Photo by Sharon McCutcheon on Unsplash
People were in and out of our room constantly. Roses was a bit of a celebrity in the hospital. Even the person who brought me my meal told me he had heard about her hair. She had a good two inches of thick blonde hair when she was born, and of course, she was so tiny, like a pixie.
Because she was so small they were constantly having to check her glucose levels, her heels looked like pincushions from all of the little pricks when we went home from the hospital. I went everywhere with her the first night. After her bath, was her first attempt at a hearing test. She was fussy during that so they said they would try again later. They tried the basic test two more times before we left with that life-changing referral letter in our hands.
False hope isn’t always helpful
The nurses assured me that newborns fail all the time in the hospital and then it turns out it was nothing, a little fluid, vernix, a thousand different ways the hearing test was failed, none of which meant she would actually have hearing loss.
I figured that I had nothing to worry about, but I have always been a rule-follower, you tell me I need to do something and I will. So with my referral in hand, I called to make our recheck appointment for six weeks out.
Photo by Glenn Carstens-Peters on Unsplash
Waiting is the hardest part
Those six weeks of waiting were awful.
I wasn’t really a child person before having my own, I hated babysitting, and I never wanted to hold other people’s babies (still don’t). So needless to say, my experience of normal newborn behavior and responses was limited.
Roses didn’t sleep, she couldn’t latch, and through it, my husband kept on telling me that there was something wrong with her hearing.
I was trying to be in my happy place, a land called denial and he kept on dragging me back to the real world.
On top of that, they made us wait six weeks before the retest. Nothing like having to wait to find out if your child has a life-altering disability. I still don’t really understand why they make you wait so long. It is possible for any issues like fluid in the ear to clear up in that time, but does it really take six weeks?
Photo by Levi Meir Clancy on Unsplash
Retesting only brings more questions
I was so freaked out and all I could think about was the 5 years of French that I took and that I could only remember the dirty phrases we had shared behind our teacher’s back.
How was I ever going to learn sign language?
The day of our retest came. For anyone else who has had to go through this, I get it, it sucks.
Your baby needs to be asleep, but good luck with that because you had to drive a while to your appointment and they fell asleep in the car.
You watch a monitor, you can’t read it, but you still try.
And you pray, you have never prayed for anything more than you have this, and yet your prayers are not answered. At least not in the way that you demanded. They are answered with a resounding no.
Photo by Ben White on Unsplash
When Roses failed her retest all I could think about was how I was going to tell my boss. Before I went on maternity leave we were focusing on not using negatives and I was trying to think of a different way to say she failed her newborn screening.
And then I got mad at my boss for not letting me be negative. I was deflecting.
Even though I still didn’t really believe it was true, I kept going.
Every appointment brings another one
Remember that bit about following rules – well it worked out here.
Our audiologist sent us to the ENT, and to an eye doctor, and then our ENT sent us to do some basic genetic testing.
I sought a second opinion from another ENT. My bit of advice is that your second opinion should be from an audiologist if you think you want one.
That ENT told us to do a sedated test, and we did.
All the tests said that our daughter had hearing loss in both ears and she needed hearing aids.
Now this whole series of events may sound like it took forever, and it felt that way, but I was forcing my way through the steps quickly.
This is why my husband said he knew Roses would be okay.
She got her hearing aids at 4 months old, and the moment they were turned on I realized how much she had been missing.
Our results were not as dramatic as kids having cochlear implants turned on for the first time, but they were dramatic to me. I knew at that moment that her hearing loss was real. And selfishly all I could think was that my life would never be the same.
Photo by Zoe Graham on Unsplash