Lizzie's Journey to Hearing Part 1: First Set of Hearing Aids

Back in January, I read my first post documenting our initial discovery of Elizabeth's hearing loss, and I couldn't believe how much had changed since 11 November. I set out to recap the events of those two months, but never finished. Four months later, I'm at it again...trying to summarize the many details of this wonderful journey. I have desperately wanted to journal my thoughts and feelings and the experiences we've been through, but I just haven't had the opportunity. There is no way I can document everything as in depth as I would like, but I'm going to give it my best shot because I want to remember the road we walked and the changes God made in our hearts along the way. I'll pick up where I left off in November...

Our trip to Oklahoma City was an absolute blessing. Elizabeth had her second airplane flight.

As our plane flew over the Oklahoma River, my heart was full of joy. I felt like I was home, and I never thought I'd say that about Oklahoma! My friend Laura picked me up from the airport, and it was SO good to see her. We had time to spare before going to Elizabeth's ENT appointment, so we drove by the place where her daughter had married a few months before and by her daughter's new home, went to the new outlet mall and enjoyed amazing cupcakes from Gigi's Cupcakes, and ate lunch at the wonderfully girly Nikkelette's Cafe. It was so great being with Laura. I don't think there was ever a moment of silence. We had so much to catch up on!

After lunch, we headed over the Hough Ear Institute for Elizabeth's appointment with the ENT. When I walked in, I saw this Bible verse written on their wall:

"He who has hears to hear, let him hear." Luke 14:35

Underneath this Bible verse was a table displaying a Bible. On another wall, I saw their mission statement:

"Guided by Christian principles, the Hough Ear Institute is committed to discovering and implementing new ways to improve hearing and balance to people worldwide through research, education and service to humanity."

Wow! I felt so comforted to see the Word of my Lord on the walls of the place where I'd be taking my daughter for her first appointment with an ENT. I had prepared my heart for whatever the doctor would discover as he looked into her ears. I can honestly say that I trusted the Lord for His perfect will for her ears and for her life, and I was ready to embrace whatever that was going to be. There were a lot of people telling me that their children couldn't hear when they were first born because of fluid in the middle ear, but I didn't feel like that was going to be the case for me. Sure, if I'm honest, it would have been nice to hear that she had fluid in her ears and that her hearing was going to be fine. But just as I type that, I find myself saying, "No. That's not how I felt. I never said, 'Lord, let it be fluid. Let it be something that we can easily fix.' In my heart, I truly wanted God's will...even if that meant deafness." There were times when the thought of her hearing loss was more than my heart could take, but the pain was not about fearing the future or anger over her disability. No, it was always about sadness for her - that she'd never heard our voices, that sound could not calm her and remind her of the womb, that she'd have to work hard to learn how to speak, etc.

So when the doctor was ready, Laura and I took Elizabeth to meet the ENT. I held her as he examined her ears and found absolutely nothing wrong with them. There was no fluid and the middle ear bones looked great. I expected to hear this, but it was still another step in the process that helped reality set in. Now I knew that her hearing loss was sensorineural (or in the inner ear). I had so many questions. This was all so new to me. Hearing loss was something I knew very little about. I should have brushed up on the anatomy and physiology of the ear before I left Utah. I wanted to understand everything and I wanted to know what could have caused her to have no response on her first ABR (auditory brainstem response) test. I remember carrying her in my arms to the Integris Cochlear Implant Clinic next door where we would do her first OAE (otoacoustic emission) and second ABR. An ABR tests for activity in the brain after an auditory stimulus is presented in the ear via probes placed in the ear canal. The auditory stimulus starts out soft and gradually increases in loudness until a response is seen. An OAE tests the function of the cochlea, particularly hair cell function. I don't know if words can describe how I was feeling. I felt alone. I felt like I was in a foreign country where I couldn't speak the language and didn't know where I was going. It was weird. I almost felt like I was in a dream. Was this really happening? I know it sounds like I'm contradicting myself - embracing what the Lord has for me yet feeling alone and lost. I didn't feel alone from the Lord, and I was definitely willing to walk whatever road He was putting in front of me; but I'm only human and the unfamiliar was...well...very unfamiliar. I guess I could liken it to doing something for the first time that you are a little apprehensive about and know nothing of what is to come.

Even though the ENT said there was no fluid in her ear, Sandy, our audiologist, did a tympanogram just to confirm. (I mentioned in the November post that Sandy and I became friends the summer after Jackson was born. I was in Oklahoma because of this friendship and her willingness to bend over backwards for our family.) After the tympanogram, which did confirm the absence of middle ear fluid, we walked to the sound booth to perform the OAE and ABR tests. When Elizabeth was tested the first time in Utah, I stood and held her for the entire test. It took me a while to release the tension in my shoulders after that thirty minute test because I was trying so hard to be completely still so that she wouldn't wake and the probes wouldn't loosen from her ears. I was very impressed as I entered the sound booth in OK and saw a recliner and Boppy support pillow. Aahhh! Wonderful! These people know how to take care of families of newborns. Since Elizabeth was awake, we cleaned the areas where the electrodes would go - on her forhead and behind her ears - and got everything attached and set up. I then nursed her and she fell asleep. I was so comfortable, I could have fallen asleep myself. I can't say how comforting it was to be with two women who I love so much and who I know care so much for me. I felt a great deal of confidence in Sandy and was glad to have someone who I trusted to carefully test my daughter's ears.

Sandy began the test. At different frequencies of sound, she presented clicking sounds in Lizzie's ears. She started at lower decibels, looking for a response in her brain that was recorded via the electrodes, and then increased the volume each time she didn't see a response. I don't know how long it will take for me to forget the awful sound of those clicks. You see, once the sound got really loud, I could hear the clicks. It's like being able to hear the sound coming from someone's headphones while the earbuds are in their ears. It has to be really loud for an outsider to hear it. I remember asking, "How loud is that?" When she answered 85 dB, 90 dB, and 95 dB, I couldn't believe it. It was so loud and Elizabeth wasn't even flinching. My heart was hurting. How could she not hear that? My ears were bothering me just from the sound that was leaking back out of the ear probes. I was worrying that we were damaging her ears just from doing the test. Here I was holding my peacefully sleeping gift from the Lord while super loud clicks were entering her ear and she had no response - physically or neurologically. The audiologist findings in Utah were correct. She really couldn't hear.

As her mother, I did shed a few tears. I just kept thinking about all of the times that I thought she was hearing me - in the car seat, singing lullabies, shushing her through fussy times. I thought about the silence of my womb and that she never heard my voice or my heartbeat. Those were the things that made the reality of her hearing loss hard.

Elizabeth woke about halfway through the test, so we went down the hall to make her first set of ear molds. Then, we went back to the booth and finished the testing. Sandy thought she might have seen some responses at 95 dB, but after reviewing the graphs, there really wasn't a response. The OAE and a bone conduction test confirmed that her hearing loss was sensorineural - dysfunction either within her cochlea or auditory nerve. There was a lot to take in, but I was actually excited because in five days, my daughter was going to hear me for the first time...or so I thought. It was my understanding that Elizabeth would get hearing aids and be able to hear while using them. Now that I'm six months down the road, I understand why that wasn't a guarantee; but at that time, I didn't understand. Hearing aids only amplify sound, but if there is something wrong with the hair cells of her cochlea, then all the amplification in the world won't make her hear normally. That's what cochlear implants are for.

On our way to the airport, I called Jason. He was in a meeting, so he couldn't answer. I wanted to talk to him so badly, but had to wait until my flight landed in Houston. I missed him so much. I wanted him to be with me...to be sharing all of this together. I wanted him to hold me, pray with me, and cry with me. Even though I had peace in my heart and trusted the Lord's perfect plan, there was some sadness in my heart for my daughter's loss of hearing. I couldn't allow myself to be sad whenever I was alone; but, I thought that having Jason around to be strong would allow me the freedom to be weak. I did have some moments of weakness. I remember singing songs to her while she was nursing and then, unexpectedly, feeling like my heart was wailing. My sorrow would just overwhelm me at times. I don't feel like that anymore. Not at all. It only happened in the first couple of weeks while everything was sinking in.

My dad picked me up from the airport that night. I flew into Hobby, so we had a forty-five minute drive back home. I LOVE riding in the car with my dad. We always talk the entire time, and we always have for as long as I can remember. There is never silence with the two of us. I was very comforted to talk to him about everything that was happening. Sometimes, I think we share a brain. We think a lot alike and he loves the Lord and trusts completely in His plan. I crave being around people like him...people who have such strong faith in the Lord that when the rain comes crashing down, they don't crumble.

My precious mother-in-law was watching my children while I was gone. I was so eager to get back to them. I couldn't wait to hold and cuddle my kids and to talk to my mother-in-law. My mom called me while we were driving home because she was about to be back at her house. Since it was on the way to my mother-in-law's house, we stopped to see her. I really wanted to see my mom. I craved a hug from her. I will never forget looking into her face while we stood on the driveway. I could tell that she was sad...for Lizzie and for her little girl. I remember needing her strength but also appreciating her sympathetic heart.

The next four days could not go by fast enough. Since we thought Elizabeth was going to hear the day she got her hearing aids, Jason and I decided that our family should drive to Oklahoma and be there for Elizabeth rather than have me fly by myself with her. We woke the kids very early on the Tuesday before Thanksgiving and made our drive to Oklahoma. The car ride is a post in itself, but I know that will never happen. So, in a nutshell, here's some of what happened: the kids didn't really go back to sleep because Jason wanted a coffee {that we could have bought at the several Starbucks we passed while they were awake} but we didn't decide to stop until right after they'd just fallen asleep. Parents' impeccable timing! :-) When we made our breakfast stop in Gainesville, we changed Allison into her clothes and apparently put her diaper on crooked so she wet through her diaper and onto her clothes not even ten minutes after Jason had changed her. I changed Elizabeth too and then she spit up all over herself and completely drenched her outfit. While waiting for our food at Cracker Barrel, Jackson asked for a toy car filled with bubblegum. We said no and he was mad, so he threw the car on the floor and it broke and shot gumballs all over the store. We took our food to-go but forgot drinks, so Jason stopped at a gas station that ended up being closed because there was water everywhere from a pipe that had just burst in the bathroom. There was bumper to bumper traffic for no apparent reason on I-35 once we crossed the border. You know, those kinds of things that make life as a family very comical!

When we finally got to Oklahoma, we went straight to the Babbs' house and spent time with them until we had to leave for Elizabeth's appointment. Laura went with us to video and photograph because we really thought Lizzie was going to hear for the very first time. When Sandy saw us pull out the video camera, she said, "Now, we don't know that she is definitely going to hear with these." What? Did I miss something? I was so confused. Sandy had told me that it would be good for Jason to be here on this day and that he should come if he could. I did not understand that, more than likely, she would not hear. Laura did not understand that either, and she had been with me at the previous appointment. Somehow, we didn't communicate clearly. I think it was my ignorance coupled with Sandy not realizing how great my ignorance was. :-) Knowing what I now know, it's hard to believe that I was so confused; but, it just illustrates how huge the learning curve is when you first discover a disability that you previously knew nothing about.

In the waiting room...

Our audiologist and friend, Sandy:

Getting ready for the hearing aids...

The tube on her first ear mold was cut...

Sandy fitted her left ear first. Programming the left hearing aid...

Marking for the cut on the tube for her right ear...

Programming the right ear...

Our sweet angel was so tired. She has endured a lot in her short little life.

Jackson and Allison were so good. When they weren't looking at Elizabeth, they were preoccupied with puzzles, games, or chasing Laura.

Because the aids had to be amplified so greatly, we were getting a lot of feedback. Sandy made adjustments, but they were still whistling so much. She had a second pair that she was going to try, and since we were staying at her house for the night, she told us that we could try them once we got to her house. I was amazed at the feedback. My dad has hearing aids, and I never hear any feedback unless he takes them out of his ear while they are still turned on. Any time Elizabeth turned her head toward the bed or my shoulder, the hearing aids would whistle. Being only six weeks old and not having great head and neck control, the feedback was almost constant. We were so worried that it would bother her or hurt her ears, but Sandy assured us that it wouldn't bother her and that she couldn't hear it herself. I remember thinking that the noise might drive me crazy, but I didn't care if it meant that my daughter was going to hear.

After we finished at the Integris Cochlear Implant Clinic, we went back to the Babb's to see Brian. Rebekah gave Allison her first french braid.

Elizabeth's first night with hearing aids...

We tried the other set of hearing aids when we got back to the Over's house that night. The feedback with them was even worse, so we kept the first set. They were made by Oticon and they were flesh colored. They were so big on her tiny ears. Sandy suggested that we buy toupee tape to help hold them on, which we did do on our way back to Houston. We found a wig shop in The Woodlands and grabbed a pack of toupee tape from them. I remember walking in the shop. It was so nice and beautiful and there were women in there picking out wigs. These women had lost their hair from chemo treatment and needed the services of this shop. My daughter was born deaf and needed products from the shop. I remember thinking that health is such a blessing and something that I have taken for granted.

I was so thankful to share these experiences with friends and family who love us. We were exhausted. We are always tired when we go to Houston because we value time with family much more than sleep, but this time was even more tiring because we had been on two flights and two 8 hour road trips in ten days time. Not to mention that we had a five-six week old who needed her mommy in the middle of the night.

This is the only picture I got of Elizabeth's first Thanksgiving...

We have so much to be thankful for!

It took some time to adjust to the hearing aids. I wanted her to wear them all the time...just in case she was hearing something...but I wasn't skilled at putting them in and she was so tiny. I didn't want her to miss out on the sounds of the world around her, but if I had to do it over again, I would extend some grace to myself and not worry so much. She was only six weeks old when she got her hearing aids, and only a month later, I felt a lot more confident about putting them on. It's amazing what I learned about her and hearing loss in the few weeks following our Oklahoma trips. It's even more amazing what I now know. Those posts will come...eventually!