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.

Sunday, October 4, 2015

Black and white....why is it when you see something on paper, in black and white, it hits you this is real? Exactly how I am feeling, as this weekend I received Callie's paperwork confirming her upcoming trip to California which is for sure the 1st week of January. Even though, we have been doing this for 8 years now, it never gets easier. Sometimes I think, well No - am 100% positive I have more anxiety now about these trips then I did 8 years ago. Old age? Probably! LOL! And knowing what to expect and then there is the worry of the unknown.

 January she will for sure have her heart cath to see exactly where she stands. And she has a surgery date schedule in case she needs it. I tried to say, " Can we just schedule the cath and then worry about surgery if she needs it?" But, they wanted her to have a surgery date already in place :-/ Which I totally understand why but hate seeing those words on paper. As would anyone.....not easy.

Callie does need her next stage of surgery. When will that be, only God knows - could be January, could be 6 mths from then or a year from then. I just want a good cath report and to hear she is on her way to having her next stage at some point in the future, I really do not want her to have a surgery in January but that we will just have to wait and see. I was reminded today in Church today, we cannot control what life throws out us - while I know this. I needed the reminder, all I can do is remain strong, face it head on and put my hope in God. It's a struggle for sure because I want to control it all but the truth is, I can't control any of it - its all in his hands. I have to remind myself of this everyday, sometimes every hour and the moment I send my child into that operating room, I have to remind myself of that every second and pray like crazy.

Miss Priss is doing simply wonderful, so very grateful! She had her 8th Birthday in September and is loving school.  She cannot wait for Halloween so she can dress up :-)