My daughter is 3 weeks old and was just diagnosed with a lower lip hemangioma. Lucy's also started as a faint spot on her lip at birth. I thought it was a nursing blister. After a week I noticed that she also had a large one in her mouth that extends from her lower lip to her gum line.
My daughter has been seen twice by a pediatric dermatologist that specializes in hemangiomas. She put Lucy on Timolol yesterday, which is a topical medication/drops that I put on her hemangiomas 2x daily. She decided to go this route first because it has the least amount of side effects. If the hemangioma continues to grow she said that the next step would be steroid injections, which I'm praying we won't need. Lucy has had only 3 doses of the meds so far, but the hemagioma appears to be less purple than before, so I'm cautiously optimistic. The doctor also mentioned that in her experience, hemangiomas that are located on thinner skin (i.e., lip/mouth, eye lid, etc.) appear to do the better with topical meds than other regions.
Hope this was alittle helpful. I agree with everyone that you should try to locate a specialist. Please update.....I too have just started this journey and would love to hear what others are doing for treatment. Thanks.