So. MCADD.
We're still trying to figure this out. We have been super blessed for a number of reasons. First, of all the metabolic disorders she could have, MCADD is the mildest. Day to day, it's easy. Second, she has made it through a number of illnesses without a real crisis. Even this last weekend, she threw up and I was so close to taking her in. I had already called her geneticist, I was packing my bag and I was waiting to see if she could keep anything else down. And she did. So I unpacked my bag, kept feeding her and we were fine. Matt and I feel supremely blessed every single day that she goes without a crisis.
But there are trickier parts too. I've mentioned before how Lydia is a fussy baby. She's still fussy. Some days (like today), I can't even put her down. At all. She did better this afternoon, but this morning she screamed when I put her down to dress, brush my hair and teeth and go the bathroom. Screamed. At the top of her lungs. She's 5 1/2 months old, and I guess I thought it would have gotten easier by now.
We're not sure how much of it is due to hunger. See, with MCADD, since Lydia cannot change the calories she
ingests into calories she
uses, she's hungry a lot. It'd be like everyone around you having milkshakes for each meal and you don't get a full cup. You don't even get a half cup. You're trying to make it on 1/3 of a cup of milkshake. So you're a lot hungrier than everyone else and you have to eat more frequently. When other babies get the full calorie amount from formula, Lydia's getting a small percentage. This is especially true right now because normal formula uses coconut oil as its main source of fat. Coconut oil is a medium chain triglyceride. So she's barely getting
anything.
This probably explains why she's dropped weight percentiles. We still don't have a geneticist here (
don't get me started on the state of Georgia) but her pediatrician is concerned about her dropping weight percentiles. Because it means she's not getting enough calories, which could mean she's more likely to have a crisis.
So what do we do? Well, she's old enough that we're trying to introduce solids. But she pretty much hates everything we give her except Gerber's arrowroot cookies. Which are processed (gasp!) and have in them High Fructose Corn Syrup (double gasp!) As much as I don't like that, what am I supposed to do when my baby NEEDS more calories than she can take in by drinking formula?
We've also been adding rice cereal to her bottles. This has actually helped a lot. It's made her go from eating every hour and screaming in between to eating every two to three hours. Sometimes even FOUR at night (sounds like heaven to me!). I'm hoping to get her used to the taste enough that I can start giving it to her with a spoon.
In the meantime, every day is hit and miss. I feed her 4 oz bottles every 90 minutes or so with rice cereal and formula. I give her HFCS processed cookies to num on and we're working on other things. She's now only waking up 3 times at night instead of 4 (but inevitably, one of my other children wakes me up that fourth time). She's a terrible day sleeper, but I can't do much on the sleep training front since she's going to have to wake up in the middle of the night for a long time.
If you've made it this far through the ramblings of a very sleep deprived mother, congratulations. This is a tricky thing and it's awfully hard to concentrate when I'm so tired.