She also said that he's underweight for his height. He's 10lbs 13oz and 24" long. According to her chart, for the average child with 46 chromosomes, he should be 13lbs. She seemed to focus more on that than anything else. She wants us to give him breastmilk in a bottle 2-3 times a day and put 1/2 a scoop of dry powdered formula in for extra calories. Then she suggested we use nutramigen as our formula because we have a strong familial allergy to penicillin.
Now... if you've never had the pleasure (insert eye roll here) of "meeting" nutramigen, consider yourself as lucky as can be. This stuff smells like ass. Nope.... scratch that. It smells like industrial bug spray. And the cost of this stuff is insane. I think I saw a sign once that read "rollback...... 1 arm & 1 leg" for it. Amazon is selling a case of 6 cans of dry formula (8oz each) for $130. Insanity.
She also suggested we add rice cereal to his bottles to thicken them. Thus helping things to stay in his stomach and prevent the reflux.
I have several problems with both of these things. I don't have a problem adding formula to Sean's bottles if he NEEDS it. I'm not convinced he needs it. Especially since it wasn't related to the gerd. I'm not worried about his weight. We're not big people and Meredith was tiny too. She was 11lbs & some change at 4 mos old. Not to mention that I have always read that breastfed babies tend to be a little smaller. He had/has a heart condition. And..... most importantly he has down syndrome. People with down syndrome tend to be smaller statured than most 46 chromosome folks.
Maybe she thinks we all have the salaries of doctors? Maybe she thinks we can all afford to pay up the ying yang for formula when there's no real reason. I mean if Sean had shown that he had allergies, then fine. We do what we have to do. But really... if he's allergic to lactose or milk proteins or whatever will it really matter what kind of formula he's getting if it's all still in my milk? So why do I have to sign over my 1st born as payment for formula he doesn't need?
Studies have shown that adding rice cereal to babies' bottles increases the chances that as the child grows older, he will be overweight. People with down syndrome already have a higher chance of being overweight. Do I need to increase his chances? Won't being on medication help keep his gerd under control?
And furthermore, won't regulating his medications and keeping his gerd at bay help him to put on weight? Don't babies self regulate? Don't they know when they need to grow? Isn't that the whole idea behind a growth spurt? Babies grow at their own rates. Why do I need to modify the way Sean's body grows?
We decided not to make any decisions until we spoke to Dr. D, the pediatrician, about it. On Thursday we did just that. He said that yes Sean is underweight, but not severely. He also said being that Sean is already getting at least 1 bottle a day, it wouldn't hurt to add a 2nd and add the formula powder. Increasing his calories wouldn't harm him in any way since the 1/2 scoop isn't adding that many calories (50 cal each 1/2 scoop). If after a couple of weeks we saw no improvement or still felt it was unnecessary, then we should stop. Nutramigen wouldn't hurt him, but it wasn't necessary. He said that if we felt Sean was ready, we could give him cereal with a spoon and he saw no reason to wait. He suggested we start with cereal 2x a day to maximize the gerd benefit. Tomorrow Sean's feeding therapist is coming and we'll ask her if she thinks he's ready for cereal. And then the nurses gave us a case & a half of the nutramigen. Not to shabby.
He got his RSV vaccine and polio and we go back on the Friday after Thanksgiving for 2 more shots. I don't like to give more than 2 vaccines at any pedi visit. I just think it's unnecessary. So we go back more often, but at least if Sean has a reaction we don't have to sift through a rolodex full of vaccines to figure out which one did it.
We go back to Dr. F in 6 weeks and Dr. D in 4 unless of course we have issues or questions.
In terms of Sean's development, Dr. D and his nurse said that we should think about it like a baby who was 4 weeks premature. That's how delayed Sean is. While it's a little easier to understand, it doesn't make me feel any better.
We had a meeting to modify Sean's IFSP with early intervention. He'll now be getting physical & occupational therapies. We're just waiting for the city stamp of approval so we can start. I'll be calling the woman from quality control to see if we can get things moving sooner. She's such a nice woman & I'm so lucky to have been put in contact with her.
Today we ventured to the mall to see Santa. We wanted to know if he spoke to Hanukkah Harry. Ya know so he could pass on the message for us. Turns out he does speak to Hanukkah Harry. Lucky us. Meredith would have no part of sitting on his lap. NONE. I was so pissed. I don't care if I get a crying picture. I just want a damn picture. Nope. I'm going to bring her back when she's fully rested. At least I have a picture of 1 of them right?
Meredith did ride the train. She enjoyed that & told me all about it. I love that she can whole conversations. She tells me what she's learned at school and what she's done throughout the day. It doesn't matter that I was there with her. She tells me her stories like I wasn't there. I love it!
And of course some random pictures of my little man.
E was on Nutramigen from 4 weeks old until 13 months old. yeah. Ebay was my friend! We would buy it by the case that way. Crazy Crazy price. You are so lucky they gave you a case-and-a-half. thats amazing :o)
ReplyDeleteHey, thanks for visiting my blog during our OHS, so glad that's behind us.
ReplyDeleteJust a couple of thoughts for you: is that Nutramigen made from cow's milk? Do you drink cow's milk? The reason I ask is the nutritionist who has been helping us, and our OT, both say that formula (made from cows milk) will increase reflux. So, what I fortified with was simply LIGHT olive oil - per the nutritionist. Now, an OB nurse said she had heard of using oils, but of course everyone else was like "what, that doesn't sound right". Well, I said screw everyone else because it made sense to me...I'm just throwing this out there for you to consider since you are going through this. Feel free to ask me more if you'd like. And, maybe your diet could be looked at too. The nutritionist said to reduce/eliminate sweets, increase protein, no caffeine, and no milk/dairy. I think it makes sense, though it's tough.