Conner has always struggled with feedings. Because of his prematurity he was fed through a Nastogastics tube (NG tube) for months. Bottle feedings were slow, but once he started to gain skills and strength, he would go NPO (nothing by mouth) for one reason or another and his skills would disappear. We managed to avoid a Gastrostomy Tube (G-Tube) in the NICU and he was discharged doing okay (at best) with the bottle.
Once he came home, he began vomiting often. I imagine there are a million reasons why he was vomiting, but one day (about 3 months post NICU) it just stopped and we never spoke of it again out of fear it would return.
Conner’s feeding and appetite improved briefly while he was on a high dose steroid to treat infantile spasms. However, during the weaning process, his feeding plummeted and I struggled to get 400ml in him a day. Somehow he managed to stay hydrated and maintain his weight during this time even with his vomiting episodes returning.
Fast forward to May 2017 when he had his ostomy reversed. After surgery Conner continued to vomit and completely refused bottles. He had an NG tube in and his Gastroenterology (GI) and speech therapy team wanted Conner to have a swallow study. No one excepted bad results, it was more of an item to check off the list in determining what was going on with Conner. I fed Conner during the swallow study and all I remember hearing was “He’s aspirating – stop!” after thin liquid. I’d think to myself, “That’s okay, he will do fine with this next one.” And then I’d hear it again. This continued until we got to pureed bananas. He did okay with those, but he was deemed unsafe to eat from a bottle because of silent aspiration. This meant that small amounts of liquid he was drinking was going into his lungs. It is "silent" because there are little to no signs (i.e. no outward signs of swallowing difficulty) of aspiration.
Conner’s NG tube became a temporary fix (a looming g-tube was to come). He had a bridle put in and that helped keep his NG tube in for a few months. Because Conner had just undergone a very big bowel operation, they wanted him to heal before putting in a g-tube, and frankly, we wanted time to try to improve his feeding in hopes of avoiding a g-tube. I knew a g-tube may not be permanent, but Conner had already undergone so much, did he really need another thing? And if I am being honest, did we really need to add another obstacle to our day and another thing to learn to use?
Conner had another swallow study done before his g-tube surgery and he made some big improvements! He was safe to take most everything by mouth, but the battle became getting him to WANT to eat. Conner developed extreme oral aversions because of everything he went through and his interest in eating was non-existent.
Conner ended up with a g-tube in August of 2017 and I often wish he would have gotten it sooner. It was clear that for one reason or another Conner was not tolerating his high calorie formula feedings. My theory for his constant vomiting was because of high dose steroids. In September of 2017 I switched him to a blenderized diet and there was no looking back from there. It made all the difference in the world in regards to his vomiting and development. Truly a night and day difference. Once we got his vomiting under control, everything else took off. To read more about Conner's blenderized diet, click here.
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