Olivia's Journey to Hearing

We are thrilled to announce that Olivia's cochlear implant ("CI" from here on out, to save me a few keystrokes) was activated today, and it was a great success! We weren't quite sure what to expect, as we've been warned time and time again that children don't always react right away, so we went in with very guarded expectations, but we were blown away by just how definitively (and happily) she did react! But before we get to all of that fun stuff, let me give you a little background on what it took for us to get to this point today, as it has truly been quite a journey... (TEASER: There is a great YouTube video of her hearing Chad's voice today right after her activation...it's down toward the end of the post and we think it is just awesome!)

So when we first found out about Olivia's profound hearing loss, way back when she was still in the NICU, we immediately got plugged in with the CI team at Texas Children's Hospital to see if she might be a candidate. We had multiple counseling sessions with the implant program coordinator and learned all about CIs...more than I ever could have imagined knowing about them. We knew we wanted one of these amazing devices for our little girl, as it was her only chance at having "normal" hearing and being able to learn to speak verbally, rather than use sign language. But there were still many hoops to jump through to get approved for the implant. Olivia underwent many, many tests and evaluations (MRIs, CAT scans, bloodwork, EKG, speech eval, neuropsychological eval, etc.), and the CI team then had to review all that input and decide whether they thought she truly was a good candidate for getting an implant. We waited on pins and needles to their decision a few months ago, but obviously they did decide that it was worth a shot to implant her. We were thrilled!

So we did tons of research and finally decided on which device we wanted to use for Olivia (there are 3 different CI manufacturers, all with pros and cons to their specific devices). Then the big day arrived...July 26, surgery day, just 6 days after she turned one year old. The surgery thankfully went off almost without a hitch, except for the fact that they had a very hard time intubating her (getting the breathing tube down her airway that they use when putting these kids under anesthesia) at the start of the procedure. So although the surgery site itself healed very quickly, her poor little throat was not quite so lucky. She spent one night in the hospital (standard procedure) and Chad and I got to stay with her. It was a pretty rough night, and we felt so helpless as she was in a lot of pain and was very uncomfortable, but there was very little we could do to help her feel better other than give her pain meds.

Olivia at the hospital after surgery (attempting a smile, I think...what a trooper)

Each day got progressively better from there, although we did have a bit of a setback 4 days after surgery when she spiked a fever over 105 degrees (VERY scary for us) and we had to take her to the ER. They tested her for all sorts of stuff but eventually decided she probably had viral pneumonia. She had terrible congestion and it hung around for a good 3 weeks or so, but last week she finally got over it. Good riddance!

Then the other big day arrived...today, activation day! Texas Children's waits about a month post-implantation to actually "turn on" the implants, so that the surgery site has plenty of time to heal first. Chad and I had been waiting for this day so anxiously, just dying to know how (if at all) Olivia would react, and how her hearing would change. Again, we tried to set our expectations low, but of course deep down we wanted to see a noticeable reaction out of her, something to reassure us that the implant was actually working for her and that she was able to hear clearly now. When the audiologist first turned it on and started adjusting the programming, Olivia did visibly react to sounds by opening her eyes wider, looking around, etc. But nothing too over the top or earth-shattering. But then a little bit later we put her on Chad's lap and he started talking to her, and I swear it was like a whole new world of sound had just opened up to her, and she was absolutely loving it! She was smiling, "talking" up a storm, and just generally being giddy...it was amazing! Luckily we got it on video and you can see it on YouTube here:

http://www.youtube.com/watch?v=EjM04gaqFrc

I will never, ever forget seeing her so happy like that. I still hate that she was deprived of sound for the first year of her life, but man is it awesome to be able to give her that gift (which most of us take for granted) now. I could not be happier with our decision to get her a CI, and hopefully this is only the beginning of a long road of many amazing experiences for Olivia as this brand new world of sound opens up for her.

In closing, here are a couple pics of Olivia with her stylish new ear gear!

This is the headpiece that attaches to Olivia's head with a magnet (there is another magnet implanted just under her skin); it transmits the sound captured by the speech processor to the internal device). Of course we jazzed it up for her with a decorative cover!

Here is Olivia with one of the mascots of Advanced Bionics (the company that makes her CI). If you look closely, you'll see that the monkey also has her own CI over her ear! On Olivia's shoulder is the speech processor that connects to the magnetic headpiece. Adults wear these over their ears, like a hearing aid, but for babies they often just clip it to their clothes since it's rather large to try to keep on such tiny ears.

So that's Olivia's journey to hearing so far, but I'm sure it will only get more interesting from here, and we'll make sure to share some more stories as she continues to progress in her hearing. As always, thanks so much to everyone for keeping us in your thoughts and prayers, and specifically for all your prayers throughout this whole process of getting Olivia's implant. It's been stressful at times and I know we've had lots of anxiety about all of it, but we are finally starting to reap some of the benefits and it is so rewarding to watch it all unfold. Thanks again, and we love you all!

Leslie & Chad