Wednesday, December 31, 2008

Friday, December 26, 2008

Rawr!!!


I's is a leopard!

Thursday, December 25, 2008

Merry Christmas!!!

Look What We Found Under Our Tree!!!


Okay, we don't really have a tree but we do have a beautiful baby girl (with Rudolph socks no less)!!!
Yes our little angel came home on Christmas Eve and woke up with her family on her very first Christmas.
We are so thankful for all the thoughts and prayers over the last month+ but don't stop praying yet.  This is still a very critical time for Mirabel.  In 4 or 5 months she is going to need her second surgery and until then we are going to be putting her through her paces to make sure she's as healthy as can be.
We hope to see many of you in the new year and little by little Mirabel can get to know her extended family of well wishers.
Okay, I have to get back upstairs to my baby now. 

Sunday, December 21, 2008

Look Ma!

No crap all over my face.
It's been a long day and it isn't over yet but for one brief, shining
moment there were no tubes in my nose and no tape on my face.

(I don't think I'm being biased in the least when I say she is the
most beautiful child ever born. I know I'm not being biased because
Cristy agrees).

Victory!

We made it. It took us two hours, including getting stuck, putting on
the chains and stopping at Krispy Kreme but we made it.
Mirabel is having a challenging day and we were be damned if we were
going to let another snow storm keep us away.
Our little girl is having some trouble keeping her oxygen levels up.
It might be related to having a swollen throat or maybe Morphene
withdrawl but they are looking into other possibilities too just in
case.
She's quiet and comfy now (probably because mommy and daddy are
here). In fact, if the snow keeps up we might just live here now.

Anyways, some steps forward and some steps back but we are all hanging
in here.

We hope you are all warm, safe and dry.

Saturday, December 20, 2008

So busy for such a little baby.


It's been a couple of days since we last posted and Mirabel is doing very well.

All of her IV's have been removed as have the stitches in her chest.  She's working on the "training binkie" which has a tiny tube in it that milk comes through since she's only ever eaten through her nose.

She is still having a little trouble keeping her oxygen levels up but her last Echo showed that her leaky valve has improved.  In fact, she's doing so well, she has been placed on an inactive status on the transplant list.

Although there were a couple of snow days when mommy and daddy couldn't get off their street, mommy spends most of her days here and daddy does too unless he's at work.  Most importantly, they were both here for Mirabel's one month birthday yesterday. (they grow up SO fast). Mirabel wanted cake and a pony but all she got was breast milk through her nose and the hiccups, again.

Well, daddy has to get ready to go, every day is one day closer to getting Mirabel home so I'll just post one more cute picture for you all to enjoy.

Tuesday, December 16, 2008

Happy baby!

Maybe it's the absence of the oxygen tube, or maybe it's just gas, but
that looks like a happy baby to me! :)

Daddy thinks he's SO smart...


Even though Daddy as been around babies his whole life, Mirabel proves he's still got a lot to learn.
She was sleeping peacefully when he arrived at the hospital after being fussy all day but he figures, "oh, I can pick her up without upsetting her because I'm so great, blah, blah, blah".

The picture above was taken during one of the brief periods over the next hour and a half that she wasn't crying.

Okay, I've learned my lesson.  Take comfort and solace in a sleeping baby, it may be the last quiet moment I have for a while.

Monday, December 15, 2008

New digs!

Monday started out on the move as Mirabel was transferred from the ICU
to "the Floor". Ironically, she's still on floor number four, but
she's gotten off the Train section and is now on the Giraffe. Woo hoo!
This is a huge step forward for our little girl - and for Mommy, who
is now taking more responsibility for her care (no more pawning off
the dirty diapers on the nurses!)

~ Cristy


Sent from my iPhone

Saturday, December 13, 2008

Everybody's working for the weekend, even Mirabel.

Guess who's got another new bed?
Yup, you guessed it!  The first one was too small, my feet were almost touching the bottom edge.  And the second one was too big, they put me in the middle and Mommy couldn't reach me.  But this one is just right!

And the princess blankets haven't gone to me head one bit.  In fact this bed would be perfect if someone would remove that small lump from under my mattress.
Not that I'm spending as much time in this bed.  It's much easier or Mom and Dad to just pick me up and hold me now.


And no, Mommy' not trying to gag me, that's just part of my physical therapy.  If I can remember how to suckle maybe I can get some milk up in here.  They say that if I keep doing as well as I have been then I get to go to a whole other part of the hospital and have a room where more of my adoring fans can come and see me.  I bet that would be nice for them.  In the mean time I'm just going to rest and keep on getting better.

Peas out!

It's the little things

She's wearing a onesie!!

It's amazing how something that ordinary can be so ... wonderful. :D 

In addition to new clothes, Nurse Cindy removed one of her IVs, gave her a bath and snuggled her down in a couple of Princess blankets. So now our little girl is cuddly and clean and much more portable, resulting in hours of holding by Mommy and Daddy (Grandma Arlene even got in on the action :)).

But there's no rest for the weary, so we're working on weaning her off some medications and teaching her how to suckle again. It's not easy being three and a half weeks old!!

~ Cristy



Thursday, December 11, 2008

Today's been a good day

As soon as she woke up this morning, the doctor, nurse and respiratory
therapist took her off the ventilator - and so far she's doing great!
I was so excited to see her beautiful face without all those tubes -
it felt a little like Christmas came early. :) She's been a little
fussy this afternoon, but what with the sore throat and not eating all
day, she can hardly be blamed.

I got to hold her for a good long time this afternoon, which made both
of us pretty happy. Add in a visit from her Gram and she's had a full
day.

Next steps are weaning her off some of her medications and teaching
her to eat. She is such a trooper!!

~ Cristy

P.S. Thank you all so much for your prayers and good wishes, both for
her and my brother. We are truly blessed!

Wednesday, December 10, 2008

Family Portrait

So, after Mommy spent most of yesterday hanging out with Mirabel, Daddy got to spend some quality time holding her! Our nurse was kind enough to take a family photo.  Hopefully today it will be my turn (it's not easy to get her out of bed with her ventilator tubes and such).

Everything seems to be progressing well - her valve looked better in the Echo from Monday, and her lungs are looking better in her Xrays, so they're once again weaning her off the ventilator. Since she's been on it for awhile they're going to take their time, but she took the adjustment yesterday like a trooper!

They've also upped her calories and she's at full feeds now through her tubes. We're working on getting her to remember how to suckle so that once the doctors say it's okay we can try to feed her a little more naturally. :D

~Cristy

Monday, December 8, 2008

Happy Monday!

Little Miss was wide awake when I got in this morning. They did
another Echo - when they get the results back they're going to discuss
whether or not to try to start weaning her off the vent. In the
meantime, after a diaper change and a switch to laying on her right
side, she's decided it's naptime.

~ Cristy

Sunday, December 7, 2008

After being held...

...And getting all snuggly in her new bed, Mirabel just wasn't tired
and Mommy and Daddy got to spend time looking at those beautiful eyes
and talk to her for a while before she finally nodded off.

Out and about.

Well, she only traveled about three feet but mommy and daddy got to
hold her again for a while.
And when they're done she gets to move into a big-girl crib since she
seemed to be out growing that baby bed she's been in!

Even more sleep

Yes she's sleeping again and her mother just had a little nap too (but
you'll have to take my word for it cause Cristy won't let me post that
picture).

Despite all the sleeping Mirabel is much more active and alert over
the past couple of days. (Cristy's level of consiousness is unchanged).

Daddy is going to have to go back to work tomorrow but mommy will be
here watching over our baby.

There are so many of you out there praying for Mirabel and sending us
so much positive energy I hate to ask any more from you but please add
Cristy's brother Travis to your thoughts and prayers. He was in a car
accident in Canada yesterday. He's pretty banged up but the word is
that the prognosis is good. Thank you.

Saturday, December 6, 2008

Big Blue Eyes

Well, we got a better look at those big blue eyes today! She was
awake(ish) and squirmy for us this morning - it was so nice to see!
She's still fairly heavily sedated and resting a lot, but they're
slowly decreasing her morphine so hopefully these waking moments will
come more often.

They removed the pacing wires yesterday (since she hasn't had any
arrythmias out of the OR) and finally got her in for an MRI. I spoke
with the neurologist this morning; he said that there is some damage
on the right side of her brain that will probably affect her motor
skills on the left side of her body. We won't know to what extent for
a few months - it could be minimal or it could mean that she has some
spasming/tightening of her arm or leg. He did mention that there are
some exercises we could do that might help.

He thinks, but can't say for sure, that the initial irritibility of
the brain after the damage occurred is probably what caused the
seizures, in which case they'll likely "melt away" after a few months.

Like most everything, only time will tell.

Next steps are to get her off the ventilator, which probably won't
happen for at least a couple of days, and then figure out what we're
going to do about the pesky valve issue.

In the meantime, I think I'm going to take a page out of her book and
take a little nap ... :)

~ Cristy

Friday, December 5, 2008

Wednesday, December 3, 2008

Sleepy day!

So today's been a pretty good day, if a little sleepy. She had her
chest tube and a couple of monitors removed yesterday so we get to see
a little more of her now. They're lowering her morphine (to try to
wake her up a bit) and are also starting to lower the ventilator so
that she's breathing more on her own. Oh, and she's up to 3mL per hour
of milk - yummy!

But the most exciting thing for us was that we got to hold her for a
good long time. She even fluttered her eyes open for a bit, just in
time to meet her Grandma Arlene (who just got into town and is a bit
sleepy herself :)).

Here she is (Mirabel, not Arlene) all sacked out - at least her mouth
is closed! :)

Tuesday, December 2, 2008

A case of the Mondays

Mirabel had another busy day on Monday.
It started off with going to the OR to have her chest closed. Between
the sedation for the surgery and her anti-seizure meds she was out all
day.
Later in the day she went to CT. A big ordeal since they have to drag
all her monitors and IV's and ventilator along.
To add insult to injury, she had to do all that with a tragic case of
bed head. Made worse by all the goop left over from an EEG a couple
of days ago.
At the end if the day we talked to the doctor about her CT results.
She did have a small bleed in her brain. The good news is that
although whatever damage was caused is permanent, he said that chances
are good that it will only affect her fine muscle movements and may
not even be noticable.
The bad news is that it doesn't explain her seizures. However, she
hasn't had any in a couple of days and there is the chance that we
might never know what caused them.
Then we went to dinner at our new favorite place. It's called "La
Cafeteria" and comes highly recommended.
When we returned our little baby had woken up a little for us. She was
still a bit groggy but we got to see those beautiful eyes again before
we went home for the night.
I'm writing this on Tuesday. Pardon the expression but it's a "baby
steps" kind of day. A little less morphine, a little more food and
they'll adjust things again in the morning.

Monday, December 1, 2008

ADORABEL

So I assume that some of you only want to see pictures and I can't blame you, she is
ADORABEL!

Here is the link:

http://picasaweb.google.com/dav3ston3

Then to Children's

We were told that they planned to take her to Children's hospital on Sunday so we slept in a little on Saturday. Then we got a phone call Saturday morning telling us they planned to take her to Children's a day early, in about an hour in fact.
So, we rushed over to the hospital and sure enough 3 or 4 hours later the transport team arrived.

They bundled her up and we all met up at Children's NICU.

Walking in to the NICU it just seemed like a more serious place but in a good way. We knew we had some rough times ahead and they obviously knew what they were doing. The big shock was seeing her for the first time there. She was under a little tent, to keep her oxygen levels lower, and was removed from us a little.
We could reach under and give her a binky and I'm tall enough that I could look through the little hole in the top. 
Mostly we just watched her through the plastic. She also developed a nasty habit in the NICU. The nurses put a little sugar water on her binky so she wouldn't spit it out and by the time she left if you tried to give her a binky without the sugar water you could see the look of contempt in her eyes.

One day a hospital chaplain came by and talked to us. As we talked my old Catholic self reappeared and the next day a local Catholic Deacon came by and baptized Mirabel.

Surgery day arrived. Cristy and I had spent the night at the hospital in one of the twin beds in the sleeping room. They came for her at 7:30, we kissed her and told her we loved her and went back to take a nap. I can't remember off the top of my head how long the surgery took, but it was probably 4pm or 5pm before we could see her.


She was pretty out of it, she had a breathing tube in her nose and three tubes coming out of her chest. She was on ECMO (two of the chest tubes) to help her circulate her blood so her heart could rest a little.

The surgeon told us that things had gone well except for a couple of complications. One of her valves was leaking (not limiting the blood flow to the one direction it is supposed to flow) and when they touched her heart she had lots of arrhythmias. They gave her medication for the arrhythmias and she'd have lots of cardiac echo's to keep checking the valve.


She did pretty well for a couple of days, but the ECMO is a stressful thing to be on and we got a call Saturday morning that she had developed some sort of skin rash and was having seizures. So, Saturday turned out to be a long day for little Mirabel. By the end of the day she was off ECMO and had those two tubes removed. She was still having seizures, but they were controlling them the best they could.


Sunday was a much better day. She was quiet and she only had a couple of seizures. There had been some irregularities in her blood work, but that all seemed to resolve after the ECMO was turned off. They even started to feed her actual breast milk for the first time.

Today is Monday. Before we arrived this morning they took her to the OR to close her chest. She did well, no arrhythmias, but she was pretty out of it when they brought her back. Throughout the day she has started to wake up a little but now she's off to the CAT scan. The plan for this week will be to keep an eye on her neuro status, making sure there isn't anything serious causing her seizures. Then getting her off the vent (breathing machine) and increasing the amount of her feedings. I'll keep this page updated as often as I can.

This has been quite a rollercoaster. It seems like such a long slow crawl up and whenever any little setback occurs, the bottom just drops out.


We want to thank all of our family and friends for being so supportive. I know we haven't accepted a lot of help but just knowing you are out there means so much. Keep praying for Mirabel and please pray for all the children here, especially for the two roomates shes had here and their families. I wont tell you their names for privacy sake, just call them M and A. Very sweet girls with very nice families.