ABR – Messymom

This Time is Different

I sat in the exam room with a tightness in my throat. I had felt fine, but as the reality of it all sank in the emotions rose up. I began to cry hot tears. I felt the need to apologize because I don’t like making other people feel uncomfortable. The audiologist responded in a firm voice ” Do not apologize.” She told me that I was completely entilted to respond any way I wanted and that just because I have been there before that does not make it any easier.

This was what happened a week and a half ago at Elle’s ABR hearing screening. As you can imagine this means that the results were not good. I thought Elle could hear, and I was right. She can hear. She responds to many different sounds, but she still has hearing loss and it’s in both ears. I wasn’t going to talk about it until I knew more, but I am ready to talk about it now. Especially since I just got off the phone with the early intervention specialists who are ready to come over and set up her first IFSP. SJ has an IEP which is an Individualized Education Program because she is in school. Before that you have an Individual Family Service Plan which is when case worker helps you come up with appropriate strategies or goals for your preschool age child with special needs.

So just like that Elle has Special Needs. She is 6 weeks old and already considered delayed because she can’t hear well. I am being blunt, but don’t worry. I am not concerned for her. I think labels are silly. I remember when I was being interviewed for a research study and I was asked how I felt about my daughter’s “exceptionality” and I said “Excuse me? Her what?”. “Exceptionality” she repeated. That’s what they are calling it now. I laughed at such a desperate attempt to not offend. I am comfortable with hearing loss, deafness, disability, exceptionality whatever you want to call it. It does however mean our calendar, our budget, and even major life decisions like where to live will look different over the next few years because of this.

Hearing that my daughter has hearing loss is so different this time. I continue to process a myriad of emotions. On the one hand Elle’s hearing loss is mild. It’s complicated and I won’t go into all the details, but that’s good news. SJ’s hearing loss was profound. At least by the time we found out it was. When Elle had her appointment J explained that we speculate SJ had previously had more hearing, but then lost it over time. He asked if that could happen with Elle. The audiologist said it certainly could. That’s a hard fact to swallow. I don’t know if I should assume the worst and hope for the best? I have a lot of questions for her ENT.

On that note, the fact that we already have an ENT, an audiologist, a school, and a support group in place is awesome! With SJ I was given a stack of books for parents of deaf children and I felt completely overwhelmed. This time is different. I have a newborn instead of a toddler. I live in Ohio rather than Kentucky. I will be dealing with hearing aids rather than cochlear implants (at least for now). I feel fairly equipped, but also uncertain.

I have so many questions and other concerns, but I will have to wait another month to even talk to certain specialists. The day of Elle’s hearing test was the first day of Christmas break for the kids and we went right into all of the Holiday gatherings. First was celebration with my family followed by a week of festivities with my in laws. That was actually good timing though because I had no obligations and have been pretty much distracted by Christmasy things. However now we prepare for evaluations, testing, hearing aids, and therapies. It’s really happening. I am doing okay, but I am also a bit of a basket case from time to time. Elle on the other hand is doing great. She is such a precious treasure and we all adore her.

I know many of my family and friends are going to be finding out about this for the first time. I didn’t know the best way to deliver this announcement. It’s not dreadful news like a terminal illness or something, but it’s not like announcing a pregnancy either.

I hope you’ll bear with me as I navigate this new journey because it might look similar, but this time is different.

Awaiting the ABR… Again

Elle is now 5 weeks old. She had her one month check up this week and is now 10 pounds 22 inches. The Doctor has been extremely impressed by her growth. Here is a side by side from her first check up and her last which were taken exactly 4 weeks apart. Elle looks completely different.

She is really filling out. No more newborn diapers or clothes for her. She has outgrown them!

There aren’t a lot of updates. She smiles now, but it’s not often.

She still sleeps about 18 hours a day.

I did a little impromptu photo shoot of her on her 1 month birthday.

I love that she was born close to the holidays. I think about how our birth story was so unconventional and I wonder how Mary must have felt and what her birth story would be like (of course we know the story, but not from the perspective of Mary).

We have an important appointment coming up and I would love it if you would be in prayer for us during this time. I previously mentioned that Elle failed the newborn hearing screening. The first time they came in with the equipment to test her the tech lady had a unique personality and was rowdy. I think she was trying to be nice. For most people this is just a routine test. No reason to get too serious, but all kinds of faculty were coming in and out and joking around and making a racket so Elle woke up and was fussy for the second half of the test (the left side). So she failed on the left, but the boisterous tech assured us it was because she woke up and that’s all it was.

The next day a younger new tech came in while it was still dark and quiet in our hospital room. I asked if she could shut the door and maybe hang a do not disturb note or something. She looked at my like I was crazy, but at least it was a much more subdued and calmer atmosphere. She even let me nurse Elle during the test. Again Elle passed on the right, but she couldn’t even get a reading on the left. It was like it wasn’t hooked up right so the tech tried to adjust it. She never was able to figure out what was wrong so she said that she failed and she would refer us to an audiologist. I was hormonal, and tired, and obviously stressed so I sternly proclaimed “We have an audiologist. This is a big concern for us and I’d like to know what is going on” Then J and I asked more questions about the test. None of which she could answer. She looked really intimidated. She had never even heard of Connexin 26 which is the genetic hearing loss that we have in our family. It is the NUMBER ONE CAUSE of sensorineural deafness so you would think someone that tests for hearing loss would have some familiarity with it. I then asked to speak with a supervisor and did, but she mostly just had some paperwork for me.

I immediately called SJ’s school and talked to our audiologist. She made me feel much better about the whole thing and gave me advice on how to proceed.

I know a lot about hearing loss and I think Elle can hear. I feel very confident in that. I guess you could say we know she can because the test confirmed it on the right side. With Connexin 26 it is highly unlikely that it would be unilateral (only on one side) so chances are she is fine.

However, this whole thing brings up a lot of tender memories for me. We have to go through all the same testing that we did with SJ and we have to keep her asleep for 90 minutes which should be easy considering what I said about her sleep, but it’s still completely unpredictable and out of our control so that stresses me out.

I cried when I called and scheduled the appointment. I have openly expressed to people how I know that she is fine and it’s just a machine error which happens all the time. And hearing children do fail this test A LOT.

However, lately there have been other thoughts popping into my head that make me wonder why it was the left ear BOTH times. Maybe just a coincidence? I mean if something is going to go wrong with the test you have a 50/50 chance that it will be on the left side. Still part of me wonders if she has another problem on that side that doesn’t even have to do with Connexin 26. Or what if her hearing gets progressively worse, which can happen. What if she is one of those rare cases?

Luckily, most of these frantic thoughts didn’t really come into my mind until this week so at least I haven’t spent the past 4 weeks panicking.

Please pray that we get some answers with this test. I do have a peace about it, and all in all I think everything is going to be okay, but I hate the idea that if she doesn’t sleep we have to drag this out for another month or so. That would be terrible. I just want this to be over with.

The reason I titled this “Awaiting the ABR… Again” is because I wrote another post about 3 1/2 years ago when I was waiting for this same test for SJ. You can read “Awaiting the ABR” to find out what the test is and what the waiting period was like for me in that time when I didn’t know for sure whether or not SJ was deaf. It feels like a world away.

Thanks for all the prayers and support. Of course I will keep you posted.