Wednesday, January 28, 2009

Tuesday, January 27, 2009

Home sweet home

So after an extra day or so spent in the hospital making sure she
could tolerate her food, we brought the little princess home
yesterday! She was a little grumpy last night but seems to be in much
better spirits today. Or maybe I'm saying that cause she's been
napping most of the morning! Either way, we're glad to have her home.


Saturday, January 24, 2009

Swinging with the fishes

After being extubated yesterday, the little princess is now back on
the Floor, enjoying her own private room.

She's doing pretty darn well - I'm waiting to speak to the
cardiologist, but the most current plan is to get her back up to her
full feeding amount (they had to stop them for the procedure and are
stepping her up slowly) and then discharge her.

In the meantime, we're just chilling here while Daddy hangs out on the
couch with his bad back.


Thursday, January 22, 2009

Anesthetized, Intubated and Dialated

Mirabel is out of the cath lab and doing well. She is still intubated and will spend the night in the ICU for observation, probably coming home in a couple of days.
The narrowing of her aorta was pretty severe and they ended up placing a stent to make sure it stays open. Basically what they did was triple the size of the opening, from 3mm to almost 9mm. This should last her a while. Some time in the future they can expand it further, maybe up to 14mm, but eventually it will have to come out since this stent wont expand to adult size. (maybe they can just bundle that with her 3rd surgery).
Overall she tolerated the procedure well, no arrhythmias but they want to keep her intubated for a few hours until her body adjusts to the new blood flow. (Basically her body competes with her lungs for her blood and they wont to make sure one isn't beating up the other).
The bright side of all this is that Cristy and I have been able to eat in the hospital cafeteria twice today!


Hello all.
Just a quick note to let you know that Mirabel is back in the hospital.
First of all, she's doing okay, nothing emergent. Since the first of the week we noticed that she hasn't been feeling as well, she was coughing and sneezing and choking a little more than usual.
At her normal clinic visit yesterday they noticed that she is working a little harder to breathe and diagnosed a narrowing of her aorta which limits her cardiac output. They admitted her for observation and today she is going to have a heart cath and they are going to use a balloon catheter to widen the aorta.
She'll be in hospital until at least tomorrow, maybe as long as the rest of the weekend, but when this is all over she'll feel a lot better.
We'll update when we can, we know after all our time in the hospital that there is a lot of waiting and then everything happens all at once.
Thanks for keeping up with Mirabel, she really appreciates it.

Sunday, January 18, 2009


Daddy was going to post a whole bunch of pictures with lots of funny captions, but he's just too tired so here are a few good ones to get you through the day...

Grandpa came by today...
Oh look, Mirabel inherited BOTH her Mommy's chins...
Happy baby...
Such a sweetie!

Sunday, January 11, 2009

What's next?

Now that we're home you are probably wondering what the plan is.

I've explained before that this is a very important time for Mirabel.  Without going into all the details about keeping her healthy it comes down to growing.  She has shown that it's something she's good at, coming into this world at almost 9 lbs and she's doing her best to keep it up.  Today for the first time she came in at over 5 kg (11 lbs).
She has a gore-tex shunt attached to her heart that sends blood to her lungs.  Basically now they are waiting for her to grow out of that shunt.  For some babies, 5 kilos would be a good time to do the second procedure (the Glenn) but then most babies with hypoplastic left heart syndrome (HLHS) start out a lot smaller than 9 lbs, so Mirabel is just going to have to wait.  Which is fine with Mommy and Daddy.  Although we often feel like a slave to the pulse ox we are really enjoying our little one.

Who seems happy and totally engaged with her family, when she's awake, that is...

Of course we love her and everyone she meets seems to fall victim to her charms, but there is one member of the family that has yet to voice an opinion...
On the other hand, the LiLu is pretty good at making her opinions known...
We are trying to be as normal as possible, Mirabel even went to her first sale at Macy's yesterday.  Afterwards she met a new friend...

So, that's where we are.  Getting bigger and making friends.  And maybe, just maybe, Mirabel and Lilu can come to some sort of agreement...

Meanwhile, Mommy and Daddy are having fun and finding plenty of time to get the little things done when Mirabel falls asleep.  Well, maybe not...

Thursday, January 8, 2009

Daddy got a special visitor at work yesterday

She seems unimpressed by the gallery behind daddy.

But at least she was awake to receive the her adoring fans...

In some instances adoring verges a little on obsession...
...not that we can blame them!

Wednesday, January 7, 2009

Somebody likes her swing...


On the other hand...

What you talking about Willis?!

Saturday, January 3, 2009

Baby's big day.

I had a very big day today.  I made a new friend...
Went shopping with Mommy and Daddy...
Spent some time with Gram...
Had a nap (or three) in my new bassinet...
Watched Wall-E with my other Grandma (who stared at me the whole time instead of paying attention to the movie)...
[photo not available]
Then I practically rolled over all by myself...

I don't take all the credit though, mommy and daddy got me addicted to the paci and so I just gots to have it...almost...there...