Well, we went in for Callum’s seventh blood transfusion on the Friday before Thanksgiving and ended up leaving the hospital without one! When we arrived that morning for the transfusion they inserted his IV and had his blood drawn to check his levels and we were happy to find out that his levels had gone up just a little bit on their own! His hematocrit and hemoglobin the Monday before had been 25.7 and 9.1 and on Friday they were 26.6 and 9.3. It was the first time in his life that he had brought his counts up without a blood transfusion so we were elated.
His hematologist checked his blood for my antibodies and it came back completely negative! I was surprised by how emotional I felt when he told me Callum’s antibody screen was negative. My baby was finally free from my dangerous antibodies for the first time in his life. He can now make his own blood and it won’t ever be destroyed by my antibodies again. It has been a long hard road to get my boy to safety. We did it! They removed his IV and sent us home without a transfusion.
We came back a few days later to check his counts one more time right before Thanksgiving and his numbers had BARELY gone up. His hemoglobin was the same (9.3) but his hematocrit had gone up from 26.6 to 27 so we were cleared to leave the state and visit family in South Carolina for Thanksgiving. We had such a great Thanksgiving with everybody. Callum’s Grandparents got to hold him for the first time and his SC aunts and uncles got to hold him for the first time without monitors and wires attached to him.
Yesterday I drove the hour to Children’s of Alabama for the last time to have Callum’s blood checked by the hematologist. His levels had gone up again on their own! His hematocrit was up from 27 to 28.4 and his hemoglobin was up from 9.3 to 9.6. We were officially released from hematology and we never have to check his counts again!! Thank you God, for this amazing gift.
Driving home from the hospital for the last time with my healthy boy in his car seat was redemptive and beautiful but bittersweet. This is how Lucy’s story should have ended. If she had been given the right monitoring and treatment like Nora and Callum, then I would have driven home one day in 2013 with my healthy baby girl in her car seat and our lives would have been completely different. Our family would be intact, our hearts would not be irreparably broken. Nora would grow up with a sister. Liam and Asher’s childhoods would not be marred by this tragedy. So many shoulds and woulds, and though I rejoiced that we were done, my grief noose tightened just a bit as I drove home with my healthy rainbow boy. But I also think about the other babies who might not be alive if it weren’t for Lucy and this blog. How many other lives would be devastated by tragedy if Lucy had lived? I’m reminded of a song I heard one day while driving to Atlanta for an ultrasound. It’s by Judah and the Lion and the lyrics bring me to tears every time I hear it.
And I’d take it all back, take it all back, take it all back just to have you.
Just typing the words makes me tear up. The words surge all the way down into this deep part of my soul, the part that still desperately wants to save my daughter. I think about the question, “Would I take it all back just to have my baby Lucy?” My mother heart would do anything to have my daughter back, to keep her alive. I would take it all back just to have her. But I also know that I couldn’t possibly make that choice knowing now what her life and her death have meant for other families. I am comforted knowing that God is in control of every little detail of my life and Lucy’s life and I don’t have to make these impossible, hypothetical decisions. But I still feel a deep ache knowing that Lucy’s story could have ended like Callum’s and the treatment that could have saved her was out there all along. Even with such angst in my heart about what happened to Lucy, I am flooded with relief and joy and gratitude knowing that Callum’s story will end differently.