Thursday, April 11, 2013

Signs are to the eyes what words are to the ears...

If you're a follower of our Facebook page, this might be redundant.... bear with me while I catch up a little ;-)
Obviously, so much was going on when Hunter was born that some 'typical' tests and protocol just weren't priority until he stabilized. Apgar scores were recorded so this includes things like foot and hand prints, hearing and vision testing, etc.
Our decision to have Hunter flown to the NICU closer to our 'new' home was made quickly and the Medi-Jet arrived in record time so discharge tests and exams all happened very quickly! In a matter of about an hour Hunter had Heart, Liver, and Kidney ultra-sounds, vision screening, tons of blood work, hearing screening, PT evals, and probably a whole lot more that I don't remember.
I do remember his hearing screening and I remember that he failed.
This didn't mean that he couldn't hear but it did mean that we would need to follow up when we got home with an audiologist.

Our new NICU repeated almost every test that was done previously because they had newer and more cutting-edge technology... and they just wanted to create their own 'vision' of who Hunter was. They repeated his newborn hearing screening and he failed again.
One of the DOZENS of post-NICU appointments that was made for us was with an Audiologist who would conduct another ABR... a test that would measure Auditory Brain stem Response... or, how Hunter's brain responds to sounds; how do the bones vibrate... or do they?! How does the sound travel through his inner ear... or does it?!
He failed again.
This time, it was very clear that Hunter was 'failing' his hearing screens because there was the detection of fluid in his inner ear.... if fluid is in your ear, the bones won't conduct sound.
So we headed to the ENT to discuss if tubes were a logical next step in learning more about Hunter's hearing.
And we all know how that went.... we got TUBES!
The ABR was repeated a 4th time while Hunter was still sedated after surgery.... and he failed again.
Are we frustrated yet?! Ugh.
Hunter's ears were very full of fluid and they drained for WEEKS after his tubes were placed!
We saw the Audiologist again about 3 weeks after his tube surgery and Hunter was finally old enough to have a Behavioral Test vs. another ABA...
** An ABA is only successful if the baby is sleeping or completely still throughout the testing; Hunter never sleeps, period so these were VERY hard tests!
** A Behavioral Test is done in a booth ... various sounds are presented to the infant and the Audiologist records the infant's responses to each sound. This gives the Audiologist a detailed record of what sounds, at what pitches and frequencies the infant is hearing.


Here's the thing...
We have known since we brought Hunter home from the hospital in May 2012 that he doesn't respond to voices and daily noise like Hannah did at his age. He has never turned to look when Mommy or Daddy walk into the room.... he doesn't jump or wake up when the dog barks... he doesn't startle in his sleep...
Knowing that your baby doesn't hear your voice is hard.... and scary.
Hunter takes his social cues from faces.... if he can't see your face (ex. at night, in the car, etc), he panics. You can see in his eyes... "Is everything ok?" "Is Mommy happy or sad?!" "Should I be happy or sad?"
And when one of us has a bad day... so does he.
If you're holding him and he can't see your face, he'll make you look at him.... by touching your cheek, turning your head, or even hitting you... he'll do whatever he can to see your eyes because when he can't, he is insecure.
Sitting in a booth, facing a wall, and knowing that you're expected to respond to something... but you can't hear or see anything... is terrifying to a baby...
to Hunter.
Behavioral tests are stressful for him... they always give accurate information... but they're tough.
It's tough on Mommy, too.
Yesterday was our last behavioral test with a new Audiologist.... She had reviewed Hunter's file and precious test results and when she walked in the room, she didn't introduce herself, she didn't shake my hand, she didn't smile...
"Why doesn't this baby have hearing aids?!?!"
Thank you, Lord.
We have never asked anyone to pray that Hunter's hearing would be restored or that he would pass any of these hearing tests.... we've only been praying for hearing aids!
OUR BABY NEEDS TO HEAR OUR VOICES!!!!
When you can't hear, you can't talk... and he's not talking.
When you can't hear, you can't respond to your environment...
When you can't hear, your own noise level is awkward... and loud.
Hunter needs one more ABR under sedation in order to get accurate frequencies of sound for his hearing aids... this ABR is scheduled for late May (I'm praying for a cancellation before then!!) and, if insurance authorizations and the hearing aid mold process all go as planned...
We'll leave that last ABR with hearing aids.
Our baby will hear.
He'll know what I sound like when I sing to him... he'll get excited when Daddy comes home from work and calls his name... he'll be able to 'talk' on the phone with our family who doesn't live here... he'll recognize Jesus Loves Me and will find comfort in lullabies played in his room...
In the mean time, our job is to learn sign language.
As excited as we are that Hunter will finally hear, we also understand that words and noises will have no meaning to him...
we have to teach him!
Our plan is to learn 5 signs as a family each week.... incorporate them in our daily lives, live and breath them.


We didn't waste any time connecting with our state's Deaf and Hard of Hearing Department and ordering whatever books and DVDs we could find!
Here's a very rough look into what Hunter does and doesn't hear...
He can hear most of what is below the red line but at a much much lower pitch than you or I do.... he cannot hear what is above the red line; namely, voices. (PS... Technology today AMAZES me!)


It's so exciting and comforting to know what he can and cannot hear.... it keeps us grounded and patient. We're excited to know how we can communicate with him now.... and love knowing that, SOON, he will be able to hear us!


Anxiety is there, yes.


But today, this happened....


Today was my first day at my new gym ... It is not a coincidence that the director of the kids program is profoundly deaf. I walked in to pick up my kids and he was sitting on the floor with Hannah and Hunter, teaching them sign language. I will never forget that sight as long as I live and can't even find words to describe what it did for my heart.


I am so thankful that God continues to intentionally place people in our lives who encourage, support, and teach us every day! He is so so good (if I haven't mentioned it before ;-))!


Hannah and I picked our first 5 signs last night....


video
 Signs are to the eyes what words are to the ears....


Hannah's signs to my eyes are what God's signs are to my heart.


God showed me a sign today... in the form of a man who ministered to my children.


And if that's what happens when I go to the gym, watch out! This Mama's gonna get ripped! HA!




2 comments:

  1. Lindsay!! I have seen hearing tests like that!! Amanda, our daughter cannot hear in the pitch of voices either. Very low tones or very high tones she can hear. I love sign language, and you will too! It is so expressive and natural, it will soon be second nature. Do you know there are dialects in sign language? So as you learn, don't be stumped because you see different signs for the same item...it shows what part of the country the signer is from :)

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  2. I love reading your posts! Continued prayers for you all!

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