I'm still alive

Just in case anyone was wondering!

I have had a really bad time with anxiety, to the point of not sleeping for nights running and panic attacks but I seem to be back on track now with the help of citalopram and I was taking temazepam but I don't need it anymore.

We had our post mortem meeting at the RVI yesterday. The diagnosis is definitive but Ellie's case will be taken forward to the next meeting with the fetal med team, NICU team, geneticists and the post mortem doctor etc as there is still some questions regarding her enlarged heart. What Prof Robson and Dr Berrington did say was that without ARPKD, the heart would gave been fine so there isn't two underlying conditions, it is just this is not a typical feature of ARPKD and further information and investigation is required. They will also discuss the possibility of a CVS in future pregnancies which involves taking part of the placenta and looking for defective genes at 11-13 weeks. However, if they can't find the faulty genes on Lee and I or in Ellie's tissue sample, they can't offer it. This means Lee and I would basically have to take our chances and be monitored via scan with the possibility of late termination. It's a horrible thought and it breaks my heart. It hurts even more knowing that apart, Lee and I could hav healthy children. I'm so angry with the world.

To top it all off, I am aching for Ellie, desperate to hold her, knowing that I never will. I feel so alone in my anxiety and my secret feelings (that I really only tell Henrietta and my diary) and like nobody cares. Why would they? I mean, our parents have or can have other grandchildren from other kids so what does it matter to them if Lee and I don't have a healthy child? But it is killing me slowly and everyday I hate the world a little bit more, become more jaded and just don't want to bother with people.