One Family’s Journey
Those Words on Our Roller Coaster Ride
By Amanda Allen, South Carolina H&V
There could be fluid behind her ears, the nurses said. The NICU is loud, and babies tune things out after being around all those loud noises, they said. Here is an appointment for a follow-up, they said.”
Descriptive words like hard of hearing, deaf, the little girl with cochlear implants were never the words we thought we would hear when someone described our child. Before her birth four years ago, it never occurred to us that those words would EVER be a part of our family’s vocabulary. Fast forward to the present and those descriptive words, or similar words, pop up in our daily discussions in some form or fashion.
Those words change nothing about our love, dedication, and fight for our daughter. They have, though, taken us on an unexpected journey of learning, education, and support for each other, as well as other parents that have found themselves right where we were: SCARED!
During what I thought was an easy pregnancy, my body decided to turn on itself. At 30 weeks gestation, I was rushed directly from a doctor’s appointment to the hospital by wheelchair. Completely unexpected and blindsided are understatements. Later that night, our precious bundle of joy made her entrance into the world, ten weeks early.
We don’t have answers as to why she was born prematurely, we just know that it was meant to be.
After eight weeks in the Neonatal Intensive Care Unit (NICU), doctors began getting everything in order for our little girl to be discharged. Her vision test was done, and all went well. Then her car seat test was done, and all went well. Then it was time for her hearing screen. I wish I could tell you it went well. You and I know that if it had, I would not be writing our story. She referred twice on her hearing screen. No worries, right? Errors happen, right?
There could be fluid behind her ears, the nurses said. The NICU is loud, and babies tune things out after being around all those loud noises, they said. Here is an appointment for a follow-up, they said. Being discharged from the hospital we thought our child was in the clear. She was able to finally go home. We had no idea our journey was just beginning. I have since learned that fluid and NICU noise were less appropriate to say than “your baby needs a follow up on this screening result.”
We pursued testing with a local audiologist, but it was inconclusive. After a few visits with a pediatric audiologist in another city, it was confirmed that she had profound hearing loss in both ears. I remember one of my first thoughts being that she had not heard all the times I had sung “Jesus Loves Me” to her, nor the prayers I had whispered into her ears in the NICU. That is when another aha moment hit me; my child didn’t know what her mom and dad even sound like. How could this be?
Even though she could not hear, as multiple tests had proven, insurance insisted we fit her for hearing aids. Yes, that roller coaster ride that many parents with children diagnosed with hearing loss have to board. Now, I love a coaster but this one was not enjoyable at all. Exit, please!
After the coaster was over, we were ready for our next ride. The Ferris Wheel! Is she a candidate for cochlear implantation? Testing determined she was. I do love a good spin on a Ferris wheel. Just think about it, when you get to the top you can just look out at the horizon, and as far as you see there are possibilities.
Surgery was scheduled. Her first procedure would be at nine months old and activation of the device at 10 months of age. She got her second device implanted at 10 months of age and activated at 11 months of age. (Her surgeon felt that because she was big enough, had robust auditory nerves, and had a significant hearing aid trial without benefit, that she could be implanted before age one.) After she healed from surgery and was released by her ENT; that is when we really hit the ground running.
We were going to speech therapy in town twice a week, audiology appointments and ENT appointments nearly two and a half hours away. We were also talking as much as we could so that she could hear all that she had not heard for so long. I remember carrying her to the refrigerator and literally telling her every item that was inside and looking for her response just to give her as many words a day as possible. I can talk your head off, and even I was running out of words, which is nearly unbelievable. While we learned about ASL and Cued Speech, we felt that we should focus on listening and spoken language for now and immerse Olivia in spoken language, and hope to learn ASL in the future.
It was not easy and made our entire family softer, yet tougher, at the same time. For parents who are new to the journey, it does get better. It gets easier with each day, but you might not notice at first. I promise you that it does. The days may be long, but the years are very short, as they say in mom groups.
I am overjoyed to report that our daughter, who is now four, and was born profoundly deaf, just tested at the beginning of February at an expressive language level of five years, and articulation of four years six months. She tested ABOVE her age!
Yes, “those words” that have been used to describe our precious bundle of joy, our firecracker, our into-everything little girl, have not held her back. If anything, we feel as if her ability to hear, though it may be different from others, has allowed her to excel and soar above some of the typical hearing children in her 4K class.
One last piece of advice. Be careful what you say. They do hear and repeat everything you say. Even if they didn’t hear it correctly. And our kids make our journeys amazing. ~
H&V Communicator – Summer 2021