Smurph- I've seen your history/pics on other threads and thought that we would have the same story, that we waited too long and now our baby will have to deal with the effects growing up. The pics of your daughter were incredibly helpful in letting us know that everything would be okay and she will smile again, it was hard not to imagine the worst outcomes because I was blaming myself something fierce the few days we had to wait to start treatment.
I wish we had read the details a bit more closely, as some of the websites do advise that anything near eyes, nose or lips get checked out by a specialist. We were lulled a bit by how unconcerned our ped. was and how "common" birthmarks are and how they resolve without intervention in most cases. When the ulceration was tiny like a tic tac down inside by her gums, he said it didn't affect the usable surface of her lip and that's why no pain medicine was needed. It is frightening how quickly it spreads though. I was so worried about her getting an infection, especially a drug-resistant one in the hospital!
The ulceration has healed and left a gully? through her lip. Most of it is now inside her mouth, but you can still see the end of it at the top of her lip. A month after starting treatment, we are still battling to get her to take a bottle. I can't tell how much is normal breastfed baby stubbornness or if there is a pain association from trying to force the bottle on her before we realized what was wrong.
I will try to update pictures at 6,9 and 12 months. I was scouring for pictures like crazy when it ulcerated, so I will try to take better, lip-focused pictures for others to see how it turns out rather than the general ones I had taken.