After lunch we returned to the Lied Center for the activation. The IT man did a few last minute things to prepare for the webcast, we chatted with the implant team manager, made a few phone calls to make sure our family had gotten into the webcast, and then it was time to start.
Our Audiologist explained a little about the process, that they would test each electrode for responses from the auditory nerve, and they would put beeps through the implant, watching carefully for cues from Audrena (i.e. blinking, or turning into my shoulder) to make sure it was not too loud. After all of that, they would turn on the mic so that she could hear sounds within the room. There was another Audiologist playing with Audrena to keep her attention and also to watch for those cues.
Here is a short clip of Audrena's first response to sound! She heard the beep and then turned to look at the Audiologist behind me. She responded that way throughout the programming. At that first head turn, we felt like we shouldn't believe it. Did we really see her turn to a sound? We couldn't believe our eyes. Then she started consistently stilling, turning her eyes back and forth to try to localize it, and then turning to look at the Audiologist. We did a pretty good job of keeping our emotions in check, but we fought the tears for sure! It was an overwhelming moment. I can't even describe the rush of emotion. From silence to sound with a series of beeps, and our daughter's life is forever changed. We knew in that moment, with every bit of our hearts, that we made the right decision.
After the programming was done for the day, the Audiologist gave us the rundown of how to care for the Advanced Bionics Neptune. She told us that there were 3 program levels that we should work through before the next morning. If any one of them seemed too loud for Audrena (i.e. if we noticed blinks or other reactions), we should back off and go back to the previous program. We took our suitcase full of equipment and went to the Listening Therapy appointment.
Our Speech-Language Pathologist went over things we should do at home, and she engaged in some play with Audrena, showing us how we can help Audrena to develop her speech and language. We did notice that Audrena seemed to hear her when she made the "aaaahhhh" noise for a toy airplane and the "ssshhhh" noise for a sleeping baby. Audrena also turned when the SLP accidentally slammed the toy cabinet door. In retrospect, we should have been participating a little more in this appointment, but by this time we were mentally exhausted and mostly just watched. I promise we soaked in the information, though!
After we were done, we went to check into our hotel. We quickly discovered that it's impossible to keep the headpiece on in the car seat. Since then, an experienced parent has suggested we get out our Hanna Andersson Aviator Cap for car rides. For the time being, we gave up on keeping the CI on in the car. My grandma was in the hospital, so we decided to take Audrena to see her. What better thing to lift the spirits than a visit from your great-grandbaby? The extra two hours in the car that day were completely worth it to see Grandma and Audrena together!
It was a long and exhausting day, but we did observe Audrena responding to sound. I went to bed emotionally and mentally drained. It was pretty taxing to observe Audrena hearing with her implant, then to see my grandma in the hospital, to replace the headpiece a million and ten times both in and out of the car, and then to have to try to remember what exactly we needed to do with the implant for the overnight. We had to unpack the "suitcase" of supplies and sort through it to find what we needed. It was a late night. Needless to say, we all slept very good!
The next morning, we were back with our Audiologists for more programming. They finished testing the electrodes and developed two additional programs for us to try. Audrena did pretty well for about an hour, and then she was just done. They did say that usually they see a big blossom from the children at either one or three months. We will be back in two weeks for another session. When we got to the car, Audrena fell asleep immediately! She was exhausted.
Since we have been home, we have seen Audrena protest heartily when her CI is removed, point at her ear when she hears a sound, and concentrate when she hears something. We didn't expect all of these things so soon after activation. After all, we are in the early stages of programming right now.
I would also like to take the opportunity to address something because other new CI parents are likely to run into the same situation at some point. We knew going into this that cochlear implants are very controversial. The Deaf community/culture (not sure I'm using the correct terms here) can be very anti-implant for various reasons. I understand that. I respect that completely. I experienced both support for, and resistance to, Audrena's implant today. I didn't expect it so soon, but I knew it would happen someday. Without getting into identities on a public blog, I will just say that I received some good words from a deaf person who does not have a CI, and I also had a deaf person tell me that we should have waited until Audrena is old enough to decide for herself. She also told me that if Audrena were in an accident, she could not be resuscitated with paddles because it would "blow her brains out." I know that is untrue and is an old wives' tale, so to speak, about cochlear implants. My husband and I both have just enough medical background to know what is or is not possible. People quickly came to my defense, and I appreciate that. Randy and I did not take this decision lightly. We weighed the risks. We asked the medical questions. We explored our options wholeheartedly. We even considered moving to Minnesota or St. Louis to be near an excellent school for the deaf. We considered what Audrena might or might not want later in life. We know that deaf people absolutely thrive with sign language, and they can do great things. In fact, we do plan to have Audrena learn sign language as she gets older because there is always the possibility that she will need it. Not being able to hear would not make or break Audrena, but we are confident that it will help her throughout life. If Audrena decides she does not want the implant later in life, then she can choose not to wear it, or she can choose to have it removed. In the meantime, we are committed to our decision, and we're happy with the results we have seen thus far in these early days.
We'll continue to keep you all updated as the next surgery date approaches!
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