We went to see the cardiologist on Thursday and he said no one at children's will do surgery on Grayson :( they don't feel it would be the right thing to do since his chances of surviving past 1 are low. So now they took that small chance that he did have and made it 0% :'( this is the hardest thing I've ever been through, I just keep breaking down. How do you shop for an outfit to bury your baby in? How do you choose special outfits that you want to take pictures in because a photographer comes in for you all because your baby is dying? My son asks if we can carry his spirit in the car seat and take it with us in the car still when Grayson goes with god. He asks where we will put his clothes. He always used to draw pictures of our family and they always had a baby in my arms but now it's the 3 of us again.
Every time I feel him move I want to break down, he's fought so hard this far!! It's just not fair that they're taking his chance away! I know that chance was small but it was there. He has no major things wrong that most babies with t18 do (no small head, no spina bifida, no organs outside, no cleft lip or palate) besides his heart which isn't even directly related to this. The only symptoms are he's small, one foot is slightly clubbed they THINK but his feet can still be seen together (as if he was standing up) and his clenched hands.
on Mar. 2, 2014 at 12:07 PM