Tomorrow we go to Atlanta with Charlotte for follow up with the Cleft Palate Clinic.
I would be lying if I said I was not nervous.
This appointment was supposed to have taken place when she was nine months old.
She’ll be three years old next month.
It took me this long to get to the point where I could even think about facing the hospital where she spent her first 21 days of life without having an anxiety attack.
This is the same hospital in which I tucked myself into a corner of the sleep room in the NICU area, blasted Linkin Park over the MP3 player and checked out. No desire to come back. Just wanted to stay curled up under the blanket and pretend none of this was happening. Nope. Not to me. I didn’t have a baby in the NICU. She wasn’t downstairs having major jaw surgery at just nine days old. We weren’t doing this. I was stuck in the middle of a really bad dream and I’d wake up at home with a normal baby.
I can still see that hallway, that sleep room, my nostrils fill with the scent of the surgical soap that killed my hands as I washed them every time we went into the NICU, every time i pumped, every time I went to the restroom there.
I remember the pumping rooms in which I spent most of my time staring at the clock wishing I could nurse my daughter instead of shoving my breasts into hard cold flanges, flicking a switch on a massive antique pump, adjusting the suction to just below Holy Crap that Friggin Hurts.
But tomorrow is the day we finally go back.
Chris is going with me as a safety. I don’t know how I will handle this. I’m hoping for the best. Praying for the best. I keep thinking about how far we’ve come since then and how lucky we are that we don’t have a lot of the problems a lot of parents have with their Pierre Robin kids. She’s talking, using sentences nonetheless. She’s breathing on her own. She eats – oh lord, she eats – she’d eat herself sick (and has) if we let her. No oral aversions here.
But she does have a fistula – an opening in her palate repair. It’s at the back of the throat. And her enunciation is off – it’s nasal. She can’t say “s” without blowing air through her nose. Chris and I understand maybe 75 – 80% of what she says and it breaks our hearts that we can’t even understand our own child all the time. It’s led to frustration on both sides and is now turning into a discipline issue.
I’m afraid we’ll be told she needs surgery. I’m afraid of what that will mean for us and for her. I’ve talked with her about the possibility of surgery. She knows that they would give her some medicine to help her go to sleep and fix her mouth while she was asleep. That she might be owwwy when she wakes up and that they’d have medicine ready to help with the owwwy.
She seems cool with it.
I have forgotten how to let her go with the doctors – I got so good at it when she was in the NICU but she’s been all ours for almost three years now. I don’t want to hand her over to be taken to surgery. I want to go with her! That’s my baby you’re taking!
But now I’m thinking too much and need to stop and let God do all this worrying for me.
Please pray for us as we face tomorrow.
Pray for a peaceful heart and soul for me.
Pray for a pain-free and comfortable day for Chris as he goes with us.
Pray for a positive evaluation.
Pray that I am able to handle any news of surgery with strength and grace and truly give it to God.
Thank you so much. I’ll be posting an update tomorrow.
I will be praying for you to sense His peace, and that the Great Physician be at her side and His guardian angels surround the room. I’m including a link below to a site specifically dedicated to the needs of children. This site was created by the grace of God after I learned of a sweet baby girl facing heart surgery. God be with you! Cheryl