Be Part of His Story:
Problem: Premature birth at 29 weeks, bowel perforation, brain bleed
Solution: Bowel reconstruction, blood transfusion
Results: Healthy, happy two year-old!
His Parents’ Experience:
Dylan was born at 29 weeks of gestation, very unexpectedly. His fragile body weighed 3lb and was 16” long. The first few days in the NICU were a blur for my husband and me as we were in shock. The nurses kept telling us that we had a “boring baby” which we learned was a positive remark in the NICU as “boring” equals “doing well”! However, all of that changed when he was four days old. Earlier that day, something felt off to me but I didn't know what exactly. Feeling uneasy, I kept a close eye on Dylan all day, and didn’t leave his room. I didn't know if I should trust my gut.
Eventually, my husband and I left Dylan’s room to grab a quick dinner in the hospital cafeteria. Just as we sat, I received a call from the nurse, “I think something is going on with Dylan." Our little fighter was in trouble and things started happening quickly. The medical team told us that Dylan likely had holes in his bowel and required an emergency exploratory surgery (yikes!). We were more terrified than we had been since Dylan was born. All we could think was “How could a four day old baby who weighed 2lb and 15oz survive a surgery?" We watched in shock as the surgical team of about 10 people prepped Dylan in his little NICU room. The surgical team then wheeled Dylan in his isolette bed out of his NICU room to go to the operating room. We quickly kissed him goodbye and wondered if we’d ever see him again.
Our Brave little guy made it through surgery! Indeed there were holes in his bowel. The surgeon removed the affected sections of bowel and placed the two open ends of his bowel on his abdominal wall (stomas); he also had a Broviac catheter as a central line for IV medication and nutrition. He was safe for the moment but we soon realized that there would be more battles to fight before it was over. We would fight those battles together!
Dylan spent next few months in the hospital being treated for what seemed like a never ending list of issues. He required a blood transfusion, was treated for jaundice, overcame breathing issues, required three head ultrasounds for brain bleeding, had a skin specialist for issues from the stoma bags, had his broviac removed from his chest, required multiple eye exams, worked hard to build up his stamina with eating to remove the NG feeding tube, dealt with acid reflux complications, had many x-rays, an echo, an enema, and probably other treatments that I am sure we have forgotten.
About two weeks before his due date, Dylan had his second surgery (ileostomy takedown) to reconnect his bowel and get rid of the stoma bag. The surgery was successful. Once Dylan was 73 days old, I changed his first poopy diaper! It may seem like a pretty strange event to be excited about, but it's a vital function to be able to stool and we don't take it for granted in our house! After about three weeks of recovery, he was well enough to come home.
Life today: My husband and I feel blessed that he has remained happy and relatively healthy. He has had more doctor appointments than most kids will have in a lifetime, but we are grateful he is thriving. Dylan is is a fun-loving, sweet, and energetic child who is loved to pieces. He is overcoming all the obstacles thrown his way and we are SO PROUD of him. We realize how much our time with Dylan in the NICU affected our lives. We are so thankful for the people we have met along the way and the lessons learned: