Yay! An update!

I can't believe this is the first post of 2011.  Grace is having a great new year.  While there has been a lot of progress, the biggest news is that she took her first steps.  She is also able to take herself up and down the stairs.  For this you need to see videos.  So enjoy!

First Steps!

Practicing on the Treadmill.

Birthday Photos

Happy Birthday Gracie!!

Gracie is two today!!
Can you believe it.  Last night Grace decided to remind us of that sleepless night by keeping us sleepless again. She was up from 1 to 4, either crying, hungry, or just chatting to herself. Happy birthday to us!!
Despite our sleepless nights and the stress of all her surgeries and hospital stays, Deb and I are overjoyed to have her in our lives.  A smile and a kiss from her will right all wrongs - and she knows it.  We looked back at some photos from two years ago when we first brought her home and we are so thankful that we no longer have to cart around a ventilator and oxygen all the time.  Life is so much easier on Grace's second birthday.

Finally!! An Update

So I am the worst blogger ever - oh well.  Hopefully all the good news I have for Gracie's loyal following will help make up for my delinquency.  Let's start off today with Grace's belly surgery -part deux.  On September 20th we dragged ourselves back to Riley for the final closure of the omphalocele.  Despite being NPO until afternoon, Grace was a well behaved angel.  Dad was out of his mind with boredom and true-to-form was less well behaved.  The surgery went well, with a successful reduction of what was left of her omphalocele and the creation of a new belly-button.  Thank you Dr. Rescorla!  Now Grace has something to pierce when she becomes a rebellious teenager.

Her post-op recovery went well.  Grace doesn't complain too much and we got out of there by Friday.  We can add yet another unit in Riley to our list of floors Grace has been on.  Grace has done wonderfully since she has been home.  She is now walking with her walker and cruising a little with the couch and coffee table for support. She is correctly identifying letters of the alphabet and still knows more sign language than Daddy.  I wish I could say that sleep is improving.  Monitors and oxygen at night are still the status quo.  Grace also started waking up in the middle of the night for an hour or two which is tiresome, but finally improving.  Personally I think this surgery impacted Grace more than her previous visits to Riley.  Probably because she is getting older and more aware of what is going on.  She has been a little needier.  Part of it could be just that she is turning two!

I will post some pictures this week and even a video of her on her walker.

Belly Button!!

Who would have thought that a belly button could be that exciting?  Grace does!!
Grace had her final belly surgery today to close what is left of her omphalocele and give her a new belly-button.  It was a long day for her, and as usual she was an angel.  We were dreading a whole morning without food, but she didn't complain at all.  No fussing, no whining, just her best behavior.
The surgery lasted about 3 hours and she is now resting comfortably in the PICU.  Our hope is to be home by the weekend.  Thanks for all the calls, texts and facebook posts.  We always appreciate your support.

Gracie's Summer

It's been a hot one in Indy this summer, but Grace has been enjoying herself.  She has been to the pool, of course, but also the Indiana State Fair and recently a trip to Grandma's.  Her best friend is Mac, and her favorite food is watermelon.

Grace riding a pony at the Indiana State Fair.  I don't know who is more excited, Grace or Mom.

Pineapple Whip on the Fourth of July.

Watermelon for breakfast - and every other meal if she was given a choice.

Dad, will you let me chew in peace please!

Yes, she does have her hand in Mac's mouth.  He is great with her and even helps out by giving her a bath.  You will notice her beautiful hair do - courtesy of Mac.

Modeling her many outfits.  She will always be well dressed.

Scooting!

Grace is now mobile!  Over the last few weeks Grace has figured out how to scoot across the floor to get what she wants.  Unfortunately for the dog, she usually wants to come over and pester him.  She is working on standing by herself with just a little support, and one of her favorite things to do is be taken for walks with Mom or Dad holding on to her hands.  Here comes little Miss Indepedent!

Summer is Here!

Summer came on strong in Indianapolis this weekend and we finally got Gracie out to play. She loves her swing of course and is working on using her stroller. Backwards seems to be the direction of choice. The first two pictures are after breakfast. The mark on her forehead is not a bruise, but a blueberry that missed the mark!

Back on the Leash

Grace may be going home today, but at looks as if she will be back on the leash (ventilator and oxygen). we had enjoyed being free from all the paraphernalia, but she seems to need the ventilator at night and a little oxygen during the day. We are trying to convince the docs that we can wean her ourselves at home. If so we can he fully bounce out of here later today.

On a sadder note, Grace lost her great-grandmother Margie this week. She was 89 years old and passed peacefully in hospice surrounded by family. Luckily grace visited with her about 10 days ago and got to see her before she passed. We will miss you Margie.

Close But No Cigar

We thought we might be coming home today.  Gracie was doing much better and they took her off CPAP (ventilator) last night.  Unfortunately her oxygen requirement went up by morning and she had to go back on the vent for a while to rest her.  Looks like another day or two at Riley before we can get her home.  Fingers-crossed for Saturday!  The little lady herself is doing well.  She is cheerful and rambunctious and making friends with anyone who will come in her room.  Her parents on the other hand are tired and cranky and would like to go home thank you very much!

Turning the Corner

Grace is looking much better today.  Up and playing with Mrs. Potato Head.  She is still on the vent, but doesn't seem to be having anymore fevers.  Her oxygen requirement is down and hopefully we can get her home in the next few days if the vent can be weaned.  Deb has been staying at the hospital at night and is exhausted.  We have a feeling that Grace may be back on the vent, at least at night, for a while.  More tomorrow.  

Dagnabbit!

Well, this is not what we had planned for our weekend. Gracie started coming down with a cold on Saturday, and by Sunday morning she was starting to drop her oxygen levels and having trouble breathing. So that meant a trip to the ER on Sunday morning. FYI, if you must go to the ER, Sunday morning is the time to go. Not a soul in there practically, except for us. So Grace got some breathing treatments and was admitted to the pediatric ICU where she was placed on a ventilator. Presently she is still on the vent, and running a low fever. They feel it is a viral respiratory infection at the moment and Grace has such little reserve that her little lungs just can't handle it. She is requiring a lot of oxygen and is very uncomfortable We will keep you posted as the situation develops.

Easter

In the spirit of procrastination, I am finally posting the pictures of Grace from Easter.  She met the Easter Bunny, fought for some eggs at a local Easter egg hunt, and touched her first lamb.  She also made a new friend, Parker, who just moved in across the street.

Grace in bunny ears with her Elmo Easter basket.

Grace and her new friend Parker

Grace's Easter dress.

Cute shoes!

Enjoying Spring

Grace had her stitches out on Monday. Mom and Grace survived the trauma - Dad was conveniently working that day. We have been taking advantage of the warmer weather and getting Grace outside.

 Grace in her wagon.

Love the hat!

Mac and Grace, both with spiky hair.

Gimme a kiss.

G-Love.

New Pics

I may have mentioned that we had family photos taken prior to Grace going to the hospital.  Our photographer, Melody, has sent us a link to her blog where she has posted the first images.  If you are in the Indy area, consider her for your family portrait or wedding.  We are very pleased with the outcome. Here are a couple of samples, but go to Melody's site for all of them

Finally Home

Here is Grace safe and sound at home and showing off her tummy tuck. You can see that it is still quite prominent, but nowhere near the size it was before. Her little abdomen just has to make room for everything that was on the outside. Over time it should expand and she will have the rest of her belly closed later. We are just thrilled to have her home, and as long as she eats well and stays hydrated we will stay out of the hospital. Being home has mader her much happier. She was very good in the hospital, but the home environment has brought her personality back and she is back to being a spitfire again.

 

Coming Home

Just got the word - we are coming home.

Home?

Gracie's IV stopped working last night.  That means Gracie has to eat in order to avoid another one.  Our hope is that she will drink enough today that we can take her home.  Until yesterday she was showing no interest in food.  Let's pray that her normally ravenous appetite will return.

More Progress

Heading back in the right direction today.  Grace took a little food for the first time since surgery.  Not the voracious appetite she had before she came in, but a move forward nonetheless.  He mood has improved too.  She does not appear to be in pain and she is as full of pee and vinegar as always.  Her smile is back too.  That's the best part.

Small Setback

Grace had a good night.  She seems to be able to sleep through anything, even the wailing baby sharing her room.  Dad, however, cannot.

Grace did require a little more oxygen last night and she was breathing a little fast.  Basically her intestines are pushing on her lungs and making it hard for her to breathe.  An x-ray shows a lot of gas in her colon.  Hopefully she will get her bowels moving a little better and breathe easier today.

Grace is a stoic little thing.  She doesn't really fuss too much and takes it all in stride.  Must get her toughness from her Mom.  Thanks to all who have stopped by.  More updates later.