Better

Mirabel is feeling better.

We we're on the schedule for a chest tube insertion this morning but it's been canceled after looking at this morning's X-rays.
To give you an idea of what she's been dealing with, Mirabel has lost over 3lbs since we got here 36 hours ago, all from the area around her right lung (I know I said "left" in the other post but it turns out it was *my* left).
The plan now is to adjust her medication plan so we can go home (no IVs, obviously).
Thanks for all the prayers and well wishes, as always.

Ugh.

Although I'm really glad it didn't happen on her birthday (or, God forbid her birthday party) that's the only good thing I can say about being admitted to the hospital again.
Mirabel is okay but she does have another pleural effusion (fluid on her left lung), same as last time.

Home again, home again

Mirabel and I just walked in the door and are about to have lunch after nearly a week in the hospital.
Tomorrow I think we'll go back to normal. Mirabel has been bouncing off the walls at Children's for the past few days so we don't see any reason go keep her home from school any longer.

Still in hospital

But doing well. In fact, look at the photo. If you look closely you'll see Mirabel has an IV in her hand, pretty much the only indication she's not at home.
The plan is to come home Tuesday. I'll let you know if anything changes.
Take care.

Back in the Hospital

As some of you know, Mirabel is back in the hospital but she's doing fine.
She's accumulated some fluid in her lungs and they want to keep a close eye on her.
She's in good spirits, especially when she's watching Jake and the Neverland Pirates or playing her new Hello Kitty Uno game.
Take care,
The Stones.

In case you're wondering...

...everything's bus pretty much back to normal. Mirabel started school last week and I (Dave) went back to work today.
Mirabel is still being followed closely, just to make sure she doesn't have any fluid build-up in her chest.
Not that you'd know it. She's just as lively as ever.
Thank you all again for the well wishes, prayers, food and general support over the past few weeks. Cristy and I have really been overwhelmed your generosity.

Another week down

We've been home just over a week and things are mostly back to normal.

We had a couple of check ups last week and on the last one Mirabel had accumulated some fluid in her chest so they changed her medication a little. We'll go back tomorrow for another x-ray to see how that's doing.

Over all her health is good but I think she's still a little emotionally fragile and she tires easily so we've got a little way to go yet.

Take care,
The Stones.

Out first day home.

It's raining, Mommy is at work, Amelia is at school and I (David) have a migraine but it's still better than being in the hospital.
Mirabel is doing great. Frustrated at us for forcing her to be less active and us trying to get her to leave her bandages on but otherwise, pretty much normal.
Before we left the hospital yesterday we spent some time talking to a family from Alaska whose 7yo son had the same surgery as Mirabel. He still has his tubes in and after seeing her go from tubes to no tubes to home he seemed determined to get up and walk laps around the floor like she did. Please send some of your thoughts and prayer his way.
Our experience at Children's was good as always. A great surgical/cardiac team and wonderful nurses, many of which we got to know from having them take care of Mirabel several days in a row.
We'll be updating this site a little less often but we've got some milestones to hit (check ups, return to school, etc.) and if I get and cute photos I'll send them this way.
Thank yo hall for caring so much for our girl(s).
Love,
The Stones

Truncated

That last post had more to it than was posted, here's what's missing:

"Yes. That's our couch. We're home and just under the two weeks we were hoping for.

So if you'd like to visit let us know, it's a much shorter drive than it was yesterday for many of you."

New room

We've been lucky through our hospital stay to only have had to move rooms once and that was from the ICU to the surgical floor. This morning, however, we were told we'd have to move all our stuff. Here's a picture of Mirabel in the new room.

No tubes is good tubes

Mirabel had her last two chest tubes removed this morning. I don't want to make any projections but I thought you'd like to know.

No news ain't bad news

Sorry it's been a little while since I've updated.
Things are going well. After a few days of Mirabel's chest drainage going up, it has gone down today.
Mostly we're just hanging out and waiting. Working out the complex logistics to ensure I'm home with Amelia on Saturday morning so she can watch the Ohio State game.
Today I bribed Mirabel with television to get more laps out of her on our walk and I don't feel bad about it at all.
Cristy and I are beginning to loathe the drive between the hospital and home but otherwise we're doing fine with the help of so e very generous friends.
Take care.

One week

Mirabel had a great weekend. Lots of visitors (a grandma, a grandpa, two aunties, an uncle, friends and teachers from school, friends from the neighborhood and her little sister, of course), walking laps and to the playroom and of course feeling much better.
She still has two tubes but we'll just keep at it and we'll be home in no time.

Up and about

Mirabel got some exercise this morning circling the floor 10 times, high-fiving nurses and yelling the occasional "watch your butt" as we squeezed by doctors.

One down, two to go

So we took out the mediastinal chest tube today - hooray! Mirabel's been a real trouper although she's starting to keep a close eye on anyone who comes in the room wearing scrubs.

We also had a great visit with a school friend (thanks, Mimi!), two walks around the floor and a quick catch-up visit with Aunt Beth and Grandma Arlene. M stayed awake all day, so let's hope that the current "zzzz"s she's catching will last all night long. Come to think of it, sleeping sounds like a great idea .... Night night!

Feeling good

Not only is Mirabel feeling good enough to eat chocolate ice cream, she's feeling good enough to share with her sister!!!

On the floor.

We are no longer in the ICU!

We are on River 6 for anyone that would like to visit.

Just a heads-up; Mirabel has three tubes coming out of her chest with"reddish" liquid draining. If that is something that might upset you let us know before you come and we'll see if we can get her to put a gown on.

More for whatever today is...

As long as they have beds on the surgical floor Mirabel will definitely move out of the ICU today. She seems pretty normal this morning but her tummy isn't quite up to eating yet and she'll still have the tubes (3) draining her chest for the foreseeable future. 

We're still planning on two weeks in the hospital. One of us will probably stay at home tonight with Amelia (special thanks to our friends that have been so good to us and Amelia).

Once we're on "the floor" we'll confirm when she's ready for visitors. 

Wednesday

We all got some sleep last night. I woke up at 7:30a to Mirabel sitting up in bed and chatting with her nurses, looking and sounding completely normal so sure we'll be heading out of the ICU this morning.

Another night in the ICU

So we'll be in the ICU again tonight and honestly that's just fine with us. Mirabel has her own nurse and there's plenty of room for a of us.
M is doing well. Not thrilled by all the tubes coming out of her but she's strong.
More tomorrow.

Good morning

Mirabel is still a little groggy this morning but she's waking up, eating Popsicles and watching cartoons.
The goal for today is to move to a regular room when she wakes up a little more.

Extubated!!!

They just took the tube out and she's breathing just fine. Hopefully she'll have a restful night.
Again, thanks to everyone for all the love.

CICU

Mirabel is in her room in the Cardiac ICU and we are with her now. Still intubated but they try to get her breathing on her own as soon as possible.

Side note: the new CICU at Children's is beautiful with plenty of room for Cristy and I to comfortably stay with her as long as we need to.

Done

Mirabel is out of surgery. Everything went well. She's headed to the CICU and we'll get to see her in half an hour or so. She's still incubated but that will come out later today or in the morning.

Thanks everyone for your thoughts and prayers.

Off Bypass

They'll still be in there a while closing up but she's off the bypass machine.

Update

They've let us know they've started.

Surgery Day

Just a quick update: They've taken Mirabel back to the operating room. It'll probably be 4-5 hours.

Yearly Update

Well, it's been about a year since I've updated this site. It's been a wonderful, challenging year. Mostly what I remember is Amelia screaming at us until we gave her food but there have been lots of other great things.

Mirabel and Amelia dressed up as Ariel and Flounder for Halloween, Mirabel turned 4 and let everyone within earshot know it. We went Christmas Tree shopping with Grandpa who moved back to Seattle from Texas.

This summer has been a whirlwind. Concerts, street fairs, camping, a trip to the emergency room (everyone's fine), tee-ball, outdoor movies with friends and more birthday parties than you can shake a stick at.

Two weeks from today Mirabel is scheduled for the third of the three heart surgeries we've been planning for since before she was born. As always, this site is where we will post updates on how she is doing, both the day of the surgery and the weeks following. We are thankful for your thoughts and prayers.

Obviously this is a serious issue but Mirabel has always been a trooper when it come to surgery so what we are mostly planning for is dealing with a bored 4 3/4 year old who can't get out of bed and a one year old that can't be at the hospital all the time and misses her big sister.

Many of you have offered help during this time and believe me when I say we won't be shy about asking. I'm not sure if the next year will be any less challenging but for now, at least Amelia can scream at us for food and say "please".

Now, keep scrolling below for the cute pictures of the girls.

Dave, Cristy, Mirabel and Amelia.

Fwd:

Fwd:

Fwd:

Cath complete

Mirabel's cath is done. Pathways and stents are open and normal, nothing of consequence from the Electrophysiology study either. She'll wake up soon and we'll sit around for 3 or 4 hours and them we'll be home.
Thanks everyone for the love.

Heart Cath

As you may know Mirabel is having a heart cath today. It will be the last time they can get a good look inside her heart since after her surgery it will be much harder.
I'll send a note when she's done it should be pretty routine but its still going to be several hours.