ticking clock

In addition to seeing several specialists at UCLA, we are still going to my OBGYN every three weeks and getting an ultrasound at a local perinatal center every two to three weeks. Luckily they are all coordinating together and sharing results so we don’t have to go down to LA every few weeks. The perinatal center by far has been giving us THE BEST ultrasound pictures, including the one above which is a 4d image of the girls at 22 weeks gestation. Its a little hard to make out but you can see eyes and a nose on each face, and they are connected somewhere at their jaw and cheek. The same day we had this ultrasound was when we received a phone call from yet another doctor working on our case.

March 4th, 2019:

We received the results from my MRI and it confirmed a few things. The girls lower jaw is connected, but not how I understood it. They are not connected face-to-face, but more at an angle, which makes me feel so much better. How incredibly uncomfortable would they be if they were? Talk about a crick in your neck. Their heart is not looking good, and the group of specialists that have looked at our case are very concerned. We also learned that they share their lungs and stomach, but each have both kidneys and separate bladders. So it seems to me they share their organs in their torso but where they split in their pelvic area is where they have individual organs. At this point the girls are still very small, so with time we will know more.

So this new doctor not only told us our results, but also wanted to touch base with my expectations and goals about the pregnancy. As you may have noticed, all of these appointments have happened in a very short amount of time, and for good reason. When we found out that we were having conjoined twins I was already five months (20 weeks) pregnant. The clock was essentially ticking on whether or not we wanted to continue with the pregnancy, because in California the cut off for an abortion is 25 weeks. They never called it an abortion however, they called it termination. Of course all of our doctors were very kind and delicate about the subject, and never pushed for us to make a decision either way. None the less, it is their job to present us with all options. Over the course of our conversation she made it very clear to me, that in her opinion, the girls didn’t have a very good chance.

At that point, for some reason, (maybe I just accepted their fate weeks ago) I kept my composer and let her know our goals. We never considered termination unless my health was at risk, or the girls had some serious genetic irreversible malformation. We know that stillbirth is very common, sometimes one twin can die in the womb or at birth, they could both die at birth, or even if they both survived they would need some kind of surgery for their heart. We decided that we didn’t want to try and separate them, for that would create unnecessary pain and doing so might not even work. If we could just enjoy their kicks, let them grow and hopefully get stronger, and take them around to some of our favorite places, that would be enough. Our main goal is to hold them and snuggle them when they’re born, whether they survive for days or a few hours.

We remain hopeful, but also realistic. For me personally I believe anything is possible, but I am also preparing myself for the worst. Like I said before, they are still very little (they weigh about a pound each) and are still developing and growing. But if we terminated now, we never would know what could have been, and that is a regret I would carry with me the rest of my life.

Stay tuned for more about our journey.