Monday, July 4, 2011

a week of the same

It's been a whole week since my last update. You'd think that'd mean I had something to report, but no...only that Leaf is now in actual Pampers preemie sized diapers (with the smell that will always remind me of the NICU), and still growing (on her own little curve, below 10th percentile, when she was 10th percentile at birth, but then fell behind in trying to regain her birth weight).

We're all frustrated - even the docs. It sounds like there will be much more discussion this week (after several weeks of her being a major topic at their conferences), because the options are limited - try diuretics again and keep a closer watch on her electrolytes, put her back on the vent to try to open up the little air sacs, go in and ligate her PDA, do nothing and wait and see....all have their risks.

For all that they keep reminding me that she's not Acorn, they're now starting to see the ways that she's so much like him - so obviously his sister. And unfortunately, the things they see are not the nose they both share, or their amazingly long's that Acorn was so so hard to get off the vent, and then even worse to get off CPAP, and Leaf is just as hard.

Tomorrow it's off to the surgeon to get Acorn's g-tube looked at, and to discuss (and hopefully complete) removal. Hopefully I'll get up early enough to fill his wading pool so he can go out and splash to his heart's content when he gets up from his nap.

Tonight he's cranky and skittish. Not entirely sure what happened with his nurse today while we were gone. I hate this part of having nurses.

As for me, I'm hanging in here. Some days are better than others (shoot, some hours are better than others). Pumping is going better than expected, which helps, but it's still time consuming and draining. In my copious spare time (hahahahaha) I'm working on a little project, which I'll be saying more about in the weeks to come.

And now, off to get back to writing on that project, and listening to the fireworks in the distance, and hoping that Acorn actually goes to sleep finally.

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