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!

Oops hit send too early on that one...
Anyways, she's now back in her room (not in the ICU) and sleeping
quietly (with sats at 78 no less).
A long trying day but true to her style, Mirabel came through it like
the beautiful, tough little girl we all know she is.
If everything goes perfectly we may be home this weekend but all we
really care about is that Mirabel is getting better all the time.
Again, thanks for the thoughts and prayers. We couldn't be more
grateful.

Our girl has serious cred.

Any boys on the playground, talkin all tough cause they have a scar,
will have a world of embarrassment ahead if them if Mirabel is within
earshot.
They've opened up her chest twice (with a third one on the way).
They've put tubes in her chest and tummy and today you can add a scar
under her right arm that would make a seventh grader cringe.
It was a long day today. They changed her surgery time a couple of
times, and when they did take her back it was about four and a half
hours before we could see her. On top of that, at one point we were
told the surgeon wanted to talk to us, then we waited another 45
minutes while he conferred in the hall with two of her other doctors.
Only to find out that they were talking about another patient and
Mirabel was fine and in recovery! Sheesh!

We THOUGHT this had gone too easily.

Mirabel's oxygen saturation hasn't been very stable over the past few
days. Nothing emergent but after her surgery they should be better. We
went to radiology today and her right diaphragm is pushing up on her
right lung due to some nerve injury or damage.
Long story short, she is going to need a minor surgery this week.
They are going to put a couple of stiches in her diaphragm to flatten
it out and allow her lung to inflate completely and lower the
resistance for the incoming blood.
To make matters worse the surgery schedule is pretty full so they are
going to try to "fit us in" this week.
Overall we feel good about her prognosis but time-wise we are in
limbo. Of course we'll update here as we know more.
Take care,
The Stones.

Mirabel had a bath.

Surgery +5

Mirabel is doing really well. We got the word that she won't be going
home today because they just want to be sure her meds are right and
see what (if any) her oxygen needs are.

Today we're going to get a bath and I'll post a pic once we're all
clean and stuff.

Mirabel is trying to reach room service.

Moving day.

Leaving the ICU and going down the hall is hard work but don't let my
sleepiness fool you. When I'm awake I'm all smiles and sitting up!

Hanging with Mommy

Doing well tonight. We assume they'll kick us out of the ICU in the
morning.

Things are looking up!

We've got the chest tubes out, a onesie on and our hair all did up!

And not crying...

With Grandpa here!

Sleeping comfortably.

11:25 pm

Awake and playing a little. Very interested in what all those nurses
are doing. Getting sleepy.

Sleepy day.

A pretty uneventful day (in a good way). Mirabel is doing well. Not
much else to say (in a good way).

Surgery +1

Mirabel is doing well today. Lots of sleep and she still has tubes
coming out of her chest but she's sitting up (with pillows) and only
really only gets upset when we're poking at her.

Basically everything is going well and we're very happy. Thanks for
all the well wishes, keep 'em coming and I'll update again tomorrow.

We're with our little girl.

This will probably be our last update tonight. We are with Mirabel.
She's asleep and doing fine.
Thanks to everyone for their prayers and well wishes (keep them coming!)

Take care,
David, Cristy and Mirabel

All done!!!

Dr. Cohen just came out to talk to us - she's all done and everything
went fine! They're finishing up the clean-up now. We should be able
to see her in the next half hour or so.

Thank you for all the kind wishes, thoughts and prayers- they worked!

Off bypass! They're starting to close up.

Update

They just called to let us know that She's on bypass and everything is going fine.

Surgery is starting

We just got word that they have offficially begun (and that everything's alright).

It's begun

Well, kind of. Mirabel has been taken back by the anesthesiologist. It will probably be a couple of hours before they actually begin the surgery.

We'll update when we can.

Best,

 C, D and M

Wednesday update

Hello all.

Mirabel's surgery is scheduled for tomorrow morning. (we check in at 7:30am). She is a strong little girl and we are sure she'll do just fine, but please send your thoughts and prayers her way too.

We'll put an update here as soon as we know anything.

Love to all,

David, Cristy and Mirabel

Fun weekend

We went to the street fair and the beach and the park and we saw pirates and Ruby and Seth and Shannon and Julie and Grandma!!!

I don't know what she's doing

... But she sure is intent on doing it! And refuses to let go of those
toes while it's going on.

Yeah, I got the hiccups ...so what?

Well, little miss got to enjoy the day hanging out with Daddy again.
We found out this morning that her surgery has been rescheduled for
next Thursday. Please keep us in your thoughts and prayers - and keep
your fingers crossed that things go as planned next time!

Best laid plans...

We knew it could happen and it did. Mirabel's surgery has been postponed. We don't know yet when it will happen but we'll post when we hear something.

As frustrating as it is, we know they are only delaying it because someone needs the spot more and they feel Mirabel is doing well enough to wait.

Keep the prayers and well wishes coming and we'll be in touch soon.

just kickin it

Hospital Day is done.

Everything looks good for surgery on Thursday.

Big week!

Hello everyone,

As you know, this is a big week for Mirabel. Tomorrow we'll be at the hospital all day for tests to prepare her and her doctors for her surgery on Thursday. We are very optimistic about it but it's still scary so please keep us in your thoughts and prayers. We'll try to update the blog as soon as we know how the surgery goes, but so far we aren't even sure what time of day she's going in.

We've been really enjoying our happy girl and we haven't been posting much, so here are some photos since I posted last.