Update

Today we are 27 1/7 weeks.

So we had a morning full of appointments yesterday. We started by meeting with neonatology, with Dr. Michaels who was the neonatologist who took care of Emma the week that she was discharged from the NICU. I have always really liked him as a physician, he is to the point, will tell it to you straight but empathetic as well. I am not a fan of people who don’t give you real answers. We discussed our wishes for how we would want to proceed when the twins are born and how aggressive we wanted to be with Owen.  Of course as I mentioned before my biggest fear has been for some reason needing general anesthesia or him being taken to the NICU as comfort care and then not being able to spend any time with him prior to him passing. This appointment really helped to calm those fears. Dr. Michaels said that if for some reason I cannot be with him right away they are more than willing to provide an airway to keep him going until we can all spend some time with him. They also told us about the “hummingbird program” that they use on the pediatric services. For me it would be the palliative care team on the adult side. They will be able to help us write down more specific goals for delivery and what we want to happen when Owen is born. Obviously there are many variables that come into play here and there will likely be decisions made on the fly but Josh and I are completely on the same page with our goals so I know if decisions need made I can’t participate in that he will do what is best (I can’t say enough about how amazing Josh is and everything he has done to support me and our pregnancy). Olivia will obviously have everything done that she may need depending on gestation at delivery, and will head directly to the NICU. We meet with one of the coordinators for the hummingbird program next Wednesday after our next MFM visit. I definitely felt more comfortable with the possible outcomes after our meeting yesterday and am grateful the NICU team was willing to meet with us at this time.

We then went to a repeat ultrasound in the MFM department. I have to say, our MFM department has treated our situation and us with more thoughtfulness than I would have expected. We have always had the same ultrasound tech so we don’t have to explain our situation and all the attendings we see sit down and spend the time to answer any questions we have. Our ultrasound was not unexpected. Owen’s head is bigger, measuring 43-44cm, which compares to a 44weeks gestation pregnancy. With the size and type of tumor he has he is at significant risk for hydrops fetalis which is basically him retaining fluid all over his body. At this time they said he doesn’t look like a typical hydrops baby. The vast majority of fluid he is retaining is inside his head rather than under his scalp or skin. He was noted to have a little bit of fluid around his heart on this ultrasound but the attending reading said it wasn’t enough for him to be concerned at all at this point. The rest of him has grown well and he continues to be active. The attending did say though, that there was basically no recognizable brain tissue on this scan. The more concerning part of the ultrasound was Olivia. She has slowed with her growth, most likely because she does not have the room that she would have had if Owen’s head wasn’t so big. She is measuring right at the 10^th percentile. To be classified as a growth restricted fetus you have to measure anywhere under the 10^th percentile. She is very much borderline growth wise but otherwise looks just fine.

At our office visit after the ultrasound we discussed more fully what may be happening in the coming days/weeks. They are concerned about the slowing of Olivia’s growth and we may be looking at starting non stress tests in the next week or two to make sure there is nothing concerning with Olivia. If she tests poorly at any time though, they would recommend delivery at that time. They are also concerned with the frequency and consistency of my contractions even with bed rest. It appears my cervix has thinned to half of what it was 2 wks ago but is still closed at this point. Their concern with delivery in the imminent future is enough that we were recommended steroids at this time. We were given the choice but it came down to the fact that better to have them in than have to go to an urgent c-section and Olivia didn’t have the chance to have steroids to help mature her lungs. I had my first betamethasone injection yesterday, my second is today at noon. I did not get the sense that they expected me to be pregnant much longer. We have a follow up office visit next Wednesday when I will be 1 day shy of 28 weeks. We will readdress the need to start non-stress testing at that time and hope that everything continues to be stable.

Cathy

“Before I formed you in the womb I knew you, before you were born I set you apart” Jeremiah 1:5