ABR test

Yesterday was the day of the long-awaited ABR test. I was so nervous I felt sick to my stomach and had a headache all night the night before. They would have to sedate my baby girl to get an accurate result, and this would be her first sedation- which always comes with possible complications. We woke up at 5:30 am to get ready to leave for the 45 minute drive to Saint Joseph's Hospital for her 7:30 am appointment. Before I knew it, they gave Zoe the oral sedative and she was asleep in no time.

Watching them attach the electrodes to her tiny head and put things in her ears was heartbreaking. The test took over an hour- sitting in a darkened room holding Zoe's hand on a hospital bed as she slept. The doctor was silent through the whole test. After she was done, she broke the news to us that Zoe showed no auditory response in her right ear- meaning that her machine could not measure any hearing in that ear. Zoe hears at about 50 decibels in her left ear- a moderate to severe hearing loss. With hearing aids, she may be able to hear with her left ear, but they are unsure about her right ear.

It is a possibility that she may have been born without the auditory nerve on that side, in which case she will remain pretty much deaf in that ear for the rest of her life, no aids- not even a cochlear implant will really help her. They are also unsure if her hearing loss is genetic, progressive, or if it will stay the same. We are incredibly worried that it will progress further. Yesterday was the worst day of my life since the first time they told me she would need hearing aids. Now they are telling me it is worse than they thought it was, and there are so many unanswered questions.

The next phase of the journey is to schedule an MRI to see if that nerve is present behind her ear or not. That will determine whether or not a hearing aid will help her at all. We can't wait any longer than we already have to get the hearing aids, though- so we have an appointment scheduled on Friday to have another set of impressions taken of Zoe's ears, and I think we will be getting loaner aids until we can figure out how to afford this. Hearing aids are incredibly expensive, and our insurance only covers so much- the benefit is not very good. I make too much money to get medicaid or any type of assistance with these massive bills that just keep rolling in.

I have a million thoughts flying through my head at this moment- I feel lost and alone. I know we are not the only family that is going through this, and I also know it could be much worse, but I still find myself asking why. Why us? Why Zoe? I am angry, scared, and depressed. Jonathan had his moment of grief, but he bounced right back into action- wanting to know what we do from here and how we can help her. He has always been the stronger one, which has been my source of strength through all of this. I can't say how long this pain will last, but right now it hurts, it hurts bad. I have made the essential phone calls- to Dr. Horton, our pediatrician; to Dr. Henning and Dr. Robinson, our Audiologists; and to a couple friends for support. My family and friends have been another source of strength- they have been nothing but supportive through all of this, and will continue to be, and for that I thank them.

Now we wait for the next test, the next doctor, the next piece of news...