I’m am now 21 weeks and 5 days pregnant. We are getting so close to viability! Of course, just because a baby is viable (could possibly survive outside of the womb) it doesn’t mean he will survive if born, but at least there is a chance. One of the hardest things about losing Lucy was knowing exactly what the problem was (my antibodies were attacking her and she was extremely anemic) and knowing that if we could just get her away from my body she would be ok, but she was still too young to survive outside of the womb by a few short weeks. So we watched her die and the doctors just stood there. Once I get to viability with this baby boy I will feel a huge weight lifted just knowing that he COULD possibly survive if the same scenario happened. I think 21 weeks is the earliest a baby has ever survived outside of the womb. Different hospitals and different states have their own viability cut offs when it comes to gestational age. Surprisingly, at the hospital in Houston where Nora was treated and born (Children’s Memorial Hermann Hospital) they don’t consider a baby viable until 24 weeks, even though many babies have survived earlier than 24 weeks. At Northside Hospital in Atlanta, where this baby will probably be born, they consider a baby viable at 22 weeks and older. This means that this baby will be considered viable by the time he needs his first intrauterine transfusion, which is what I’ve been praying and hoping for.
Speaking of this baby, he is still doing well! I completed the extra rounds of treatments and baby boy looked great at his ultrasound last week after all of my treatments were done. His MoM at 20 weeks was 1.19 and Nora’s MoM at 20 weeks was 1.47 so it seems like this boy is doing even better than Nora was at this stage. Apparently the extra plasmapheresis and IVIG has helped keep his anemia down. He is still super active at every ultrasound and there are no signs of hydrops or distress. Heart function is beautiful, no excess fluid, etc. Here is a quick video of him stretching out and breathing/swallowing at his ultrasound last week:
Yesterday I had my 21 week scan and baby still looked good but his numbers were up just a little bit. His MoM was 1.25 which is still in the good zone but getting closer to that 1.5 cut off. He showed no signs of anemia so hopefully next week his numbers will still be low. This week’s higher number could just be normal fluctuation or it could be the beginning of an upward trend. Baby boy now weighs one pound and two ounces so he’s measuring a little bit ahead, which is great! The bigger the baby, the easier an intrauterine blood transfusion is for the doctors to perform. Please continue to pray for our sweet boy. Even though he is doing great at the moment he still has a long road ahead of him to survive. He is being attacked by my antibodies and will eventually need blood tranfusions before birth, which are dangerous. Please pray that he can hold off a few more weeks before needing a transfusion. Thanks again for all of your support and prayers!
Here are a few pictures from the past couple of weeks:
Me and baby at 19 and a half weeks, the same gestation that I lost my baby Lucy. I was at the hematologist in this picture waiting for a check up. My normal doctor wasn’t in town so I had a different doctor that day. He said the night before, he had researched and studied my condition for four hours because he didn’t know much about it and wanted to be prepared. Just a reminder of how rare this disorder is (and how awesome my doctors are!)
Tiny fist pump
Nora Juliet is ready to be a big sister!
Thank you all for your prayers and encouragement over the past few days. Today’s ultrasound was better than Monday’s and baby boy’s MoM levels were slightly lower than they were on Monday! Today they were around 1.22 and the previous levels were around 1.3
He looked really healthy and wasn’t showing any signs of anemia on the ultrasound. Dr. Moise and Dr. Trevett still want me to redo my three rounds of plasmapheresis and have back to back IVIG infusions afterwards to try to keep baby safe from my antibodies a little bit longer. Unfortunately my nephrologist (the specialist in charge of my plasmapheresis) refused to order the treatments unless I have a permacath so they will be surgically placing the permacath (again) tomorrow morning in Atlanta. Then I will come home and have IVIG all day Monday before driving back to Atlanta for my plasmapheresis treatments that will happen on Tuesday, Thursday and Friday. I will have IVIG infusions again on Saturday and Sunday then hopefully I can let my body rest for a few days. I am trying hard not to be overwhelmed by all of this and the best way to do that is to be thankful. I have so much to be thankful for. My baby is healthy and alive at this moment. I have amazing friends and family who will drop everything to watch my kids, bring us a meal, take my kids to school, etc. and we couldn’t do any of this without them (thank you Emily and Mark, Amy and David, Shelly, Jessica and Shoney!) I also know what a great privilege it is to be given the chance to suffer in the place of my child. All of the treatments and procedures I will go through in the next week are being done to keep my son safe and to keep him from suffering like Lucy did. Not many parents are given the opportunity to experience physical pain in the place of their child, and I do not take this gift for granted. Please pray that these treatments work in keeping our boy healthy.
Yesterday I had my 13th ultrasound and it wasn’t as great as the previous 12 have been, unfortunately. I was 18 weeks and 2 days yesterday and it looks like my antibodies are starting to affect baby. His MoM levels were around 1.3 yesterday and all of his previous scans have been less than 1.1 so there definitely was a jump this past week. Dr. Trevett also noticed that baby’s bowels looked slightly echogenic on the ultrasound. This means the bowels/intestines looked brighter on ultrasound than usual which can be normal or can be a sign of fetal anemia. Dr. Trevett felt uneasy with the jump in baby’s numbers and the possible echogenic bowels so he wanted me to go be seen by Dr. Moise in Houston this Thursday. We were kind of scrambling at that point to get the appointment set up and trying to get things set up at the Ronald McDonald House in Houston as fast as possible (we can’t afford to stay in a hotel but it takes a while to get in at the RMH.) I wasn’t TOO nervous because the baby really did look great otherwise on the ultrasound. He was very active and there were no signs of hydrops. His heart looked perfect and heart function was good. My amniotic fluid levels are still normal as well. Nora’s MoM at 18 weeks was 1.48 so I still feel pretty good that this baby is at 1.3. It WAS a pretty big jump in just a week so I do feel more nervous now.
Anyway, as we were making all of the arrangements to go to Houston and I was trying to wrap my mind around the situation, Dr. Moise called me and asked how baby looked on ultrasound and I told him about the echogenic bowels, the MoM levels, etc. and he thought that I probably didn’t need to come all the way to Houston yet. He said he has never seen a baby with (accurate) MoMs less than 1.5 who was actually anemic. He also discussed everything with Dr. Trevett and the new plan is to have another ultrasound with Dr. Trevett this Thursday in Atlanta and if the baby is worse, I will go to Houston. Dr. Moise also reminded me that it is normal for MoMs to go up one week and down the next week. The thing that is concerning is when there is a consistent upward trend, but even then baby is safe until the MoM reaches 1.5. Dr. Moise does want me to redo the three rounds of plasmapheresis (treatments I had earlier in the pregnancy to remove antibodies from my blood) and then have two back to back rounds of IVIG. Since the plasmapheresis got my titer from 512 down to 64 last time he is hoping it will work well again to lower my titer and buy baby some more time before he needs a blood transfusion in utero. At the moment my titer is 512.
I am on board with this plan but I am really hoping that I don’t have to have the permacath surgically placed again. The specialist is wanting to place another permacath in order to do the plasmapheresis treatments but I’m trying to see if we can do them using my port and an IV instead (they have to have two lines of access during plasmapheresis.) The permacath is this big thing they sew into my chest that runs through my jugular right down to the opening of my heart.
The doctors have to use x-ray guidance during the procedure to insert the permacath which could expose the baby to x-ray radiation. It’s also painful, uncomfortable and I can’t take a shower or swim with it in. It increases my risk for infection and blood clots also. I would hate to have the permacath placed just for three rounds of plasmapheresis. This is the port I have in now. It’s under the skin and much more comfortable and I can get it wet.
Please pray that I can avoid the permacath somehow and that the ultrasound this Thursday shows a healthy baby and no signs of anemia. My side effects from the weekly IVIG infusions have finally started easing up a little so thank you to everyone who has prayed for us regarding that. It is so wonderful not to deal with daily migraines and the nausea is even starting to lessen which is a HUGE blessing. I’ll update as soon as I can after the ultrasound on Thursday!