I think this is what I have been waiting for and dreading. I am not typically an optimistic person. I do not always see the glass as half full. I do not think I am a particularly negative person either. I certainly do not walk around all day, every day lamenting that the sky is falling. I believe in reality. And the reality today is that C will be going back into the OR May 25 for her second open heart surgery.
All along, from the very beginning, all I have wanted for C is for her to enjoy her life. Have fun, be loved and pampered. Hugged and kissed so much that so begs you to stop. To get a chance to be a "normal" baby, toddler, child, teen, young adult and hopefully more without having to constantly worry about what next. My biggest fear has always been that all she would know and remember would be pain and suffering. I have never wanted her life to be dominated by scary things and pain. I have prayed over and over for something very simple...please God, do not let her suffer.
C has been home with us for over 5 months since her TAPVR repair and Glenn. She has been happy and content. Until recently.
Unbeknownst to us, she has been growing insidious scar tissue from her TAPVR repair. Enough scar tissue that she now has pulmonary vein obstruction. Our first inkling that there was a real problem with her heart was 3 weeks ago at her cardiology appointment (well, that and her continually crappy eating which kept us going to the cardiologist and GI doctor). She was originally not scheduled to get an echo. Kevin insisted. C's cardiologist saw something of concern. We scheduled an appointment with the invasive procedures cardiologist. He scheduled a cath and C underwent that procedure May 17. He originally was not expecting to find anything big. He did think he would find some small issues and did prepare us for that. We were not as prepared for an immediate admit and that she needs surgery as soon as possible.
The shoe hit my head.
I am not mentally prepared for her to have to another open heart surgery right now. She was supposed to be good. No more surgeries until her Fontan around 2 years of age. She is not supposed to have two open heart surgeries before her first birthday. But, she will. Originally I was prepared for C to have two surgeries. She was possibly needing a BT shunt and banding. But she did not need it. She was possibly needing to have her TAPVR repair first and then her Glenn a few months later. But she had them both in the same procedure. So, really? Scar tissue? Seriously? Scar tissue?
There is really nothing that could have been done to prevent this. It just happens. Not exactly rare but not exactly common. Totally sucks.
I have already had my day of self pity. The day of my self pity I was not choosing to be positive, because damnit, this is not fair. But from now on I will be positive, scared out of my mind, but positive.
C was admitted to the hospital Monday on the hope that she could have surgery Tuesday. But, her surgeon has been and still is super busy with surgeries this week. Unfortunately, there are a lot more much sicker babies than C, and knowing that breaks my heart. So, in the interest of keeping us all sane, the doctors all agreed that C could go home until her surgery. Keeping us in the hospital on the chance of a surgery spot opening up was not doing any of us any good. However, keeping us in the hospital for a couple of days did prove to be the best thing since C swelled up like Jabba the Hut after her cath. The pressure building up in her lungs because of the vein obstruction, plus the blood flow going to her lungs from not one but two sources (her pulmonary artery is still connected to her heart) has been causing tons of fluid build up and pressure build up in her Glenn. C is on Lasix now and has gotten rid of pretty much all the fluid.
We all got home Wednesday and have been trying to have as normal a life as possible until next week. C missed home. She missed her brothers. She missed everything about being a "normal" baby. I pray that she will return home with us once again so she does not have to miss any of these things permanently.