Thursday, February 14, 2013

Big Things Coming.... Pray, Please?

We have known for quite some time that Hunter has some hearing loss....
The dog barks, the vacuum is turned on right next to him, the blender, a certain 4 year old's yelling ;-)....
There are many days when we wonder if he's even deaf.
Any preemie faces a number of possibilities and unknowns for their future.... learning disabilities, hearing loss, blindness, other physical or developmental delays.... many of them take lots of time to show up.
Deafness (well, none of them, really) has never been a concern of ours.
Not that it was never a 'maybe'.... but if it was ever even a 'reality, it didn't matter!
Our baby who 'should' have had numerous heart surgeries by now, can't hear...
So freakin' what?!
Just the truth.
We find ourselves confused, at times because we know he heard and responded to noises when we first brought him home.... so we've always suspected that fluid was causing his hearing to come and go.
Hunter has failed his newborn hearing screening 4 times and we just recently had a lull in 'more urgent' matters so we were finally able to see an ENT....
This was a LONG awaited visit!
Hunter is developing and growing by leaps and bounds every day.... his language, sitting, crawling, walking.... all milestones we anxiously await because, one day, we were told he never would...
and now we know he will.
We don't know when or how or what will happen between here and there but we know he'll do it all!
Our job is to help him get there.
The ENT confirmed that Hunter is experiencing about a 50-60% hearing loss due to lots and lots of thick fluid in his ears....
which explains why he has the most terrible ... non-existent?... balance!
It also explains why he wakes up crying that high pitch, painful cry every 2 hours... why he doesn't nap... why he hates laying down but gets frustrated because what else is he supposed to do?!... why his mouth forms words perfectly but he doesn't know what sound goes with what word...
This was the most amazing news that the ENT could have told us!
50-60?!?! That's NOTHING! That means he  DOES hear 40-50% of the time!!!
We'll take it :-)
He also noticed, as we do, that Hunter takes all of his social cues from faces... if he can't see a face, he doesn't know what's going on; should he be happy? Sad? Scared? Should he feel secure and safe?  
If I'm holding him and talking to someone next to me, he will put his tiny hand on my face and turn it toward him.... if Mama's happy, so is he :-) He just needs a face to see!
I imagine this is also why he wakes so often at night.... not only does fluid hurt :-( but think about waking up, in the dark, and not being able to hear! It just breaks my heart.
We went in to our appointment a few weeks ago only wanting to know what we can/should be doing... where do we sign up for sign language classes? Does he need cochlear implants? Are we just over-reacting?!
No.... to all of it.
Next Tuesday Hunter will get tubes put in his ears...
such a routine, normal surgery.
But not for us.
Once his tubes are in place, the audiology team will do another hearing test while Hunter is still asleep to measure the air-flow in his eardrums...
and we will know right away if his hearing loss is temporary, meaning it will be restored with tubes, or if it's permanent. If it is permanent, the most he will ever need is a hearing aid or 2!!
We are counting the hours until Tuesday morning!
As we get closer to his surgery, we have a couple prayer requests...
(And I love that, even though we weren't able to ask for prayer publicly in Hunter's first few months of  life, that we can now.... I love it!)
So... if you think about it;
1) If you read this post, you know that Hunter has a cold... no big deal.... unless you're scheduled to be under anesthesia in 5 days :-/ Hunter's cold is worse. We have an appointment tomorrow morning with his pulmonologist to see if there's anything we can do in the next few days to open his airways and clear up this cold so he can have his surgery.
My worst fear is that, because of his history, surgery will be cancelled if his cough and cold are still like they are today. His airways have been sensitive enough in the past, I know they won't even try surgery unless they're clear. (Of course we don't want them to take chances, but we know that getting this fluid out of his ears will open up a whole new world of development for him! We want it so badly for him... and you know how hard it is for us to wait  ;-))
2) Hunter had minor surgery back in October and flew threw it ... no apneas, no breathing issues, and he handled anesthesia well....
It's still anesthesia. And it still affects your breathing. And his Cardiologist has given her ok... and we're praying for his pulmonologist's ok.
But it's still our Hunter.
Above all, I am trying to remember that God holds this life in his hands... and even if I had the choice to move him to someone else's hands, I wouldn't.
He's in good hands.
Capable. Strong. Faithful. Miraculous hands.
So maybe our 2nd prayer request is for his Mama ;-)
That's it. Please pray that his cold and cough clear up and that he handles anesthesia well.
Uneventful-ness is our prayer :-)
Here's the thing about the past 10 months of our lives.... 10 of the most amazing and exciting and challenging and trying months of our lives... full of tests of faith... and promises of grace.... and peace, even among fear...
But every time I start to worry and start to get scared and doubt and wonder and question...
Something happens that shuts me up.
God does something every single time that I take as His way of saying, "Seriously, Lindsay?! After all of this?! Trust me. Just trust."
When these moments have come in the past, sometimes we've seen huge miracles and sometimes we've seen small victories.... but all of them are HUGE to us.... reasons to celebrate.
Well... Yesterday was no different.
I was worried and scared and had so many questions...
Has the fluid been there too long? Has the damage already been done? Will this keep him from sitting and talking and walking? We waited so long to take him in.... is this our fault?!
And I sat down to play with my son while his big sister was napping and this happened....
Just like that. SITTING!!! ALL BY HIMSELF!!!!
"Worry and fear and doubt.... I expect them. But do not for a second underestimate me. I hold this child in the palm of my hand. I am the only one capable of loving him more... yes, even more than you. So let go. And let me."
God said that to me yesterday.... and I got His message loud and clear ;-)
Thank you for praying, friends... thank you for loving us and for being there to celebrate these amazing, exciting, though seemingly small milestones with us. We are so thankful for you!
And we'll keep you posted!


  1. Oh my goodness! Look at that awesome boy looking so proud of himself. I'll definitely be praying that all goes well and that Hunter will have "new" ears and can hear all of the wonderful sounds he has missed. Hunter, you're an amazing little man!

  2. Thank you, Sherry! You are always so encouraging to me... well, all of us, really :-) Thank you for being one of our payer warriors..... it doesn't go unnoticed ;-)



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