May 2015 – Hearing Sonya Rose

Fashionable Hearing Aid Solutions

One of the most challenging aspects of having a baby who wears hearing aids was how to keep them on her head! Like most babies, Sonya must put everything in her mouth. Hearing aids included.

It is critical that Sonya keep her aids on, however, for as much of the day as possible. We were left scratching our heads as to how this could be accomplished? It sometimes took up to five minutes just to get them on her only for her to quickly take them out and stick them in her mouth. Adorable, and yet extremely frustrating.

Our speech therapists and audiologists had the following suggestions:

Option 1: In our hearing aid kit provided by Early Intervention (EI) we received Phonak Leo the Lion kids clip, which is a cord that attaches to the hearing aids and clips on to the back of Sonya’s shirt. Sonya didn’t love the clip. She noticed the cords when she turned her head and immediately pulled at it. I also didn’t love the look of it. Bright green with a lion cartoon on the clip. Cute – but also drew attention to her hearing aids. The quality also seemed to be lacking a bit.

Option 2: Phonak Stick ‘n Stay hearing aid stickers. We also received a pack of 30 pairs of clear sticky pads, which hold the hearing aids to Sonya’s ears. I used these for a good month – and they seemed to help initially. However, once Sonya learned to take them off, they lost their effectiveness as they were no longer sticky once removed. I also found the packaging frustrating to open and the stickers were time consuming to apply. The upside is this tape is a more sensitive solution for baby’s ears, leaving no residue and can be easily applied and removed. A good – but not perfect solution.

Option 3: Pilot caps. I for the record thought Sonya looked like a cute little aviator in these baby pilot caps we purchased at Hanna Anderson. Perfect for Spring, they held the hearing aids in place. She never bothered with them. Style-wise, they aren’t everyone’s cup of tea. My sister-in-law thought it looked like a swim cap. Nonetheless they worked. Polarn O. Pyret also sells a similar version.

Option 4: Crochet baby headbands. By far my favorite. Sonya looks adorable with these vibrant headbands which are comfortable to wear and hold the hearing aids firmly in place. I bought a pack of 30 for $15 through Amazon Prime. We have one that matches pretty much every outfit Sonya owns. She gets tons of compliments when she wears them. Win-win!

Option 5: With the summer months upon us, Sonya typically wears her sunhat everywhere we go – and I have found this to be a great option as well. The best kind tie under the chin and have UV protection. Polarn O. Pyret makes a great one with an elastic band that holds the hat in place around the head and a slightly wider brim in the back to protect the shoulders and back. The hat also keeps her hearing aids in place without a problem.

Do you have any other ideas? Feel free to let me know! I’ll be interested in hearing about any options that will work particularly well with Sonya’s new cochlear implants.

Accepting a New Normal

While I realize it is petty, one of the most upsetting aspects of Sonya’s hearing loss was the fact that she would need to wear hearing aids, and eventually cochlear implants.

I love the way Sonya looks and couldn’t process the fact that she would need external devices in order to hear. Above all, I feared how she would be perceived by others. The implants and hearing aids are visible and will cause people to question whether she is “a normal child.” I am ashamed to admit that it took several audiological visits to convince me that her ability to hear far outweighed such aesthetic differences.

When Sonya was one month old, she received a pair of loaner hearing aids from NYU. Aside from the fact that they blinked red lights to indicate they were on, they were actually very cute.

I realized then that my underlying fear – that these aids would somehow define my daughter – was unrealized. Sonya’s personality continued to shine, and the hearing aids did not take away from that. In fact, people didn’t even notice them – or if they did – they were drawn to her inner and outer beauty and the aids were only a side fact.

The Surgery

At 1:50 a.m., this morning I woke Sonya up to feed. I know you are never supposed to wake a sleeping baby, but today was an exception. Today was Sonya’s surgery to receive bilateral cochlear implants at NYU, and she was not allowed to consume anything after 2 a.m. As I held her in my arms, I sang to her and promised her that everything would be okay. The calmer I was the calmer she would be. “Put your oxygen mask on first, before assisting others,” I repeated this mantra to myself.

We arrived at the hospital at 5:45 a.m. Sonya was to check in by 6 a.m. to ensure that she would go first (barring any unexpected surgeries). The entire process was seamless. We only had to wait 10 minutes before we were brought into triage. There we dressed Sonya in her hospital gown (the CUTEST thing ever!) and were greeted by a number of nurses as well as our anesthesiologist.

Our anesthesiologist in particular made me feel at ease. She had been working with our surgeon, Dr. Roland, for more than 15 years. She reviewed Sonya’s file. Asked some questions and then walked us through the process of putting Sonya under. Her tone was direct but also caring. She kept stopping to gush at how cute Sonya looked.

Before we knew it, it was time to go. I sat in a wheel chair with Sonya in my arms as they wheeled us up to the surgical floor. Yan walked beside us. A nurse parked us behind a traffic jam of five other patients also waiting for surgery. Holding Sonya close I repeated my mantra while caressing her hand. I did everything in my power to remain calm. She looked at me and then at the lights above us. Way too soon a nurse asked me for Sonya. I stood up from the wheelchair and gave Sonya a quick kiss on the nose before turning away. I figured lingering would only make things worse. I heard no cry from her. It is possible she cried later, but I believe she remained calm as the nurse carried her into the operating room. A knot of anxiety tightened in my chest.

I suddenly felt light-headed so Yan and I went down to the cafe to have breakfast. I ordered a blueberry muffin and a coffee. We sat in the lounge area and talked about how well Sonya behaved so far. How proud we were. How adorable her hospital gown was…I wondered if we could we buy it after the fact? When we finally went back upstairs a nurse approached us.

Sonya is doing fine, she told us. The doctor did have issues with her IV. She is a chubby little thing – but the IV is in after about 30 minutes of trying. The surgery just started.

Yan squeezed my hand and looked at me with a grimace on his face. I knew what he was thinking. Our poor baby being had surely been poked numerous times by a needle. But I decided to keep things positive. “If that is her only complication – I’ll take it!”

Just an hour later and Dr. Roland himself came into the waiting room. I stood up and he gave us a two thumbs up sign of relief and signaled us to follow him back into a private room. Sonya was indeed fine. Everything went very well. We would see her very soon. I felt as if a huge weight had been lifted off my chest. I felt light and so very thankful.

About 30 minutes later, we were told we could go see Sonya. We followed a nurse into a tiny curtained-off room. Sonya’s ears were covered in an ear-muff-like bandage. Yan said she looked like a Cheburashka – a Russian cartoon character. Sonya had awoken, but had fallen back to sleep by the time we arrived. oxygen was being blown into her face. She looked like she was having a good dream.

When she woke up an hour later, the reality of the procedure set in. Sonya was frightened and in pain. She screamed while she nursed. It was upsetting. The doctor told the nurse to give her morphine. I hesitated before allowing it, but seeing the level of pain she was obviously in, I conceded. Within a few minutes, Sonya was fast asleep. She slept a good long while before waking in a much better mood. A wonderful nurse stayed with us the entire time. She checked Sonya’s vitals consistently and answered any questions that arose. When Yan left to grab us dinner, she sat with me and we talked about the amazing things that were to come when Sonya would be able to hear.

By 8 p.m., Sonya was doing great. She was eating every couple of hours and was pooping and peeing. All good signs. Her pain was now being managed by infant Tylenol. Her vitals were good as well. We decided she was ready to come home.

Asleep in her bed, I alter between states of relief and fear that she will develop an infection. But above all, I feel grateful. We had the most phenomenal medical care. I emailed our surgeon several times over the weekend with questions and he responded each time in under 10 minutes. Amazing. With the surgery behind us, we have so much to look forward to.

Testing 1 2 3 – CT Scan FAIL

For the past two days, Sonya and I have been at NYU Langone Hospital in Murray Hill, attempting to get her a CT Scan. Her initial appointment was scheduled for Monday, but it turned out that our ENT had authorized the wrong type of exam – and thankfully, a radiologist noticed and canceled it. Had he not done so, Sonya would have been exposed to radiation for no reason…

We were able to secure an appointment for Thursday at 2:30 p.m. instead. Sonya slept in the UBER on the way over, but when we arrived, she was groggy and still waking up. Her sleep disrupted by the fact that it was 20 degree

s outside. We waited an hour for the appointment and finally made our way into the room.

The test – a temporal bone scan – would only work if Sonya was perfectly still – a feat that she would only accomplish if in deep sleep.

Of course, as soon as we entered the room, Sonya woke up immediately. Her big grey eyes mesmerized by the lights on the machines and the computers. The room had a glass wall through which you could see another room of technicians and computer screens.

The CT Scanner is about the size of a small car. It consists of a surface to lay upon beneath a circular structure that produced a light breeze. A screen on the scanner displayed Sonya’s name and birthday. Sonya looked so small lying on the base of the machine. I held her hand and stroked her eyebrows and cheeks, hoping to get her to sleep.

Sonya stared at the technicians and when she caught their eye, she smiled. There is just something about this child – she is always working to connect with people. It’s amazing. While Sonya was in a great mood, the technicians had looks of concern on their faces.

As a new mom, I am only getting to know my daughter. While I have cared for her for three and a half months, as she develops, her tastes and moods change. Typically, nursing will accomplish the goal of getting her to sleep, however, so I offered to try that. The technicians put me in a small room and turned the lights down. Sonya immediately took to the breast, sucking voraciously. She takes about 10-15 minutes per side, and every five minutes a technician would peak his or her head through the door – to see how I was doing.

When she had finally finished, Sonya looked up at me with tired red eyes, and milk dribbling down her chin. Were we at home, she would have gone to sleep immediately had I swaddled her and rocked her to sleep – singing Norwegian Wood (she is a Beatles fan!). But here, her eyes darted around the room. She yawned and then stretched – bending backward – her cue to me that she no longer wished to be held. As I continued to hold her in my arms, she kicked and struggled. Then, she pooped. A loud gas and then warmth! It had exploded up her back and onto my pants and sweater.

A technician poked her head back in, “everything okay in here?”

“Yep yep. We are fine. Just going to change the baby and then hopefully she will sleep,” I said. Although I knew that a diaper change was never followed by sleep. The cold baby wipes only disturbed her.

With Sonya changed and dressed (and with poop soaked through my own clothes hastily wiped off with a baby wipe) I held Sonya and walked toward the door as a technician simultaneously opened the door to check back in. She looked at Sonya and frowned.

“Still not sleeping, eh?”

Her disappointment was frustrating. I mean, here I was, covered in baby poop – doing my darndest.

“Nope…we might have to reschedule this test.” And at that minute, Sonya’s head dropped, she produced an enormous belch and a fountain of white curdled milk poured out of her mouth and on to her clothes and my arm.

The technician made a “yikes” face, and then offered us a bit more privacy again.

I sighed and looked at Sonya. She smiled.

Despite my grievances against the U.S. healthcare industry at large – and our ENT who made the earlier mistake, of course – the technicians at NYU were wonderful. They told me that I could come back tomorrow and as soon as Sonya is asleep – they would push other patients aside and attempt to scan her.

On Friday I rushed over to NYU as soon as possible – around noon. Sonya again fell asleep in the car ride, despite my efforts to avoid it. When I wheeled her in, the staff immediately made way for us. Yet, as soon as I put her on the table, her eyes popped back open.

Three hours later I was still struggling to get her to sleep. We returned home in defeat – as Sonya slept happily in the car.

The ABR Test

While I knew Sonya had hearing loss, I didn’t know how profound it was until she did an Auditory Brainstem Response (ABR) test. This test uses a special computer to measure the way Sonya’s hearing nerve responds to different sounds. A much more sophisticated tool than the initial hearing screen done at the hospital, the ABR test required a visit to NYU Audiology just 11 days after Sonya’s birth.

I held Sonya in my arms as a young audiologist attached electrodes to her forehead and above her ears. The audiologist performed a number of tests over the course of 90 minutes. Sonya slept (though she still managed to soil her diaper — which leaked onto me — ah the joys of motherhood…). I held her as still as I possibly could, and watched the computer screen. Waveforms – recording brain activity in response to sound – traveled across the screen. The audiologist remained silent.

When the test was over, the audiologist gently removed the electrodes from Sonya’s head with warm water. Sonya didn’t even flinch. The audiologist told us she needed to speak with her colleague and would be back momentarily. I prepared for the worst.

When she came back to the room, the audiologist informed us that Sonya had not responded to the test in her left ear and had only marginally responded in the right. She had failed the screening and the test indicates that she is profoundly deaf. Despite my preparation, tears welled up in my eyes. And then something happened that I will never forget. The audiologist’s eyes also welled up with tears. I realized that this was an extremely difficult conversation for her to have as well. “I am so very sorry,” she told me.

I am used to doctors with cold bedside manner. But the audiologist’s inability to hide her emotion – made me feel better. Her empathy was very comforting.

Her hand quickly wiped away a tear and she sniffed. Apologizing awkwardly and unnecessarily, she then explained our options. We could pursue sign language and be part of the deaf community, or we could opt to focus on oral/auditory language. If Sonya did indeed have GJB2 she would likely be an excellent candidate for cochlear implants. If we went that route, she said, we should have Sonya fitted for hearing aids as soon as possible.

The idea of my baby girl wearing hearing aids was too upsetting for words. I couldn’t fathom attaching such devices to her head. And at 11 days? Why? What was the point? But the audiologist held firm. “We have seen significant improvement when babies wear them early,” she said. “The sooner we can stimulate the auditory nerve, the better. It will help her transition to sound much easier when she is implanted with cochlear devices.”

She even offered to give us loaner hearing aids that day and to have hearing aid mold impressions done in the next 10 minutes. But I said I needed to think about it further, and we left. My head spinning as we got back in the UBER to travel uptown. The future seemed so uncertain for Sonya that day. “This is my deaf baby Sonya Rose.” I repeated to myself as I prepared to introduce her to strangers who would stare awkwardly at the huge hearing aids dangling on the sides of her head.

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