Feeding Woes

Because of his complicated GI history, Andrew has always been a bit underweight. When Andrew came home from the NICU back in October, he was five months old and weighed about 8 pounds. Two months later as a seven month old, he weighed 14 pounds. Four and a half months later as an eleven month old, he still weighed 14 pounds. It’s interesting to note that during this time, NONE of the many doctors that Andrew saw were concerned with his lack of weight gain, except, of course, his GI doctor! After an appointment with her, we decided to increase Andrew’s feeding therapies from twice a month to twice a week, double his food intake, and to add a teaspoon of olive oil to each meal as well. We were told to come back in 4-6 weeks.

From that day on and three weeks later, Andrew was eating like a champ. A champ, I tell you. Sure, he still doesn’t have the whole open-mouth-chew-food-move-food-back-to-throat-for-swallowing coordination down that well. But with ultra-pureed foods, he was able to get it down, somehow. And, sure, each feeding took anywhere from forty-five minutes to an hour… but he got it down, darn it! And he went from 14 pounds to 15.14 pounds during that period.

And then Andrew started spitting up a meal every so often. And then a meal every day. And then pretty much every meal, every day. And then, occasionally, even his bottles. We took him back to the GI doctor and was told it was either allergies or reflux. It’s not likely the former, so definitely the latter. So now Andrew is back on reflux medicine, Prevacid, once a day for a month to see if it will help. It’s been about a week now and his vomiting has increased considerably. We’ll see what happens. The GI doctor told us to call back in three weeks as it apparently takes time for the reflux medicine to kick in.

Meanwhile, Andrew continues to vomit every meal. And because eating by mouth has become such a stressful experience for him, he is starting to develop psychological signs of aversion as well. For example, if we even TOUCH his lips with that first spoonful of food, a powerful gag reflex is immediately triggered. Not always, though. Sometimes. Andrew also does other reflux-y things like hiccups, wet burps, a gurgling tummy, and if his stomach is especially active–pain.

As parents, this is clearly very distressing. We thought we had put Andrew’s days of malnourishment and feeding intolerances behind us. But here we are again. Fortunately, aside from all of the gagging and vomiting, Andrew is temperamentally still a pretty happy little guy. We were worried that when we weaned him off of Vigabitrin (seizure drug #3) that he would lose his happier and calmer self. However, he seems to be tolerating the Depakote (seizure drug #4) pretty well. When Andrew is readmitted into the EMU in 2-3 weeks or so, we’ll find out if it is working.

Andrew's first time swinging! He loved it! His head is very strategically placed to provide some head control. We are looking into buying something to provide him with that extra support so he can swing his little heart out.

Lounging around with his BFF at the park.

Loving life.

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5 Responses to Feeding Woes

  1. Alison says:

    I feel your pain!! Ashlea was a champion vomiter. The only thing that ‘fixed’ her was surgery – but she can and still does gag a lot.

    I hope the reflux meds help. In my experience they never decreased the actual vomiting, just made it less painful for the child.

  2. earlybirdies says:

    Hi, Alison! Yes, the whole thing totally stinks. And I totally agree–the reflux meds will only help alleviate the pain. I don’t actually expect the meds to help Andrew at all–not when he is spitting up every meal and even bottles, too. What kind of surgery did your daughter have? The nissen fundoplication or whatever? Argh, another surgery is the last thing I want for Andrew but it seems as if we’re heading in that direction…

    By the way, I’ve been following all the kidney stuff. Crazy! I’m so glad you’re a match and Ashlea has a shot at a health kidney!

  3. Jennifer says:

    Owen was on Prevacid for many years and it helped tremendously – actually did stop the mucous-y vomiting and painful heartburn. And the g-tube saved us from a life of misery, especially since Owen was on so many meds and needed lots of fluids. We looked into fundoplication as recently as a year or so before he passed away – but he already had so many problems with gas and venting we didn’t pursue it. (plus didn’t want another surgery)

    Hope you get good guidance. And trust your instincts!

  4. Your twins are adorable. I will be following your blog. Hayden had severe reflux/vomiting as well. Medications didnt help. He had the Nissen done and it was one of the best things we did, however, I’m thankful that he has a g tube to decompress his stomach, since the Nissen made him unable to burp. His risk of aspiration of formula has been eliminated, which was a significant mortality risk for him. I hope you find a solution and he starts to feel better. Best wishes, Angelique Reagan

  5. Ugh. I ****hate**** it when they do the “premie two-step”. Two steps forward, one, two, or even three steps back. It’s like: “Finally, some progress!!” Then: “Oh, nope.”
    I’m sorry for this rough patch. I hope you get some relief soon. I have no advice on reflux, though I think a mild case of it is preventing Malachi from eating to his full potential, too. Have you tried acupressure or anything? Just an idea.

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