So, last week Nora was on the verge of needing a blood transfusion and the doctor wanted to wait eight days before checking her again. We ended up calling the hematologist and telling him our concerns about waiting so long. He wasn’t defensive or condescending like some doctors in the past have been when questioned. He answered our questions and when he didn’t know the answer he simply told us he wasn’t sure. We appreciated his honesty and humility so much. He took our concerns seriously and told us we could bring her in any time for a blood check if we felt nervous. This put us more at ease.
The doctor ended up being right, Nora was ok waiting the eight days until her next check up. On Wednesday I took her in for her weekly blood work. Her hemoglobin was eight and her hematocrit was 23, both transfusion level. Her retic was up over two, which was great since she hasn’t had much of a retic at all. The retic shows whether she is making her own red blood cells or not. Since it went up from 0.11 to over two we know that her body is starting to to make blood again. Unfortunately, her bilirubin went up too, which shows us that there is red blood cell destruction happening. Apparently, my antibodies are still circulating in Nora’s blood and killing any kell positive blood that she makes, which is why she needed another transfusion. The doctor decided to just do the transfusion that day so it was a LONG day, but we were relieved that Nora was getting the blood that she needed.
The nurse had to put the IV in her head again since her veins are so tiny and difficult to access. She was such a brave girl and didn’t fuss much at all. Besides when she got her IV, she was a very cheerful baby and all the nurses wanted to hold her and cuddle her. Here she is right after they put her IV in.
The transfusion went well and Nora seemed perky and pink afterwards. She will continue to be checked weekly by the hematologist. My goal is to have her completely over the antibodies by Christmas. Right now that seems like a long way away but in the grand scheme of things it’s not long at all…a very small price to pay in order to have our baby girl here with us. This past week was exhausting. All of the school year activities have started back and I feel like we are constantly on the go. We took Nora to church for the first time last Sunday and she did great! She was quite overstimulated by the loud music and flashing lights and people all around, but it was so fun to have her there with us.
Here are a couple more cute pictures from this week. Thank you for all of your prayers and continued support. I’ll try my best to keep you updated!