Gearing Up for Surround Sound

Today I sit and reflect having just passed the halfway point between Jaime's surgery to receive her second Cochlear Implant and her second side "switch on".

Two weeks ago our home was filled with an air of anticipation and the usual anxieties that go along with watching your precious child undergo surgery.

Sunday evening Jaime was very exited...

"I go to the hospital when the sun wakes up..."

Yes

"I get my new Coc-ear Im-plant?"

Yes, Jaime, you get your new Cochlear Implant

"I get two Coc-ear Im-plant?"

Yes Jaime, you will have two Cochlear Implants

"Yay, Woo-hoo! Yippee!"

The undeniable joy expressed by Jaime at not even 3years old is inspiring. It's hard to know how much to explain to a 2year old about her upcoming surgery, however, its clear that she has a reasonable understanding and is becoming very excited!

Jaime is able to tell anyone that asks (and for that matter anyone that will listen!) that tomorrow is the day she gets her second "Coc-ear Im-Plant" and that first the doctor will give her some "special medicine" to make her sleepy.

The process has certainly been helped along by the fact that a very special friend of ours, Hamish, underwent Cochlear Implant surgery only a week prior. We visited Hamish in the hospital and discussed how brave Hamish had been; Jaime was able to see the drip and the head bandage that she too would be wearing in a weeks time. These two toddlers share a special bond that us as their parents will never understand, they share a special world all to themselves and take great comfort that they are not alone, someone else is the "same-same".

Time had come for Jaime's turn, we woke early and jumped in the car (much to Jaime's amusement as for some reason the sun had forgotten to wake up), and began the long drive to the hospital. Jaime coped incredibly well and was very accepting that we were not allowed to have any breakfast today (she may have been promised a chocolate frog post surgery... hey bribery... I mean, incentives... are sometimes more than appropriate). 

Once we arrived at the hospital Jaime marched through the front doors with her head high, clearly proud about what was going to happen today. We were shown to our room on the children's ward and settled down to some morning TV whilst awaiting our pre-op meeting with our anaesthetist.

Jaime falls into the category of an "institutionalised" child, sounds awful doesn't it! The term (one I don't really like, but I don't choose these things) refers to a child who has undergone multiple hospital admissions, surgeries and procedures. For these children they can either be confident in a hospital setting as they know the ins and outs, or they can be highly sensitised, carrying a fear of doctors, needles and procedures. Our anaesthetist was absolutely amazing, she started with a phone call the evening before surgery to discuss how Jaime normally reacts in hospital and how best to prepare her for surgery. The morning of surgery the anaesthetist met with us and introduced herself to Jaime and assessed if there was a need for a Pre-med (a relaxant to reduce anxiety), to her surprise Jaime was confident and ready to go. Satisfied that Jaime was ready for her turn in theatre the anaesthetist left to prepare in the operating room. I was handed a hat, gown and booties to wear so I could accompany Jaime.

Jaime and I sat on the edge of the bed, my little 'baby' all smiles (and giggles at mummy's "funny hat"), swinging her legs in anticipation. Around the door frame appeared a smiling face... "Ready to go?" chimed the nurse. Jaime jumped up and took the nurses hand and marched her down the hall to the lifts and into the operating room.

We were sat on a chair amongst tables of 'blue sheets' covering all the sterilised operating equipment, I felt small in the middle of that room, and would expect a small child to feel tiny; not my little girl however, like her father, she saw this as an opportunity to be the centre of attention! She was boss! "I do it!" She took the anaesthetic mask and placed it over her own face, smiling the whole time she drifted off to sleep, gradually becoming heavy in my arms.

With a quick kiss I left my baby girl in the capable hands of the anaesthetic team and her amazing surgeon.

Two hours ticked by, each second seemingly taking two. Although time was dragging its heals I felt surprisingly calm, reassured that my daughter was safe. At the two hour mark her surgeon came and met with me, the surgery was deemed an overwhelming success, placement of the electrode was as good as you could ask and the in-operative check of the electrodes showed that they all registered as expected. An hour more passed before I was able to head into the recovery room to see my child, check that she was indeed 'OK' with my own eyes. I scoured the recovery beds, glancing over half a dozen adult sized lumps of blanket, sleeping off their anaesthetic. Finally my eyes fell on a familiar figure, a little doll curled up peacefully, sleeping, resting. I enjoyed some lovely conversations with the nursing staff whilst we waited for Jaime to wake enough to return to the ward.

The next five hours where the hardest, disoriented from her surgery and uncomfortable from the pain we enjoyed cuddles broken by amazingly spectacular toddler tantrums! Not least of which was the demand for sandwiches, who would blame her, she hadn't eaten all morning; we certainly didn't have to worry about getting her appetite back. At the five hour mark we had a breakthrough, with a dose of strong painkillers the tantrums were banished and in their place emerged our fun loving girl. This marked the last of any evidence that she had just emerged from over 2hrs of surgery (aside from her large head bandage of course!)

After an overnight stay it was time to head home, Jaime was again in high spirits and in charge of her own suitcase ("Mummy, I do it"), happily trundled past the rest of the ward exclaiming "Hab a nice Day!!"

The following day we dropped Jaime's brother (BabyB) off at daycare to have a mummy and me recovery day. Whilst there Jaime was eager to go and visit her friends and wanted to stay and play, with a frown I had to tell her it was a 'stay at home' day, but promised she could return next week. It's truly amazing how quickly kids recover.

Now two weeks down the track we count the days until her "other ear, other Coc-ear Im-Plant" is switched on. 

During this time we have busied ourselves (4weeks feels like forever when you are excited!) We made the decision to share Jaime's headbands, that she has used throughout her journey for her Hearing Aids and Cochlear Implant, with the rest of the world. Sewing is a distraction and a hobby for me and I have taken much joy in being able to help both children and adults feel confident in wearing their hearing devices. Its a seemingly small thing that has turned out to mean so much to those that have received a headband.

The headbands have taken on a new role too, one that was unexpected but absolutely has made me smile (and shed a tear or two). During the process of making the first headbands I was asked to make a few special requests, these were for some very special mums, dads and siblings to have 'matching' headbands and bandanas. 

For our CI recipients headbands can play a much bigger role than a decoration, they serve as a vehicle to encourage recipients to wear their cochlear implants, whether that be in the early days when the processor is new and daunting, or further down the track so that a child(or adult) can partake in activities such as sport without worrying about their processor falling off. 

These families were able to show their kids that if mum/dad/sister/brother are able to wear their headband with confidence so can the child.

I was absolutely moved to tears when a beautiful daycare centre took this a step further. When they heard that Hamish (our little friend from earlier) was having a hard time adjusting to his new CI they surprised him, when Hamish arrived at daycare, all the staff and children were wearing headbands and bandanas to show him support and encouragement, at first he remained hesitant, but as the day progressed, success! Hamish finished the day by wearing his bandana and CI! I love to see our community rally together at support each other.

I can only hope that we and every other family traveling this journey can experience this same community support. It takes a village to raise a child.

We love including you as part of our amazing 'village' and I encourage you to share your story so that others can feel less alone. I also encourage you to reach out via your Cochlear Implant Clinic, Hospital, Audiologist or Early Intervention service, ask to find a family that is travelling your same journey. Don't sit silently in the waiting room, talk to the other parents, they are probably itching to say hello but may just be shy; if you get the chance to meet another child that is undergoing their CI surgery, see if your child can be involved to show them that it's 'OK'; band together and create the village you want to see raise your child.

Take care... We will be checking back in after Jaime's 'Switch On'

The Dating Game

Woo Hoo!!! We have a date!

Just Chillin'

Wednesday morning we dropped BabyB at childcare and trundled up to the city to meet with Jaime's ENT surgeon.

As we walked the ice cold city streets toward the hospital, Jaime and I shared an air of excitement...

We entered the waiting room,  Its glass and mirrored walls always reminds me of a fish tank; a holding ground for a wide variety of fish, all bobbing around awaiting their turn to be plucked from the tank. Sometimes the tank is full of old fish, and sometimes its a school of baby fish all fighting for prime position around the treasure chest of toys, sometimes you could swear a shark was on the prowl with all eyes fixed on the waiting room door, everyone in staunch silence.

Today it was a beautifully vibrant mixture, a tropical assortment that were more that happy to socialise and share stories.

I love seeing the different stages of the cochlear journey all in the one place, each supporting the other.

From those anxiously waiting for their first appointment, wondering "is this for me"; to those waiting in anticipation for their green light; then others who have taken their first tentative steps into the hearing world, to the experts that have been up and running for years.

The 'experts' are reminded how far they have come and the newcomers get to see how much they can achieve, its beautiful.

We are in-between, on one side we are entering the realm of seasoned pro, wonderful progress through the use of her CI, a fabulous example to others; on the other hand, we too are again newbies, taking our first unknown steps into the world of bilateral implants.

After 1hr20 of waiting (yep, our ENT was running just a tad late) we had watched the fish bowl slowly empty until Jaime was a lone goldfish racing laps around the now spacious bowl. Finally her name was called, finally it was time to sign the dotted line ready for hospital admission in less than two weeks time. Our date is set, June15 will mark our entry into the bilateral CI world.

Despite all the waiting, our appointment was brief, 5minutes later we were on our way. As we departed the office our ENT quickly checked if we were aiming to preserve Jaime's residual hearing or not, without too much thought my response was "as long as we get a good electrode placement, what will be, will be".

That night I tossed and turned, I like to think of myself as the fact finding sort, I like to be informed, yet I had rather flippantly brushed of the question of hearing preservation. After battling for approval for this CI you would think I would take this a little more seriously, should I indeed be pushing to preserve what little Jaime has left? Is one electrode better than another? I didn't want to regret my choice.

I made the call to our ENT, I didn't really know what I wanted to ask, so I just blurted something about making the right choice.

I was glad I picked up the phone, our ENT was fantastic and talked me through the electrode selection.

Jaime is a candidate for both the Contoured and Straight electrode arrays (some recipients will be restricted to one or the other due to their anatomy)  for us, there was somewhat of a choice.

The straight array is fantastic, it is thin and flexible enabling it to curve passively through the cochlear along the outer wall, the hair cells that will pick up the sound signals line the inner wall of the cochlear, so by avoiding the inner surface the straight electrode is less traumatic and therefor has the ability to preserve any natural hearing that may be present (not guaranteed but more likely).

The only downside is that due to the position of this electrode it requires a higher power input to bridge the gap from the electrode to the nerve endings, occasionally this restricts the ability to stimulate the deepest hair cells that are responsible for low frequency sounds (your bass sounds).

For those aiming to preserve hearing, the hearing they do have left normally resides in those lower frequencies so this type of insertion makes sense.

Image from: Slide Share

Although Jaime has a little hearing left, it has been gradually dropping and therefor in the next 10 or so years its feasible that she won't have any residual hearing anyway, so what would our reasoning be to try and preserve it for 10years?

The idea sounds great, leave her with 'something' for those times when she can't wear her CI; tho, she doesn't use that sound now so she isn't really about to start.

So, what about the contoured electrode? This is the big sumo when compared to the Slim Straight electrode, its fatter and not so delicate as it passes through the cochlear. The Contoured electrode is exactly that, contoured, it is pre-shaped to follow the tight spiral of the cochlear.

This pre-shaping means it is able to hug tightly against the inner surface of the cochlear, placing it in direct contact with the hair cells and allowing for it to reach deeper into the cochlear, this also means that by stomping its way through the cochlear it is likely to destroy what hearing is left.

As a quiet world mumma I will always worry about making the right choices, I want Jaime to have nothing but the best! In this case, the stomping robust Sumo wins over the agile Slim electrode array.

Bring on June 15th!!! We are ready to tackle implant number two head on, we are ready for the joys and the challenges.

Always ready to tackle everything with a smile!

Some of you may wonder where our quiet world daddy is through all this. He is here, he lurks in the background chiming in when he can, he tries hard to learn about this whole new world and is amazing with Jaime. He is Jaime's light, her clown and superhero. When it comes to the technical side, lets put it this way... He never knew there was more than one type of Watermelon (incase you weren't aware, there are thousands of watermelon species!) In his mind you could either hear or you couldn't, there weren't all these different types of hearing loss, and there certainly weren't different types of implants! Boy is there a whole new world out there he could get lost in!

An Eventful Month

I have been away from writing for a few weeks, Jaime has proven to be a great distraction! Between two new teeth (she now has a total of four), learning to command crawl, beginning to "baby babble" (amongst the many new sounds, dadada has made her Dad very proud!) and an overseas holiday we are also expecting Jaime's Quiet World to soon get a little louder!

Four weeks ago we found ourselves back at the Cochlear Implant Clinic for further hearing tests. You may recall, we left our last appointment disheartened that Jaime may be left to fend for herself with less than ideal levels of hearing... At the conclusion of this test I held my breath as I asked the burning question, the verdict... I am excited to report Jaime is officially eligible for a Cochlear Implant!

We couldn't be happier with the news... to those with hearing children this may seem an oddity, to be excited that our child is eligible for surgery to implant a medical device... to others with deaf children... we are being granted the gift of hearing!

For us this was the perfect way to kick off our holiday. My husband and I bundled up Jaime and jumped on a plane for 15hours to LA.... Mad I know! Aside from juggling seven bags between us (four of which belong to the smallest family member) our flight was pleasant, Jaime took to flying without any hassles and straight away began making new friends.
Once in LA we hired a car and drove to Vegas... As soon as we hit the bright lights of the Vegas strip Jaime was in awe... I don't believe her eyes could have opened any wider to take in her surrounds!
Over the next two weeks Jaime continued as she had on the plane... with her infectious smile she would stop every second person in the street, ever other, would at least smile in return. (I think my husband and I are finally sick of hearing "ooh, look at that baby".)

Most of the time Jaime was able to enjoy both the sights and sounds of the Vegas spectacle, however on occasion her lack of hearing was advantageous. During nap time the loud music of Fremont street went largely unnoticed (although one really loud finale did elicit a brief eye opening). Also whilst we tried our hand at indoor skydiving the staff warned that the sound within the viewing area upsets most babies, Jaime happily watched on as 'Mum' and 'Dad' attempted to look graceful flying above a giant fan.

After nine nights in Vegas with a 7month old we thought we had made it through our holiday relatively unscathed... however...
On the final day of our holiday, drama struck! after 6months of close calls we have finally lost our first hearing aid... I am still holing on to that final tread of hope that it may be located amongst our bags, however I have a feeling I will be making a call to Australian Hearing on Monday morning... oops.

Now that we are home we are ready to embark on the final few steps before Jaime's surgery day.
Late June Jaime will have an MRI/CT scan to ensure the structures of Jaime's inner ear are well formed and suitable to receive the implant. Once we have the results from these scans (hopefully by early July) we will meet with the surgeon to discuss and sign off on the surgery... Then all that is left, is to wait on a surgery date.