Noah met with his dietitian yesterday, he has lost almost 2 lbs since last January. He was a hefty 32lbs 14oz, now he is down to 31 even. Height was 38.5." Which is still 50% for weight, but we don't want him losing weight, even with room to spare. We were ok with him holding steady because he was a chunk, but now he has lost. I am very obnoxious with counting the calories in his blend and have a food scale that tells me how many calories are in certain foods to make sure I am right and not just guesing and then possibly under guessing how many calories are in his blends.
We have transitioned from full J feeds to small blended diet boluses and hooked up at night, to larger BD boluses. Our calorie goal was 1,400 a day, which isn't cutting it anymore. 1,400 is a crazy number for a 2 year old. On a BD we have always had to go higher than on just formula alone. That's a ton of calories though. Granted Noah is super active and always going, it just seems at that many calories he should be gaining something. We also have to factor in the he was doing 2-3 day food trails & his calories were slashed in half, obviously that doesn't help in weight gain. I remember at one point, Noah was about 8 months old he was gaining fast on a ridiculously low number of calories per day, but he wasn't active at all and he was only on Neocate & Duocal. Now it's just the opposite.
Noah still has a lot of trouble with volume. He can do ok with 6oz boluses, but anything after that he just vomits up. Plus his digestions is a bit wonky at times. Some days he does great, others, the food just sits and sits. He also can't eat every 3 hrs, his food won't digest fast enough to do this. So,then we can't get in the right number of calories or he has to be hooked up to his formula and pump.
Noah was also cleared for dairy, which was something he was allergic/intolerance to at one point. We have added some back in slowly and he is back to being really mucousy. I am talking vomiting up his entire feed, even though he has a nissen, or he just vomits all day, multiple times, 5-8 times. Sucks. So, we are going to cut that back out and see if that improves. When he is congested he has a really tough time handling feeds. He starts coughing which almost always leads to vomit. He is not sick, he is happy, playing, so we are going to nix milk and see if it helps any.
Our new goal is to go to 1,600 calories a day. That's more than mine! We are going to be doing half BD and the other half on his pump, bc like I said, volume is our enemy and I can't make his blend the right amount of calories and volume at this point. If we add more oil, which is an easy way to get calories up without adding much volume, it's too fatty and he has a hard time digesting that. Our other goal is to slowly up his BD boluses and hopefully wean off the pump. This can take ages though. 5-10mls, not even half an oz, can be j-u-s-t too much ....its crazy. At one point I would love to be able to push 8 oz and not think twice....though that seems like a long time down the road.
No comments:
Post a Comment