And the hits just keep on coming

Just got back to the hotel after 8 hours @ CHOP. 2 hour ultrasound, 2 hour echo of his heart, genetic counseling and then the culmination - meeting in a tiny room with 8 experts/fellows/counselors etc.  So I didn't get my wish - Macsen doesn't fall into those "normal" stardard risk HLHS patients. In addition to having an almost non-existent left ventricle, non functional mitral valve, he also has a severely abnormal tricuspid valve and deformed right ventricle. This is really bad. We were counting on the right  side of his heart to do all the work after his surgeries. All the surgeries doctors have developed for HLHS rely on  a functioning tricuspid valve and right ventricle. Macsen's tricuspid valve is elongated and juts pretty far into the right ventricle and the doctor said there are "things radiating off of it." He's never seen anything like it and he's the expert. He can't tell us if it will hold and continue to function because he's never seen anything like it. He did say that if the valve starts to leak there is nothing they can do for Macsen - nothing.... sob. He may even die inside me if that happens. And after he's born if his valve fails then our options are palliative care (a term I didn't even know existed until 2 weeks ago that means watching your baby die) or trying to get a transplant - which he didn't think was very probable. And these are the guys that give everyone hope when other doctors tell parents to give up.
So if Macsen makes it to birth and if his valve holds and somehow functions then he will get his first surgery within  a few days of birth and then he has maybe a 50% chance of surviving until his next surgery.... But because his valve is so unusual who knows what will happen.
Just when I had kind of gotten a handle on this HLHS diagnoses we get this one... it doesn't even have a name I can google... there are no websites devoted to hopeful stories of kids that have beat this diagnoses. The team couldn't really give me any hope... I need some hope. I need some to be able to face 3 more months of carrying my little boy who I may never get to know.................................