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.
bless your heart, it most definitely is NOT you, ok! you are great and love conquers all! you love those boys and you're super vigilant, super careful, super dedicated, and you're up against these kind of sneaky, unfair-fighting genetic anomalies! sheesh! thanks for sharing, know that we love you and pray for all of you!
ReplyDeleteThanks dad. Love you too!
DeletePoor Diana, you are doing GREAT! Don't let them make you feel like you are doing anything less than wonderful. Even kids who don't have all of the medical issues you are dealing with grow at their own speed and on their own schedule. Three of my kids didn't even make it on to the bottom of those stupid growth charts until they hit puberty. The other son was always off the top of the chart. They are now 6'1", 5'7", 6'5" and 6'3". And all are at perfectly normal weights and all are healthy. From the time J was 18 months until he hit 4 years he gained NO weight at all and one grew a little bit taller--really, that's a long time! We hit all of the specialists. Everyone was sure he wasn't getting enough to eat except our Family Physician and eventually the Endocrinologist when he had an x-ray taken of J's hand to measure his bone age and he had a bone age of 18 months even though he was over three years old chronologically. The endocrinologist said that he was simply on a slower schedule than most and would continue growing after most boys his age had stopped and would eventually reach a normal adult size. It would just take longer. He was right. When he was an infant and a toddler, though, J would puke every day, several times a day usually. In his case it eventually turned out that when he would get upset about anything, ANYTHING, it would trigger a very short lived but very intense asthma episode that triggered his gag reflex and up it all came. We didn't realize it until he did it in the doctor's office while the doc was listening to his chest. Also, there were many food textures that would trigger it on its way down and smells would trigger it too. During that time it seemed like my life would be lived at the washing machine and cleaning it up everywhere else too. And I felt as though someday they would take my children away from me for "failure to thrive" neglect even though I was doing everything I possibly could to live up to THEIR expectations of how my children grew. In retrospect, I wish I would have realized that they were doing FINE, they are just my rebel kids doing it all THEIR way. They come by that trait honestly. Diana, my wish for you is that you can find a way to relax, don't worry, they will grow up to be just fine. They will take their time and do it their way but you and they will learn to adapt as necessary to their medical challenges and what matters most is that you enjoy your time as a young family. And, eventually, the pukey pajamas, just like diapers and bottles, will be a thing of the past. YOU ARE DOING A GREAT JOB!!!
ReplyDeleteThank you so much for this. It's nice to hear from a parent who's been there :) That's really interesting about the bone age thing. I've never heard of bone age!
DeleteI never really found much about bone age when I tried to do a little follow-up research of my own on it but this endocrinologist used an x-ray of his hand and wrist to do measurements of certain growth plates. He used those measurements to calculate "bone age". Back then we didn't have the internet to Google stuff like this though, I just used the library and my own strange collection of child/medical reference books. Don't sweat it too much though, Diana, they will grow out of this stage and you'll be remembering the adorable cheeks and the giggles and the vomiting will fade away. I'll be thinking of you!
ReplyDeleteThanks again :)
DeleteHey D- I'm sorry I'm only hearing about this news now. I've been kind of out of touch lately. Maybe I can check in this weekend.
ReplyDeleteThanks Ben.
DeleteYou are such a strong, resilient, creative and got-all-your-stuff-together mama. you are a real inspiration for me. go get another load of those crusty clothes
ReplyDeleteI appreciate the vote of confidence. It definitely doesn't feel like it! But thanks for saying so.
Deleteerrr, typo on the last sentence... meant to say... you got that next load of never-ending crusty clothes ( just conquered three)
ReplyDelete:)
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