We had our 2 week check up with the pediatrician on Monday, July 14th. It was the first doctor's appointment that I felt like we had a "typical" baby. Dr. Denton checked his weight, height, head circumference and oxygen level. He weighed 9 lbs. 11 oz. and was 22 1/2 inches long. His oxygen was 90-92%. Dr. Denton said everything looked great and she would see us back for our 2 month check up. We are having to go back to the pediatrician in 3 weeks for a weight check. One of the signs if Jack's heart beings to fail is weight loss and decrease eating, so we have to stay on top of his weight gain and food intake.
We had our first cardiologist appointment with Dr. Pearce, since he told us of Jack's heart condition in the hospital on Tuesday, July 15th. Brian's mom and step dad and Betty Bell came with us to the appointment. I was really thankful that other people were able to attend the appointment with us. Even though I know a lot about the human heart and body, it is so different when it is happening to your own child. I was so thankful that Betty was able to be there, too. She has the knowledge to help us make the tough decisions coming up. The appointment went pretty well. All things are good. They repeated the EEG and ultrasound. His weight was 10 lbs. and his oxygen was 94%. The EEG and ultrasound showed us something different. It turns out Jack has L-TGA (which is also known as congenitally corrected transposition of the great arteries, or CCTGA), rather than D-TGA. This difference means, we think, that his right and left ventricles are also swapped. So, rather than having the pulmonary and aorta swapped, his whole heart is kinda' swapped, which is, so it seems, kind of a good thing. His body, essentially, 'corrected' the transposition to a certain extent. The surgical options are still likely the same, although there may be a new surgical option available (called the Double Switch Operation), which (a) we don't know if he is a perfect candidate for, (b) is somewhat more complicated and maybe risky, (c) likely requires more revisions over the years, such as replacing tubing or inserting of an artificial pacemaker, but (d) may have better long-term results because rather than temporarily fixing the problem (as the originally proposed surgery would do by allowing a single ventricle to pump blood to the entire body, thus wearing down that single ventricle over the years), it is actually an anatomical correction whereby the ventricles would be functioning closer to the way they should. But like I said, we don't know yet if that is a possibility or not. For now, we are in a waiting game for one of the surgeries. They are going to keep putting it off so long as he continues to do well. Dr. Pearce said he thinks UAB could perform the originally proposed surgeries (called the Glenn and the Fontan), but we have been looking at other options as well. We asked Dr. Pearce to send our records to Dr. Briebart (a cardiologist) and Dr. Mayer (a surgeon) at Children's Hospital in Boston. Brian spoke to Dr. Briebart yesterday and he is going to call him when he gets Jack's records.
Overall the appointment went well. I don't feel like I know anything more than I did before going. I still feel like we are in this limbo land. The toughest part for me was that Dr. Pearce could not provide me with any long term data. He would only go through Jack's life up until about 25 years of age. This was hard to hear. I think I am most scared of death. I feel as though I have experienced enough death in my life for now. Making it through my mom's death was the hardest thing I have ever done, and I don't want to experience those feeling again...not with my son!!
Friends and family remind me that a lot can happen in 25 years...and that is comforting!! It is amazing what changes are happening in science, especially with the heart. But the not knowing is very hard for me. I had a friend tell me that I have to give Jack over to God...He is in control of him and his precious little heart. I know that I have a God that is greater than any doctor...that is greater than any diagnosis...and that is greater than any love I could possible have for my child!!! I have to take comfort in that!!
