I'm Lorna and I live in Aberdeen so not too far from you. My 20 week daughter has a large H on her left eyelid and head that is affecting her vision. Like your daughter's her's appeared about 2 weeks after birth and grew very quickly. She has been on steroids now for over 2 months and there has been no change so we are not sure what's going to happen (but I get the feeling they want to wait.... which I'm not happy about).
I understand how you feel about people looking and it is really hard.
Hope you realise you are not alone and if you want to 'talk' we are here.
Lorna & Abbie xx