Mila’s Road to Hearing
So, before we dive in, let me take you back to Mila’s first ABR a couple of months ago…
Her first ABR was done on June 26th while she was sleeping, not sedated. She woke up frequently and the test was stopped and started again a couple times to make sure the results they were getting were accurate, meaning the nerves in her brain were responding to sound, and not muscle spasms. At that ABR we got the diagnosis of Mila’s profound hearing loss, or deafness. At the time our audiologist said she believed there were some frequencies she was responding to, but that it was definitely not enough residual hearing to have access to speech sounds, hence the recommendation for cochlear implants. Fast forward to September 11, 2017.
Back to Dell Children’s Hospital we went, while Bear stayed with my mom. On this day they were going to do an ABR, and MRI of her brain and a urinalysis. All of these tests were done to rule out any potential syndromes associated with her deafness. The doctors want a full picture of her health before we keep moving down the road to cochlear implants. At about 11 am we got checked in and almost immediately the heart nurse came in and began the EKG. It was super quick and everything looked great! She was followed by the Anesthesiologist who gave us the run down of everything that could go wrong while she’s under. *Cut to me smiling confidently and nodding my head while simultaneously freaking out on the inside.* After some paperwork and a whole lot of kisses and “I love yous”, we handed our girl over to the wonderful team of doctors who’d be taking care of her for the next few hours.
We got a pager and because we were starving, immediately went to the hospital cafeteria where we had a little mini lunch date. We’ll take what we can get! After lunch we went back downstairs to wait for the pager to go off, and it did about 30 minutes later. Mila’s audiologist met us behind the surgery doors and took us into a consultation room to go over the results.
She whipped out the audiogram and my eyes were immediately drawn to the x’s and o’s all the way at the bottom of scale. There it was in black and white, again. “Basically, this time I got no response on either side”, she said. She continued by explaining that she thinks Mila’s first ABR in June gave false readings because of her frequent wakings and that this test was a much more accurate representation of her hearing loss. Essentially, she tested at the bottom of the spectrum; you couldn’t get any lower. Actually, the testing equipment they had couldn’t go any lower to find what frequencies Mila could hear. She said, “If she were standing on top of a large lawn mower, she might be able to pick up a little bit of it. But at that point, she would most likely just be feeling the vibration, and her brain would interpret that as sound.” Wow. I mean, we knew Mila was deaf, but this real-life example gave us new perspective. She said that with hearing aids, Mila does hear some things, but definitely doesn’t have access to all speech sounds, as we expected. Our hopes of her not needing implants pretty much flew out the window. But for some reason, it wasn’t crushing. Maybe because we’d had a couple months to get used to it. Or maybe because Jesus had started working all of this out in us. Probably both.
We wrapped up the meeting and had a little small talk. She explained that at this point, Mila was already heading to have her MRI done. That would take another 1.5 hours, so we went back to the waiting room. Shortly after, we got a call that Mila was in recovery, but we couldn’t come back until she was awake. About 15 minutes later our pager went off and we anxiously hurried back to meet her. I expected a screaming, hungry, confused baby but what we found, was a sweet, drowsy, and cuddly little girl. She would slightly open her eyes to see us, then would close them to drift off for a couple minutes. We moved to a recovery room and when the anesthesia began really wearing off, she became her usual self– high drama! For the next hour or so she ate, fussed, and we loved on her and waited for the meds to wear off. Once she had a full belly she was happy again. We left the hospital at 4:30 pm, about 6 hours after we arrived. It was a full day and she was such a trooper.
On September 21st, we went to another hospital for an eye test for Mila. A lot of times the eyes and ears are connected if there is any kind of syndrome causing the deafness, so our doctors wanted a routine eye check. This test was relatively quick- they dilated her eyes for about 45 minutes, then did a 10 minute exam. She passed with flying colors! The doctor said everything looked perfect and she didn’t expect there to be any further need for us to return. Thank you, Jesus!
This past week we met with Mila’s ENT doctor to go over all of the results thus far and talk about her candidacy for cochlear implants. Her doctor confirmed that every single test has come back normal and that she is still a perfect candidate! It’s all becoming kind of real now.
Here’s some ways you can be praying for our family:
- We have several more appointments coming up. (I know, it seems like they never end.) In the next month or so we’ll be doing a neuropsychological assessment and audio-verbal therapist consultation. In February, we’ll do some genetic testing and hopefully get some concrete answers. Although it doesn’t change our reality, it will be nice to put a name to whatever it is we’re passing on to our kids. Please pray with us that we do get some answers and that these appointments will go smoothly and continue to confirm Mila’s candidacy for cochlear implants.
- We are starting to get pretty “in the weeds” in our research about the different brands of cochlear implants. Right now we’re looking at Cochlear Americas and Advanced Bionics. We’d love prayer as we decide what piece of technology will be best for Mila.
- We firmly believe that God is writing Mila’s story and we’re just floored we get to be a part of it. Every decision we make is with tons of prayer. Please continue to pray with us that Mila would grow to be a young woman hungry for Jesus, that she’d be dangerous to darkness and that she’d find purpose in her unique story.
So, for now… we keep moving forward. We’re putting one foot in the front of the other and making decisions one day at a time. We will continue to use Mila’s hearing aids, as we believe the nerves are being stimulated and pathways in her brain are being kept open. Most of the time we feel like information is coming at us like a fire hose and we can barely take it all in. But I can honestly say we’re in a really good place. We’re connected to many families who’ve walked this road and are now reaching back, giving us a hand as we navigate it for the first time. We have an amazing support system in our families who take care of the kids several times a week and occasionally on weekends so Niko and I can get away and talk through everything we’re learning. We have the best church family that’s praying us through these seasons and learning ASL along with us. And for these reasons we simultaneously feel overwhelmed, but so well equipped in this uncertain journey.