Five-Year Plan

August 29, 2019

“Now that Audrey is out of the womb, we got a better look at her heart. Her condition is much worse than we thought. She doesn’t have a heart defect. She has four heart defects.” the surgeon said.

He continued, “We knew about the Transposition of the Great Arteries. She also has an anomalous vein. One of her veins is just floating in her lungs, but we aren’t going to worry about that. She also has VSD, which is a hole in her heart wall. The hole normally closes during fetal development, but Audrey’s didn’t, so it will have to be patched.

She also has a leak in her pulmonary valve. This is a problem because we don’t like to do valve repair until a child is at least six months old. The tissue is so fragile at this age that it would be like sewing two Kleenex together. If the leak is bad enough, though, we have no choice but to attempt the repair. This presents another problem. If we have to do all three procedures it is going to be at least a five-hour operation. If it goes that long, I need you to know that there is a good chance she will never be able to come off the heart and lung machine.

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There is also a problem with the Transposition. Your daughter’s anatomy is unique. It is as if all her vessels stopped growing and just attached to the closest thing they could find. So, her aorta and pulmonary artery do not attach where they are supposed to. We might have to stretch the tissue so far that it would tighten the arteries to a point where no blood could flow through them.

I don’t have any experience with this condition, and I’m not comfortable performing the surgery, so I consulted with the Chief of Surgery. He is going to do the operation, and I’m going to assist.”

For the next few weeks after that meeting with the surgeon, we learned more about her condition, and none of the news was good. None of that was part of my five-year plan for Audrey. Even after we learned about the first heart defect during a sonogram, we thought it would be one open-heart surgery, two to four weeks of recovery, and then off to a normal first five years with Audrey. After the meeting with the surgeon, I didn’t think she would be here in five weeks, much less five years.

I can’t count the number of times someone has asked me for my five-year plan. I don’t think I have ever ended up anywhere close to where I thought I would no matter how hard I tried to stick to the plan. So, I don’t make five-year plans anymore.

Audrey knows how to pack a lot into five years.  Some days were so hectic, I would look up and it was already next week.  Some moments were so intense that time seemed to stand still for days. Measured in days, her birth seems like yesterday.   Measured in moments, it feels like she was born during the Paleozoic Era.

I’m going to keep reminding myself of that meeting with the surgeon so that next time I start to feel down because she still has a feeding tube or isn’t responding to sign language as fast as we wanted, I’ll remember that it could be a lot worse.

Thank you, Audrey, for not following my plan. Your plan took me to a place better than I possibly could have imagined. There is no way I could’ve even dreamed about this being our plan when you were born.

I’m not going to make a five-year plan with Audrey. She will probably surpass anything I could possibly imagine anyway.