My heart is breaking for you. I remember so well the fear three months ago (when our son was your son's age). We do not have experience with internal H. But, our son has a large h. on his face and neck and behind and in the ear,
This is a great website and hopefully someone will have more infor. for you. The good news is that you know early on what your baby has...and the right tests and doctors to help you go forward with the best treatment. People here are really good resources for Doctors too.
Also, you might want to ck out the website link below. it is a great support group. There are parents on both sites with experiences like yours and positive outcomes to give you hope. Babies are amazing...they often handle things better than adults.
My son's picture (Nicholas) is posted on the site above also...he has come a long ways.