Today was our first visit to MUSC. At our appointment on Tuesday, Dr. Shuler asked if we would be interested in going to learn and see more. We called him yesterday morning to let him know we'd definitely be interested in going and within an hour, I had an appointment for this morning. I had another echo done at MUSC which seemed to be a little more detailed. We learned a lot about the details of our daughter's specific condition. It was very informative and inspirational. Dr. Eric Graham, a pediatric cardiologist who specializes in HLHS, met with us to review the echo and then spent at least an hour and a half talking to us and giving us a tour of the Children's Hospital. It was sort of fun to be shown around in places normal visitors can't go. We were taken into the ICU where our daughter will stay for at least the first week to two weeks after her first surgery. It was a little overwhelming at first. This ICU is only for cardiac infant and pediatric patients. So, there are an insane amount of machines hooked up to these little babies and beeping constantly. It was comforting to know that our daughter will have one nurse that will stay by her side all the time. We did see one baby that is about to go to the "floor" that was in a bouncy seat on his hospital bed. I loved that! Finally seeing a heart patient do something normal babies do was very comforting for me. Scott and I were so encouraged to see the pediatric cardiothoracic surgeon, Dr. Bradley, in there very closely monitoring a baby who had just had surgery this morning. It really made us feel good about the man that will be responsible for replumbing our daughter's heart. He was very hands on even after the surgery and it was obvious that he cares greatly for his tiny patients. Dr. Graham, too, was wonderful and very personable. We needed to receive some hope from the medical side and today we really feel that we were given just that. Dr. Graham focused not only on what she will go through medically but the quality of her life. We were very encouraged. He did mention that she shouldn't try out for the NFL but I told him that I wouldn't allow that anyways. Of course, Scott looks at me like "well, if she's anything like you she isn't going to do any contact sports anyways". Exactly! My dad had to bring up the time that I broke a nail at the age of 6 and quit basketball. I hope she is a girly girl for what that's worth. But, with a big brother I am sure she'll be able to stand her ground, too.
We are so thankful to have family and friends who are so diligent in prayer for our family. Please continue to pray specifically that her heart be healed. At least after today, we have peace and confidance in that route if it is necessary. Please pray that her valves continue not to leak and stay strong. She needs to weigh at least 6 pounds and have non-leaking valves to make her a good candidate for surgery. We pray that she surpasses those criteria.
We will be returning to Dr. Shuler in a couple of weeks.
"I'll praise You in this storm and I will lift my hands. For You are Who You are, no matter where I am. And every tear I cry, You hold in Your hands. You never left my side and though my faith was torn. I will praise You in this storm." Thank you, Jesus, for hope today.