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.

A Better Day

Gracie's day was easier today.  She is in less pain and requiring less pain meds.  Not exactly her smiley self, but improved. She is now passing gas and moving her bowels, so she can start feeds. Deb tells me she was none too interested in the bottle today.  Maybe she will be hungry tomorrow.

24 Hours

It has been about 24 hours since surgery and Grace is doing a lot better.  As expected she is still not very comfortable but considerably better than last night.   It's funny, but she does look a little different without her omphalocele.  She still has a large ventral hernia left that will be repaired another day and is much smaller than before.  We are hoping that this will make it easier for her to move around, roll-over, crawl, and even walk.

We just heard from the general surgeons that she can have her nasogastric tube out - even Deb doesn't know this since she is home sleeping.  Deb took the night shift last night while I curled up at home.  Lucky me. Deb was relegated to the firmest pull-out chair ever.

On other news, Graceis finally making urine.  She was pretty dehydrated after surgery yesterday and got a lot of iv fluid overnight.  She looks a little puffy with a swollen little face, but that will go away.  All we need now is her bowels to move and we can start her on some food.

Yesterday went well.  As I mentioned the surgery was complicated by her malrotation.  Hopefully correcting it at this age will prevent her from having a problem later.  We had wonderful support as usual.  Deb's Mom and my Mom and brother came to lend a hand.  It was great to have them all here and I think they will be returning later in the week.  We also had help from one of my patients who works at Riley.  She lined up a good anesthesiologist, and OR and recovery team for Gracie.  We felt as if the red carpet had been rolled out for us.  Thank you!

Done!

We just spoke to the surgeon and Grace is out of the OR. Of course nothing is ever as simple as planned. Unbeknownst to us, Grace had an intestinal malrotation which is relatively common in kids with abdominal wall defects. Accordingly she had to have a Ladd procedure to reposition her intestines so that they are less likely to become obstructed or twisted. Along with that he performed an appendectomy since after surgery her appendix will be on the wrong side. This would save some confusion if she ever developed apendicitis later in life. Grace is in recovery and we will go see her in a few minutes. Update to follow.

Started

Grace just went back. Hopefully we will have some news in the next hour or so. Thanks for all your texts, e-mails, and facebook posts!

Sunday Evening

Sunday evenings are always a little depressing at the best of times. Today seems doubly depressing as we gear up for tomorrow. My fears about the feeding were for naught as Gracie seemed to be fine with Pedialyte and has been in a good mood most of the day as evidenced by the photos.  Wish us luck tomorrow.  Feel free to call, e-mail or stop-by.  She is scheduled to start at 8:30 so I assume she will be done by noon. I will update after the surgery is over.  Yes -- we are nervous.

The Weekend Prior...

Monday hangs over us this weekend, so we are enjoying our time with Gracie before she goes in for surgery.  Today we had Melody Carpenter over to shoot some family photos.  Although we have a lot of pics of Gracie, we don't have very many of the three of us together.  Something to do with the fact that I am always behind the lens instead of in front of it I guess (as it should be).  We have now rectified that situation.  She will post some preview pics on her blog sometime later in the week.  If you are in the Indy area and need some photos done, give her a call.  She was great to work with and we had a wonderful afternoon.

The weather has warmed here finally, so Deb, Grace, Mac and I trundled up to Starbucks and sat outside and ate cupcakes from the Flying Cupcake Bakery.  Not a bad way to spend Saturday.  Tomorrow we start bowel prep for surgery.  Grace may only have clear liquids (i.e. juices etc) for the 24 hours prior to surgery and will be getting mega-doses of Mirilax.  We shall be going through diapers at an amazing rate tomorrow.  I'm a little concerned because Grace is not a big fan of juice.  She likes her milk and she likes it on schedule.  The only time Grace gets any kind of attitude is when she is tired, or if she misses her bottle.  I just don't think apple juice is going to win the day for her and I expect tantrums all day long.  Sigh.  We'll keep you posted.

Huge News!

We have some great news today. Grace had a sleep study this week to see how she does at night without her ventilator and without her oxygen. I won't keep you in suspense, she passed!  This means that Grace is now off oxygen and off her ventilator altogether.  You have no idea how thrilled we are and how much this frees us up.  We can now travel without a vent, we can do all kinds of things without dragging a bunch of heavy equipment around.  To celebrate we went sledding.  Deb and I had fun and we think Grace did too, however she doesn't seem quite so enthusiastic.


Grace takes sledding very seriously.  In fact, she is on the way to Vancouver to get in some practice runs before the Olympics.

Snow Day!

Here are a couple of pictures of Gracie contemplating the foot of snow we had last night. Don't ask Daddy what he was doing out in it, but lets just say that shoveling the drive last night was a complete waste of effort.

It's been a month since my last post, and we have quite a bit of news.  Grace is thriving, and is still a happy and contented baby.  She spends most of her time off the ventilator now, except when she is asleep.  We recently saw her pulmonologist and we are going to work on weaning her off her ventilator altogether.  We have reduced the settings at night and she seems to tolerate it pretty well, although we are noticing that she takes longer naps, so perhaps she is a bit tired.  She is a devil at pulling her trach out, so we have to watch her carefully.  She did it once in the middle of the night, luckily Deb woke when the sound of her breathing changed.  Scarily, the vent did not alarm at all!  Grace was pretty unconcerned and breathed well on her own.  We are hopeful that she will be off the vent by the end of the year, and might even have her trach closed as well.  

We also met with her general surgeon.  We are going to start the process of reducing/removing her omphalocele on March 8th.  He thinks it can be done without the pain and trauma of having tissue expanders placed, instead it will be a two stage reduction.  The first will be in about 3 weeks and he will reduce her bowel and leave her with a much smaller hernia.  Step two will be in about 6 months to reduce it the rest of the way.  The idea is that Gracie needs a little time to adust to have her abdominal contents back where they belong.  It will be a big adjustment and she may need the vent again for a while, but nobody really knows how she will do.  She is pretty tough and takes everything in stride, so we remain confident.

So it seems like we are going to have another busy year.  Two abdominal surgeries for Grace and hopefully a removal of her trach.  She may also have to have her tonsil and adenoids out prior to that and a bronchoscopy.  The tongue reduction is on hold for now, since she seems to have a lot more control of it.  She keeps it within her mouth a lot now and we are hopeful she will grow into it as many BWS kids do.

On a sadder note, Grace's little friend Hope is back in the ICU after some complications from "routine" testing.  It was touch and go for a while but she seems a little better in the last few days.  Our thoughts and prayers are with Hope and her parents.

Worthy Cause

Incidentally, if you would like to donate to a worthy cause but the cost of the book is prohibitive (they're not cheap), the automotive safety program at Riley is accepting donations for the development of a new car bed for special needs kids.  We can't tell you how important that program was to us in getting our freedom back and allowing Grace to travel safely.  Many kids like Grace can't ride in regular car seats, so having some options is huge.  Please think about sending them a couple of bucks.   Riley Automotive Safety

Happy New Year!

We hope everyone had a safe and happy holiday season.  Grace rang in the new year without too much fanfare.  In truth it was a pretty typical night for all of us with the exception of a glass of champagne around midnight.
Christmas was good to all of us, and with the exception of a bout of food poisoning (don't ask) we had a good time.  For Christmas this year I made a little book of all of the blog postings from the previous year including pictures.  There are also a few pictures that were never published.  If you are curious, you can see it on the blurb website and even order one if you are so inclined.  Grandparents already have one on order so be patient and yours will arrive.  I have added $5.00 to the price of the book.  Any proceeds will go to Riley Childrens' Hospital Foundation.

Born To A Kiss...

By Tim & Deborah Wil...

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