Today has been kind of a rough day. Dressing change went okay, but Jonah hasn't been eating well at all. Yesterday and today he's decided that he's only going to eat if he's asleep. That means he'll eat well once overnight, and then before his morning nap, before his afternoon nap, and before bed (but he typically doesn't eat more at these feedings). When we do try to feed him at other times (meaning he's not so tired he doesn't have the energy to fight), he starts coughing (although he coughs all the time anyway) and gagging. And he finally just ate well for the first time today, and then threw most of it up. So at 9:30 we were downstairs doing a partial dressing change - both arms and his chest piece. And now I'm sitting on the nursery floor while Matt tries to feed him again and get him to sleep.
I'm lucky if I can get him to take 19 ounces in a day. The nutritionist says he should be eating 28-30. He's stopped eating solids completely... just cries any time I try it - no matter what the food.
I'm feeling low today - not defeated, but weak. I hadn't been out of the house since Sunday, so Matt kept Jonah this evening, and I ran some errands. Most of the time that helps, but all I could focus on tonight were the perfect little families with their perfect little kids. And then I walked through the baby clothing section, hoping to find something Jonah could wear, but of course none of it will work - buttons, snaps, seams, zippers, sleeves. And it just makes me so mad. I get so jealous.
It's always worse when he's not eating.
I called the after-hours line, and I may take him to the doctor tomorrow depending on how he is tonight and in the morning. To be honest, unless there's a whole lot they can do for him, I don't really want them poking around in his mouth. That just creates the tongue blisters, and that's a whole other problem.
So please pray for Jonah (again). Every time I feel like things are getting better with the eating, it feels like two steps forward, 50 steps back. Instead of feeling like we're making our way out of the woods - heading in the right direction - I just feel like we're walking around in circles, slamming into trees.
With this disorder, there doesn't seem to be much of a forward progression. It's pretty much just keeping your head above the water.