She is listening...but not hearing!

I just wanted to update my last post about Kaycie and her hearing while it is all fresh in my head.

We went to the audiologist at the ENT’s office on Monday. As of that point, we knew that she was not passing her hearing screenings, but we weren’t too super concerned. I had read enough to know that often times, babies don’t pass their hearing screenings because of a fluid build-up, and that is easy to fix with tubes. She talks and “coos”, and I assumed she would not be doing that if she really couldn’t hear us.

You would have thought she was being tortured by the screams she let out. They kept calling her “feisty”. We all know she sure is. My baby girl that was born with nothing more than a squeak for a cry has become very vocal! It took a while…we were there for over 2 hours, and finally she just passed out, which is what they wanted her to do anyway. They told me to bring her to the appointment tired and hungry in hopes that feeding her would make her fall asleep. I kept telling them that she doesn’t work that way, but right as we were about to give up, she passed out.

Anyway, it turns out that Kaycie does have hearing loss. She has a 30 db loss in her left ear and a 70 db loss in her right. On Monday, this meant nothing to me either. They mentioned fluid, but they also mentioned hearing aids. The audiologist told me that a 30 db hearing loss is as bad as it gets for being “just fluid”. She said a 70 db loss means there is something else going on, and now we just have to figure out what. At this point, “just fluid” is what we were hoping for because then it is easily fixable. She immediately scheduled us for an appointment today (Thursday) to see the doctor to discuss a course of action. To help, this is a chart showing what this may mean for us. In her left ear, she sits comfortably in the mild category, but the right ear is as high as she can get in the moderately severe category.

Degree of hearing loss	Softest sound able to be heard (in decibels)	Frame of reference
Mild	26 to 40 dB	Able to hear the loud or more intense vowel sounds, but may miss some of the softer consonant sounds.People with a mild hearing loss may have difficulty hearing soft spoken people and young children. Also, they may have to ask people to speak up or repeat themselves on occasion.
Moderate	41 to 55 dB	In addition to missing consonant sounds, vowel sounds then become more difficult to hear. People with a moderate hearing loss often comment that without hearing aids they hear, but can't always understand.
Moderately Severe	56 to 70 dB	Without hearing aids, speech becomes inaudible, whereas with hearing aids, speech may still be difficult to understand.
Severe	71 to 90 dB	Without hearing aids, speech is inaudible, but loud sounds like a baby crying or a dog barking are audible. Hearing aids may no longer be enough for people with severe hearing loss.
Profound	91+ dB	Without hearing aids, speech is inaudible, but very loud sounds like a lawn mower or jet airplane are audible. Hearing aids may no longer be enough for people with profound hearing loss.

 

Today we saw the doctor. Before he even looked at her, he was telling me they would probably try tubes to drain the fluid, and while she is sedated do another in depth hearing test. He said 90% of the fluid will drain immediately, and they should be able to tell what her hearing will be without the fluid. Then he brought her to a room, and I had to hold her body down while the nurse held her head…it was torture. If you remember me talking about how I used to have to restrain LJ at the eye doctor while they poked a rod behind his eyeballs while he screamed…yeah, I am not sure which is worse at this point. He got a good look in her ears and said that he doesn’t actually see any fluid…darn it.

The plan of action sort of changed after that. We are currently scheduled for surgery on March 12 (hopefully they end up being able to get us in sooner…6 weeks is a long wait). At that time, they will put her under and if there is fluid, they will insert the tubes, do the hearing tests, and schedule a CT scan to figure out if there is a bone malformation in the middle ear. If there is no fluid, they will only do the hearing tests. The hearing tests will help determine the settings on the hearing aid/s if she ends up needing them.

What this means for Kaycie…she may develop language more slowly. Right now, we have been told she can hear us if we talk fairly loudly and without background noise. The washing machine, the TV, the heating and air cause enough background noise that she cannot likely hear us clearly. We probably sound like we are all under water all the time. It explains some of the little things we have noticed. No matter what way we turn her when she is laying down, she always puts her left ear up…she can hear better. It also means she has quite the flat head. When she hears a loud noise she looks around trying to figure out the source…she is having a difficult time determining where sounds are coming from. It makes sense as to why she does not engage unless you are right in front of her. It means an eye check is next. The ENT feels that it is important for two reasons…a lot of the time eyes and ears go together. If there is an issue with one, it is more likely that there is an issue with the other. Also, if she has a deficit in her hearing, we want to make sure she can see well. They always say those that lack in one sense make up for it with the others. It means that one day, she will be able to decide for herself if she wants to use a hearing aid, if she wants to look into corrective surgeries, or if she just wants to hear what she can naturally.

What this means for our family…it means we become more aware of the noises around us. It means that we have to work harder to get her attention, and we have to be animated in talking to her. Of course we are sad that she has to go through this, but our baby girl is healthy! We are not devastated, and we are not defeated. The way I look at it is that we have had 2 preemies that can easily come with a myriad of health issues. If this is the biggest obstacle we have to face, we will dive in head first and praise God that we have our babies with us! Of course, my ultimate prayer is that we get to that surgery 6 weeks from now, and they come back with the great news that everything is fixed. The doctor did warn me today though, that it was not likely that both ears would have full hearing since the right ear has never passed a screening since birth. It may happen with the left ear though.

What this means for you…it means that if you believe in prayer, please pray for her healing. It means that if she does end up with some cool hearing aids, don’t treat her any differently…except for maybe talking a little louder if there is a lot of noise. It means if you have any knowledge, please share, as this is not something we have any knowledge about, and it can get overwhelming trying to figure out.

We hope and pray that this ends up being a minor hiccup in the life of our baby girl, and I may have gone into more detail than I really needed to. However, I also know I have mentioned the hearing screenings to some of you, so this is where we are at.