Last week, I was asked to share Luke’s “feeding story” for an upcoming newsletter for Hand to Hold. We are learning that every NICU baby’s story is different. Luke’s almost always is! Inspired my fellow NICU mom and friend, Katrina, who posted about Bryce’s struggles, I wanted to do the same.
LUKE’S FEEDING STORY
Because Luke Timothy, our fifth baby, was born at 36-weeks, not many of us expected him to have any feeding issues; we didn’t struggle with the typical preemie challenge of suck-swallow-breath. He did have an IUGR diagnosis (intrauterine growth restriction) and did not grow well in my belly. Luke weighed a dainty 3lbs. 9oz. at birth. A few days into our NICU stay, I was able to get him to latch for a couple of feedings and I was elated. In the meantime, I pumped and he ate my milk via bottle feeds beautifully. My husband and I were feeling confident about his progress and hopeful that our stay would be a short one.
Unfortunately, Luke contracted necrotizing entercolitis (NEC). He stopped breathing, was resuscitated and intubated for an emergency transfer to Dell Children’s Medical Center. He underwent exploratory surgery where he lost 16cm of his small intestine, part of his colon and his appendix. For nearly three weeks he was NPO (no feeds). When we reintroduced milk, his feeds were increased at a painfully slow rate. Although just before discharge, he was nursing ad lib and gaining weight to the tune of about an ounce a day. As the days turned into months, he continued to nurse wonderfully (I didn’t wean him until 17 months!), despite more belly and spine surgeries and more bouts of NPO orders following said surgeries. Each time, he would return to his excellent nursing status.
When it came time for baby food, he lapped that up, eating every new flavor we introduced. When he turned one, we made the transition to table food and began seeing signs of oral aversion, sensory challenges and some marked weight loss. His gastroenterologist prescribed an oral supplement, Boost Kid Essentials, along with a calorie enhancer, Duocal. For many months we flirted with G-tube insertion. While the supplement helped him put on the necessary weight, it was complicated by his tender and immature bowels, illness and more oral aversion. He began throwing up at every meal, at the sight of food and when touching various textures. Mealtime has become a constant, and very wearing, struggle.
Presently, Luke receives 97-99% of his daily caloric intake from the supplement and we fight to get him to eat every cracker, every piece of fruit, every vegetable and every bite of meat. Most days the meals end in tears, for all of us. He is in twice weekly therapy and is making progress, albeit extremely slow. I have learned a whole new level of patience. Our goal is to have him eating table food on a consistent basis without gagging or throwing up in the next six months. For now, we are thankful for his baby steps of progress, our therapists and four siblings who are great models of positive eating behavior!