Hand to Hold's Official Blog: Written by Parents for Parents

Why Won’t My NEC Baby Eat?

nec feeding therapy_pb101

Luke, eating a bite of a donut, after 24 months of feeding therapy!

I didn’t know it was possible for someone so small to throw up so much. Indeed, it is possible.

The first year of my son’s life was rocky, to put it mildly. He contracted necrotizing enterocolitis (NEC) on day eight of life and we began a pretty delicate balance between nursing, hospital stays and a distended belly. Nobody really shared with me the challenges he could, and would, face as a result of his NEC diagnosis, emergency surgery and repeated hospital stays.

The First 12 Months

That first twelve months, though, as rocky as they were, ended up being the smoothest sailing he had in his feeding journey. Oh, if I had only known that Mt. Everest was around the corner! We began introducing baby food around seven months and he did fairly well. I decided to make it myself and that proved to not only be a money saver, but a rather enjoyable experience. It took less time than I thought and I was very purposeful about the types of foods I made for him, choosing the ones that were high in nutrients and in calories due to his poor weight gain. Wholesome Baby Food was a fantastic resource I used for trying out new recipes.

Year 2

When we began introducing solid foods, I noticed he was “pocketing” much of the food in his left cheek, not chewing and easily gagging on just about everything we offered. At the time, he was being seen by a state-funded (ECI) occupational therapist twice a month. With each passing day, I found my frustration levels soaring with his inability to make any progress. Then, the lack of substantial weight gain landed us in the gastroenterologist’s office for a consult. At 17 months, we added Boost Kid Essentials 1.5 and Duocal (a calorie additive) to his diet and trotted to the gastro office every two weeks for a weight check. I began to really loathe that drive and that scale. Every ounce gained was like gold.

At 20 months, I finally threw my  hands up in the air. The Boost and Duocal he had been consuming were now coming up at every meal. He was throwing up 2-4 times a day and I was crying double that amount. We scrapped the state-funded therapist, watered our money tree in the backyard, ditched the Duocal (we found out he was allergic) and started private therapy twice a week. While the out-of-pocket expense has been substantial, I would do it again in a heartbeat. I learned that feeding progress is measured in many months, not in weeks or days. Instead of looking forward at how much ground he still has to cover, I look back at just how far he’s come.

Year 3

At age three, he can now tolerate various textures, has stopped pocketing food and can swallow when asked. We still have so far to go, yet I’m hopeful that a cheeseburger and fries may be a possibility by the time he hits kindergarten. A mom can dream, can’t she? Our biggest challenges now are increasing quantity, tolerating more textures, expanding his variety and weaning him off the Boost.

I never dreamed that feeding my child would become such a struggle. So many folks shrugged off his challenges as “being picky” or me not being forceful enough. Now, I know that it was a bona fide sensory issue, directly related to his NICU stay and NEC diagnosis. Sometimes, as moms, we need validation. There is so much guilt associated with not being able to properly nurture your child, isn’t there? For us, the game changer was finding the right therapist and understanding that progress would come in months, not in days.

If you find your preemie struggling with eating, please know that there are resources, helpful advice, trained therapists and other moms who are here to help and listen. Count me among them!

Kathryn Whitaker About Kathryn Whitaker

Kathryn Whitaker (TX) is the mother of six (including two 36-week preemies).  Her fifth child was diagnosed with IUGR (intrauterine growth restriction), born at 3lbs. 9oz. and then developed a severe surgical case of necrotizing enterocolitis (NEC).  He has various medical needs as a direct, and indirect, result.  On her personal blog, Team Whitaker, she writes about what she knows: big families, carpool, kids activities, faith, her beloved Aggies, specialist appointments and sanity checks with her husband.  You can follow her on Twitter, Facebook and Pinterest.

Comments

  1. Our experiences are very similar, and I wish more people did research on micropreemies and long-term feeding issues, whether for sensory reasons, oral aversions, reflux, etc. We’ve been to 5 different GIs and tried several types of feeding therapy. SOS worked best for Daphne. Now, after her kidney transplant, she is finally eating enough to grow, and seeing her chow down is my favorite activity.

    • Melissa, I thought the same thing. Why didn’t some one in the NICU warn me that feeding was likely to be such a struggle? I would’ve intervened months earlier. But, it is what it is. I’m grateful for our rockstar therapist and his amazing progress. Here’s to cheeseburgers (someday!)

  2. We also chose to get rid of our state-funded therapist for feeding. She visited only two times, and I knew she wasn’t going to be able to help my son the way he needed help. We switched to private therapy and found an amazing therapist. He made awesome progress with her. I think it is important to listen to your mom instinct when finding the right therapist. Great post!

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  1. […] Some are sensory related (read about Jack). Some are related to an infection from the NICU (read about Luke). And some are just, well…whew (read about […]

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