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.