The Start of the Journey

I wish I would have started this blog the day Gaige was diagnosed with hearing loss.  What a crazy journey to document.  I hear other parents talk about back when their child(ren) were diagnosed, and the emotional and financial struggle it was and is.  I don’t very often get to hear current accounts of what people are going through.

I was induced at 38 weeks, because my baby had stopped growing in utero.  After a long, exhausting labor, the doctor suggested the use of forceps, as a last-ditch attempt to avoid a c-section.  Understanding the risks, we of course, agreed.  Unfortunately, our little Gaige ended up landing in that small percentage of the risks.  By the end of his first day, he was in the NICU with breathing apneas, low platelets (as in one platelet count away from needing a blood transfusion), low potassium, low oxygen levels, and jaundice…but that is a story for another time.  All of this started when they initially took Gaige for his newborn screening, and realized he kept having spells where he’d stop breathing–which naturally pushed the screening back.

After a week in the NICU, Gaige was finally starting to recover.  The doctor preferred to have his screening out of the way, before he was discharged, and ordered the test to be administered.  A nurse came into his room in the middle of the night for the screening, and kept having issues with the machine.  She promised she would be back first thing in the morning with a different machine.  Sure enough, she showed up again in the morning for another try of the hearing screen.  After a few attempts, she concluded that the machine must not be working, because she wasn’t getting any results from him and “he could clearly hear”.  The doctor wanted to discharge Gaige that day, and agreed to let him go, on the condition that we have an ABR done at Boys Town.  Okey dokey, no problem!  Two weeks after being discharged from the NICU, Adam and I were driving to Boys Town for Gaige’s ABR.

Do you ever say or do something in passing, that turns out to be significant later, and you never forget it?  I remember riding in the truck, to the hospital. As we pulled onto the exit, I will never forget saying these words, “I can’t wait to go get the ABR done, just so we can officially hear that Gaige can hear, and move on”.

HA!

We went in for the ABR, and proceeded with the test.  After a while, the audiologist wanted to rerun it.  Then she wanted to run a couple other small tests.  At that point, we knew something wasn’t quite right.  After all was said and done, you could see the pain in her eyes, that she was about to hurt us.  Gaige was diagnosed with bilateral profound sensorineural hearing loss.  We were so numb.  I don’t remember much, it was all just a blur.  I do remember the audiologist trying to talk to us and explain options to us, although I couldn’t tell you what she said.  She gave us a thick binder, chalked full of information, and pamphlets on where we could find support.  She set us up with a follow up appointment, and we were sent on our way.

Looking back now, I get a little angry with myself for how I reacted.  But as two hearing individuals, with absolutely no hearing loss in our family history, or any friends or acquaintances with hearing loss–this was just not a scenario that we were prepared for.  I remember sobbing on the phone, as I had to explain to family and friends, our situation.  I remember pouring through all of the information I could get my hands on.  Information overload has always been a coping mechanism, for me.  After the first couple days of letting the news sink in, I think we started to come around and accept it.

Since then, it has been an absolute roller coaster, as we learn to navigate the challenges of living in a world that is completely foreign to us.  I constantly worry about the choices that I have to make for Gaige.  I worry whether I’m helping or hurting him, whether I am making the choices for him or for my own selfish reasons, and whether he will be happy with the choices that I have made when he is a grown man.  I constantly question myself, and why I am making the decisions that I am.  So far, I have always concluded that we are making the right choices for our family.

Above all else, we believe that the best thing we can do for Gaige, is to give him the power of choice.  We are doing the cochlear implants, because we want him to have the choice to communicate and interact with the hearing.  We are also doing sign language, because we want him to have the choice to communicate and interact with the deaf.  We want to do the cochlear implants now, because they will be most effective if he has them during his formative years.  Gaige will have the choice to either use them, or to move completely to signed communication, and he will be perfect either way.  Gaige will have the choice of any career that he wants (barring a military career).  Gaige will have every opportunity we can make available for him, so that he can make his own choices and go down his own path.

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