Lisa- I do know how you feel. My grandson also had a heart defect called Taussig-Bing that was not diagnosed until he was 2 months old. He left us last October when he was 14 months old. I know well that vigil we keep in the hospital and all the machines and meds while our little ones lay there and we can't hold them. I am so very sorry for your loss. Someone here posted a saying by Edna St. Vincent Milay - "there is a hole in my world where you used to be. I walked around it all day long and at night I fall into it." I wish I could hold you. I know it won't bring him back but I could share your pain. Please keep coming here and posting. It does help.