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.