I received a carbon copy of a letter today from the cardiologist to the pediatrician. The letter was discussing Parker's last apt with her. In it she mentioned that his last echo (like an ultra sound of his heart) showed mild pulmonary stenosis. This is super common to have after the Arterial Switch Operation - but if it gets severe doctors have to intervene. There are different things that can be done ranging from catheters to another surgery. It's fixable is what I am saying.
I can reason through all of this - but it just opens this flood gate of all of those emotions and feelings again. The fear. .... It almost has a taste. I remember being pregnant and thinking if I could just make it go away for even an hour. Even sleep didn't help because I would dream it. I guess I believed that after the surgery we would never have another issue again. I know that's not true. There are all kinds of little things that can be problems here and there. I guess I should have prepared better.
The pulmonary stenosis is not a huge deal, nobody be worried. It's just that when I read it, I remembered every little detail all in one second. I read it and remembered how the walls just closed in that day we found out.
We were going back in for a second ultra sound because "they did not get all of the views they needed" at the last one. I have since found out from lots of women who found out about their child's heart defect during an ultrasound that this is what they all say. However we were totally unsuspecting. The nurse looked for a long time and finally said that she was going to go get the doctor to come look...still no worries from us. Jon and I were laughing about how much money this was costing. The doctor, Dr. Sabbagauh came in and he and the nurse were talking quietly over my stomach. I heard "big hole" and "where is the aorta". I remember looking at Jon and thinking "do something!" "change it!". He was just as powerless as I was. We were totally blindsighted. I didn't even know if I should cry. How bad was this? The doctor patted my foot and I started to cry a little. When he started talking about Down Sydrome and defects I realized. He said "You are a smart woman - you know what this all means". But I didn't know.
They left us alone for over an hour while waited for a real cardiologist to come in and do an echo and give us an actual diagnosis. For an hour we just sat and cried. The room was too small. It was too hot. My clothes were too tight. There was not enough air. And at that point I did not think I could take another breath if there HAD been enough air. To say it was the worse hour of my life is an understatement. There are no words.
Finally Dr. Cuneo (still my favorite doctor even though we only saw her this once) came and got us. She told me to go use the rest room and I remember being alone in the bathroom and mouthing "PLEASE let him be ok" "PLEASE" I must have said it 50 times. I needed it. I knew I would not be ok if something happened to him. I already loved him and I already needed him. The thing is - I didn't know how much until that moment.
Dr. Cuneo had a wonderful way of telling us about Transposition of the Great Arteries. I felt so much hope after talking with her. It was like being starved for hope during that hour we were waiting. Jon and I just needed SOMETHING to grab hold of. When she gave hope to us, it was like finally getting water. I felt physically full again. I left not feeling empty. Not feeling like I was missing something. I felt like it was going to be ok.
It was such an overwhelming day.
So you can see why my guard is up. I do not want to be blindsighted again. But I don't to spend my whole life worried and on edge either. It's tough to find the balance.