Friday, August 14, 2015

R is for Resilient {Palate Repair Recovery}

I've had the blessing of receiving countless messages, texts, phone calls, and e-mails inquiring of how Miss H is recovering from her surgery.  The best word I have is resilient.  Hannah is an amazing, strong, brave, resilient little girl.  We are blown away with her recovery.  Our neighbor asked us the other day if we felt like we'd gotten away with something because it was going so well.  Truth?  We are so pleasantly surprised by how she is handling it!  She is doing remarkably well and much better than we anticipated.  That is not to say we haven't had our fair share of struggles, however.

Hannah had her surgery one week ago.  One week ago she was a mess of an overwhelmingly scary amount of bloody drool and misery.  She slept for nearly 24 hours.  Saturday she refused to swallow her own saliva, let alone food or drink.  We felt like we would never get out of the hospital.  And then something happened.  Either she just got hungry and thirsty enough or she really believed my firm tone about sitting in time in if she continued to refuse to drink, but she started to drink.  Pedialyte and grape juice mixed together (thank you, Nurse Cadie, for that recommendation!).  Once she realized she could drink and drink with minimal pain, she moved on to food.  It was slow, but slow and steady.  By Sunday morning she had perked up and was looking (and acting) a lot more like our Hannah!

Once home she needed a lot of holding and a lot of snuggling.  She is very nervous about Mama leaving her.  She spends quality time in the ergo each day.  She wants to keep close and keep an eye (or hand) on me at all times.  This is not surprising based upon her separation from me at the time of surgery and we will oblige her need for Mama right now with the hope that it should go back to where it was rather quickly.

Our greatest struggle at home was the night terrors.  All...the...time.  The pain medication we were giving her was making sleep all but nearly impossible.  She had to sleep on me, then have a night terror, then settle back down to sleep an hour, another night terror, and so on.  This was through both naps and during the night.  By Wednesday we decided to see if we could get her down to just over the counter pain management and it worked!  She slept sooooooooooo much better!  She cried about three or four times that night, but that's what it was.  Crying.  She was coherent and knew who I was.  I could settle her quickly.  Progress, people!  Progress!  We will take it!

She is eating well, but growing in her frustration on the limitations.  It is a guessing game to know what might strike her fancy at any given moment.  She wants her "usual" snacks and most of them are off limits. She wants to eat what we eat and so many things are no-no's right now. Favorites right now?  "China noodles" (chicken lo mein) and frozen go-gurts.  I'm running out of ideas and beginning to wonder exactly how long we have to carry on with this soft food limit?  We see the surgeon on Wednesday and that ought to give me a better idea.

She wants to suck her fingers.  So badly.  She struggles to get to sleep and needs some rocking and bouncing from Mama again to help her drift off to sleep.  She is so sad.  She will look at those fingers and then look at me and say, "Ow!  No, no!" 

She is incredibly difficult for me to understand and she is beyond annoyed by this.  I was fluent in Hannah prior to the surgery.  We could have full conversations.  No context needed.  I understood what she was saying about 99% of the time.  Now?  Not so much.  I know I'll become fluent again, but things are so new in her mouth and sounds aren't being formed in the same way and I just can't understand her as much as I once could.  I need lots of context, some grunting, and some pointing.  She is very sensitive to this and cannot stand that I cannot understand her.  This has been the greatest source of meltdowns since we got home from the hospital.  I don't blame her.  She's fluent in English and clearly speaking in English to me, yet I cannot understand.  How frustrating must that be?

We finally (finally!!!) got assigned her speech therapy session today and will being that once we get the all clear from the surgeon (probably in early September).  We've been waiting for this to line up since May and had really hoped to get in for some sessions prior to her surgery so she could begin getting used to it.  Obviously that didn't happen.....

Her voice has changed.  A lot.  It is so hard to describe and explain, but it is very different from what it once was.  Chris and I both heard it the instant she cried in the recovery room.  Just like her lip repair, I miss her old, raspy, alto, LOUD voice.  I will get used to her new higher pitched, more nasal, and quieter tone and I'll come to adore it, just like I did with her new smile.

Overall, we couldn't be happier with how she is doing.  She is amazing.  She is strong.  She is resilient!

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