This post is for Diane.
I wanted to respond to your question regarding breastfeeding. Maybe others can give you their experiences here as well. I have EHK and my son was born with EHK. I wanted to breastfeed since it carries antibodies for the baby. My first try (and only try) resulted it both me and my child bleeding. His chin got rubbed raw and so did my breast. Pumping was about as painful, it pulled off my skin. Ouch! Anybody have any success with this.