Three Weeks In and Five Observations

Five observations three weeks after Sonya’s cochlear implant activation.

Several weeks following Sonya’s initial activation and here are my thoughts:

1. Our experience has been very different from the many YouTube videos which portray the activation of a cochlear implant as some kind of miraculous event – in which one’s ability to hear can be turned on like a light switch. I have watched these videos over and over. They are so moving. I am not saying such videos are not authentic. But I do sometimes question the context. Was this truly the “first time” the person could hear? Or, was this the third or fourth mapping? In any case, our experience with Sonya was much less dramatic.

2. The real work is now. While Sonya may be hearing sounds, she doesn’t yet recognize them and is having trouble processing them. She must learn to listen for and identify every new sound – which requires intense therapy and practice at home. Interestingly, while Sonya used to be able to hear low register sounds with her powerful hearing aids, she now is reacting only to high register sounds (such as bells ringing or, the “sh” and “s” sounds). She will need to re-learn how to interpret and process low register sounds.

3. Sonya’s sleep schedule has changed. She is exhausted after her intense therapy sessions in the morning, and will often sleep 2-3 hours following. At night, however, after a day of stimulation, her brain may be having trouble shutting off – and she tosses and turns, unable to fall asleep. Apparently, this is very common for babies post-implantation. From what I understand, it typically takes about a month for babies to adjust to being able to hear.

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Sonya is exhausted after her daily speech therapy sessions.

4. I find myself questioning every movement she makes. Was it a normal developmental milestone or an issue that is developing post-surgery? For example, Sonya loves to sway her body back and forth. For several days we worried whether this adorable swaying might actually be a vestibular issue resulting from the surgery. Thankfully, we no longer believe it is the case – as it is clear that it is voluntary (she just loves to dance!)

5. Further to the above, there is a constant anxiety that I am not doing enough during the day to stimulate Sonya’s hearing. I try to emulate the games we play during therapy, but often Sonya’s responses are less noticeable. Am I speaking loudly enough? Am I using the right sounds? Am I doing this right?

Ending on a positive note – A recent coup was that we were able to adjust the size of the processors Sonya wears behind her ears. We attached the compact rechargeable battery rather than the full size battery. This allows Sonya to wear her implants without additional wires clipped to her shirt. Not only challenging for us to constantly adjust where the clips were placed, depending on whether she was sitting or lying down, Sonya can now move around much easier. Special thanks to my husband Yan and mother-in-law Lillian for pushing me to make that change!

Not an Easy Week

It has been nearly a week since Sonya’s activation. I want to be positive here, but the truth is that this has been a very difficult week.

While Sonya has done amazing in terms of getting used to hearing much more sound than she was ever used to, she is also a baby. She loses patience quickly and doesn’t love having large devices hanging behind her ears and attached to her clothing. I am grateful that we were instructed to have Sonya wear hearing aids before her surgery – as she has grown somewhat accustomed to hearing devices. However, since her surgery a month ago, she has tasted the freedom of not wearing anything on her head. The cochlear implants are also much larger than her hearing aids and involve much more equipment. I feel like suddenly, what seemed to be manageable has become much more complicated…

Our speech therapists and audiologists have advised us to have Sonya to wear the implants as much as possible. But this has proven to be quite challenging. Particularly, in her car seat (where she spends about 5-6 hours per week on our way to and from speech therapy) and in her stroller.

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The issue is that the two coils, which connect/deliver information to the internal device, are placed on the back of her head. As soon as Sonya moves her head they fall off. Her implants came with a remote which beeps to alert us when the coil is off the implant. This weekend, I think the remote beeped about 40 times…

I could simply turn off the remote – but I want to do everything in my power to ensure that Sonya can hear. I kick myself anytime I notice that it has fallen off.

The good news is that the pilot caps and headbands have worked quite well to keep the processors in place behind Sonya’s ears. As long as she is upright – the processors and coils tend to stay on.

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Aside from the physical adjustment of learning how to effectively use and keep on the new equipment, it has also been an emotional adjustment. Whenever I take Sonya out in her stroller, her beautiful smile never ceases to attract strangers, who often approach us and comment on how adorable she is. I normally welcome such interactions, but these days, I feel nervous whenever it happens. Should I mention why she has wires hanging down from her head? Is it more awkward to bring it up? So far, I say nothing – and just accept the compliment and walk on.

From talking to other parents, I hear that the current adjustment period is temporary – and every baby who gets implants has the same problem – so they are on an even playing field. In time, Sonya will develop the ability to put her implants back on her head as soon as they fall off. In the meantime, would love to hear from other parents any suggestions to keeping them on her head. Thank you!

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.

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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.

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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.

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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.

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