Patience: Infantile Hemangioma

Lip Update: A Surprising Dose of Reality

I haven’t posted any updates on Baby Girl’s lip lately because there really hasn’t been much to report!  We did have a minor scare when she tried to climb an end table (yes, we have a climber…) and ended up bonking her lip just to the side of the hemangioma.  It began to swell quickly and started bleeding, but thankfully stopped after a few minutes.  I, of course, was frantic on the inside.

“What if it doesn’t stop bleeding, what if it ulcerates, what if, what if…”

Brave little girl simply accepted her cuddles and began to play again as if nothing happened.  While it remained kind of swollen for a few days, likely it was just a normal fat lip suffered by an overly rambunctious toddler and the hemangioma wasn’t affected at all – even though it does seem slightly larger than before, perhaps just because it was aggravated by the bump.  Or this size change could just be my parental paranoia kicking in…

(Sidenote: I realize this will be my life pretty much forever.  I will worry while my oblivious daughter continues to happily do whatever it is she does.  I also realize this is payback.  I love you, Mom & Dad, and I am sorry for all the fun I had when I was younger – especially in high school.  Ok, not really that sorry.  But what I am sorry for is making you worry.  Swear.  XOXO)

Back to the topic, we also had a dermatologist’s appointment at Children’s Mercy last week.  At this point it seems like we aren’t aiming for large improvements in the size, although the doctor was happy with how things are looking – so my imagined growth probably is exactly that…imagined.  The color is definitely lightening and the inside of her lip is shrinking a little as well.

On their own, hemangiomas can take years to fade and shrink.  We have certainly sped up the process with the medication and hopefully bypassed any more growth, ulceration, any scarring, extreme facial stretching, etc.  And while not at large as some dramatic cases, I believe the word the doctor last used to describe BG’s hemangioma was “significant.”  So, I don’t feel as crazy for obsessing like I do.  I just want the thing gone, even though it has become just as much a part of her as her cute little nose.

Again, patience is key –  I keep telling myself that.  But it always seems hard to see improvement when you are so close to what you want improved.  It’s been hard for me to smile and agree when people comment on how great her lip is looking, when I am comparing it to how she looked yesterday – not how she looked last month.

But then, last week, when I was finally finishing up a photo album of the girl’s first year – I found a photo that kind of startled me.  This was taken in March of 2014 right before we started her on the corticosteroid and by far the time at which the hemangioma was at its worst.

Patience: Infantile Hemangioma

If you draw a line down from the tip of her nose, you can see that the right side of her mouth is so tiny and petite while the left side droops, distending her cheek and the rest of her face.  To be truthful, at this point I rarely looked inside her mouth because the tissue was thick and tough to move, so I really don’t know how large it was on the inside.

I sometimes look at photos taken of my girl as a newborn and wonder – “Who is this baby with no spots?”  Now, I see this little kiddo in too big sunglasses with a droopy lip that I used to kiss, as if I could make it all better – and I realize that this is no longer my baby either.  She is growing up and changing – and her hemangioma is changing too!  Yay!

Patience: Infantile Hemangioma

We have come such a long way!  Her mouth is nearly symmetrical.  The tissue has softened and shrunk.  The spots have faded from a solid dark maroon to a pale splotchy pink.  Finally, I get it.  I can see what everyone has been telling me.  That photo has struck it home.

Her lip looks awesome.

Even though we still get people at the grocery store asking “Oh – did she fall down?”, the obvious stares are dwindling.  And even though some days I feel like her lip looks like it might be growing again – I quickly chalk it up to my own anxiety and move along.

While I have high hopes that my little weirdo will never be normal, I am feeling much better that at least she will appear to be at first glance.  It will make it easier for her to sneak up on the unsuspecting…

We go back to the dermatologist in two months.  The doctor thinks we will be able to try to start weaning her off of the propranolol then.  There is a 20% chance of regrowth which will require us to go back on medication; but that also means that there is an 80% chance that we can be done with the medicine entirely!  Then, nature takes its course.

You know what?  I kind of hope a little bit of those spots hang around.  How else will I recognize my girl?

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