This is a day late because I took most of Day +10 away from the hospital. I slept at the hospital on Friday evening and left around 5:30am on Sat morning to drive to San Diego to take my Neonatal resuscitation class/exam. During the previous week, I had to pass online exams before I could take the class. I am thrilled that despite all I have going on here that I was able to complete the course! After the class, I drove back to the hospital and spent the evening with Naomi. I am so exhausted and it will take days to catch up on sleep, but it was worth it. I did feel quite guilty leaving Naomi alone most of the day. She had games, and crafts and all kinds of things to keep her busy though. So, it was self-imposed guilt.
Naomi had a volunteer visit with her so that she was not alone. I understand that he was a young man who was very musically talented. They played on the piano on the iPad and then did some crafts. I do not know who he is, but I am thankful for the time he gave Naomi. While I was away, Naomi talked to Aaron, Micayah, Malakye and Niamh on Facetime and had consistent access to me on text message.
Day +10 began with her first blood transfusion since the transplant. Her hemoglobin was down to 8.1. I knew that transfusions after the transplant were likely, but was secretly hopeful they would not be necessary. Once again, my unrealistic expectations have let me down!
She is eating fairly well because she wrapped me tighter around her finger….. I am now bringing most of her meals from outside the hospital. I am thrilled that is allowed, but it does take longer to get in here trying to figure out what she will eat and when to make it or where to get it! All in all, things are well. We are beginning to be more impatient and anxious. We now get her white blood cell counts each morning on her lab reports. It is gut-wrenching to see no ANC day after day. I really hope we start to see some improvement soon. We are still absolutely within her dr’s expectations. We had been told that it could take up to 25 days to see cell growth. So, we continue to be prayerful and faithful.
We thank you all for continuing to cheer on the Lioness. She sure is brave. The nurses here all rave about her still eating and say that NO child with a BMT ever goes this long without a bag of nutrients. The fact that she is still eating and not on a feeding bag is amazing. I wish I could say it is all her, but in reality, I need to give myself a lot of credit for going out of my way to bring her the food she will eat. I also need to give everyone who gave donations credit because without your generosity, we would likely be without a vehicle, short on food, and maybe Aaron would have 5 kids and me none because I would not be able to afford a hotel. We are truly and humbly thankful to you all.
We press on through Day +11 with pride!
We are all with you every day keep the faith
Thank you, Linda! Hardest days of my life right now.