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, March 14, 2010

California...Again

I apologize for not updating lately, but I really haven't felt like it. To be 100% honest! Callie is doing okay. Hanging in there, I guess you could say. We will be heading back to California on April 9th. We've only been home just over a month. The first 2 weeks we were home, went great. Then, it was like someone flipped a switch and Callie's breathing got harder, she turned dark blue in her hands and feet again and her oxygen returned to the 60's awake. Exactly, how she was before the trip in January. She is also struggling to gain weight, she has shot up in height and her body can't keep up. Her appetite hasn't been the best latley, either:(

Will and I have been very stressed the past few weeks, just hearing Callie and how loud her breathing is, stresses us out. Being so far away from the one place that gives us hope and is capable of dealing with Callie, is very hard. We wish so much that we lived closer to California. If we are ever able, we will definitely be moving closer or to California. We can't ever get settled, when we haveto pick up a travel back to California every 2 seconds. Just like, we looked into buying a house, to take advantage of first time home buyer credit, etc. But, we soon realized we just aren't able because we never know what is around the corner with Callie, which makes our financial situation to unreliable to make such a commitment as buying a house. Which is fine. All I want, is for Callie to be thriving, happy and healthy. I am very stressed about this upcoming trip because there is a very strong possibilty of open heart surgery. Which I am very scared about. Explaining how I feel, is extremly hard because there is so many emotions that go along with Callie's health, traveling and all the unknowns that lay ahead of us.

Sorry for venting but I am mainly lost for words because I really can't believe what my daughter continues to be faced with. It really is the hardest thing in the world and I would do anything for it NOT to be her! Since, the day Callie entered this world, my prayer has been for the Lord to heal her heart and I will continue to pray that prayer every night to come. That's what I hold onto, that miracle waiting around the corner. In the same prayer, I thank him for blessing Callie with her health and where she is today. Because there are no words that explain, how grateful I am for what the Lord has blessed Callie with because I know there are many children and have seen it first hand, who have a lot more issues (health wise).

Please keep Callie in your prayers, she needs everyone praying for her. As of right now, we leave on April 9th. Fingers crossed, it stays that way. But, if need be, we will leave sooner. It all depends on Miss Callie. Callie also has a donations account at Vystar Credit Union to help out with things. Account #: 702811982 Will continue to update with any changes.