Monday, July 16, 2012

Update on Audrey

One thing I don't talk about much is Audrey's cleft palate.  Part of me doesn't like to talk about it with people because I don't want people to dwell on her birth defect.  It's not something that I just immediately say about her to people so most people aren't even aware that she has this problem.  It's not that I'm ashamed of it, but more that it doesn't define her and so I don't want people to see her as the baby with the deformity.  I am even more protective of her than I was with Barrett and I'm pretty protective of him. 

Another reason I don't talk about it much is that I really don't think about it much.  The palate is just another part of what makes Audrey Audrey.  The same as the way she drools, the way she chews on my necklaces, the way her hair is growing in so crazily.  It's not anything I have control over or can pick and choose, it's just another thing that makes her her.

We do still deal with daily issues with this palate issue so it's not like I can ever forget she has it.  Her drooling is beyond excessive.  The girl can soak through a bib and her shirt all the way down to her diaper in under 10 minutes.  She also still has days where she just doesn't want to eat.  I don't know if she's that way because of her cleft or if she'd still be that way nonetheless.  And I'm still dealing with pumping 5x/day so it's not like I can easily forget that!

She's still a petite little thing.  When we took Audrey in for her 6 month checkup (2 weeks late, so she was really 6 1/2 months), she weighed about as much as Barrett at his 4 month appointment - and he is/was a little thing too.  The doctor raised some concern but I'm trusting my momma instincts again and I think she seems fine and proportionate so I'm not getting too worked up about it.  Most days she's eating in the range of amount she's supposed to be eating (25-30oz).

One thing I do think she's behind in is communicating.  I can't really remember what "normal" babies are supposed to be "saying" at this age.  But she hasn't made much progress beyond the normal baby squeals and coos and vowels sounds.   She's definitely going to be a lot slower in talking, so that's expected.  I am taking her in to her speech pathologist this month to see if there's anything I should be working on to help her out in the meantime and to have her check Audrey out.

We will probably schedule her surgery for the end of this year.  It's tough to think about the surgery and aftermath because I know it's going to be brutal for all of us.  I really don't know yet what the recovery will be - I've heard horror stories of sleep and eating being messed up for weeks but then I've heard positive stories of quick recoveries too.  On one hand I want to put it off as long as I can because I am dreading seeing her in pain and I want to be sure her little body can withstand the surgery and anesthesia.  But on the other, it'd be nice to do it sooner rather than later for her speech and so she's younger when she has to go through such a traumatic event. 

I never imagined that we'd have to deal with a major surgery on our little baby.

The next steps are to take her to the Speech Pathologist on her cleft team at the end of this month.  She'll assess her weight and her speech and probably give me some techniques to try.  We may also reach out to the county's Early Intervention program and see if this is something that she would qualify for and would make sense for us to utilize.  I hear that the speech therapists come to your home, which might make sense for us and our crazy schedules.  Hopefully we can get her surgery scheduled at some point too, so we can start planning around that. 

One thing I recently heard from another cleft-affected baby's mother was that God makes no mistakes.  I loved that!  Our baby is absolutely perfectly made by Him and there's a reason our little girl has this cleft.  I know it'd be so much easier if she didn't have it.  But I try not to think of it that way - even when I'm pumping, even when I'm washing what feels like a hundred bottle/pump parts every day, even when I take her to all these doctor's appointments.  Our little girl is such a gift and this cleft is just one more (hopefully temporary) part of her.

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