part one:
it took a lot of trial and error for us...
i will start at the beginning. when milo was in the nicu he was a poor feeder. he would not take enough by bottle and had to get the rest of what he was supposed to be eating via ng tube...he would sometimes vomit up his feedings, and so after an upper gi it was attributed to gerd and he was put on reflux medication.
milo was sent home from the nicu taking about 3/4 of what he was supposed to be receiving for formula per day by mouth, and i guess the hope was that once home he would improve and take enough to keep growing and thriving. unfortunately that was not the case....his eating decreased and weight was lost, and failure to thrive became a reality. (keep in mind that at this point we did not know milo had neurological issues, pvl was diagnosed at 4 months when milo had his first seizures, and up until this point all of his issues had been deemed "preemie issues"). during these few months at home before he went back on ng tube feeds, while we were attempting to feed him 100 percent by mouth (a very horrible, nightmarish time for us, by the way) vomiting was not really an issue, probably because he didn't have enough in his stomach at one time to need to vomit.
when milo was about 8 months old we got to a point where getting him to eat was becoming an impossible task, his seizures were out of control, he was crying non stop, not sleeping, and everything was utter chaos. we decided to take him to the emergency room not really knowing what else to do (at the time we did not have the support system of doctors, nurses, and specialists that we have now), we told them we needed help and a plan to help milo asap and could not wait around for follow up doctors appointments...we insisted that they could not send us home until we had a plan. they admitted milo. i consider that a major turning point for milo.
the er doctor sat down with us and asked us what we would like to get accomplished during our stay at the hospital. i said that he needed to go back on tube feedings, we needed to do something different to gain control over his seizures, and that he seemed to be constantly fussy and uncomfortable and i wanted to know if there was anything that could help. so, he got an ng tube and we were taught how to administer feedings. he was switched from keppra to phenobarbital, and he was given a prescription for baclofen.
once home we had a whole new milo. he was calmer and seemed happier. seizures had decreased some, he seemed more comfortable and we had a way to feed him when he would not eat, also we all got to get more sleep since milo could be fed through the night via tube we no longer needed to get up every 3 hours to feed him.
but a common theme in the life of milo is that we often trade in one medical issue for a different one.
milo was feeling better and getting the amount of food that he was supposed to...but not keeping it all in. ever since they had put him on reflux medication in the nicu we had not had any issues with vomiting, except for the occasional spit up, but that is probably because his stomach never got full enough for it to be an issue, but now it was definitely an issue! he was throwing up at nearly every feeding, about 25 percent of the feeding at first, but he was still getting more then he was prior to the feeding tube so at first he was gaining a lot of weight, and we thought that maybe the ng tube was causing his gag reflex to kick in so we hoped that when he got his g-tube placed it would pass. it didn't.
stay tuned part two of vomiting 101....
