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).

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.

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! ;)

We now return...

...to Morning Mohawk.

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.

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!"

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.

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!

Here we go again ...

So, we're back in the saddle again. Saddle meaning "the hospital", of
course. During her cardio appointment on Friday, Mirabel's doctor
became concerned about her puffiness and some fluid he saw in her
lungs. Saturday she looked even puffier (despite going up on her
diuretic) and Sunday morning she was so swollen she could barely open
her right eye (I'll spare you that picture). We measures her sats, and
when they averaged 63 we knew it was time for her introductory trip to
the Children's ER.

Sure enough, after they got her stabilized with some Os and IV Lasix,
they admitted her to the floor to figure out what's going on. They
too a chest x-Ray and discovered that her lung looked better, but her
face remained puffy.

So this morning they did an echo, and are now concerned that there is
some narrowing at the site of her Glenn, where the superior vena cava
is connected to the pulmonary arteries. She is now scheduled for a
cath tomorrow morning so they can get a closer look at the site, and
also get some data on her heart function. If necessary, they may
balloon or stent the arteries to increase the flow.

She's now down to .1 L flow of O2 and fighting a nap she desperately
needs ... But otherwise feeling much better. We will update as possible.

Punk rock girl

Mirabel has a new trick.

As if she wasn't cute enough already.

Good mornin'

Smile ...

... Or yawn?

Hidden Picture Puzzle

I know it's hard to believe, but look closely at the picture below, there is a baby hidden somewhere in there.

Daddy has been waiting for over a year for Mirabel to fit in that onesie. We bought it at a sale because it was long sleeved and knit for Mirabel to have something to wear in the winter. Since then David has learned to check sizes before buying clothes.

Believe it or not we bought the onesie, then later found the socks and hat and even later found the matching blanket. (I - David - am such a dork).

Mirabel has actually had a pretty big week. She started to eat some cereal!!! Not much, but it's something. Grandma even bought her a new highchair so she can sit at the table like the rest of the family. Now the rest of the family has to get in the habit of eating at the table. It's going to be a long road before we can get rid of the NG tube, and who knows, maybe we'll opt for the G tube before it's over but we're moving along either way. If I didn't mention it before, she's been off oxygen completely since we came home from hospital. Well, not completely, she still uses oxygen, but she's getting it from the air like the rest of us, she's just doesn't need extra oxygen pumped into her nose.

Also, Mirabel is such a big girl she's sleeping in her own room now, for naps and overnight. She'll be off to college before we know it. She went to a party last night and charmed the socks off of everyone in sight. Basically she's just doing her baby thing. In a few weeks Mommy and Daddy can pick her up under her arms again and everything will be back to normal.

You've been very patient, now here are the pictures you've been waiting for.

Preview of coming attractions.

Today was picture day but instead of posting pics, we're going to a party. Here's a little something to tide you over.

New photo

I've received a message thru my mother that someone thinks I need to
post pictures more often. Here you go.

Inspecting Mirabel's 6th tooth...

...I realize that it's actually her 8th tooth. We didn't see that she
now has 4 up and 4 down. We thought she was tough just having surgery
but add cutting 3 teeth and the same time? That's just crazy!

Beatin' the heat

We spent a good part of the day either in the air conditioned car or
in nice cool stores. The hottest part of the day we played and napped
in our AC'd bedroom. Now she's hanging out with us on the couch which
us nice and cool as long as the fan is on.
Hope you're cool too!

Home and thanks

Well, we're home after a week and a half and two surgeries. Mirabel is
almost back to normal and we couldn't be happier.
We want to thank you all, we have felt very loved and supported and
that has really helped us focus on our little girl and now we can look
forward to having a great summer (once it cools off that is).

Gimme an H!

Gimme an O! Gimme an M! Gimme an E! What's that spell? Home! Yayyyy!!!!!

Still the most dramatic sleeper!

Dinner for three

We are enjoying an outdoor table at La Cafeteria with our favorite
girl. They've mentioned the words "home" and "tomorrow" in the same
sentence ... It still might not happen, but keep your fingers crossed.

Saturday

It's a pretty good morning for Miss Mirabel. In about 10 minutes time
she got three tubes out if her body. Including the oxygen!!!
She's happy and playing and sitting up. We even plan to leave to room
today and go for a walk.

Look who's up!

It's been a sleepy day but the Little Miss is now up and cuddling with
her daddy. She's been weaned to .3 liters of O2 and is keeping her
sats up in the high 70s - yay! Chest tube should come out tomorrow,
which is one day hopefully closer to going home. She is such a
trooper. We are so proud of her!