Today our Nora Juliet is one month old! We are so thankful for the gift of one whole month with our daughter. I know many parents don’t even get that much time with their children. This will probably (once again) have to be a quick blog post. I have a small window of time while Nora naps and Josh has the boys outside eating ice-cream before they go to bed.
Nora has been monitored by her hematologist in Birmingham and hasn’t needed a transfusion yet. Since it is an hour away, the hematologist decided to let our regular pediatrician here in Tuscaloosa do her blood work every week and send him the results to analyze. Every week her hematocrit and hemoglobin have slowly fallen but this past week they took a nose dive into the danger zone. Dr. Moise’s protocol is to transfuse when the hematocrit gets below 22-24 and the hemoglobin falls below 8. Yesterday Nora’s hematocrit was about 24 and her hemoglobin was 8.1. The pediatrician called and told me that he had sent the results to the hematologist and he had said the numbers looked fine and Nora could wait another week before being checked again. I got very uneasy about this. Nora was right on the verge of needing a transfusion, her numbers were plummeting and we were going to wait a whole week to check her again?! I decided to call the hematologist sometime today and tell him I felt nervous about waiting but before I had a chance to, I noticed that Nora did not seem to be feeling very well. She turned very pale and her gums were white. You can tell a difference in her coloring from yesterday to today.
She wouldn’t breastfeed and started screaming uncontrollably. Nothing I did comforted her and after a few minutes of hysterical crying she started grunting and struggling to breathe. She turned blue around the mouth and was really having a hard time breathing. I freaked out, grabbed my phone and then wasn’t sure who to call. I started to dial 911 but right before I pushed the last 1 she calmed down and started breathing ok again. She acted normal again but I was shaken. I called her local pediatrician and he brushed it off, saying it might be “colic” and that she should be fine since the hematologist had said it was safe to wait another week. I felt frustrated and uneasy so I called the hematologist and explained what happened. He said they never got the blood results from yesterday and he had accidentally looked at the previous week’s blood results when he said to wait another week. I told him yesterday’s numbers and he said she needed to come in right away. Long story short, Nora will be having her first post birth transfusion on Friday. We are hoping this is her only one but we will just wait and see. My anti-kell antibodies are still in her system and won’t die out for another two months or so. Nora just started making her own red blood cells again, but as soon as she makes them they are killed off by the antibodies, so that’s why she is anemic. The donor blood from the intrauterine blood transfusions is still in her body but she is growing rapidly (gaining about a pound per week since birth) so the blood is diluted, another reason she is anemic. Eventually, the antibodies will disappear and the kell positive blood that Nora is making will be safe and she won’t need any more transfusions or even blood checks for the rest of her life. I will be happy when I don’t have to watch my little girl get poked with needles all the time. My poor baby has bruises on her heels, hands and arms from all the blood draws. I am not looking forward to the transfusion on Friday but I know she will feel much better afterwards.
Today I am grateful for this past whirlwind of a month, for my strong miracle baby and for the medical knowledge and technology that we have today. I know if Nora had been conceived only a couple decades before now, she would not have survived. Happy one month, baby girl!