Amy took one Harmony, hooked it up to the computer and then it was time to begin with Melody's first mapping. Because Melody is so young (only 12 months) she is not able to tell us much information. Amy took the headpiece and processor and gently placed it on Melody's ear. Melody turned and kind of looked at her funny. We held our breath, Melody promptly swatted it off her head.
Amy told us that she was going start off by doing some “objective measurements" - this means that she would be presenting some sounds through the implant and the computer and hardware would measure the responses to give them a starting point of where to set her M-levels. How cool is that?!? Kind of like the testing they do on newborns during the hearing screening - obviously, they won't be raising their little hands to say, “Oh! I heard the beep!” LOL
After she did the measurements on the right side, she repeated the procedure on the left side. Working quickly as Melody was getting tired. Our job was just to keep her distracted and relatively quiet. We were prepared for this and brought a couple of Melody's favorite toys. We also had lots of books and even a blanket for peek-a-boo.
Now that measurements were made on both sides Amy indicated that she was going to turn on her processors and our little girl would hear for the first time with her cochlear implants. Up to this point all Melody had heard was “beeps” and funny noises – nothing meaningful. Amy also reminded us that there was no way to predict how Melody will respond and she may not respond at all to sound or she may not like the sound and cry. The important thing was for us to make sure that the sound was comfortable for her.
This was the moment of truth and it was like her short little life flashing before my eyes…her birth, her diagnosis, her first pair of hearing aids, her first/second/third set of earmolds (ha!), her CI evaluation, surgery, time without hearing aids…and here we were. Amy said that because Melody is so young, she was going to start out at a very low level and SLOWLY turn it up until we saw her first response…
Amy did a few more things on her laptop and said, “Here we go!” Amy asked me to talk to Melody while she turned up the sound. Melody, oblivious to what was going on around her, was happily chewing on the corner of her blanket and looking down at it.
The next moment, I'll never forget.
As Amy was hitting some keys, I said, “Melody, Melody…it's mommy…can you hear me?…I love you!”…and Melody blinked. Then she blinked again. She also stopped chewing on her blanket. MY BABY COULD HEAR!!!!!! Amy turned off the computer for a minute then turned it back on and I said the same thing again and Melody reached up to one of her headpieces and pulled it off.
Tears of joy streamed down our cheeks! She could hear! I remember hugging my husband and kissing Melody all over – she had NO idea why Mom was getting so excited! I think I may have scared her!
Amy let us have a moment and then continued adjusting Melody's levels. As Amy had said earlier everyone's first reactions at initial stimulation are a bit different…some kids start frantically looking around, some cry, some just get really quiet. Melody never full out cried but all of a sudden she got kinda clingy. I was happy to oblige her by giving her a big hug but then also encouraged her to sit up so that we could continue with the testing.
After a few more measurements, Amy declared that we had a pretty good first map and that she would turn off the processors for a little while she did some further programming. When she turned them off, it was interesting to me that Melody had the same reaction. She got somewhat quiet and started looking around – it's like she realized that she couldn't hear again. We played some more and distracted her while Amy added some different maps to her other program slots. It's typical for new implantees to start needing more sound as their brains start to make sense of the new sounds around them. So, program #1 was her starting level, Program #2 was a little bit louder meaning her M-levels were increased slightly and Program #3 provided the biggest increase in her M-levels – giving her the most sound. This would allow us to gradually switch to louder programs as Melody needed over the next 2 weeks until we returned for more programming.
Before leaving, Amy went through all of the paperwork and accessories with us. We sat down at the desk and filled out the requisite forms and registration. Amy also showed us what was in “the kit”…now, I understand that I'm pretty well-versed in this stuff since we already have a child with a CI and so, it wasn't a big deal. For you new parents out there, I imagine that getting all of these pieces and parts is a bit overwhelming at first. I totally remember going through that with Buddy…after that first appointment, all I wanted to do was make sure that I got the battery on right and that the headpiece stayed on! A lot of that other stuff was a blur and this is completely NORMAL. The audiologists understand that there is a lot to digest and that it may take some time and repetition before you understand it all. I've heard of some clinics being able to give you some of your equipment ahead of time (like batteries and user guides and such) – be sure to check with your clinic about their procedures. Another great thing to do is check out the Advanced Bionics website – they have an awesome section called “Getting” that talks about what to expect on this first day of sound and even has links to User Guides and some videos
I was talking to a parent the other day that was going through this process for the first time and she was in shellshock. Luckily, she remembered that AB has an Audiologist on Call through the BEA Support Center to help them walk through what to do. What a great service! It's so important to be able to reach out to parents in different ways because everyone reacts to this journey in a different way…there's also a DVD and instruction booklet, information on www.bionicear.com and of course, getting information straight from the experts (i.e., recipients) at www.hearingjourney.com
Because Melody is so young, our job was to keep the device on her all waking hours – and her little hands are quick; watch and record her reactions to sound – either positive or negative; and remember to point out sounds around her and make a big deal about them so that she could begin to learn and make sense of her new “hearing world”. I commented on how I was totally hooked on the Listening Room and Amy agreed that they had great tips and resources on there, especially for the parents of new implantees.
We had already scheduled our follow-up visits and remembered how it was like putting pieces of a puzzle together at every appointment. Buddy was a bit older but with Melody being so much younger, we know that it's impossible to get all of the information that we need in one sitting. As Melody gets older and matures, she'll be able to do more things behaviorally – like respond to the beeps in the booth and eventually even tell us information like if a certain sound is too loud. Everything comes in time and I must remember to be patient J.
I was carrying Melody and walking somewhat slowly through the corridor. Oh yes – she was definitely hearing things! I tried to take notice of all the sounds around me that I take for granted everyday; there was the sound of a paper shredder going, an announcement on the PA system and just general conversations going on all around her. I could feel her little body tense up when there was a sudden sound and her head would kind of jerk around. She didn't cry though. She didn't try to pull off her headpieces either. That's my girl!
When we came through the doorway, I thought the boys were going to tackle us. They were so excited! I looked at them and nodded. Yes, Melody could hear.
In the middle of this waiting area, there was a small table with some blocks. I put Melody down on the floor and she promptly pulled herself up to a stand so that she could reach for the blocks. She got a hold of one but then she lost her grasp and it hit the table. She picked up another one and let that one fall, too. Oh! I could almost see the wheels turning in her head – “if something hits another thing, then it makes a noise”. Now, who knows what TRULY goes on in the mind of a one-year old but it's fun to guess, right?
Melody started to wiggle in my arms so I put her down by the table. Then the most precious thing happened that I will never forget – Melody let go of the small table and took her first steps towards Buddy without any help.
A day of firsts. Indeed!
She recovered very well and was back to her crawling, creeping and climbing ways in just a couple of days. I asked the boys to tone down the rough-housing a notch (those kids love to wrestle and tickle each other!) and be mindful of her incisions. Luckily, she didn't try to grab at them too much. We went back for our one-week check and our surgeon said everything looked great. Woo hoo!
The kids have been very supportive during this interim period with Melody not able to hear anything. I don't think I've seen so many different facial expressions in my life! LOL Buddy and JoJo even made some drawings of themselves making these crazy faces. They're all plastered above Melody's bed. I love it.
It's amazing how much you can still communicate with your toddler even without words…must be what she feels like! She's observing and taking everything in and yet doesn't have the actual words or a way to communicate. That's what touches, smiles, tears and gestures are for, right?
I'm also noticing how visual Melody is and it still astonishes me! I've even tested her by tip-toeing into a room (so she doesn't feel my elephant steps on the hardwood floors) and her keen eyes don't miss a thing. Buddy is the same way. When his implant is off, he is very aware of movements and vibrations. Definitely good skills to have!
- It's got this great earhook called the T-mic™ that sits at the level of her ear canal. Melody can look just like JoJo when she's old enough to wear headphones and hold the phone up to her ear. Amy explained that because it uses this natural placement, the T-mic is also great for hearing better in noise and also for helping to figure out where sounds are.
- The battery life is awesome with the Harmony – most people only need one battery to last them the whole day!
- This is a very child and parent-friendly processor with dials that are easy to access and use and there is evenan audible alarm that lets us know if the battery needs to be changed or if the headpiece fell off.
- This processor is rugged! It takes a lickin' and keeps on tickin'…
The boys helped me give her a bath today and all looks good! Melody seemed relieved to have that bandage come off and celebrated by an EXTRA big splash in the bathtub!
It's only been a couple of days and Melody is doing great. She's back to crawling around, standing up, playing with her toys and is even eating just fine. Buddy is just giddy in anticipation of her hook-up. It must be so interesting for him to kind of go through this whole experience again but from a whole different perspective!
Oh yeah – we started another countdown calendar. This one is for her hook-up! Yay!
We started yesterday by saying good-bye to the boys as we left them in the very capable hands of their grandparents. As usual, the boys doted over their little sister and gave her lots of hugs and kisses and were rewarded by a two-toothed smile and giggle. As we drove to the hospital, she sat in her carseat watching the trees and buildings whiz by, pointing and babbling as she often does. As she squirmed in her seat trying to reach a toy, I heard that unmistakable high-pitched “eeeeeeeeeeee” - also known as the tell-tale squeal of her hearing aids. It occurred to me that this would be the last time she would be wearing them.
We got to the hospital and for the hospital staff, it was business as usual, taking our paperwork, showing us to the waiting area and then eventually the room where we would change Melody into her hospital gown. We held our little girl tight, also showering her with kisses and lots of hugs. After a little while, our surgeon came in to say, “Hi!” and let us know that they would soon be taking her in for surgery. The staff, at the hospital as well as our cochlear implant center, is so wonderful, caring and kind. When it was time, I remember gently taking out Melody's hearing aids, holding them in my hand and placing them in my purse. All of a sudden it was déjà vu back to Buddy's surgery but instead of looking down at a young Buddy, I was looking down at my baby girl, Melody. But I knew that she was in very capable and skilled hands. We carried her out of the room and waved and blew kisses as we handed her to the OR nurse. Then, it was time to wait.
As with any surgery, that time in the OR is the most anxious. No doubt about it. It seems even more so when it is your child. I passed the time away chatting with Hubby and calling the boys to let them know that Melody was fine and that she was in surgery.
A few hours later, we were paged in the waiting area to come to recovery. I'm so thankful that there are resources on the Internet for sharing things like pictures and videos. We'd been through this with Buddy so we had our own experience, but we also got to see some recovery pictures of some of our friends' children and so had some reasonable idea of what to expect from a bilateral surgery. We're the kind of family that likes to do research and prepare and so, for us, knowing what to expect helps us cope. Finally, we saw our little girl with the big bandage wrapped around her head in the big hospital bed and just held her hand until she woke up. As expected, she was a little groggy from the anesthesia and whimpered a little bit as she was probably wondering, “Where am I?” They put those braces around her elbows to keep her arms straight so that she wouldn't immediately started tugging on the bandage. That was a little disconcerting for her and so we comforted her by pulling out her favorite blanket and playing peekaboo. Pretty soon, the surgeon came in and told us that the surgery went very well. Both of the internal devices were in and the incisions looked good. We talked about the normal care for the incision sites and how to deal with the possible effects of the anesthesia and how it would be about 3-4 weeks before the initial stimulation. As with Buddy, we knew that we had to wait for the incisions to heal and for the swelling to go down before we connected the external processor to the internal device (or in this case, processors to the devices!).
In a few hours, Melody started to move around more and wanted to be held. She was a little teary-eyed sometimes and so we distracted her with books and toys that we had brought. Funny – as we played with these things, I found myself back in my mode of making sound effects and narrating everything that I was doing. It then struck me that Melody could not hear any of this. No hearing aids! Doing these things are such a part of our lives that we don't even think twice about it. That's a good thing, right? LOL.
Then it was time to go home. Melody was still pretty tired from the effects of surgery and continued to sleep on and off for the rest of the evening and into the morning. We slowly introduced some fluids and crackers until we knew that she was able to keep them down. This morning, “Merry Melody” as we sometimes call her, showed signs of a quick recovery (Hurray!) and soon was back to some of her old ways. We focused on quieter activities today like books and toys and tried to keep moving around to a minimum. Melody isn't walking yet but definitely loves her saucer so it was great to be able to put her in that and let her play. As expected, she took a few more naps today than normal but by dinnertime was really more like her old self. If not for the pressure bandage around her head, you might not even realize she had just had surgery.
Now, I know that every child is different and so for you parents out there reading this, please know that this is just one possible scenario for how a child recovers from the surgery. Everyone heals at their own pace. My only word of advice is that if you have any concerns about your child's recovery, please contact your pediatrician, cochlear implant center or whatever contact your surgeon provided you. They're the experts!
Phew! It's getting late and I'm pooped. More to come…
You can also network with other families and professionals. I've found that these networking opportunities are so important for my own peace of mind. I have met so many of these parents online or through e-mails and it's so great to put a face with a name!
If you want to turn this into a family trip, they have childcare in the hotel that you can pay for so that you can leave your child(ren) with trained caregivers and attend workshops on your own. After the last conference we attended, we took a couple of days to take in the local sights and even visited some extended family.
They also have this great exhibit hall where you can see the latest and greatest gadgets and products. All of this under one roof! This bigger national conference happens every two years. There are also state chapters of AG Bell, so if you have an opportunity to go to one that is more local to you, I completely recommend it! For more information on this conference as well as local resources for you, go to http://www.agbell.org/.
We're especially excited because this will be right after Melody's initial stimulation. We'll get to look at all of this with fresh eyes again. We'll be hanging out some at the Advanced Bionics booth in the exhibit hall so please do stop by! We'd love to meet you!!!
Kids are such sponges and I love to see how much Buddy has picked up and uses everyday. As we go through this process with Melody, all I have to do is look at Buddy to know that we have absolutely made the right decision for our family. We KNOW first-hand the opportunities a cochlear implant can provide for our deaf children and we are so grateful. The other day when I went to pick Buddy up from school, I was just watching him from the doorway as he was gathering his backpack. Without missing a beat, I heard him respond to his teacher with his back turned and no visual cues. “You have a great day, too!” was all he said…so simple and everyday for him but for me, it was such a special moment because I know how far he has come – and can go…
The whole family is getting really excited for Melody's upcoming surgery date. We have a countdown calendar on our refrigerator…Buddy and JoJo are really getting into it – it's so cute! Every morning after breakfast, we make a big production of giving Melody a crayon and helping her make a big “X” on the calendar and crossing out the days until May 25. I don't know who's more excited – us, the boys or Melody! Buddy even made the cutest little birthday card for Melody's ears and can't wait to celebrate. He asked if we would have presents, a cake and candles - the whole shebang. LOL
Hubby and I were talking the other night and were just commenting on how different this experience is compared to when Buddy got his cochlear implant. Of course we have jitters and butterflies, which is totally NORMAL. It's just that this time around, we have hindsight on our side and know what to expect. For you parents out there who are new to this whole journey back to hearing, I really encourage you to get your hands on everything that you can to read about what to expect and also to talk to other parents about what they went through.
Advanced Bionics has a really great resource on their website that talks about what to expect for surgery and initial stimulation – you can find it by clicking here. Did you know that they even have a coloring book with accompanying cartoon that you can watch together as a family? You can click here to download the coloring book or contact Advanced Bionics Customer Service at 800 678-2575 to order your copy.
Another great place to go (that we didn't have when Buddy was first implanted) is www.hearingjourney.com. I go there pretty regularly and get to talk to parents, adults, recipients, and professionals about all types of issues. I also feel like I am “paying it forward” by sharing some of our experiences with new parents as well. It makes me feel so good to know that others can learn from what we went through. How empowering!
Preparing for surgery
I've already shared above what I think are two great resources for preparing for the big day (www.bionicear.com and www.hearingjourney.com) . Here are some of my favorite tidbits of advice: