Well, it's been a while and today is a big news day so I had better update this blog.
I will begin by saying that when my water broke nearly 7 months ago, I knew I was in for a 26-mile marathon. And to be honest, I actually thought I was in pretty good shape to run it. The first mile went well, and even during the tenth mile I felt like I would make it to the finish line. But then just as I was at mile 25, feeling exhausted but encouraged by the thought that I was almost done, Brynn got Group B strep infection in her blood (see this post) and the race suddenly got longer. As her oral has declined so far that she will no longer even accept the pacifier in her mouth, much less a bottle, I realized that the marathon was more like 126 miles long. Tomorrow is the surgery for her G-tube, and for several reasons, we are going to have to do the fundo as well.
However, today Brynn's oral progression, surgery, and fundo are not the thoughts occupying my mind. Rather, the marathon distance just jumped to 1,026 miles for another reason entirely--one totally unexpected.
Brynn is deaf.
Months ago, she actually failed her newborn hearing screen; but I never wrote that in the blog because the nurses and staff told me over and over that the hearing screens aren't that reliable and most kids can hear just fine. I'd all but dismissed any thought that she'd be deaf. However, after today's ABR and some other tests to confirm, Brynn almost assuredly has "profound hearing loss" (the industry term for total deafness) in both ears.
It was likely caused by the blast of strong antibiotics she was given for the Group-B Strep infection. That and the simple fact that she was premature and small for her gestational age are all risk factors for deafness.
We don't know if any of her hearing is recoverable. There is a very slight chance that the test could be wrong and we have a few appointments with other doctors to confirm but at this point, it seems the doctors are more interested in finding out exactly which part of the ear or brain is causing the deafness and what our options are for moving forward than in discovering if she is or is not deaf.
I won't pretend to have a lot of energy to run the rest of this marathon. Sometimes I think I could make it if Someone would just tell me how long it actually is--because at least then I could pace myself. But alas, I am consigned to a feeling of shock and numbness instead of knowing just how to proceed.
If I've learned one thing from this experience, though, I've learned that it's okay to mourn the loss of an expectation. In fact, it's a good thing to do. If you feel the sorrow fully, acknowledging the pain and the shock, then you can move on. But if you avoid it, deny it, feel ashamed of it, or procrastinate it, the fear of the pain often becomes worse than the pain itself. So I think I will take a few days to process this new information, do some research on our options and write a little more later.
For now, my readers may know that my hopes are still good. Not necessarily that everything will be rosey, but that we will be able to handle whatever comes. In fact, last July I started learning sign language because my neighbor and her husband were deaf and mute, as well as several people in my local church. They were all such wonderful people that I thought it'd be fun to get to know them and the language they used to communicate. They were patient with me as I stumbled through and I still have a long way to go before I would say I'm fluent in ASL, but I can hold a conversation about almost anything with them.
All the while I was learning, I kind of wondered why I felt so interested in it, but it was relatively easy for me to pick up so I kept going. I even asked Matt if he were up for adopting a deaf child--back when we were filling out the adoption papers and before we finally got pregnant with Brynn. I see now that there was a bigger reason behind my recent, and somewhat random interest.
So I know that God prepares us for the challenges ahead, but this is still life-altering news and will take some time to process.
Noah's 5th Birthday
2 months ago