I’m going back in time nearly 2 years today… I realized that I’d never really recorded the day of Danny’s ABR. Fortunately (in a sense), this is one of those memories that seems to have crystallized, so I can still remember much of it – the important parts – as though it were yesterday.
It was a Wednesday, because we visited the hospital every Wednesday for 6 weeks after Danny got out of the NICU to touch base with his infectious disease specialist, where we monitored his blood work, watched for signs of issues with his treatment, and discussed how long to keep him on his oral medication. Rather than have to do multiple trips out, I’d made the appointment for the ABR about 3 hours before his regular appointment, and Dr. C had told me to just call when we were out of the ABR so they could fit us into the schedule if we were early or late.
Much like the perinatalogist visit where we discovered Danny was going to be born that day, in hindsight I’d wished John had joined me, but at the time it made sense for only one of us to go. Probably like most parents, even though Danny had been referred – they wouldn’t call it “failed,” just “referred” – on his second hearing screen in the NICU, we held on to hopes that the test had just been wrong and everything would be fine. After all, I told myself, Eric had failed his newborn hearing screen and he hears just fine. Not only that, but at the same time he’d been retested, we had the NICU’s therapists telling us how well he tracked to voices. I’d slammed a car door the other day and he had startled at the bang. Surely he must hear.
In the depths of my mind, I think I already knew how the test was going to turn out, to be honest. But I held on to those hopes and thoughts, not really willing to accept it until I had no choice.
I arrived at the audiology lab not having any idea what to expect inside. I’d been told that Danny would need to be sleeping for the appointment, so I’d tried my best to keep him awake for the whole morning, and hadn’t nursed him much either. She ushered us into a tiny little room and explained that it was soundproof, and we would be doing the testing in here. There were two uncomfortable plastic chairs, and she had me sit in one in the corner right beside the door. I was offered a pillow, which I took and placed under my arms so I could hold Danny more comfortably during the test. She introduced me to the strange machinery in the room, two ear buds that would be in Danny’s ears with spongy ends so they blocked any other sound from getting in or out, some electrodes that would monitor his brain activity during the test. We ended up clipping one of the strings for the ear buds to me to help keep it in place, and I was on monitor duty to make sure they stayed in as well as I could.
She left, the room got dark, and I nursed Danny to sleep so we could begin.
I sat in the dark, in that hot little room, for what seemed like the entire day. I knew the point was for him to be asleep, but I stared at him (since what else was there to do?) hoping he would shift, startle, even wake up. They played clicks through his ear buds so loud that I could hear them, and with each one I thought to myself, this is the one that will surely wake him up. He did shift at times, as babies do, and nurse a little more, but he did not wake.
He always was a heavy sleeper though. He got that from me, surely, and that’s why he’s not waking up.
When the audiologist (not that I knew that’s what she was called at the time – she was just another specialist in a slew of specialists that had overrun our lives) started to come in “just checking the ear molds to make sure they’re set right and haven’t fallen out,” I started to get this pit in my stomach. She tried to be casual, ensuring me that it didn’t mean anything was wrong, she just wasn’t getting readings and they fall out all the time with babies, but I watched her hands closely and the she never really moved the ear buds at all. They were always right where they were supposed to be.
I spent some of that time trying to imagine where she was and what she was viewing, just to keep my mind off of Danny and the test. I envisioned huge panel computers, read outs like the heart monitors they put on pregnant mothers that print out long sheets of paper with scribbles on them. In reality, I’m sure it was just a desk with a computer on it, but I made it larger and grander with every imagining, ever more complex to keep my attention. I spent more time studying the walls and ceiling as best I could in the dark, tracing patterns in the walls and finding shapes in the shadows.
I spent some of the time convincing myself that I was wrong, and the test results were going to be fine. It was taking so long because there was so much to test, right? Maybe he had some hearing, and they needed the extra time to pinpoint just a tiny loss, something that wouldn’t impact his life. I had no idea that it takes less than an hour to pass an ABR (so I’ve been told).
When she came back in, I felt like a deer in the headlights. There were more tests, she told me, and she shifted electrodes and held a tiny little black box to his forehead. She explained that this would test his conductive hearing, vibrating his bones to see what his hearing picks up when it’s not going through his ear canal. That should have been the “a-ha” moment that sound wasn’t going through his ear canal, but I focused instead on it being just another test they have to do.
Finally, we were done. The lights came on, and she left the door open, apologizing for how hot it could get in the booth, especially holding a baby the whole time. I was finally able to shift Danny to the other arm without disturbing wires, and she pulled up the other chair in the booth, sitting across from me and leaning forward. She had a stack of papers in her hands, and she held it out, giving me my first glance at an audiogram and a speech banana.
Then, she told me that they didn’t pick up anything from Danny during the test.
There was so much information that came after that. She explained the difference between conductive hearing loss and sensorineural hearing loss and the difference between unilateral and bilateral; she described an audiogram and the different levels of hearing loss from mild to profound; she explained about hearing aids and cochlear implants and manual options. She gave me a whole bunch of information to read, and told me that we needed to contact an ENT, and that it would be all right. Not a word of it sunk in as I sat there trying desperately not to cry and fall apart in front of her.
And that, as they say, was that. I don’t remember much of that day afterward to be honest. I remember stepping onto an escalator making my way through the hospital to Danny’s next appointment wondering what on earth I was going to do. I know I contacted John somewhere in there, but I don’t remember how or when or any details about how that conversation went. I know I had an appointment with Dr. C that day, and she came in talking and stopped mid-sentence to comment that I didn’t look so great before her face washed with realization and she remembered we’d just come from our ABR. I remember our pediatrician calling me that same day, full of sympathy and understanding and caring. Instead of overwhelming me with ALL the next steps, he just told me to focus on the next one: get him an ENT and make an appointment. He gave me three names, in order of his recommendation, and a phone number for them, then said if and when I had questions and needed anything I could give him a call. (Have I mentioned our pediatrician is awesome?)
As a side note, coming back to the present, it struck me during the parent panel the other night how everyone else spoke of having 2 or 3 ABRs before getting their diagnosis. It never occurred to us to go anywhere else and do the test again. Of course, being a CMV baby, deafness was rather expected (even if I’m still not convinced CMV was actually the cause) and no one questioned the results one bit. I’m glad for that; I can’t imagine having to do that again.
Ugh, ABR’s suck. We still have a lot of them go…
I’m glad you wrote about it, it makes it seem more “normal” that other people do all kinds of crazy tests too.
I like Danny’s shirt in the last picture
That shirt came from a friend down in New Orleans who actually has her own shops (both a live walk in shop and an etsy store) – http://www.etsy.com/shop/happyfamily – they have some of the cutest stuff!
Danny sure has been through a lot. Cute pictures
I hope everything goes well on his testing, keeps us up to date.