Friday, December 25, 2009

Merry Christmas!!!

As you all know, last year, after 5 weeks in hospital, Mirabel came home for the first time on Christmas Eve. Although she is the best present any of us could ever hope for, I think we were all a little terrified those first couple of days.

This year couldn't have been more different. Our little girl is healthy and happy and we actually celebrated Christmas with a nice dinner and presents and everything!

We had the family over last night for dinner

And this today our little family had our first real Christmas morning. Mirabel still needed a little help opening her presents but she sure knew who they were for (not that it kept her from wanting to play with Mommy and Daddy's presents or just playing with ribbons and boxes and wrapping paper.


We are SO thankful for our little girl and for everything God has given us and we hope that you all are also having the best Christmas EVER!

Sunday, December 20, 2009

Mirabel help!

Okay, we owe a MUCH longer post, but had to share this pic - Mirabel's
first attempt at self-feeding!

Saturday, November 21, 2009

Thursday, November 19, 2009

Caaaaakkkke!

Happy Birthday beautiful baby girl!

Saturday, October 31, 2009

Friday, October 30, 2009

Big Update

I know we haven't posted much other than random photos lately, but with us, no news truly is good news. Here's an update, just before our little girl turns one.

We don't know how this happened, but Mirabel isn't a baby anymore, she's a little girl and she's on the move!

Nothing will ever be the same, I am sure. And thanks to this next picture, we know exactly what she's going to look like as a little old lady.
She's been eating in her big girl chair that Grandma bought her and Mommy stained.
She's doing pretty good, Mommy even let her try some frosting.
We spend our Saturdays watching football.
She likes it I swear!
She got her first haircut.
and is making nice with the cat.
We're just enjoying our time with our baby.
Tonight was Halloween eve and Mirabel was a Fairy Princess.




She'll have a different costume tomorrow, so there will be more pics later.
Take care all.

Wednesday, October 28, 2009

Sunday, October 25, 2009

Sunday, October 11, 2009

Sunday, October 4, 2009

Multi tasking

When we went for our walk this afternoon, Mirabel decided she wanted
to nom on a teether and take a nap at the same time. Who were we to
tell her no??!!

Sunday, September 27, 2009

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).

Saturday, September 26, 2009

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.

Saturday, September 19, 2009

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! ;)

Thursday, September 17, 2009

Friday, September 11, 2009

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.

Wednesday, September 9, 2009

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!"

Wednesday, September 2, 2009

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.

Tuesday, September 1, 2009

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!

Monday, August 31, 2009

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.

Tuesday, August 25, 2009

Thursday, August 20, 2009

Mirabel has a new trick.

As if she wasn't cute enough already.

Monday, August 17, 2009

Friday, August 14, 2009

Sunday, August 9, 2009

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.