A Whole New World (in his mouth)

It’s Thursday and we’re still here at the hospital. I had hoped that by noon today, I’d be able to type the glorious words “we’re going home soon,” but at this point I’m not sure when I’ll be able to say that.

Matthew is actually doing really well in general. We are still playing around with his medications, trying to keep him comfortable without making him really drugged or irritating his stomach. The craniofacial nurse practitioner (Bay) is coming in a bit to take a look at the inside of his mouth, but we anticipate that things are healing just fine in there.

So the only reason we’re still at the hospital is that Matthew is still on his food strike. I think he might be moving closer to tolerating food. He took about 2 ounces from the bottle this morning before pushing it away. He’s definitely progressing towards being his normal “good-eater” self. But until he can actually eat some food and work it through his system, the doctors are too worried about dehydration to let us go home.

The ironic thing, from my mama perspective, is that I think Matthew would likely be wiling to eat at home. We could sit in our normal chair so he could have a bottle, or I could put him in a high chair and the table and feed him solids like we usually do. But I do yield to the wisdom of the medical staff here, so we’ll just keep trying and hope for the best.

I have to admit that I’m really weary of the hospital right now. I hit a low point this morning feeling discouraged and frustrated. Fortunately my dad is here, so I got in the car and left the hospital for about an hour. It felt so nice to walk around University Village like a normal person—I could pretend, for 45 minutes, that I was just out doing some holiday shopping with the rest of the normal people at the mall. I also went to the grocery store and bought some food that sounded good to me. So now I’m back in the hospital room again, and it was actually nice to get that break.

I do keep thinking that part of what must be happening for my boy is that he’s adjusting to his new mouth. The top back of his mouth was totally open until Tuesday, when he woke up to find it closed. I’m sure it’s sore, and I’m also sure it must feel strange. Everything is different: swallowing, eating, moving his tongue around. And since he can’t communicate verbally with us, it’s not something we can talk about with him.

So I’m guessing he’s probably confused and trying to work with his newfound mouth—and we’re here in this strange space, and he has his hands in those darn mitts too. No wonder the kid doesn’t want to eat.

I’m trying to be patient—to remember that this is a small window of time that will seem like nothing when we look back on it. He will eat eventually. We will go home. In the mean time, I’m mustering up all the patience I have to see this day through.

Keep those eating cheers coming (Alyson, I loved your text last night). We’re doing the same. And let’s hope that soon I can update again and say we get to go home.

And lastly, I was thinking this morning just how much Matthew has changed and grown since he joined our family. Someone a few days ago (I think it was Erik) told me they hardly remembered Matthew with his cleft lip. It’s amazing how time flies, especially when we are busy parenting kids. I thought I’d include a couple photos of the “peanut” Matthew with his sweet cleft lip and his bald head just to remind you AND me of how many challenges we’ve already made it through!

Playing at my aunt's house in July.

Hanging onto the fridge BEFORE he learned to walk.

He's always loved that panda bear!

And here he is last Saturday night--such a big boy--walking, so skilled, and with more hair!