The nurse called me back, took my weight and blood pressure (both of which were within range), and then delivered me to the ultrasound room. For the next hour, she took multiple images of the babies’ hearts, cerebrum, and a few measurements of their bones. While she was taking images of baby “A’s” heart, I asked if she had any concerns, because she was spending a lot of time looking at the heart. She would zoom in, and then out, and then look at the Doppler view, several times over. She said she didn’t see anything that stood out to her, but that the dr. would want to take a look as well. She asked about the fetal MRI results, and about what the dr.’s had said in Dallas. I gave her the run-down: they shared a liver and small bowels, the dr’s believed them to be good candidates for separation surgery. I told her that we had SPECIFICALLY asked about their hearts and their brain development, all of which there were no concerns at the time. I also told her we would be delivering in Dallas. She asked if I was doing ok, and I told her that I was just kind of expecting more bad news. I was hoping for a ‘no changes’ status, though. I was hoping that they were growing bigger and stronger, and that we had gotten the bad news out of the way. This, however, was not so.
Once the nurse had completed all the images, she checked my cervix. All was well on that front.
The dr. came in, and began reviewing all the information that we knew for sure. He, too, took more ultrasound images. And this is where the bad news begins. He said that the twins, for sure, both had septal defects (heart defects), though they were tiny, and certainly not the biggest concern. He asked about the curved spine of twin ‘A’ – he wanted to know what the Dallas dr.’s explanation was. I told him that both the maternal-fetal specialist and the fetal MRI dr. agreed that it was scoliosis secondary to the way the twins were conjoined. He then disagreed and said that he would still refer to it as a ‘hemi-vertebra’ because of the drastic curvature. And finally, he stated that twin ‘A’ had ventricular megaly, or enlarged ventricles in the cerebrum, indicating an excess of cerebro-spinal fluid, which could very well result in hydrocephalus, or water on the brain, once the baby was born. If this were the case, shunts would have to be put in place to drain the excess fluids. He said that hydrocephalus can be caused by genetics, but in this case, it was more likely the result of the hemi-vertebra/torque of the spine.
Dave was not with me for this appointment, so rather than crying, I tried to focus on the terminology so that I could report it back to him. I scheduled my next appointment for May 3rd, walked back to my car, and texted Dave the details. When he called me, I could hardly choke out the newest information. We both hoped that, like last time, this would be the worst of the worst news, and that the dr.’s in Dallas would have a different, more hopeful point of view. Maybe their imaging machines were better. Or their experience with conjoined twins was more extensive. Hopefully.
I took Ethan to gymnastics, returned home, and got both boys in bed. Dave and I talked about the news. Sometimes, I don’t know what the best decision is, or if we had made the right decision, or if there is something I could do to help my babies, or if there is something that I could STOP doing to help my babies. Sometimes, I lose sight of the hope that we felt, and this is when I cry.
Before our appointment, I was hopeful. After the appointment, I felt/feel lost again, but not with the hopeless despair that we had initially, just with the feeling that no matter how I feel, or how much I hope, or how much I question, things will turn out the way that they will. And there is nothing I can do to change it. As a parent, this is the worst feeling in the world.
I have two appointments on Friday in Dallas – one with the maternal-fetal specialist, and one with the high-risk dr. (whom I have yet to meet) who will deliver my babies. In the meantime, Dave and I are attempting to learn to take things in stride, to do what we can, and to continually look for the silver lining. We don’t understand this. We can’t fix this, but God’s got this.