I want to start out this post by giving my condolences to an IF mama. I read about a woman named Mo on another writer's blog and Mo lost her baby boy Nadav yesterday at 22 weeks. It is absolutely heartbreaking. I always cry when I hear about this; strangers or not. The IF community is a tight knit one and we all feel the pain when one of our sisters is hurting. I am so sorry, Mo. I am praying for you and your family.
Yesterday, we had Sully's monthly appointment with the cardiologist. I thought we were just going in for a routine appointment but we got an unhappy surprise when we remembered he had to have a chest xray. :-( Poor guy! He really hates those because he hates to be naked. And of course, this wasn't a normal xray that we were used to, oh no, this time, they wanted to look at his VSD (Ventricular Septal Defect; the hole) and for that, they had to look at the side. I had to strip Sully down to his diaper, then lift his arms over his head while they wrapped this plastic tube around him. He did NOT care for that. I actually ended up crying a little because I really hate to see him cry and in pain. I am going to have to build up my gusto because I don't want him to see me cry when we go in for surgery #2. As soon as they were done, I scooped him up and snuggled him for a few minutes. He is such a good boy and always stops crying right away. He just amazes me.
We were excited to see Dr. V again since he knew us from the first surgery. Once again, Sullivan is astounding doctors. We started nailing down a for sure date for surgery #2 and it is looking like mid to end of May. We are going to go down on a Thursday to have a CT scan and pre op, then Sully and I will stay overnight in the hospital and he will have the surgery Friday morning. They will have to re-crack his chest, but since he is growing up such a healthy boy, it looks like they can put the 12mm conduit in and that way, he won't need surgery #3 until he is between 7-13 years old; as opposed to 3 or 4 years old like we previously thought if they had to put in a smaller conduit.
This appointment went amazingly well. Dr. V quelled some of my anxiety. I put up a very good front sometimes, but to be honest, I live in constant fear. The shunt is has is just a temporary fix and we have to do so many things to make sure it works properly. Sully is on aspirin, we have to check his O2s multiple times a day, he sees the doctor like every three weeks... it is tiring. It is basically like living in limbo. We're holding our breath until this big hurdle is cleared. It was comforting to know that after this surgery, Sullivan will just be a normal kid! He will have no restrictions. He can play sports and run and jump and do everything that everyone else does. In fact, no one will be able to tell that Sully has a heart condition unless he tells anyone.
We spent the rest of the day getting an oil change and snuggling and cooking enchiladas for Robert.
Look at my little chef:
Master Chef Sully James!
Also, some of you may think this is mean, but Sully has about a million expressions and when I told him we had to go to get a chest xray yesterday, this was the face he gave me:
My poor little buddy! But how adorable is he!?
Have a good evening ladies and keep Mo in your prayers!
CourtneyAnna and Sully James