Oh my goodness...your story breaks my heart because I have been there!!!!! The nursing, the ulceration, the pediatrician..the whole thing. I am so happy for you that the propanolol is working so well. At the time of my daughter's treatment, that drug was not offered. She was on steroids and did well with it and got good results, but I was always a wreck about potential side effects and our pediatrician at the time was in a battle with the specialist about using the steroids. It is so frustrating to me that we went through this 7 years ago and people like you are still going through it now and that some pediatricians are still in the dark about potential complications of lip hemangiomas. As far as I'm concerned, lip hemangiomas should go directly to a specialist asap, especially when parents start complaining about the child's difficulty with bottles/nursing. My daughter screamed and screamed for weeks and then she had what I thought was a sore on her lip (I didn't know what an ulceration was at the time) and I called the ped. and was told just to put vaseline on it and that it didn't hurt. You can imagine my horror when we finally made it to the specialist and they told us she had an incredibly painful ulceration. We had to use a numbing gel for weeks so that she could nurse as it healed. So I totally feel your pain. Your daughter is soooo beautiful! I'm so happy that everything seems to be going better for you now.
Keep us posted!