We had a double header doctor appointment with our pediatrician on Monday. We doubled up Calvin's 2 year check up with Henry's 9 month check up. Neither of them gained any weight since their last check ups (Henry since beginning of March, Calvin since January). Their height growth was minimal. This is a problem. We are having Calvin's growth hormone checked again to see if that could be causing his plateau. It always seems to me like he's eating enough... he goes through picky phases, but it sounds like that is normal. Guess it's back to sneaking coconut oil into his meals. We'll see if his growth hormone level is still normal.
For Henry, it's a little complicated. He enjoys eating, but he's only able to eat small amounts at each meal. He is spitting up or throwing up almost everyday and I'm about at my wits' end over it. It could be his reflux, so, as I've been instructed by our GI doctor and our OT, I am working with his Prevacid dosage to see if it will help. Sometimes it happens mid-meal and it looks like the food was just too thick and came right back up. His OT said it's possible that his hypotonia is causing slowness in his esophagus and making it hard for him to digest thicker purees. So I also have to be really careful about the consistency of his food. He has a swallow study next week in which they will use an x-ray video to see how his mouth/throat/esophagus are functioning while he eats and drinks.
He still drinks formula, and had been drinking 24 cal/oz formula (normal formula is about 20 cal/oz) since December. It helped for a while, but now it looks like it's not enough because he still just isn't taking in the volume that he needs. I swear I'm feeding him as much as I feel like I can. But I am constantly worried that if I overfeed him he will vomit. And if he's refusing to drink I can't force him. We met with a nutritionist about a month ago and she encouraged me to add oils to his baby food. So I've been fattening up his purees with olive oil, coconut oil, and butter. I was hopeful that it would have made a difference, but per Monday's check up it hasn't helped so far. So his pediatrician told me to up the formula to 27cal/oz.
I have been through this over and over again with both boys. The baby is not gaining weight. So we dive into trial and error with ways of feeding and amounts to feed and what to feed. And it feels as though it all falls on me, the exhausted mama, feeling like a failure because - wasn't it my job to make these babies grow? Isn't that kind of my only job? And clearly I'm not doing it very well.
Our pediatrician told me not to be so hard on myself. She said we don't know what their limitations are because of their genetic syndromes. She is actually the first doctor to immediately consider their genetics before their diets when it came to not gaining weight. All our other doctors have immediately responded with more formula, more food, more fats, more calories. And of course that is the way to make a kid gain weight. But our doctor responded by suggesting a growth hormone check and a swallow study. And then later she said to go ahead and up the calories of the formula. But she wanted to first try to find out what they are even capable of in terms of growing and eating. And it was nice for once to not have the doctor's response feel like they are saying, You're not doing enough. Do more. Instead she seemed to be saying, You are trying and it's not working. We'll find out why not.
Deep breath and another laundry load of pukey pajamas and pee pee pants.