This blog is nine and a half years old. Well, not the blog itself, but the subject matter. Our daughter Chloe was born over nine years ago, and six weeks after her birth we learned she had a congenital heart defect. We have since learned that having a child with CHD (congenital heart defect) is a road trip we did not ask to take, one without a map and always on the verge of running out of gas, but it is also one we navigate willingly. Because this is our daughter, and we love her when the road is bumpy and when it is smooth.
Our daughter is beautiful, yes - big brown eyes and an enchanting grin. But is her heart? The name of this blog comes from chapter 5 of the book Walk on Water by Michael Ruhlman. It is a must-read for those touched by CHD, and an excellent book in general. This chapter ends with a mother standing in a hospital corridor, having just handed her baby over for open heart surgery. She is sobbing into her hands. Those of you who have been in that corridor - you know. We all hope for a beautiful heart. Not perfect, but functioning. That is beauty for us.
Her defect is called partial atrioventricular canal. It is also known as an endocardial cushion defect. In other words, her heart had 2 holes in it - one between the two atria and one between the 2 ventricles. Her mitral valve leaked due to a cleft. When she was 18 months, the VSD (ventricular septal defect, or hole between the ventricles) closed on its own. When she was three and a half, she had open heart surgery to repair the ASD (atrial septal defect) and the mitral valve. We were told after this surgery that her mitral valve was atypical in the way it was deformed and as a result very difficult to repair. It would leak again, we were warned. One year after her surgery, her cardiologist said she would need another surgery, but he would try to buy her as much time as possible.
Now it is time, and her second surgery is rapidly approaching. It is both hazily surreal and painfully certain. On October 27, 2009 she will yield to the surgeon's hands again. There are so many emotions factoring into this. But above all, we have hope, and that will be enough.
"But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
Thank you for caring about Chloe enough to follow her story. We will post more about her, her heart, and her upcoming surgery. We will also list prayer requests, answers to prayer, and glimpses into our CHD road.