Sunday, September 27, 2009

I'm not sure which is better

The fact that Mirabel is strong enough to pull herself up, or the look
on my face! (Pay no attention to the messy room in the background).

Saturday, September 26, 2009

Yeah, they're nothing alike

Zero sum

Yay for being home from the hospital! We took one tube out and put another one in, so we're at a zero sum for tubes this week. Mirabel's g-tube placement was smooth sailing (so far, let's hope I'm not jinxing it now). It wasn't easy to put her through another surgery, but we're all much happier without that NG tube taped to her face and irritating her throat. After getting back up to normal feeds last night, we were ready to go this morning. In fact,  we almost staged a coup on the surgical floor. Some of the medical team thought that we'd have to wait to see Cardiology before leaving, but we bundled up and were all prepared to sneak out rather than spend the day twiddling our thumbs. Fortunately, our nurse got ahold of Dr. Noel and we were given the thumbs up to leave. So now the princess is at home, sitting on the couch and playing with her toys.  So glad to be out of there! Children's is great, but I sincerely hope we're not admitted again for a good long time.

Saturday, September 19, 2009

Feeding is going better

Although sometimes Mirabel has different ideas about what to do with
the spoon! We're not up to nutritive feeding yet, so next week we're
going to have them put in a g-tube. Hopefully, removing the irritant
that is the NG tube will help her move even further towards taking
everything orally. Not to mention keeping that beautiful face free and
clear! ;)

Thursday, September 17, 2009

Friday, September 11, 2009

Picking Mirabel up from Grandma's

Even though Mirabel is going to day-care 3 days a week now she's still
spending part of each of those days with Grandma. Grandma picks her up
from day-care and we pick her up from Grandma. Best of both worlds.

Wednesday, September 9, 2009

I waved goodbye...

... But she didn't even look my way! It seems like Mirabel's first day
at day care is off to an auspicious start. She was so engrossed by the
other kiddos that she wasn't even paying attention to me as I walked
out the door. I hope this doesn't leave her with abandonment issues -
I can hear her telling her psychiatrist, "I turned around and she just
wasn't there anymore!"

Wednesday, September 2, 2009

Would somebody please teach this girl some manners!

I guess there's time for that still.

So, yes, we're home. Mirabel is in good spirits. In fact right now
she's tormenting the cat!

We'll keep an eye on her and take her into clinic next week bit
everything seems to be going well.

Thanks for all the well wishes and prayers.

Tuesday, September 1, 2009

Back and better than ever

The princess is back in her room! She's still a little logy from the anesthesia, but is sitting up and playing (and mouthing the bars of her crib). Dr. Jones told us that the Superior Vena Cava and both pulmonary arteries were narrowed. They ballooned the SVC (from 6mm to almost 12!) and the right PA. The left PA is narrowed not because of scar tissue, but because of its placement behind her reconstructed aorta, so the ballooning of that one didn't really take (normal tissue is elastic). We might have to go back in and stent that later but it wasn't something they were prepared to do today.

While they were in there, they decided to go ahead and open up the stent in her aorta a smidge, although it was actually looking pretty good. So overall, things are looking up. Time will tell if the widening of the arteries takes care of the edema and low sats, but they're fairly confident that it will.

We're tossing around the idea of getting a g-tube while we're here .... but if they can't do it by end of week, then we'll likely just head home as soon as she's recovered from this procedure.

I'm back at work tomorrow; David's boss went ahead and let him have the day off, so he gets to spend at least another day in uncomfortable hospital chairs. :D

Thanks to everyone who sent their well wishes - I can't tell you how much they mean to us. Hopefully we'll be able to stay out of the hospital for more than six weeks this time!