What’s Up With Hope

Saturday night, the girls and I went to dinner. The Civee and I wanted to go to this Indian place, and Hope didn’t really care where we ate.  When we go out to eat, as long as there’s room, we’ll put Hope’s carrier on the table angled where we both can see it.  Saturday night was no different- The Civee and I sat across from each other, with Hope on the table.  She fell asleep shortly after we got there.

The waiter came up and started to make small talk, saying his wife is pregnant and due later this year.  Then he asked “what’s up with her,” while pointing to Hope.

I quickly replied “she’s just sleeping,” not realizing he was asking about the bandage across her face.

I guess by this point, The Civee and I have gotten so used to Hope’s cleft lip that when someone’s trying to ask about it tactfully we don’t realize what they’re doing.

Before she was born, as The Civee and I were being told about what having a baby with a cleft lip and palate meant, we were concerned.  Everyone’s aware of the cosmetic issues cleft kids face- that wasn’t a big deal to us.  We were warned that she may not put on weight (because she wouldn’t be able to eat correctly) and that in a worst-case scenario, we’d have to take her to a hospital to have her fed through an IV.

Fortunately, Hope’s been growing.  A lot.  She’s already more than 11 pounds.  And she’s tall (I think I know where she gets that from) for a three-month old.  She’s developing her own little personality, and thanks to some do-it-yourself surgery prep, her cleft has already closed by more than half.

There are a few pre-surgical preparations that doctors like to use before a cleft lip or palate repair.  Some involve implanting devices into the baby’s mouth which, in addition to being painful, have to be adjusted by a doctor on a regular basis.  Our doctors like a nice, easy approach.  Basically, we take two band-aids, two orthodontic rubber bands and a piece of surgical tape, put it together and apply it to her face like you see in the picture above.  We’ve been doing this since she was two weeks old and at first, we didn’t think it was doing much.  But at each appointment with our cleft team, we’ve been told that the cleft is closing and should be easier to fix when it’s surgery time.

Unfortunately, a child with a cleft lip and palate may need at least three surgeries- one to repair the lip, a second to repair the palate and a third to repair the gumline.  Hope’s first surgery is scheduled for the middle of next month.  We’ve been told the second surgery will be in the winter.  And the third will be sometime after all her adult teeth have grown in, between the ages of eight and ten.

So in a month, Hope’s lip will be repaired.  And the next time a waiter asks us what’s up with our baby, we’ll be able to say “she’s asleep” and have that answer their question.

As I mentioned, Hope is developing.  Over the past few weeks, she’s discovered her hands and feet.  Now she’s learning what to do with them:

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One thought on “What’s Up With Hope

  1. I’m wishing Hope an easy surgery and a speedy recovery.

    Your story reminded me of a time when I was babysitting a little boy with Down Syndrome when I was in high school. We were in line at a concession stand at the local pool and an old lady in front of us asked me what was wrong with him. I was so used to this child that it took me forever to figure out what she was talking about. I thought he was bleeding or something!

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