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The Horror of Infant Reflux- The Struggle is Real!

I delivered two very premature babies with absolutely nothing “wrong” with them (I hate that word but physically and mentally, they were healthy). They both were required to stay in the hospital until they could take their feeds by bottle and could breathe completely on their own without nurse intervention. We did not struggle with a brain issue or a heart concern or a need for extensive surgery. We just had two very tiny babies who needed time in the hospital because they were not inside me anymore. I don’t want to downplay their situation because it was really tough and we watched our babies endure things that parents shouldn’t have to… like your child being intubated and a pic line being put through to your one week old’s heart. I do completely understand how amazing it is though that our health struggles were minimal at Mass General and am grateful for how rare and wonderful that is.

That being said, preemies are preemies for years after their birth. This was very hard for me to understand until I started living it outside the hospital. One of the hardest obstacles we had to work though and continue to work through is infant reflux.

Cole is our preemie who never really believes he was a preemie. He did better in utero, was born 1 lb. and 9 ounces larger than his twin sister. He almost always behaved like he didn’t understand he was born twelve weeks premature. Cole was initially diagnosed by our pediatrician with infant reflux shortly after coming home from the hospital, as we increased his formula feeds to higher volumes. He would spit up frequently during and after eating and was visibly uncomfortable. We tried a variety of remedies including having him sit up for thirty minutes after eating to promote good digestion, put a slight angle in his crib so he could sleep more comfortably after feeding and utilized his rock n play more often as a replacement from lying flat. None of these things truly helped. Finally, after being thrown up on countless times and listening to a screaming baby after every spit up, we took him to the pediatrician. He was diagnosed immediately and sent home on Zantac. For Cole, that totally did the trick and he’s been on it ever since. He was much more comfortable eating, loved his bottle and grew from a 3 pound 10-ounce preemie to a 24-pound baby in a year! Again, this kid does not believe he’s a preemie.

For Grace, the battle was much worse and we screwed things up for her more ways than I can count. She’s a baby and can’t tell us what’s wrong so it is always a guessing game until we figure out the solution that works for her. Initially, we didn’t even think Grace had reflux. We struggled to feed her, she was always gassy and she would cry a lot while eating but she did not spit up frequently at all. On occasion, she would projectile vomit but she never spit up in the constant way Cole did. She ate much smaller amounts than Cole and each bottle was a battle. We were not sure what was wrong with her but after a visit to the pediatrician, she suggested we see a Pediatric Gastroenterologist at MGH.

During our first visit, our GI doctor asked a variety of questions, trying to get to the bottom of why Grace wouldn’t really eat and why she was vomiting. He asked us what we were feeding her, how often, what position we fed her in, how long she had between feedings, how she slept, did she make faces during her feedings, etc. Come to find out after his questioning, she was diagnosed with something called silent reflux! The vomit would come up her throat but not as far as the mouth but the intense burning is the same. It was so unnoticeable before the diagnosis but now, as we fed her, I noticed her expressions. You could see if she was forcing something down and how uncomfortable it was for her. The doctor put her on Zantac and also ordered a few more tests including a swallow study (barium is put in her bottle and while drinking it, they do an x-ray to see her digestive tract). They also scheduled an ultrasound. Both tests were done fairly quickly and came back completely normal thankfully.

We thought we were in the clear now! The medicine worked for Cole and we thought it would work the same for Grace… alleviate the reflux symptoms since there was nothing physically wrong so she would be more motivated to eat now. Boy, were we so wrong. The medicine did not work at all and we returned to the GI doctor two weeks later with minimal weight gain, a very uncomfortable baby and a full hamper of clothes smelling like vomit.

At this point, we stepped up the medication to a mix of zantac and omeprazole (more commonly known as Prilosec). Again, not much improvement and very little weight gain overall. Finally, as we documented her feeding patterns because we wrote down everything this kid ingested, we figured out that Grace did better with the bottles that she had taken the omeprazole immediately before and not so well on the bottles where we were not able to give her the prescription immediately before. At this point, the doctor could spread out her daily dosage so she was receiving doses of omeprazole between three of her bottles per day plus Zantac before her bedtime bottle (this was at about five months corrected). Keeping this schedule and making sure Grace received her omeprazole at least fifteen minutes before her bottle, helped alleviate Grace’s reflux symptoms and increased her comfort with the bottle.

That being said, it took months for Grace to adjust her mindset and fear of the bottle. We tried other brands to see if she had more of an aversion to our Dr. Brown’s bottles. She didn’t and fought each brand without discrimination. We tried sitting her up to eat. No help. We tried increasing her feeds so she would have to take less bottles per day (and could have her medication before each one). We still struggled. Eventually, when she was old enough, we introduced oatmeal to her for weight gain purposes and to try to mix more formula into her diet. She loved it, thank God! When she wouldn’t finish a bottle, we’d toss the rest of it in a bowl and add some oatmeal and typically, she’d eat that right up. It wasn’t ideal and it took a lot of time but it was wonderful each time she’d finish the bowl and essentially, her bottle! We began to see some great progress with her behavior and her weight gain!

Reflux was awful for Grace but as parents, we struggled too. It’s awful to watch your baby hate to eat, especially when she’s so tiny and is not growing properly. It’s stressful and exhausting. I cried a lot simply because I couldn’t do something essential for my baby and it took us months to come to a solution that left her feeling healthy and happy. It was also hard for Cole because we focused so much time and energy on feeding Grace the bottle that he honestly got much less attention and focus. It was hard for us as a family because we rarely left the house in fear that Grace would vomit all over herself, us, the car seat or wherever we were headed. We felt trapped in a sense because of her severe reflux because it was hard to feed her anywhere else. She was so easily distracted and disliked eating so much that it was nearly impossible to do outside of the house.

It changed our lives getting her reflux handled properly. I didn’t dream I’d have my premature infants on medications for their first year of life or that I’d be one of those moms that rarely ventured out with my infants but it was far more important for us that Grace and Cole both be comfortable, eating well and staying healthy. As preemie parents, we didn’t graduate from that title when we left the hospital as I had once hoped but rather, we just entered a world where most people don’t understand it.

* Grace also struggled with delayed gastric emptying- I’ll get to that in an upcoming blog!


What Helped Us with Reflux:

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