My daughter, my husband, my mother, my God

No, she's not off of oxygen or anything. But the other day when she was getting her feeding tube changed, we thought it might be nice to slip her canula out for a few seconds and get a picture of her face unfettered.

So I ask my husband, "What good is a high IQ if your wipes dry out?" I love to make fun of his IQ, cuz it just doesn't do everything for him. I had bought a different brand of wipes one night. The first package he had trouble opening- he didn't notice the "open here" on the tab that conveniently lifts up. The second package he made use of that tab, since I had pointed it out, and took the whole thing off, leaving nothing to seal it back up with. The word resealable seems to be lost on him. I milk these screw-ups for everything.

And I'm pretty good at milking, by the way. Alicia has been having trouble with the bottle and Josh wondered if it was simply because I was not the one giving it to her. Milking up Alicia is an art that I've been practicing for some great number of weeks now. You need to take her off, and on, and off--it's a dance. Each nurse is a new partner. Yesterday I really wanted to take the whole thing into my own hands, but I haven't yet. This morning an occupational therapist came and gave Alicia a bottle, then wrote up some ideas to help the nurses give my babe the bottle better. We'll see. The OT got her to take most of it.

The nurses and doctors have long been telling us that Alicia is just immature. Like she's been coloring on the walls or something.

So this is yet longer. She is allowed to try to take a bottle twice a day. Once she can do that consistently, she'll get to try a third. She'll probably need four or five a day to get enough calories to gain weight. Her stomach just isn't big enough to hold all the milk she'd need to gain weight, so her bottles are my milk with fortifier and protein powder added.

We did get to take our CPR and monitor training today. We asked to have it this week so that my mother could join us. She gets to leave for Jamaica tomorrow. After sitting through an hour of what to do if her granddaughter should stop breathing or choke, she threatened not to come back. We think she was joking.

So, we're still looking at another week in the hospital at least. Once she's able to take all of her food and medicine by mouth, she'll have to continue to do it for a few days.

This sucks. I told her NNP that it feels like we've been running a marathon (or a few marathons) and we can finally see the finish line, but now we've run into this five foot grass and we're falling on our noses.

I asked Josh in bed one night--When do you think Alicia is coming home?
Josh- I don't know.
Me- You don't? (I want him to say Feb 25th.)
Josh- Do you?
Me- Yeah.
J- When?
M- Feb 25th.
J- How do you know that? Did God tell you?
M- (like she's been caught) No. I told him. (laughing a bit)
J- Can you do that?
M- (looking up at the ceiling, more caught) Sure.

I should really write more about me and God in all of this, but to continue this bit of the story . . . I've really wanted God to be glorified in this. I wish that there was anything in all of this that was terrifically unexpected and unexplainable so that surely he could get glory. I'm driving and driving and talking to God and thinking about him. It dawned on me at one point that it was just possible that God might want me to at least gain some patience. It was one of those thoughts that you try not to have again because you really don't want it to be true and it's just so likely.

And here we are, Feb 24th. I wish to end that little story right here.

But I'll have you know that I still love my God. He's got some guts making me wait.