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!

The Free Spirit takes off

"I used to enjoy reading that blog you were writing"... This statement only days ago made me realise again I have left a rather hefty gap between posts.

My current days are consumed by feeds, nappy changes, silly faces, raspberries, colouring in, dancing, swimming; and sometimes, quite simply, all out mayhem. Somewhere amongst this all we fit in our Audiology appointments, Auditory-Verbal Therapy and follow up ENT visits to ensure Jaime is infection free after her time in the Children's Hospital late last year (see 'Leaps and Bounds').

I am please to report that Jaime has the official all clear from her ear infection- we are so thankful for the swift and aggressive treatment we received from the RCH, it means our beautiful Jaime is able to continue her enjoyment of sound!

At Two and a half years old Jaime is an incredible free spirit that carries a light and joy with her that is infectious. As parents we all expect to glow at our children's achievements and antics, somehow I feel she is different, she has the ability to change your point of view, brighten your day and make you smile simply by existing.

To let Jaime's free spirit roam we have begun dance lessons, when we walk into that dance hall and the music starts I am taken back to November 2012; Jaime was only 4weeks old, I was trying to wrap my head around her deafness, trying desperately to imagine what her life was going to be like, what options she was going to have. 
I dreamt of doing all the normal weekend sports and activities and I was determined that we would participate no matter what. 
What I didn't imagine was my daughter enjoying every note and every beat with such clarity; my daughter with not only the special place of her Quiet World but also access to the WHOLE world of sound! (See Jaime dancing here)




As we grow through this hearing journey Jaime takes greater responsibility for her processor and her own hearing. Every morning I wake to the sing-song "mummy... where are you...", as I enter Jaime's room a bundle of energy leaps off the bed toward me... "EAR!! EAR!!", Jaime is ready to enter the day hearing every sound! She now takes so much pride in her CI that she insists on replacing the coil herself (my big girl) and will not remove her processor unless its on her terms. I respect this, I want her to feel that both her Quiet World and her Hearing World are hers. She loves hearing so much that her processor won't come off until the very last minute before bed; however, she enjoys some quiet moments too... if she is tired or overwhelmed I will find her small white processor pressed gently into my palm, with a gentle smile Jaime will snuggle into my chest for a break... my snuggles never last long tho, after a few minutes its back on with her processor and my whirlwind child takes off again!

Through this increasing independence we have also reached a point where we cannot deny Jaime's signals any further... Jaime (yes, a 2.5year old) wants a second CI. 
Jaime flat out refuses her Hearing Aid these days, however everyday she asks for an "ear" whilst pointing to her right (non-implanted) side, when I make an attempt to put her HA on she takes it out stating "no... no like it" followed by an attempt to put her left processor onto her non-implanted ear.
We also noticed a more pronounced lack of response when she is wearing her HA, she is unable to localise to sounds and is unable to understand us when wearing her HA alone.

So amidst the chaos of our already busy life we made the 2+hr round trip into our Cochlear Implant Clinic for final hearing tests to find out if they will consider a second Implant for Jaime. We knew her hearing had deteriorated, and as awful as this sounds, we were hoping her hearing had declined 'enough'. Throughout the testing I was nervous, preliminary hearing tests at our local Audiologists had already shown a decline in hearing, however Jaime was always distracted so I was worried they weren't accurate. This day, Jaime was focused, she took her 'play' task very seriously and was trying so hard to hear the test sounds. Sitting in the background I thought she was responding very well, she seemed to respond instantly every time. When the audiologist finished collecting her results I was sure she was going to tell me that the previous "loss" was a fake and Jaime was indeed still hearing at 70db, instead she greeted me with the news we were hoping for... with hearing tests alone, disregarding behavioural clues, Jaime was now a clear candidate for her second implant, her results emerged at 95-85db. YAY! We are now eagerly awaiting our ENT appointment and our meeting with Jaime's Implant Clinic case worker to dot the i's and cross the t's in our expectations for the second CI and to hopefully book in our surgery date!

We are realistic, given there has been 20months past since her first implant, Jaime will have to learn to hear all over again. She may not achieve the same clarity as her first CI and the sounds may not "meld" between the two. However, she will have an increased ability to localise to sound and if all goes well she will get to experience the joy of her hearing world in Stereo!

I cannot wait to report back in another week... so stay tuned...