Open Heart

A baby's heart is about the size of a walnut

I don't want to think about what happened to my baby girl just last Friday. Some day I will share details, but for now you can Google truncus arteriosus repair yourself if you want the technical information.

A quick family photo before
surgery

I can tell you it was a hard day,  made better by good news and love. Todd and I met Clara in her room very early in the morning to spend a few minutes together. We followed the surgery team and our baby to the entrance to the OR, we got to quickly kiss her goodbye, and then we were left alone to have a small breakdown. My husband and daughter are such strong people, and I can't imagine how I would have survived that morning without Todd there to pick us up.
They gave us a pager since I had to go back and forth to my room at the University for blood glucose testing and medicine doses. They advised us we wouldn't hear anything for about an hour and a half, and that should just be an update when she was successfully on the bypass machine. We had not slept the night before, and Todd had planned to go home but did not make it because it was such a late night, so he left to go shower and clean up. My parents and sister came up to entertain me in his absence.
The first update came through as planned-she was on thy bypass machine and doing well. I had to go find a nurse to help me read the message on the pager as I realized I had never actually used a pager. Once I was free to leave again, we went to the waiting area for the OR and commandeered a corner. We met with a social worker and had a visit from my mom's friend, a hospice nurse who happened to be in the building that day. We got the next update that the repair portion of the surgery was almost done and Dr. Burch would be by to see us in about an hour. Slowly, Todd and I started to catch our breath as the good news continued to flow in.
Dr. Burch finally made it in to give an update. He had been able to successfully place the pulmonary artery piece needed, despite it being 13mm instead of 12mm like he wanted. The repair had all gone well and she was stable. He also mentioned (so casually!) that she did not have a thymus and was probably missing her two lower parathyroid glands. In my previous research of 22q, this condition had been somewhat common and would impact her immune system, but seemed treatable. I focused on his message that all was well, and that Todd and I could see her in about an hour.

Post Surgery, with all her tubes
and a cover for her chest

After talking to Dr. Burch, my sister did some quick internet research and felt that she was seeing the same thing-a missing thymus meant some extra work, but that was about it. My family left and Todd and I were free to go see Clara!
She was quiet and calm, and covered in a million tubes and a shield for her open chest. She was puffy from surgery and we were barely allowed to touch her because of the impact on her blood pressure. But she was safe! She had survived open heart surgery at the age of just 3 days old and she was marching forward.
Todd and I spent the evening visiting the cafeteria (For 5 days, I hadn't been out of my room except to go see Clara and wait in waiting rooms, so this was more exciting than you'd think!) We hugged and cried and visited our baby again and just let the relief wash over us. This was the first big hurdle to get over and it had gone swimmingly!
Late that night, after Todd left, I started to do some research of my own on Clara's missing thymus gland. Never in my life had Google let me down so completely. I found out a lot about how the thymus works (it produces t-cells that fight infections. Most of us produce enough that by the time we are adults, our thymus has atrophied because it is no longer needed) but the information on missing thymus was...scary. For people that lose their thymus or have it removed at some point, their risk is somewhat average-if they have enough t-cells, they may just have to be extra careful of germs. But the only information I could find about people born without a thymus entirely was terrifying. Without a transplant, which was still experimental, these babies would not live more than a year or two. Or, maybe, they could live in a sterile environment like in a bubble inside a hospital. I thought I was seeing the most extreme things, as is often the case with the internet, but I tried and tried to find more information and the links kept pointing to this same information.
I spent the rest of the night getting almost no sleep. I cried and cried and tried to hide my crying when the nurses came in every few hours to give me a pill or check my vitals or measure my pee. I was coming apart and didn't know how to find comfort. I knew I could call Todd, but he literally had not slept or eaten much in days and I needed him to have at least one night to reboot and regain strength to help me through the next big hurdles coming our way. And if I had called my mom, I know she would have run right back (she even tried, when we had talked on the phone and she could tell I was not doing great. I told her it was just postpartum weepy and I was fine). My dad had been out of town a few days and I knew she also needed some time with him to relax. I spent time worrying that my Clara had just a few years and my heart broke over and over. I finally had the nurse get me a sleeping pill and rested for an hour or so. I couldn't process this information and would wait for help.