My name is Erin and for those that don't know me I just lost my little girl Sarah on the 24th. It was kind of expected as we were diagnosed with Trisomy 18 around 18 weeks into the pregnancy.
Having children seems to be a roller coaster ride for us. I've had multiple m/c and our first daughter Emily was born as a VATER/VACTREL child. She has heart, kidney and spine issues. She had her first open heart surgery at 8 days old. Since then she's had multiple cath procedures and just recently had her 2nd heart surgery. I'm happy to say she's doing really well right now. For that I'm very thankful.
As far as Sarah - she was a beautiful soul. As much as I know she's in a much better place and that she gave us 2 days with her - which is more than most people with this diagnosis get - I'm still missing her.
I know some of this is grief but I'm really hoping that some of this is hormones. It seems that everytime I get time alone all I do is start crying. Heck - I couldn't even call my good friend because I knew I'd sit and cry and thus make him uncomfortable.
Em is 3 and I've explained to the best of my ability to her about Sarah going to Jesus. Just not sue how much she's getting.
I just hope I can get through this next weekend. That's when we truly say goodbye.