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, January 13, 2012

Day of Travel...

We have arrived in California:) We had 2 great flights, Callie was awesome on both flights. We were able to get into The Ronald McDonald House which I am truly thankful. If you come here enough, you know getting in this RMH can be a challenge at times!

Tomorrow is pre-op day! A day filled with echo, ekg, chest xray, blood work not the most exicitng day but hopefully we can make it short and sweet.

Callie is fully aware of why she is here this trip and it breaks my heart. She will tell me, "Mommy, I dont wana have another surgery!" What do you say to that?! But, we talk about it and how we are going to do fun things while we are here also and talk about her other heart friends who are having surgery. Callie finds comfort in the fact she is not the only one and I'm happy that helps her feel a little bit better about what she is fixing to have to go through once again.

One another thing I thought was kinda of funny, that happened in the airport at Jax today. We were just sitting killing some time and this man kept walking by us and finally stopped and asked, "Is she the little girl with all the heart problems?" Will said, yes! The man had seen her on the news a few times and I think he was kind of amazed to see her in person. It is hard to grasp at times that this little 25lb, 4yr old has had so many surgeries but looks so AWESOME she is truly amazing and the Lord gets all the glory for what a miracle she is.

With that said, many of you know we almost lost Callie twice back in August due to 2 aorta bleeds which resulted in 2 emergent open heart surgeries. I have never been so nervous to start this process again, at the same time I am very hopeful that Callie WILL GET HER GLENN and she will have a little break for a couple of years.

Please join us in praying for a great heart cath with awesome results that lead to Callie receiving her Glenn. With continue prayers that the Lord will continue to prepare her little body for this upcoming surgery and that she does OUTSTANDING:)

"For where two or three are gathered together in my name, there am I in the midst of them."Matthew 18:20

FYI- Callie's heart cath will be this coming Tuesday at 930am. That time could be changed but right now thats where we stand.

Thanks for checking in, will update tomorrow! Thank you again for all the support we are receiving from everyone, thank you just doesn't begin to describe what it means to us!( I know I say it ALL the time but we are so blessed to have so many great family and friends)

3 comments:

  1. I will keep Callie in my prayers (and you! I know how very stressful it can be as Mom too). We will actually be at Stanford all day on Wednesday - heart clinic in the a.m. and then an ENT appointment in the afternoon. So, if you need anything - a cup of coffee, a cupcake from across the street, etc. let me know and I will bring it to you! :) Hope it all goes smooth on Tuesday and the Glenn can be done!

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  2. Sending thoughts and prayers. Please give Callie a big hug from us. Love you guys. I am here if you need someone to talked too ANYTIME.

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  3. Sarah and Will:
    I will continue to pray for Callie! I also pray for strength for you because she will need you to be strong for her. I know that Lexie's heart surgery was the scarriest and most horrible week of my life so I can only image what you must be going through. Take comfort in knowing that you will soon be able to sit back and give a sigh of relief that this surgery is behind you and that Callie's Glenn has been successful and you are holding her in your arms on the couch at home- in Jax.

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