We arrived in CO to a brand new rental house that we found four weeks before moving. Nothing like leaving things until the last minute… Brian and I were already skilled in the art of last minute decisions, but life with Bethie truly refined our talent. The house was beautiful, my parents were there already and had unpacked all of our belongings, built cribs, and just generally prepared everything for our arrival. And to top it all off, it turned out that our landlords, who had just built this beautiful new home, were incredibly warm and friendly. They didn’t know about our special Bethie, but they and their family would come to know her and play an important role in her life and ours.
And then we began our life in CO. It was a happy life, full of uncertainty, but more full of love. Bethie was in palliative/hospice care from the moment we arrived, and her nurse was just as kind as the nurses we had left behind. (It is a remarkable person who chooses a career caring for chronically ill and dying children.) She continued to grow and live, for the most part, happily. She was not reaching physical milestones on time, she clearly was weak, but she was engaged and loving with us. She smiled, cooed, and laughed. She enjoyed singing, reading, and playing peek-a-boo.
We lived like this for five months, and then, one day, Bethie’s nurse asked us ever so gently if we had any interest in seeing the cardiology team at Children’s. She talked to us about how shocked they were that Bethie was still growing and doing well, and perhaps we wanted to have someone take a look at her to see if anything had changed within her heart, or if someone new had a different opinion. We said yes. She was a miracle, that much was clear, and who knew what miracles God might be capable of working within her heart. The team saw her and discussed her heart. Although some technical pieces in her heart had changed since birth, opinions on her quality of life and what surgical options were available were the same. But there was one name – one surgeon in CA who had pioneered something and might be able to help. We were told not to get our hopes up, that he would likely offer the same opinions as the other teams, but we had them send her records anyways.
On March 18, 2016, we talked with Dr. Hanley, and he told us, in no uncertain terms, that he could change Bethie’s life. He was 99.9% certain he could successfully perform a first surgery that would make her heart work more efficiently and improve her quality of life drastically. He was less certain, but hopeful, that he could perform a second surgery to fully repair her heart, giving her four chambers and a true chance at a long, good life.
You don’t say no to 99.9%. There was really no decision to make. There was just the waiting period until he could fit her into his schedule. She made it on the schedule, we booked our flights, and we waited with bated breath. We still lived every day knowing that we could lose her, but hope was really pushing its way into our hearts. Maybe he would be able to save her. Maybe we would be able to love her in our arms for longer. We booked our flights, planned my parents’ trip to CO to stay with Freddie, and we waited.
Two weeks before her surgery was scheduled, she started crying in her crib right after I put Freddie to bed.
And then she was dying. It was so fast; she had been fussier than usual, but showed no other signs of being sick. No fever, no cough… But she was dying. She and I were taken by ambulance to the local hospital, and she was then med-flighted to Children’s.