The whole time I was pregnant, my goal was to get Nora past 25 weeks (viability) and out of my womb to safety. Thankfully, we got even further than that and we are so relieved that she is here with us. I never really thought past that point for some reason, so the past few weeks have been quite frustrating for me. I didn’t prepare myself mentally for the fight that Nora would still have to face once she got here. Anyway, she is still fighting those annoying antibodies. My anti-kell antibodies will stay in her blood for several weeks to several months after birth. She also isn’t really making many of her own red blood cells yet (her retic is 0.11) and she is constantly growing so she continues to struggle with anemia. Last week she had her first blood transfusion outside of the womb and she did great! I was able to hold her the whole time and even nurse her during the transfusion.
I could tell Nora started feeling better right after the transfusion was finished. Her skin was pinker and she had a lot of energy.
For some reason, the hematologist did not check her blood levels right after the transfusion so we don’t really know how high her hematocrit and hemoglobin got. This past Tuesday, four days after her transfusion, they checked her blood and the levels were not very good. Her hematocrit was 26.7 (transfusion level is between 22-24) and her hemoglobin was 9.3 (transfusion level is 8 or below.) I thought the transfusion would have raised her levels much higher than that but I’m not a doctor so maybe there’s a reason for it. The doctor didn’t want to check her again until this Wednesday, eight days after her last draw. Josh and I feel nervous about this. It seems too long to wait if her levels are already borderline transfusion level.
One of the main things Lucy taught me was that I shouldn’t always trust doctors, especially when it comes to the life of my child. Doctors are human and they make mistakes. They are not all-knowing and they don’t always make the best decisions. I trusted the doctors with Lucy’s life and didn’t push for plasmapheresis and IVIG since they told me she didn’t need it. Now she is dead and I know better. I also don’t want to be paranoid and always think that I know better than the doctor…I am not the one with a medical degree. There is a delicate balance and it’s often hard to know when to push for something and when to trust the doctor. I don’t really know what to do in this situation. I don’t know much about Nora’s hematologist and he (and our pediatrician) have already made one major mistake by not checking her correct blood results right when she needed a transfusion. I will probably call him on Monday and bother him with more questions. We are expecting Nora to need her second blood transfusion next week sometime, which is disappointing because we were hoping this last transfusion would last her about four weeks. I can’t wait for the day when Nora is given a clean bill of health and released from the hematologist for good (hopefully by Christmas!)
Despite the fact that Nora is still dealing with my awful antibodies, we are enjoying these first few weeks with our girl. I feel grateful for all the moments we get with her, even the ones in the middle of the night. She just started smiling socially (not just gassy smiles) and it is so cute! I always dreamed of looking at Lucy and seeing her eyes open and gazing back at me. It is so hard not to know what your own baby’s eyes look like. Now when I gaze into Nora’s eyes and she smiles back at me, I KNOW what a gift it is. Every time I look into her eyes I feel incredibly grateful. She looks so adorable in all of her baby girl clothes. I feel a rush of excitement every time I get to open her closet and look through all of her cute outfits to pick something for her to wear. So many of the clothes were purchased in wild moments of faith before we were pregnant and before we even started the adoption process last year. I just always felt like God had another daughter waiting for me. And now I get to see those moments of trust come to fruition when I put the cute onesie on Nora or see her sucking on the pacifiers Asher picked out for his future baby sister years ago. We have been given so many happy moments with Nora in the past six weeks and there are so many fun things to look forward to. I can’t wait until her hair is long enough for pigtails and braids! My life is saturated with gratitude and awe. Thank you God for our daughter who brings us so much joy.
I was feeling anxious about Nora and called your Dad to check on her – still praying with you for that clean bill of health. Thanks for your updates. (I take my prayer requests seriously and love to know what God is doing in these situations.)
God bless you all.
You fight fight fight for Nora! I have been following your story for a long time, ever since I lost my sweet Deeton at 40 weeks and 3 days. I too wonder how often we should question doctors. My son was recently diagnosed with wiskott Aldrich syndrome so I somewhat understand part of the results you are explaining. We are waiting on a bone marrow match right now for Dexton-he just turned 7 months old. ASK question, ask lots of questions. It makes the doctors second guess themselves and ask others for opinions….they do make mistakes. Trust your gut….prayers from Kentucky for sweet Nora.
Thank you for your advice! We called the doctor and he was very good about answering our questions. Nora just had her second blood transfusion (still trying to find time to blog about it) and she is feeling much better! Also, I am so sorry about your baby Deeton. Every time I hear about another mother losing her baby it breaks my heart. It just shouldn’t happen, EVER 😦
I will be praying for clear guidance all along the way on when and what to push for and when to accept the doctors’ recommendations. Sweet Nora may be in human care, but she is also in God’s hand. Nothing is out of His control. And I’m so glad this is a temporary road. Although, I didn’t think about any challenges past a healthy birth either. That strong, sweet girl has defied the odds all the way through, so i bet she’ll be done with this early.
She is such a beautiful child. ❤ Hang in there, it's only going to get better from here!