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!