Thanks for your responses, everyone. It is wonderful to have so many experts out there, both to collect valuable information and also to know we're not the only parents to have confronted this challenge. Our older daughter was born with a PWS; they ought to give us an honorary degree in vascular lesions for all this trouble!
So a couple more questions:
We are going to see two specialists in nyc next week (Bernstein, who is doing a wonderful job treating our older daughter with PDL, and then Levitin, who works with Dr. Waner).
Our duaghter is still only 3 weeks old, so lots of unknowns out there in terms of how this thing develops, BUT....if this is, in fact, a deep H (although it may be compound b/c there is MAYBE a red tinge poking through) on her nasal tip/septum, is there any chance Bernstein will want to use the PDL on the first visit?
The reason I ask is, as Corrine points out, they often say that deep H's don't respond well to laser...Is that always the case? Do the cutting edge (no pun intended) laser dermatologists see any value in treating deep H's early with laser, as they do with port wine stains?
Aubrie, the H on your son's nose (he is adorable) appears to be a compound one. Was the PDL used on his nose? If so, was that to treat/shrink the blue swelling or to treat the sperficial/red portion of the mark?
Thanks again everyone!