Worry

I've never had an excuse to worry about Toby. Right from the beginning, he was strong and healthy. In labor I pushed for what...57 hours or something? Okay, two. And his stats were just fine for all but one contraction. He came out looking like a Gerber baby. Ate like he might not get another chance ever. He sat up at five months. A bad cold for Toby might last a whole day and a half. He knows half the letters of the alphabet. He has the cutest little "Okay, Mama." ever.

Alicia we've been worried about since 14 weeks gestation. And when I say "worried", I might really say, "wondering if she'll survive". Last night Alicia was in her crib and Josh was getting ready to stop responding to my talking and fake sleep, when I noticed Alicia was breathing faster than I'd like her to. Hm. I got out of bed (it's completely dark in our room) and felt Alicia in her crib. Oh, she was just sleeping face down on her mattress. How comfy! I flipped her onto her back, but she woke up. Well, at least if she's awake, she's breathing. Sigh.

We took Alicia off Prevacid on Sept 1. We had kept her on it previous to that because when she refluxed it sounded like she was aspirating (breathing in) some of the reflux a few times a day, which could lead to pneumonia. But she doesn't really do that anymore. But now she's had lots of boogers the last week and a half and it just occured to me that it might be the reflux going up to her nose, not boogers. She always had that going on when she was in the hospital. It shouldn't sound like a big deal. But what I don't know is, how many "boogers" are a big deal to a babe with Alicia's lungs?

These are a mere two examples of how being Alicia's mom is just different. Oy! Another difference is doctor appointments. I hate them. I do actually like all of Alicia's doctors quite a bit. But I'd rather do other things with my time, thanks. We managed to get through August with no appointments at all. But September has had three and October will have four.

So what do those doctors have to say these days? Oh, mostly good stuff. Mostly. Sept 7 she weighed 16lbs 2oz. She was 25.25 inches long. I think that's 50th percentile for weight and 25th for length for a six month old! (Remember the days when she was 3rd percentile?) October 4th she'll be seven months adjusted, ten months actual. She still has asthma for now. Who knows about the future? I had a chance to talk to the doctor further about the CT scans done in July. As far as craniosynostosis goes, she doesn't have it and they don't need to keep watching for it. There's just the tiniest bit of space between the plates, but that's all that's needed. He said she just has dolichocephaly. I think that's the big word for "preemie head." Ah, but the lung scan. Looking at that scan he decided that Alicia doesn't actually have a cyst on her lungs. Instead she has bronchiolitis obliterans. This is more damage than we had originally thought. She has chronic lung disease, which is damage that won't grow in size as her lungs grow, so it will become inconsequential. But this new variety of damage, well, it might grow with her. It might not. He'll just keep watching it. I asked him for the worst case scenario. Are we talking about more oxygen dependency? No gym class? No. She'll be pretty normal. But when her friends decide to climb Mount Everest one weekend, she'll have to choose air pressure over peer pressure and stay home. No mountain climbing and no scuba diving. She can't change atmospheres. Her lungs won't be able to adapt to the change in pressure.

Since Alicia was born we've had this mental list of possible lifelong issues in our heads. Blindness, asthma, glasses, ADD, learning disabilites, speech delays, . . . we've just had to wait to see what issues develop. This is our first knowledge of a life long limitation for Alicia. It felt heavy driving home from the doctor. It's not the biggest deal. We've really gotten off so easy in so many ways. But it still makes me sad that Alicia has a permanent "can't" in her life.

Alicia also has a mass in her cheek. She's had it since she was in the hospital, but I always forgot to tell anyone. And it's the kind of thing only a mother notices. It's recently begun to look like a bruise. So I finally remembered to tell one of her doctors and for my reward Alicia has been granted an additional doctor's appointment. It's with Dr. James Sidman, apparently a well-known doctor in the Twin Cities. He's a pediatric ENT. I think he's just going to measure it and keep an eye on it. This mass is supposedly only a hemangioma, the same red spots she has all over her torso. This shouldn't be a big deal.

But it's still one more thing. There are always more things. I have this idea that I should become immune to "more things." I am now the mother of a high needs babe. This stuff shouldn't bother me. It should bother those other run-of-the-mill mothers, but I'm not in that group anymore.

I hate to disappoint anyone, but we're all run-of-the-mill mothers. All these little things still bother me. There is no superhero status that carries us up and away from the heaviness of our children's suffering, no matter how slight or inconsequential it is.

Ah, the nurse just called back and said to put Alicia back on Prevacid. Okay.

Developmentally, Alicia is still being followed by Early Childhood Special Education (the school district). So far they still believe that Alicia is on track. She has been making progress sitting up. A few times a day now she'll sit completely on her own for at least 10 seconds. At the beginning of the month, she needed to prop herself up on her hands, but now she sits up straight. When she's on her belly she still pushes herself up very strongly. She'll pivot herself to see where the action (read: Toby) is. She doesn't get up on all fours yet. Even as of last week she wouldn't put any weight on her legs at all. We were advised against allowing her to do that early on because of micropreemie muscle tone issues. But now that she's almost sitting, we've been putting her in an exersaucer and she's starting to hold a little weight on those legs.

So she's fun stuff. And she's oh so happy! I haven't told her about the mountain climbing yet.