I am so sorry you are going through all this! A similar situation occurred with my daughter. She was born with a hemangioma on her lip. Her doc kept saying to leave it alone and it would go away. It eventually ulcerated and we ended up at a specialist with a daughter who was in a lot of pain and who could barely eat. Most hemangiomas do go away on their own but unfortunately others have more complications and need to be treated in some way, especially when ulcerations are involved. I would definitely go to the specialist and see what they have to say about treatment options....various medications, laser, surgery....just get all the info you can and then you might feel better about making a decision on a course of action. When my daughter's ulcerated we needed to put antibiotic cream on it and Aquaphor as well. We put Aquaphor on it daily for well over a year. It helped to keep it moist and I think it helped to prevent further ulceration (she was also on oral steroids for it too.) My daughter's did fade quite a bit on its own over the course of the years too. I have another daughter that had a pretty big hemangioma on her hand and that has totally gone away on it's own, so it is possible.
Hang it there. I know how hard it is. Even though it is so hard to believe it, it will go away eventually. Here's my daughters' photo albums so you can see the progression of their hemangiomas fading: