After the diagnosis, Alaina’s factor VIII levels needed to go from <1% to 100% in order to go through with the craniotomy. Despite the surgery, the damage was too severe. Alaina passed away at 5 weeks of age. Her death certificate says, ” Immediate cause: Encephalomalacia, due to massive intracranial hemorrhage, due to Hemophilia A. We have a beautiful urn of her remains. A huge thank you to everyone who was by our sides during this time. A shout out to the Atlanta Ronald McDonald House and also our Air Force family for their support. Through this whole journey we were feeding and caring for sweet Amber who, because of this event, has had specialty hemophilia care since she was two weeks old.
I recently went to a pregnancy and infant loss “Circle of Love.” We talked about the stages of grief: denial, anger, bargaining, depression and acceptance. These emerge differently for each person. For me, I was in denial most of the time we were in the hospital with Alaina, I kept thinking the doctors would fix her and I could bring home a healthy child. I get angry when other people mistreat children and feel jealousy towards healthy children. I also still get angry at Hemophilia in general with Amber’s infusions and ER visits and struggles. Last summer around the 2 year anniversary of Alaina’s passing, I went through the bargaining stage. I went to the hospital she was born at, got all her medical records, read through them, consulted with nurses, doctors and lawyers searching for someone to blame. We once more came to find that it was no one’s fault. It was an insane set of rare events that the best experts could not have foretold. Depression.. well, that comes and goes, I pretty much just “MOM through it” and keep pushing on, I have a child here who needs me. I started counseling when amber was about 20 months. I actually didn’t go for grief counseling, I went because i was convinced I had ADHD (momming is hard, so many interruptions). It is very helpful, I still struggle with just getting overwhelmed and daily tasks, my doctor helps me with how to accomplish things. She was the one who pointed out that when I said I was feeling lazy and just had no motivation this summer, that it was getting close to the girls birthday (depression stage.) Acceptance came when we knew Alaina was in her final days and had pictures taken and hand prints made. When we got home everyone kept waiting for me to fall apart, and I didn’t and I wondered why and even felt guilty sometimes… but this I know to be true, Philippians 4:6-7 “Do not be anxious about anything, but in every situation by prayer and petition, with thanksgiving, present your requests to God. And THE PEACE OF GOD WHICH TRANSCENDS ALL UNDERSTANDING, will guard your hearts and minds in Jesus Christ.”