breathing easy

By tomorrow morning, Alicia will have been off the ventilator for one week! She received steroids this week to help reduce the inflamation in her lungs and it's worked well. So far the only side effect that we've seen her experience from it is, sigh, a stall in weight gain. I'm not sure why, but the steroid keeps babes from gaining. Shoot. ("Shoot" is what Toby is saying, by the way, when you hear him say, "shet." Honest.) The steroids are expected to wear off on Wednesday and the doctors expect some amount of backsliding then. Oh I'm so not looking forward to that. She's had a few steady days now and it feels so good. Other than that, she's still eating well. She weighs 1060 grams, maybe 2lbs 5oz? She's had her third head ultrasound and there was no bleeding whatsoever! She'll only have one more now, just before discharge. Some time this week she'll begin to have regular eye exams.

Now that she's off her ventilator we can hear her cry. It's a tiny faint sound. She doesn't seem to cry very often. Mostly she sleeps. And then she sleeps some more.

Alicia is now one month old and 31 weeks gestation. In her room there are 6 babes. Two of them are twins whose mama was with me at Abbott. They are also 31 weeks gestation but they were delivered just last week. They are at least three pounds each. Oh my goodness. You wouldn't believe the difference between those babes and Alicia. They have almost white, normal skin. They are huge (when you are accustomed to looking at Alicia)! They have less breathing trouble. They will most definitely go home sooner. And yes, of course I'm jealous.

Alicia is doing much better than her mother.

My overwhelming feeling is stress. There is definite sadness. But most pungently, there is stress. This stress is like a high water table. It appears to be well managed. The tiniest extra thing is just too much for me. Bad traffic. A meal that doesn't turn out right. Toby missing his nap. Being tired. Schedule changes. A late babysitter. Less time than I had wanted with Alicia. Not being able to hold Alicia when I had expected to. Not as much milk being pumped. I fully expect the stress to overtake me. I'm really not sure what I think is going to happen if the stress wins. But I sit and feel the doom of it.

There are days with good news. But they are usually followed by bad news in the same measure. On Christmas Eve Alicia weighed 980g. The next day, 1005g. Followed by 980g. And then the fourth day once again we had 1005g. That's three days to gain 25grams. Just less than one ounce. Everything with her is like this. Good news is no longer good news. There is no good news. Good news abuses me. It slaps me in the face just as I begin to smile. It almost always turns around for the worse. The doctors know this and tell parents to try to look at a week at a time, not just a day. But our whole lives are focused on this. How can we stand back for a different view? Instead I sink down, resigned, into the bad news and try to lash out at good news like an immune disorder.

I don't cry much. I should and I just don't. It's as if I think that not crying is something I'm capable of and since I'm capable of so little, at least I can do this one thing. Not cry.

In Alicia's world there are monitors. The oxygen saturation monitor tends to go off most frequently for most of the babies. It's not a bad thing for it to go off. A nurse just needs to come watch and maybe change a setting. It happens all the time and the nurses always, always say, "It's okay." and turn it off. When I want to cry I feel like I automatically hit the silence alarm button and say, "It's okay." So at times I finally make myself let the alarm sound. I say it's not okay. But I have to constantly push myself to keep crying. And the days I feel the best are the days when I got myself to cry well the day before.

I cried yesterday. Josh and I went to see Narnia. Not a terribly sad movie when you know the ending. I couldn't get into the movie. I wasn't consciously thinking about Alicia, but I can't remove myself from the emotion of it. Not enough to even get into a movie. The realization of how completely this monster has me in its grip helped me to cry. And loosened the grip just a little. But we're not half done.

Among our big stressers lately has been money. We didn't want to tell you this for fear that you would try to fix this problem for us. The premium that we pay for our health care now is a few dollars more than our mortgage. And then there's the out-of-pocket expenses. We were poised to sink so fast it was laughable. Josh talked to Medica, and perhaps the out-of-pocket maximums won't be as bad as we thought. That fixed a piece of this. Then all of a sudden, Josh got a raise. It wasn't time for one yet. And it was huge. And we'll be okay. Financially at least. Just like that. Thus, we are all breathing easier.

January. I think I'll start spending more time at the hospital each week now. That leaves me with less time in life to do all the other things, but I think I need to start doing more other things too. I think you can start to call me now, but I'd still prefer not to get calls about Alicia. I need to start talking about the rest of life. Your life. Life outside of my house. I need to leave the house and do things. Things other than going to the hospital. Call me and tell me what you did and what you got for Christmas. I'm also getting closer to being ready to let people come visit Alicia in the hospital. Feel free to email to ask to come and we'll invite you as we feel ready. No children are allowed under 14. I'll ask that you not touch her and that you only come when no one in your house is sick.

She's beautiful and feisty. It'll be fun to start sharing her. Tell me things like, "She's so big!"