I thought it might be helpful to put a page with links to helpful sites. The best thing we can do is to educate ourselves about CHD's.
https://health.google.com/health/ref/Hypoplastic+left+heart+syndrome
http://www.itsmyheart.org/
http://www.childrenshospital.org/az/Site502/mainpageS502P0.html
Great new site I've discovered!
http://paulcardallfamilyfoundation.blogspot.com/