Feeding & Formula with Hypotonia

From the start, feeding Davie was a struggle; a nightmare on some days. Initially, he was gavage fed in the NICU. He gagged and he choked with constant desats. Even medicines would cause choking. On day three in the NICU, I was finally allowed to nurse him; and surprisingly, he did amazing....then we had his tongue tie clipped. Back to square one. We didn't realize he had hypotonia at the time so the tongue tie actually prevented his tongue from falling back into his throat. So back to choking and gagging. Breastmilk, formula...all of it had him gagging and struggling. He worked so hard to eat that he was constantly losing energy, and by one month of age he was diagnosed with failure to thrive. There were days I thought my baby was going to just wither away even though I was trying every possible thing. As a mother who had extensively breastfed three of her previous children, I felt defeated when I realized he couldn't nurse or affectively drink the milk I pumped. We went through about 20 different types of formula once my milk dried up. Davie didn't have full-blown allergies, but he was sensitive to almost everything. Milk constipated him so I started using partially broken-down milk formulas. We also tried soy, organic, goat's milk, you name it. I won't bore you with the details of my weeks worth of scientific formulas, but in due time, I settled on a mixture of two formulas with added gluten-free infant oatmeal. The winners for Dave were Similac Alimentum liquid mixed with Gerber Good Start Gentle powder. The Alimentum is broken-down casein protein and the Good Start is partially broken-down whey protein. I mixed them at a 20:80 ratio. Then I added 1/4 tsp of infant oatmeal. Just that tiny bit of oatmeal was enough to keep him from gagging and choking while trying to swallow. It completely alleviated the need for him to need Prilosec which was a huge win in my book. Davie's constant desats and gagging episodes had us all thinking he could be aspirating. So around two months of age (while we were staying in PICU for SVT episodes,) he had a swallow study performed. We found that he was not aspirating, thank goodness! However, his milk was going down then coming all the way back up to the back of his throat/nasal cavity area. It was a constant, vicious cycle. Davie had silent reflux. We talked about using milk thickeners, but the tiny bit of oatmeal ended up doing the trick for him to keep his milk down. It almost seemed like liquid that was too thin was a problem. This also meant that any medicine he took would cause choking and desats. This was an issue being that he took propanalol for SVT. In due time, I learned to add his medicine to his milk bottles so prevent any desats. It isn't the best way to ensure medicine gets taken, but when your child is stressing 24/7 you just do what works. By the time Davie was nine months we were able to start simplifying his formula to only the Good Start Gentle with no oatmeal added. This was a huge deal for him, but we did find that his swallowing/drinking issues directly spilled over into feeding issues. Around the same time we started trying to give purees, and we learned quickly that if it was too thin...he choked. Too thick...he gagged. His initial food diet consisted of pureed apples and sweet potatoes. As long as his purees were soft and wet we were able to add in different types of fruits, vegetables, oatmeals and even some protein. I was overly excited to start feeding Davie eggs because I knew they were a great food item for nutrients. I started with yolk only. The first few times I gave it to him went great for about 20 minutes. Then he threw it all up. Over time I noticed eggs would make him vomit. So I quit giving them for a month. I started again with a very small amount and he kept them down, but after a few days of eating eggs he started breaking out all over his skin. He had tiny little bumps all over his legs and arms. Within days of stopping eggs again, the bumps went away. So next we tried pureed chicken. Almost the same exact thing happened. Then we tried going to whole milk instead of formula...it was a no go. I had a baby approaching his first birthday who had a diet of formula and fruit puree only. This was so disappointing to me in many ways. I wanted my baby to eat real, healthy food like my other children. I wanted him to eat meat, eggs, milk and even cake! It took me a long time to realize that, developmentally, Davie just wasn't ready for all those foods. I had to correlate what he was physically doing with what he was ingesting. Davie couldn't even sit up at one year of age. Technically, babies who start eating purees are starting to sit up at six months. His hypotonia had everything on hold. His physical, mental and neurological development were all in sync...much slower than others yet still on the same page. Once I changed that mindset, my expectations of Davie started to change. I still have high hopes for Davie and his eating, but we are going on four years of racking our brains with how to get good food in him. Actually, he eats pretty good considering where he started. Here is what he eats on an almost daily basis: Morning: Gluten-Free Oatmeal mixed with Peanut Butter and Honey...and magnesium Lunch: Avocado Puree mixed with Applesauce...and strawberry flavored fish oil (Yum!) Snack: Fruit Puree Squeeze pouch and Almond Milk Pudding Squeeze pouch Dinner: Sweet Potato Puree mixed with Fruit Puree....and Isopure or protein powder Davie takes added supplements throughout the day that I add to his meals for GI and Neurology health. I have another separate blog post on those and how they help him.