It's been a year since the dreaded phone call from the geneticist. It's been a hard year. Most of the time, our issues are related to the medical issues that Micah faces, not the underlying diagnosis of Down syndrome. But there are definitely days that I'm sad about that too.
I'll be spending some time on the phone with GI again tomorrow. Yesterday morning, Micah started vomiting. He would probably still be vomiting if it weren't for the drainage bag we are using on his stomach now, per a conversation with GI yesterday morning. We're supposed to replace everything that comes out of his stomach with an equal amount of pedialite. We didn't do that yesterday (we didn't have any pedialite and we wanted to give the kid a break, though he truly needs some nourishment) and Micah slept peacefully for TWELVE HOURS last night (before going to the hospital, we were struggling with him being uncomfortable and not sleeping longer than an hour and a half at a time... very tiring for all of us). His poor little body is more comfortable without food going in. And if the volume of milk he's getting is too much for his little body to handle, then how is pedialite going to improve that? Yes, it can help keep him hydrated, but ultimately the pedialite or the formula is going to go up to his stomach and get drained off.
Maybe it will just take a while for his system to be able to function efficiently enough to "consume" the calories he needs to grow. My guess is that we will also need to increase his formula to 27-calorie concentration. He's been on 24-calorie since mid-February. Regular infant formula (and breast milk) is 20-calorie.
I just want him to be better. And he's definitely better than he was when we admitted him to the hospital two weeks ago. But his poor gut...
We're so thankful for our little guy. His smiles just melt your heart. He's awfully sweet and that makes it hurt even more when he hurts.
Suspense by Rachel Dylan
1 week ago