Mirabel Alice

A little surgery

2011-08-11T10:48:00.001-07:00

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

2011-06-26T17:57:00.001-07:00

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?

2011-04-07T11:12:00.000-07:00

Merry Christmas to all!!!

2010-12-25T10:05:00.001-08:00

Singing

2010-12-11T19:46:00.000-08:00

"Go Buckeyes!"

2010-11-20T13:28:00.000-08:00

Lying about her age already.

2010-11-19T21:48:00.000-08:00

London Bridge

2010-11-18T00:07:00.000-08:00

Whoo ...

2010-10-30T18:33:00.001-07:00

.... Is the cutest little owl??!!

Chow Maniac

2010-09-23T09:37:00.000-07:00

Mirabel learns to drive.

2010-08-28T16:53:00.000-07:00

Mirabel and the Lion

2010-08-23T19:26:00.000-07:00

Reading

2010-08-20T11:01:00.000-07:00

Summer living

2010-08-20T10:22:00.000-07:00

This was earlier in the week, before we had to dig our coats out and bundle up again.

Bye!

Summer.

2010-07-25T22:48:00.000-07:00

Hello all. Everything is going well here. We've all had colds but we're getting better and summer's here. We went to the beach today and Mirabel saw her first parade yesterday.

We're having a heat wave!

2010-07-09T11:50:00.000-07:00

We thought we'd head out before it got too hot.

She likes being outside...

But she wont go alone...

I'm pretty sure Daddy got wetting than she did...

She's going to have to learn to like the water a little bit more though.

Wading pool's open!!!

2010-07-07T19:25:00.000-07:00

Too bright.

2010-07-05T21:07:00.000-07:00

Bubbles

2010-07-04T16:32:00.000-07:00

Where's your...

2010-06-28T18:24:00.000-07:00

Olives

2010-06-26T20:35:00.000-07:00

Off to daycare

2010-06-24T10:22:00.000-07:00

Finally, a beautiful sunny weekend day.

2010-06-05T17:40:00.000-07:00

Memorial Day

2010-05-31T17:32:00.001-07:00

After many rainy days the sun came out and we were able to spend some time at the park. We hope you're having a great day!

2010-05-22T10:47:00.000-07:00

Hello everyone. Mirabel is doing pretty well. She's been fighting a cold the last week or two but aside from the snot, she seems to be feeling better. She has a procedure scheduled for Monday. Her g-tube upgraded to a new model. We should be in and out but keep her in your thoughts. Hope you are all well.

2010-04-25T13:04:00.000-07:00

I guess it's been a couple weeks since our last post. Things are going well. Mirabel is eating just about anything we put in front or her and walking all over the place, even throwing fits when we make her come inside. Her physical therapist is very impressed with how she's doing, she was even the cover girl on their Spring newsletter. Here's some pics of our adventures.

2010-04-11T22:19:00.000-07:00

First Peep!

2010-04-04T16:59:00.001-07:00

2010-04-04T13:41:00.001-07:00

2010-03-27T22:04:00.000-07:00

Out Shopping.

Dancing with Gaga.

How quickly they learn!

2010-03-27T12:14:00.000-07:00

She managed to open the bag and pull out not one but TWO cookies that
she is now nibbling on. She is truly our child.

2010-03-26T00:47:00.000-07:00

Din din!

2010-03-24T21:01:00.001-07:00

To celebrate a glorious Seattle evening, we walked to our neighborhood
pub. Mirabel was only too happy to mow down on the grilled cheese from
the kid's menu. Of course, she's so grown up that she didn't need our
help!

After a shaky start due to high mucus levels, we are back to
weaning .... Slow but steady wins the race, right? Little Miss is
doing great keeping up with her fluid intake. Now if only we can get
her to enjoy her veggies!

Thank God for teddy bears

2010-03-20T16:52:00.001-07:00

2010-03-14T18:04:00.001-07:00

2010-02-21T18:40:00.001-08:00

Cutest. Baby. Ever.

2010-02-15T13:49:00.000-08:00

Seriously!

Our little girl isn't so little anymore.

2010-02-08T14:37:00.001-08:00

Hello everyone!

Everything is going well here. Mirabel is eating more and more and soon we'll be cutting back on her tube feeds.

She's just getting SO big! Actually she isn't growing all that big, she's just becoming a person so fast. Yes, we get the typical one year old tantrums anytime we tell her no or take something away from here, but otherwise she's a really happy girl.

And don't let this last picture fool you, although she isn't walking much, she is toddling and getting more confident every day. She's up on her feet a lot and will be running around the house before we know it.

She's very loving and gives out kisses to Mommy and Daddy, her bears and even the older boys at daycare! (no wonder we keep getting colds)

She is smiling all the time and if you remember my previous post where I was squishing her face, these next two pictures are from last night when Cristy asked her to do Squishy Face.

We hope are all well, take care!

2010-01-31T16:00:00.001-08:00

2010-01-29T12:42:00.001-08:00

2010-01-28T19:06:00.001-08:00

2010-01-18T16:34:00.001-08:00

Cardiologist appt

2010-01-12T21:10:00.000-08:00

So, no new pics for this update but I wanted to get the word out about
Mirabel's cardiology appointment yesterday. It was fabulous!!!

She wasn't such a cool customer for the echo and the EKG/blood
pressure, but when Dr. Kemna came in she was all smiles. Other than a
lingering cold (that we saw the pediatrician about this weekend) she
was pronounced very fit indeed.

And glory, glory, hallelujah! We switched over to Enalapril from
Captopril for her blood pressure meds. Why is that such a good thing?
Because it only has to be given twice a day - no more staying up late
for that final dose!!

Dr. Kemna suggested that we come back in six months. When she saw the
look of panic on my face, she quickly amended that to four to six
months. ;)

In other news, we have been missing our Grandma! She flew back to the
warm and sunny climes of South Carolina last Friday and it hasn't been
the same without her. The silver lining is that we are going to
attempt more frequent blog updates, which have been rather sparse
lately.

Now I'm heading back to American Idol auditions. Happy New Year -
let's hope the rest of 2010 brings lovely things to everyone.

Merry Christmas!!!

2009-12-25T10:40:00.000-08:00

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!

Mirabel help!

2009-12-20T21:00:00.001-08:00

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

Go Bucks!!!

2009-11-21T11:06:00.001-08:00

Caaaaakkkke!

2009-11-19T21:08:00.001-08:00

Happy Birthday beautiful baby girl!

2009-10-31T12:27:00.001-07:00

Big Update

2009-10-30T23:17:00.000-07:00

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.

2009-10-28T14:47:00.001-07:00

2009-10-25T18:50:00.001-07:00

She likes football, really.

2009-10-24T10:07:00.001-07:00

Watching the game.

2009-10-24T10:06:00.001-07:00

Someones enjoying her her highchair!

2009-10-22T19:21:00.001-07:00

Thanks Grandma!

2009-10-22T15:26:00.001-07:00

There you are!

2009-10-11T15:15:00.001-07:00

Peek-a-boo!

Mirabel?

2009-10-11T15:14:00.000-07:00

Where are you?

Multi tasking

2009-10-04T22:26:00.001-07:00

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??!!

Someone's sleepy...

2009-10-01T20:16:00.001-07:00

I'm not sure which is better

2009-09-27T19:04:00.001-07:00

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).

Yeah, they're nothing alike

2009-09-26T15:06:00.001-07:00

Zero sum

2009-09-26T14:32:00.001-07:00

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.

Feeding is going better

2009-09-19T21:41:00.001-07:00

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! ;)

We now return...

2009-09-17T12:54:00.000-07:00

...to Morning Mohawk.

Picking Mirabel up from Grandma's

2009-09-11T10:10:00.001-07:00

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.

I waved goodbye...

2009-09-09T09:02:00.001-07:00

... 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!"

Would somebody please teach this girl some manners!

2009-09-02T20:14:00.000-07:00

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.

Back and better than ever

2009-09-01T14:01:00.000-07:00

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!

Here we go again ...

2009-08-31T13:40:00.000-07:00

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.

Punk rock girl

2009-08-25T08:25:00.001-07:00

Mirabel has a new trick.

2009-08-20T21:32:00.001-07:00

As if she wasn't cute enough already.

Good mornin'

2009-08-17T12:47:00.001-07:00

Smile ...

2009-08-14T20:47:00.001-07:00

... Or yawn?

Hidden Picture Puzzle

2009-08-09T14:04:00.000-07:00

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.

Preview of coming attractions.

2009-08-08T17:49:00.000-07:00

Today was picture day but instead of posting pics, we're going to a party. Here's a little something to tide you over.

New photo

2009-08-07T13:21:00.001-07:00

I've received a message thru my mother that someone thinks I need to
post pictures more often. Here you go.

Inspecting Mirabel's 6th tooth...

2009-08-01T13:15:00.001-07:00

...I realize that it's actually her 8th tooth. We didn't see that she
now has 4 up and 4 down. We thought she was tough just having surgery
but add cutting 3 teeth and the same time? That's just crazy!

Beatin' the heat

2009-07-30T20:30:00.001-07:00

We spent a good part of the day either in the air conditioned car or
in nice cool stores. The hottest part of the day we played and napped
in our AC'd bedroom. Now she's hanging out with us on the couch which
us nice and cool as long as the fan is on.
Hope you're cool too!

Home and thanks

2009-07-26T22:01:00.001-07:00

Well, we're home after a week and a half and two surgeries. Mirabel is
almost back to normal and we couldn't be happier.
We want to thank you all, we have felt very loved and supported and
that has really helped us focus on our little girl and now we can look
forward to having a great summer (once it cools off that is).

Gimme an H!

2009-07-26T09:32:00.001-07:00

Gimme an O! Gimme an M! Gimme an E! What's that spell? Home! Yayyyy!!!!!

Still the most dramatic sleeper!

2009-07-25T21:33:00.001-07:00

Dinner for three

2009-07-25T18:26:00.001-07:00

We are enjoying an outdoor table at La Cafeteria with our favorite
girl. They've mentioned the words "home" and "tomorrow" in the same
sentence ... It still might not happen, but keep your fingers crossed.

Saturday

2009-07-25T09:44:00.000-07:00

It's a pretty good morning for Miss Mirabel. In about 10 minutes time
she got three tubes out if her body. Including the oxygen!!!
She's happy and playing and sitting up. We even plan to leave to room
today and go for a walk.

Look who's up!

2009-07-24T19:50:00.000-07:00

It's been a sleepy day but the Little Miss is now up and cuddling with
her daddy. She's been weaned to .3 liters of O2 and is keeping her
sats up in the high 70s - yay! Chest tube should come out tomorrow,
which is one day hopefully closer to going home. She is such a
trooper. We are so proud of her!

2009-07-23T22:35:00.001-07:00

Oops hit send too early on that one...
Anyways, she's now back in her room (not in the ICU) and sleeping
quietly (with sats at 78 no less).
A long trying day but true to her style, Mirabel came through it like
the beautiful, tough little girl we all know she is.
If everything goes perfectly we may be home this weekend but all we
really care about is that Mirabel is getting better all the time.
Again, thanks for the thoughts and prayers. We couldn't be more
grateful.

Our girl has serious cred.

2009-07-23T22:27:00.000-07:00

Any boys on the playground, talkin all tough cause they have a scar,
will have a world of embarrassment ahead if them if Mirabel is within
earshot.
They've opened up her chest twice (with a third one on the way).
They've put tubes in her chest and tummy and today you can add a scar
under her right arm that would make a seventh grader cringe.
It was a long day today. They changed her surgery time a couple of
times, and when they did take her back it was about four and a half
hours before we could see her. On top of that, at one point we were
told the surgeon wanted to talk to us, then we waited another 45
minutes while he conferred in the hall with two of her other doctors.
Only to find out that they were talking about another patient and
Mirabel was fine and in recovery! Sheesh!

We THOUGHT this had gone too easily.

2009-07-22T14:04:00.001-07:00

Mirabel's oxygen saturation hasn't been very stable over the past few
days. Nothing emergent but after her surgery they should be better. We
went to radiology today and her right diaphragm is pushing up on her
right lung due to some nerve injury or damage.
Long story short, she is going to need a minor surgery this week.
They are going to put a couple of stiches in her diaphragm to flatten
it out and allow her lung to inflate completely and lower the
resistance for the incoming blood.
To make matters worse the surgery schedule is pretty full so they are
going to try to "fit us in" this week.
Overall we feel good about her prognosis but time-wise we are in
limbo. Of course we'll update here as we know more.
Take care,
The Stones.

Mirabel had a bath.

2009-07-21T12:25:00.000-07:00

Surgery +5

2009-07-21T09:34:00.001-07:00

Mirabel is doing really well. We got the word that she won't be going
home today because they just want to be sure her meds are right and
see what (if any) her oxygen needs are.

Today we're going to get a bath and I'll post a pic once we're all
clean and stuff.

2009-07-19T13:10:00.001-07:00

Mirabel is trying to reach room service.

Moving day.

2009-07-19T12:01:00.001-07:00

Leaving the ICU and going down the hall is hard work but don't let my
sleepiness fool you. When I'm awake I'm all smiles and sitting up!

Hanging with Mommy

2009-07-18T19:42:00.000-07:00

Doing well tonight. We assume they'll kick us out of the ICU in the
morning.

Things are looking up!

2009-07-18T12:44:00.000-07:00

We've got the chest tubes out, a onesie on and our hair all did up!

And not crying...

2009-07-18T09:41:00.001-07:00

With Grandpa here!

Sleeping comfortably.

2009-07-18T09:40:00.001-07:00

11:25 pm

2009-07-17T23:30:00.001-07:00

Awake and playing a little. Very interested in what all those nurses
are doing. Getting sleepy.

Sleepy day.

2009-07-17T20:39:00.001-07:00

A pretty uneventful day (in a good way). Mirabel is doing well. Not
much else to say (in a good way).

Surgery +1

2009-07-17T17:57:00.001-07:00

Mirabel is doing well today. Lots of sleep and she still has tubes
coming out of her chest but she's sitting up (with pillows) and only
really only gets upset when we're poking at her.

Basically everything is going well and we're very happy. Thanks for
all the well wishes, keep 'em coming and I'll update again tomorrow.

We're with our little girl.

2009-07-16T16:17:00.001-07:00

This will probably be our last update tonight. We are with Mirabel.
She's asleep and doing fine.
Thanks to everyone for their prayers and well wishes (keep them coming!)

Take care,
David, Cristy and Mirabel

All done!!!

2009-07-16T14:58:00.001-07:00

Dr. Cohen just came out to talk to us - she's all done and everything
went fine! They're finishing up the clean-up now. We should be able
to see her in the next half hour or so.

Thank you for all the kind wishes, thoughts and prayers- they worked!