More ups and downs...

When Wesleigh Anne was first born, Trey and I really thought that her diagnosis of Down Syndrome was the worst of the news...after all, this is 2009!!! Surely, the doctors could fix a heart defect that was described to us as "best case scenario...as far as heart defects go". I mean, they fix these things a thousand times a year probably, right??? WRONG! We now know that the Down Syndrome is absolutely nothing to be concerned about compared to what we are dealing with with Wesleigh Anne's heart. After all, I can be persistent with Wesleigh Anne's education and therapy and help her have significant improvements in her development...I cannot fix her heart. And, while we are still confident that Dr Bradley (our surgeon), Dr Forbus (our cardiologist), Frances (our FAVORITE nurse practitioner) and all of the amazing nurses at MUSC are by far the best people to take care of Wesleigh Anne's issues, we are starting to accept that maybe there is not a "quick fix" for this problem. Okay...so we're beyond quick fix...we are really grasping at straws for any possible solution. I mean, nobody thinks that two heart surgeries and two catheterizations before 6 months old is ideal...in fact it's downright scary and frustrating. While I appreciate everyone applauding our strength in this terrible situation, I must admit that while Trey is every bit as strong as he always is and has been forced to be strong because he has still been in public every day; I have been allowed to retreat into solitude, anger and fear. Let me be clear, I am thankful for every day that we have with Wesleigh Anne and I recognize God's hand in keeping her with us for this long. My anger is not directed at God, but at the situation. I will admit that "why us" is a common theme now when walking out of the cardiologist's office although I am quick to say that while I feel a bit like a punching bag right now, I do not feel that anyone else deserves to go through this ordeal either. So, maybe these ramblings will let you a little more into my mental state right now...

That being said, all of this is even more at the forefront of my mind because we learned yesterday that Wesleigh Anne will have a heart catheterization on Friday. THIS Friday...when we had plans to finally do something fun and go to Clemson for the weekend with the youth group. While I do not think that going to a football game is more important than my daughter's health, it was the first time that we were going to leave Wesleigh Anne for more than a few hours (with her VERY capable grandparents) to experience life again. Anyway...that's beside the point now. In this catheterization, they will get some better images of the inside of Wesleigh Anne's heart and measurements of the different pressures. This will give them a better idea of exactly what is going on in there and what our next step will be. Also in the cath lab, they will attempt to expand one of the ends of Wesleigh Anne's new valve graft that was placed in August. So, think of the graft as a straw with the valve in the middle. One end of the straw has narrowed and they will use an angioplasty balloon (like they do in adults who have blockages) to expand the area. The hope is that by explanding that area, the valve may regain some function and Wesleigh Anne may become more stable. Who knows if it will work, but I guess we will see. All we can continue to do is pray for a miraculous healing for Wesleigh Anne, strength and wisdom for her team and comfort and peace for us and our families. So...that's what we're doing...