We met with the Special Perinatologist today, she's the one who will be handling my C-Section. She is the leading expert in the state on deliveries with complications due to fetal abnormalities apparently. She didn't have many answers for us about our baby's future, he will get his own team of doctors. We have our referral and will meet with them next week. Sounds like it's an Ear, Nose, and Throat doctor as well as a Neonatologist who will plan out his care after birth.
They're calling it a Lymphatic Malformation with Vascular Abnormalities. So it's a little bit of two different things. I guess once he's born they can get a better look at it and assess from there. It is likely due to the size and position of it that they'll want to treat it sooner rather than later, so he's probably looking at a significant NICU stay. Surgery is unlikely though, simply because it is too big to be removed. It essentially goes from his armpit down to his hip and covers the entire left side of his torso and wraps around to his back. It seems like they will try to shrink it and then go from there.
I have to travel an hour to the hospital I will deliver at every week for NST's and Ultrasounds to make sure that his heart is handling everything well. Apparently his heart is slightly enlarged, likely due to having to work a little harder to pump his blood around. I will also still have to see my regular OB once a week for NST's, just so I don't have to drive so far twice a week.
We're kind of just taking everything in stride and trying not to worry too much. I still feel him wiggle and kick and it will be comforting to see him twice a week and see how he's doing. With our first, getting pregnant was the hard part. With this little guy we're in for a bit of a struggle from here on out, but hopefully everything turns out ok.