Please be in prayer for Jonah. He's not eating well, and acts like he's in a lot of pain when he does eat. He'll take an ounce or so, and then he just starts crying. It takes at least an hour to get him to eat two ounces and half the time he won't even take that much. And when he does have a good feed, he spits up half of it. Because he's not eating well, he's also not sleeping well overnight (waking up every hour), so I'm getting frustrated and really irritable. I feel overwhelmed and exhausted.
He has new blisters all over his belly all of a sudden and a big blister on his lip.
His dressing change last night could be classified as a disaster, and we had to quit half-way through to try to calm him down. It didn't really work, so he basically cried through the whole thing. He's still on morphine and ativan, but last night, you would have thought he wasn't on anything. We didn't even get to do his right arm because he was so upset. He's getting a rash because he's hot, moist and dirty, and the only way we can bathe him is by bulb syringe, one limb at a time. He usually freaks out when we do it, so we can't really clean him well, and definitely can't get in all the nooks and crannies like we need to. I can't even give my baby a real bath.
I generally just feel pretty ticked off these last couple days at the unfairness of it all, and am having myself a big ol' pity party. I HATE feeling like that, and I HATE that Jonah is in pain and I can't take it away. I HATE that our "family photo" was taken at a cemetery yesterday, and I HATE that my baby can't even eat without hurting. I HATE that his face and head are getting blisters a lot now (since this was a pretty durable place previously), and I HATE that he's tired and hungry. I'm afraid that if he doesn't start eating better soon, we'll end up back in the hospital. Please pray that he will begin eating better and that we will figure out what we can do to help him. I'm going to give it until tomorrow and then may have to take him back to the doctor. I'm not sure what they can do, though, until we see the ENT, and that appointment is not until Thursday.
I'm completely frustrated, and if I really admit it, angry. And as much as I hate feeling it, I'm angry at God a lot of the time. I just don't get it. Please pray for me that I will regain perspective, and that once again I'll feel like God and I are on the same side... that I'll feel his arms of comfort and peace around me... that I'll draw near to him again - He hasn't gone anywhere, but He's feeling pretty far away.