I Hate Waiting

Yesterday was rough. Ken called our dr and we got a follow-up appointment for Mia at 5PM (weigh in to ensure she was still gaining). I am still not allowed to drive so Ken was going to get Kieran at 3 and head home so we could all go.

Right after we got off the phone, I got a call from the MD govt about the newborn screening that's routinely done at the hospital. The woman I spoke with prefaced what she said to me by saying the lab got all new equipment last week so the results are not definitive, but that Mia had some indicators that she could have MCADD. This is a deficiency in the way her body breaks down stores of fat.

So, instead of seeing one doctor yesterday, we saw two. Ken got us an appointment with a genetic specialist at University of Maryland Medical Center who went over what our next steps are. They took some blood and will do two tests - one will be an initial test, probably will not tell us much more than the first one and the second is a DNA test which will be definitive as to whether or not Amelia has MCADD. In the meantime, we simply treat her as if she has the disorder. We won't know anything for certain until August as the DNA test takes about 4 weeks. Have I mentioned that I hate waiting?

So, what does this mean and what the heck is MCADD? It means that, should she have this, she will need to eat every 2-3 hours and cannot go beyond that. Period. As she gets older the timeframe she can go without food will increase. It is not life-threatening if you know you have it. There is no cure, but there are treatments to help and mostly it is simply a matter of ensuring that Mia eats regularly.

So, the other drs appointment went well and Mia is nearly at her birth weight already (they hope to see her gain back to birth weight by 2 weeks, she's more than on her way). At University of MD they weighed her at 6 lbs 2.5 oz and at our drs office they weighed her at 6 lbs 3.6 oz, apparently scales can be sensitive by a few ounces, but either way she's definitely eating well and gaining weight. Her 2 week checkup is next Friday (when I'm able to drive again).

That's it, for now. Please don't freak out all you family out there. Mia is fine, eating well, I still have to wake her up to eat if she doesn't wake on her own every 2-3 hours, but once I do she eats well. I'm happy to say we're 100% on breastmilk so far and I really hope to keep it that way, at least until she's 6 months old. Will keep everyone informed but we probably won't know anything of note until early August.