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.
The tiniest blood pressure cuff!
Feeling sad after they had to put the IV in her head
Nursing and transfusing
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.
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!
For some reason, the due dates of my children always end up burned into my memory. Even my living children; I sometimes get their birthdays mixed up with their due dates. The due dates of my lost babies, they are hard to get through. They are reminders of the special people I love so much but don’t get to have in this life. March 19th, June 15th and July 2nd…my sweet babies who never took a breath. Today is such a day of rejoicing, though. Nora’s due date is today, August 3rd, and instead of mourning and begging God to just get me through the day, I get to spend the day cuddling her, breastfeeding her and putting cute girly clothes on her. Thank you, Lord! I just can’t seem to be able to stop rejoicing in this tiny life that I’ve been given.
Jeremiah 31:13 I will turn their mourning into joy; I will comfort them and give them gladness for sorrow.
Psalm 100:5 For the Lord is good; His steadfast love endures forever, and His faithfulness to all generations!
Today Nora is two weeks old. Last week she had her first check up at the pediatric hematologist. Her numbers looked good but she is heading toward being anemic. Her bilirubin was great, less than 1. It looks like she won’t be dealing with jaundice at all, which is a huge blessing. I was expecting her to be on the lights for several days at least to battle the jaundice but she’s handling it on her own. Her retic was .22 and her hematocrit was 41, down from 54 last time we checked. Her hemoglobin was 14.5. Both her hematocrit and hemoglobin are expected to continue to drop until she is anemic. While Nora was in the womb she stopped making her own red blood cells since blood was being provided for her via the transfusions. Now, her body needs to start making its own blood again. The way her body realizes it needs to start producing red blood cells again is by becoming anemic. We have to let her get anemic, but not too anemic or it could be dangerous. If she gets too anemic we will give her a blood transfusion. Right now she will have her blood levels checked twice a week.
Last week we also got a call from Texas telling us that Nora had an abnormal blood result on one of her newborn screenings. She had low carnitine levels which could be a sign that she has a genetic metabolic disorder called Carnitine Uptake Defect. It is inherited when both parents carry a recessive gene for the disorder. About one in every 100,000 babies is born with it. Basically, the body can’t burn fat for energy. When a person goes a long time without eating, the body simply burns stored fat for fuel to keep the heart beating. People with this disorder are not able to do this so if they don’t eat often enough they can have sudden heart failure, liver damage, muscle weakness, etc. Josh and I were quite anxious at first about Nora possibly having this disorder, but then we remembered that her blood was 100% donor blood, so they were actually testing other people’s blood. We asked the doctor if it could be a false positive and she said it could be, but she wasn’t sure because she had never treated a baby like Nora. She had treated babies who had transfusions after birth, but she had never had a patient who had transfusions before birth. This past week they retested Nora’s carnitine levels and they had come up to 37. Anything over 38 is considered normal so she’s just below the normal level. The doctor doesn’t think she has the disorder but isn’t completely sure. They are going to retest her in a week or two. Please pray that her carnitine levels continue to come up!
Despite coming home to a flea infested house, dealing with a sick Asher and Josh, trying to settle back into our old life in Alabama, constantly taking Nora to appointments and being completely sleep deprived, we are loving our life with three children. It is so fun to have our daughter here with us, alive and healthy. We feel like every day with her is such a gift, we still can’t believe she made it. There is a huge burden of anxiety and hopelessness lifted and we are enjoying our new, drama-free life. Here are a few Nora pictures to end with:
Wearing big sister Lucy’s skinny jeans