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, August 22, 2012

The cutest ballerina ever....

Callie starts today and she couldn't be more excited:) Just thought I would share, how adorable my soon to be 5 yr old is!! Have a great day:)

Wednesday, August 15, 2012

1st Day of VPK

This was Callie's pose on her 1st day of VPK:) She was ready to go, it only took her a few seconds to warm up and she was was off. So, I didn't get any more pics:( I wanted to so badly but since she was doing so well, I didn't want to disturb her.....Maybe tomorrow I can get a few more pics out of her!?;) It is crazy to think that Callie is in VPK and in just a few weeks she will be the big 5!! She has came along way from the little baby that doctors worried wouldn't make it to see her 1st Birtday. Look at Miss Priss now!!! She sure has shown them what she's made of:) Such a strong, brave heart warrior. Mommy and Daddy are so proud of you sweet girl!

Friday, August 3, 2012

1 year....

1 year ago today, I was looking at my baby like this.....
And today, thank the Lord, I get to see this smiling face....
Callie had her 6th heart surgery a year ago today and then that weekend had her 7th and 8th heart surgeries that were only 12 hrs. apart from one another. Those were the most terrifying moments of my life to date and I can remember those feelings all too well. I was so scared for her life and crying out to God not to take my baby yet. In the moment of all the chaos it is hard just to say, " Lord I lay it all at your feet" but over the years of this rollercoaster we've been living on with Callie, I've quickly learned that is the only way to live. I am so thankful for the sovereignty of our God knowing he has everything in his hands. "For I know the plans I have for you, "declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future." Jeremiah 29:11

Wednesday, August 1, 2012

Pulmonologist...

Well, Callie had her appointment with the pulmonologist yesterday and to start with, I really, really liked the doctor. He had great bed side manner and listen to everything I had to say. He repeated a chest xray on Callie and also did a xray of her sinuses. The xray showed that her sinuses looked a lot larger than they should be which would indicate a sinus infection but she doesn't have any of the classic signs of a sinus infection...so he was a little thrown off by that. We talked about her espisode back in May when her white blood cell count was so high but chest xray looked great and they couldn't find anything in her bloodwork. He said, usually sinus infections don't elevate your WBC count that much, maybe a little but not as high as hers' was! In the end, he ordered a whole bunch of bloodwork on her. Retesting her WBC count, testing for different immune deficiencies (which I doubt she has b/c she would be sick all the time & shes not), also did an antibody test and various other tests. In Addition, he order the panel for allergy testing. He wants to cover all the bases to ensure we aren't missing anything which I appreciate. We completed all the bloodwork yesterday except for the allergy testing, it was just so much blood at one time for her. So, we will go back later this week to do the allergy testing. They are putting her back on antibiotics and treating her like she has a sinus infection for this current moment. We will repeat another xray of her sinuses in 6weeks. And it will take about 7 days to get the results of her bloodwork. Thanks for checking in and look forward to upcoming posts about Callie starting VPK and the 1 year anniversary of her 6th,7th & 8th heart surgeries!!