We have had 10 weeks now to mentally prepare ourselves for the inevitable passing of our precious baby boy. We’ve known for a majority of that time that we didn’t think the path to heroic measures was the one we were going to choose. We left it sort of open ended, choosing to deliver at a hospital where IF the baby surprised us, we could intervene. We would be surrounded by the resources to keep his DA open and make a decision, if in that moment it’s what we decided to do. Our cardiologist had conferred with several of her esteemed colleagues all over the state about our baby and about his condition. For a few appointments, not much changed, but as the weeks go by, more and more is happening. We knew the valve had begun to leak. Three weeks later, the MFM group found that baby had a big blood clot in his left ventricle (which can happen when that part of the heart isn’t pumping well, the blood kind of coagulates and forms a clot). The next week, the clot was taking up the entire ventricle. Because our baby’s chance of survival was “negligible” as the cardiologist put it, the clot is just a consequence of the physiological failing of his heart. If his prognosis weren’t so poor, this would be a big big deal because pieces of the clot would likely break out of that ventricle and cause a stroke when it found it’s way to his brain. Yesterday, I had a follow up at MFM and new finding this week is that my fluid is high. This is a natural consequence of heart failure in the baby. The right side of his heart has been pumping away but it’s getting tired. It’s getting tired and the doctor thinks we might be just a couple weeks away from losing him. It just got real.
We have mentally prepared for this whole situation but there’s something about picking up the phone and calling a funeral home that I just have not been able to do yet. We haven’t figured out any of the details. I don’t have an outfit. We haven’t figured out if we should introduce Max to baby. I never bothered to straighten out my LOA from work or even get educated on the process. We’re ready, but at the same time, we’re so not ready. Because how can you be really ready for something like this? I knew it was going to come. That sometime after November we would have met and said goodbye to sweet baby murph and would be on our journey to healing. But all of a sudden, two weeks sounds really.fucking.soon.
So I guess in between working full time, juggling 8-10 appointments per week, and making sure my family has clean underwear, I need to start nailing down the details. I am starting to realize this is going to be harder than I ever imagined it would be.
Thank you.