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.

Wednesday, January 26, 2011

Thinking out loud......

Callie had a cardiology appointment on Monday and everything was great! Dr. Lacey said, it looks as if that upper pulmonary vein is still open. So, that means that possibly the stent that was placed in October is working and still in place. Which is AWESOME! But, at the same time brings a ton of emotion along with it.

Callie goes to California in March for another heart cath. At that time we will find out for sure if that stent did its' job. If it has, then that could possibly mean a very risky surgery for Callie to move that lower vein so it's not being compressed anymore. Then, after that she would be ready to have her GLENN procedure!!!

I'm happy that she might actually reach her Glenn but at the same time I'm scared to death. Yes, everything Callie has been through has been scarey. But, this procedure to remove that lower vein from being compressed is extremely risky for her due to the fact she has to be on the heart-lung machine. And for Callie due to her anatomy makes her exceptionally high risk. My daughter has came so far and did so awesome that my biggest fear is the unthinkable to happen, now. I've feared for Callie's life from day one but as she gets older I fear more and more because of the odds she is up against. There's not a worst feeling in the world than getting on a plane every 3-6mths and wondering if this is the time I might not return with my baby.

I hate to haveto write all of the above. But, this is the reality Will and I live in everyday. And at some point, it's time to be real with everybody in your life. I don't believe I have ever written a post like this before but now felt like the right time. Sometimes, I feel as if people don't get it and don't realize just how serious Callie's heart defect is. We don't travel to California all time because we choose to, we do it because WE HAVE TO!!

Despite my fears, I have all the faith in the world that the Lord will continue to carry Callie through her journey and continue to help her surpass every obstacle, that she may be faced with. As for me, I will continue to be the best Mom I know how to be and be by her side every step of the way.

I plan on posting some new pics very soon:) I know some of you have been asking and I'm sorry. I've been slacking! Very soon, promise.

1 comment:

  1. Hi Callie
    My name is Jenna and I came across your site. U are an amazing brave courageous fighter and hero. I love your beautiful smile. I was born with a rare life threatening disease. My site: http://www.miraclechamp.webs.com

    ReplyDelete