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12/12/2004

And miles to go before I sleep

Charlie's two weeks old.

Friday the doctor said Charlie might be moved as soon as Monday to a hospital closer to home. He'd spent more than 24 hours off CPAP without incident, and seemed to be going strong — the main measure of stability for what's called a back-transfer. It sounded too good to be true, and it was. Friday night as we held him, we could see that Charlie's breathing was more labored than it should have been. His blood oxygen level kept dropping as we held him, and we knew that didn't bode well. Saturday morning, he was back on CPAP. It was a disappointment but not a surprise. "He's not sick," the nurse hurried to reassure us, "he's just tired."

That's how I feel, too.

For the first few days after Charlie's birth, I was sick. I was also weak and weepy, but the presence of my mother kept me from spending much time thinking about our situation. Then I was running on adrenaline and joy — the baby was doing so well, and I was still so surprised to hear myself saying on the phone to the nurses, "Hi, it's Julie, Charlie's mother," that I felt a jolt of energy every time I thought of him.

But now I'm slowing down. I knew we could expect setbacks as Charlie gets older, bigger, and stronger. This is the first thing anyone who's had a child in the NICU will tell you — two steps forward, one step back is the name of the game. (I am sorry to dash your hopes when I tell you that, no, the name of the game is not slamball. Fewer trampolines, more IQ points, significantly lower blood alcohol level.)

I'm tired. I have a hard time staying awake in the afternoons, a harder time getting up in the mornings. I'm only really starting to understand the long way we have to go, and it is daunting. The enormity of it hit me yesterday when we approached Charlie's isolette and I heard the telltale bubbling of his CPAP rig, the one I'd been so giddily thrilled not to see at his bedside Friday morning. I have earned a quiet little breakdown, but can't afford one until we're all safe at home. Six weeks from now? Eight? Who knows? Just like everything else, that will take place on a "wait and see" basis.

We have a long way to go, and I am already tired.

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