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: