which developed a fistula that stooled instead of his ostomy, an infiltrated PICC line that caused his whole side, arm, and neck to swell, and extreme difficulty gaining weight.
I stayed by Desmond’s side through it all. I slept on the lobby couch at night and went back to his bedside for every feed/pump/care. The amazing thing was, in all of this, somehow his brain bleed just self-resolved.
Today Desmond is 20 months old and doing amazingly well. He is a rough and tumble silly boy who loves dinosaurs and giving hugs. He has no lasting medical issues at this time. He is hitting milestone after milestone. He is developmentally on track for his ACTUAL age and is as charming as can be! What a miracle!