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.

Cardiology Appointment and Surgery Plans

Today was Mirabel's bi-yearly cardiology check up. We went into this appointment with more anxiety than we have in a while because Mirabel is getting big enough for her third (of three) major surgeries.
Mirabel is doing great, her oxygen levels haven't dropped since last time we were there, her energy levels and color are both good.
All that comes down to no surgery this year, no holidays in the hospital! We'll go back in 6 months are see where we are.

A little behind...

We don't get around to posting here much lately, I blame Facebook and how easy it is to just send pictures there to share with family and friends...
...That said, I'd like to introduce you to the newest member of the family -- Amelia Ann Stone, born 06/21/12.

She's a beautiful little girl who just started daycare yesterday. She looks a lot like Mirabel but I get the feeling she's going to have a completely different temperment (although that may just be because she cries every time I hold her).

Her big sister (who tells everyone she meets that she's a Big Sister) loves "her baby" so much that we often have to tell her to stop leaning on the baby and kissing her constantly.

We're having a pretty good summer,

and Amelia is starting to wake up and check out her world.

Mirabel may have her third heart surgery this fall but we'll definitely send an update when that happens.
Ta-ta for now, oh and BTW, did you see Stacy Lihn's speech at the DNC last night? If not you should because I think she speaks for all heart families on the importance of the Affordable Care Act.


Here's a link if that embed didn't work: http://youtu.be/UEyc7stLsxk

Take care,
The Stones

Catching Up

Um, okay, so last August is ... well, almost a year past. So ... we're a
little behind! But here's a quick synopsis:

- September: Mirabel started at Providence Mt. St. Vincent daycare, which
has been fabulous! We miss our old center, but it's great to have her in a
little more structure, with more kids her age.

- November: Right before she turned 3, she decided it was time to start
going on the potty. Woo hoo!

- Second Christmas in our new house. Dave limited himself to an 8 foot tree
... maybe we'll go for 12 next year.

- Spring 2012: Mirabel started sleeping in a big girl bed. Which means we
don't always get to sleep as long as we like, but she loves being able to
climb in and out.

- This Wednesday: Her next cardiology appointment, where we find out if the
Fontan is on our roadmap for this year. Her sats have been doing well, but
her stamina is obviously lower. It would be great to help her get to a
place where she can run and play longer, but it might get complicated
because -

- June: She's going to be a big sister!! We're expecting another girl in
about 7 weeks (eek!). So far, everything looks great. Which means I'm
panicking, cause what do I know about a healthy newborn?? :D

I promise pics of our big girl (and maybe the little one, too) for the next
post.

A little surgery

We haven't been keeping up the blog for a while but I'm sure some of you recognize that as a good thing.
Mirabel has been doing so well we just haven't had anything to talk about.
I also blame Facebook. That's where all the cute pics have been going lately.
Anyways, M had surgery this morning to close the hole in her belly. She did so well they aren't even keeping us overnight.
I had hoped that this surgery wouldn't be necessary but now that it's over it's great to be done with this chapter. She hasn't eaten thru her G-tube in almost a year and now no more leaking stomach acid. All in time to start at her new school in a few weeks.
If you want more frequent updates you'll have to friend us on Facebook but you'll also get the added benefit of cute pictures of Mirabel and the newest member of our family, Santa Bunny.

Family Portrait

We're way overdue on a much longer blog post, but we just had to post this pic (courtesy of the lovely Debora Spencer).

Contrary to the look on her face, Mirabel is doing VERY well and is generally a happy little girl. But life's tough at 2 1/2, you know?

Merry Christmas to all!!!

Singing

"Go Buckeyes!"

Lying about her age already.

London Bridge