Learn About Callie's Journey with CHD

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Callie was born with an extremly rare, complex congenital heart defect, Hypoplastic Right Heart, Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis. Currently she has had 11 heart surgeries,15 heart caths & over 30 blood transfusions.All of her surgeries have been performed at Lucile Packard Children’s Hospital in California by one of the best surgeons in the world, Dr. Frank Hanley.This blog is dedicated to her and her journey as a survivor with Congenital Heart Disease.Her battle is by no means over but we take one day at a time and rejoice in ALL the good times. Please join us in praying for our sweet girl.

Friday, July 29, 2011

Go Home?!

We arrived in California yesterday afternoon, Callie was a superstar on all the flights. Couldn't have asked for anything better!

Currently we are staying in a hotel waiting for a room at RMH to open open:/

Early this morning we had our meeting with Dr. Hanley to discuss the plan for Callie's surgery on Wednesday. The plan is to remove both of Callie's central shunts she have a replace with 1 shunt. And then remove the aorta of her lower left pulmonary vein. Doing this will hopefully prepare Callie for her Glenn in 6mths. The BIG thing with this surgery is she HAS TO be on bypass!! As most of you know, Callie has never been on the heart-lung machine with any of her surgeries. Dr. Hanley has always tried to avoid the machine due to Callie's complex anatomy and the risk it holds for her. But, this surgery has to be done on bypass there is no way around it. I am scared about this but know he would never do anything that he didn't think her body could handle. Please pray for her and that her body tolerates this well and she comes off of it just fine and there are no complications. All in all, it was a good meeting. Callie continues to head down the right track and this is one more step to her much needed Glenn.

After our meeting, we decided to take Callie to the Monterey Bay Aquarium.
Will and I have been before but Callie has not and we knew she would love it:) Her favorite were the penguins! We had a nice time just taking our time and enjoying the day with Miss Callie. The weather was much cooler there than in Palo Alto which was nice!
Callie and Daddy at Lunch
Mommy and Callie at the Aquarium
We are enjoying the next few days with Callie before she goes into surgery. So, yes she continues to be spolied rotten;) Callie has been asking since when arrived, "home, me go home" She misses home already and we've only been here a day:( Poor baby, she doesn't understand. It's so hard, but we are doing are best to keep her occupied:)

So, pre-op on Tuesday at 730am and surgery Wednesday.

I will continue to update on our happenings!


  1. I don't know if you remember us, but we were in the RMH with you and then saw you in pre-op maybe a year ago or so (my daughter had a heart transplant at LPCH).

    Callie has grown sooooo much! I hope things go well with the surgery on Wednesday. I know its never easy and it must be especially hard when you have to travel from so far away. We are taking Mackenzie (my daughter) to Monterey Bay Aquarium on Monday! So, it was nice to see these pics. I will keep Callie and you all in my thoughts and prayers this week!

  2. I have never met Miss Callie but be sure that I will pray for her and her mommy and daddy.

  3. Sarah, I've been praying my fool head off leading to this day and will be doing the same tomorrow and during Miss Callie's recovery. Huge hugs to all of you, and a special hug and kiss from the 'boy' :-) Jen, Greg, Jack and Katie xoxoxoxox