I have dreamed of hitting this milestone since the day I found out I was pregnant. It seemed impossible. I thought we would have at least 2 or 3 intrauterine blood transfusions under our belt by now if we did make it this far, but by God’s grace I am 24 weeks and Nora still has not needed one transfusion! Babies are deemed viable at 24 weeks which means they could survive outside of the womb, although many do not survive if born this early. We are thrilled to be at 24 weeks today! Here’s the 24 week belly:
Unfortunately, my appointment today didn’t go that well. Nora will need her first intrauterine blood transfusion tomorrow, poor baby. Her MCA scan wasn’t that much higher than last week, but there were a few other signs of anemia and Dr. Moise said we’ve pushed it far enough. Her levels were mostly between 1.5-1.6, with two readings at 1.4. Dr. Moise noticed the beginnings of a little bit of fluid starting to build up in her intestines and her heart looked a little dilated, both signs of anemia. Other than that, Nora looked great and is measuring right on track at one pound nine ounces. I just want to say how thankful I am to have the best doctor in the nation taking care of my Nora. He knew exactly when the right time for her transfusion was because he knew just what to look for on the ultrasound. I feel very confident with him in charge and it is a HUGE relief.
It was hard to be at the appointment alone, without Josh to help me take in all the information and make big decisions. I was asked if I wanted to try to save Nora if there was a complication or just let her die peacefully, since her odds of surviving outside of the womb aren’t that good. I have watched helplessly as my other daughter died without intervention and I don’t intend to do it again. We will fight with every intervention possible, if needed. I was given the first of two steroid shots to develop her lungs and will be given the other one tomorrow morning before the procedure starts. The whole neonatal team and pediatrician will be in the operating room tomorrow in case something goes wrong and we have to deliver. Occasionally (rarely) the baby’s heart will start to slow down when he puts the needle in the umbilical vein. Usually the heart rate goes back up if he takes the needle back out, but sometimes it continues to get slower and slower. If that is the case, he has some drugs ready (can’t remember what they’re called) that he would give her to jump start the heart rate and get it back up. If that still doesn’t work, they will sedate me and do an emergency c-section and have Nora out in minutes. If she does have to be delivered, her odds of survival are pretty low since she’s only 24 weeks and 1 day and she will be anemic and sick to start off with. The steroid shots will help her lungs, though. I was told there is a very small chance that she will have to be delivered tomorrow, so I’m clinging to that hope. There is a 1-2% chance that Nora will die from complications associated with the surgery, such as premature rupture of the membranes, premature labor, infection, placental abruption, etc. Please pray that NONE of these complications arise and that Nora comes out (or rather, stays in) safe and healthy.
So, now that I’ve got the worst case scenarios out of the way, I’ll try to explain how the procedure will go tomorrow. It will start at 7:30 am and they will start by partially sedating me. Next they will stick a long needle through my belly (guided by ultrasound) and (hopefully) into the umbilical vein. The doctor will draw some of Nora’s blood and test it right then to see exactly how anemic she is. They will be looking specifically at her hematocrit which tells them the percentage of red blood cells in her blood. Dr. Moise thinks hers will be somewhere in the high twenties. The hematocrit number helps them know exactly how much blood they need to put in her. If they put too much it could kill her and if they put too little she will remain anemic and sick. They also use this number to determine exactly how many days they can go until her next blood transfusion. If her hematocrit is in the high twenties she will need another transfusion in about 7-10 days. If it’s really low, say around 12, they will do another transfusion within 2-3 days. At Lucy’s blood transfusion at 18 weeks her hematocrit was only a 6 and they didn’t even check her again for a whole week after the transfusion. This makes me so sad, knowing she wasn’t monitored like she should have been. By the time they saw her again, it was too late. Anyway, back to tomorrow. After they check Nora’s blood they will give her a paralytic and a medication to sedate her. The doctors need to temporarily paralyze her so that she isn’t moving around during the procedure, possibly kicking the needle out or getting injured. As well as paralyzing her they also sedate her because supposedly, babies in the womb who are paralyzed without sedation REALIZE that they are paralyzed and start to freak out because they know something is wrong and they should be able to move. How amazing is that? A tiny one pound baby has enough awareness in the womb to get anxiety when she can’t move her little arms and legs. That is incredible. So, after she is paralyzed and sedated they will use the needle to put just the right amount of packed red blood cells into her umbilical vein. The doctor will pull the needle out and go in a second time and put more red blood cells into her abdomen. The blood in the vein relieves her anemia immediately and the blood in the belly slowly seeps into her blood stream over time, giving her fresh blood days after the procedure is over. After that, the doctor will draw more of Nora’s blood to test her hematocrit again to see if the transfusion worked and her final blood count is higher. The whole procedure should take about an hour. After it’s finished they’ll take me to the recovery room and monitor Nora and me closely until Nora starts moving again, then they will send me home. I’ll be on bed rest for a day or two. Dr. Moise will do another scan the day following the transfusion to make sure Nora looks healthy and then we do it again in about a week. After that transfusion they will wait two weeks until the next one and 4-5 weeks after that one. Dr. Moise thinks Nora will need 4-5 blood transfusions before delivery.
One thing I am REALLY excited about is that I won’t be doing IVIG anymore since it isn’t really helpful after starting IUTs (transfusions.) This means they will be taking my port out tomorrow right after the transfusion is finished and while I’m still in the OR. I am SO excited to have that thing out and be able to shower again! Here’s one last picture of the port:
The reason IVIG isn’t helpful anymore is because Dr. Moise will replace all of Nora’s kell positive blood with kell negative blood (temporarily changing her blood type!) After the kell positive blood is gone, there is nothing for my antibodies to attack, therefore we don’t need to try to suppress them anymore. The first two transfusions replace her blood and then the subsequent transfusions are needed because Nora will grow bigger and bigger, therefore needing more blood. Dr. Moise knows exactly how many transfusions she needs in order to keep up with her growth as the weeks pass.
Sorry about all of the medical information for those of you who are uninterested (it is pretty boring reading material.) Please pray for baby Nora and for the doctors tomorrow. Pray that there are no complications and that Nora gets just the right amount of blood she needs to overcome the anemia. Also, I would love for you to pray for Josh and me since this is terrifying, especially after losing Lucy a week after her blood transfusion. Josh has to teach classes all day tomorrow while worrying about his baby girl and I have to go through the whole thing without him by my side. I really wish he was here. I know God will be with us, holding us in His mighty hand, filling me with strength and peace. Thank you all for your support and your prayers.