Luke's Journey

Luke was in the NICU for just 17 days, but it felt like an eternity to us. In that time, we met with more doctors than I've ever seen in my life...cardiologist, several neonatologists, geneticist, pediatric surgeon. I can't even tell you how many times we heard this statement, "Children with Down syndrome typically have..." We were so tired of hearing that and hearing about all of the issues they could potentially have. Almost every problem Luke had (feeding, breathing, etc.) was blamed on the fact that he had Down syndrome. My friend Sharon also brought me a book that was highly recommended by many, but I couldn't bring myself to open it for the first 6 weeks because the entire first chapter is all about the many health issues children with Down syndrome have a higher incidence of, everything from issues with their eyes and ears to leukemia.

By about his 3rd day in the NICU we were told that Luke had not passed his meconium which led them to believe he might have Hirschsprung's disease, basically where part of the colon does not work. So several tests and a couple of biopsies later, that diagnosis was confirmed. This meant that Luke would need colon surgery as soon as possible. The surgeon felt that once he got to around 6 pounds, he would feel comfortable doing the surgery. We knew we were in good hands because Dr. Liu was one of the doctors who actually developed the rectal pull-through surgery that Luke would have.

The time while he was in the NICU is such a blur to me. We were feeling pulled in so many directions and had such a great sense of guilt no matter where we were. We wanted to be home with Jackson and Olivia, but also hated not to be at the hospital with Luke, even though the nurses there were fantastic. Each day someone would drive me to go see him at some point (since I still couldn't drive after the c-section) and then Pete and I would go back usually around 10pm once we got Jackson and Olivia to bed. Thank God for our families who were here with us and could stay with them at night. There were times when we'd be sitting with Luke and literally falling asleep because we were so exhausted, both physically and emotionally. Every night when we'd leave the hospital we would stop by the AM/PM for a fountain beverage and snack to get us through the middle of the night feedings with Olivia. It was the same very long-haired woman each time at the register, and I'm sure she wondered why we were there every night around 12 or 1am. I think we both secretly enjoyed that time because it was our only chance to be by ourselves and talk, cry, or vent together.
Luke was having issues with feeding and breathing, and he had to be completely off the oxygen and feeding tube before he could be released. I'll never forget the day we were able to finally feed him ourselves with milk I had pumped and had been storing in the NICU just waiting for that moment. He finally pulled through and was released 2 days after my birthday. Best birthday gift ever!