Two years ago today Bea underwent her first major surgery - the Kasai surgery.
This 8 hour procedure was the only way to truly know if Bea, in fact, had Biliary Atresia. There were indicators through blood work, tissue samples, liver biopsy, etc but the only real way to know if someone has BA is to open them up and look in their belly.
And that’s what they did.
At just 10 weeks old, Bea went into surgery on March 13, 2015 at 7:30am. It was her 5th day at the hospital when just a few days prior we were sent in for weird lab numbers and there we were, getting ready to have our baby cut side to side to figure out what was truly going on.
We baptized her the night before in her hospital room upon the suggestion from my Dad. I had a really emotional conversation with him about how if something were to happen to her, we wanted God there ready with open arms. I’ll never forget leaving the hospital for an hour to run home, shower, put on decent clothing and stop into Castle House to get a baptism gown. I walked in and could barely see I was crying to hard. They were beyond kind, helped me pick something and we were on our way back.
There were only allowed 4 people in her hospital room at a time so it was Jordan, me, Father Ed, and Jordan’s brother flew in from Denver. My younger sister (who is Bea’s Godmother) was with her 6th grade class coming back on a bus from DC and we didn’t have the heart to tell her what was going on until she arrived the next morning.
We baptized her and had a quick meeting with the doctor who was going to preform the surgery. She walked in, sat down and said, “Hi...my name is Maria Alonso and I will be performing the Kasai surgery along with Dr Myron. And....I think we are neighbors.”
Dr Maria Alonso is the Surgical Director for Liver Transplants. We had moved into our house just a year before. And she lives like 5 houses down the street from us. Not only was she the most qualified person to be performing this surgery, she was kind, thoughtful, and just a badass. There is no better way to describe this woman than just a total badass. And the best part is? I don’t think she knows it :)
So we slept well that night knowing Bea was in the best hands possible. We woke up early and after we got her prepped and wheeled her back, they escorted us and our families to the waiting room where they gave us an update every hour. The first call we got was to tell us that yes, Bea had Biliary Atresia and they were going to move forward with reworking her plumbing to help drain the bile (prolonging a transplant).
When they called to confirm she had BA we both just looked at each other and cried. Although we both knew that she likely had it, at your most desperate moment you still hang on to a sliver of hope that this was all a mistake. Maybe a mix up. You hope that they open her up and say “ah - everything looks great.”
Sounds crazy but our hearts were just so heavy when they confirmed.
After 8+ hours, she was out of surgery and we spent the next 7-10 days (it’s blurry) in the hospital before sending us home. Those 7-10 days we held onto the hope that Bea’s Kasai worked and her bile would drain. As we all know - it wasn’t a success and we landed back in the hospital just 10 days after being home to start the road to transplant.
Although the Kasai wasn’t a success, I think it was for the better. Sounds crazy, right? But if the Kasai worked, every year I would be wondering “is this the year Bea is going to need her transplant?” The wondering and the anxiety associated would just be too much.
I think the Kasai surgery prepared her for the bigger surgery she would have just a few months later. We learned a lot about her pain tolerance, how her body reacts to different medications, we become comfortable with the hospital, it’s resources, etc. AND we now had a neighbor we knew was in our corner.
It prepared us for the transplant and for that - we are grateful.
“One day she finally grasped that unexpected things were always going to happen in life. And with that, she realized the only control she had was how she chose to handle them. So, she made the decision to survive using courage, humor and grace. She was the Queen of her own life and the choice was hers.”
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