Tuesday, 27 September 2011

Welcome to the hearing world!

Without a doubt yesterday was one of the best days of my life.

Any apprehension, nervousness, doubt or fear I had about Isabel receiving Cochlear implants was erased the moment I heard those computer beeps and saw Issy's reaction.  Our girl has officially entered the hearing world.  The attached video can explain so much better than I ever could in words, her reaction.

To talk you through the process we arrived at the Shepherd Centre first thing in the morning to meet with Yetta (Isabel's Audiologist) and Danielle (her Audio Verbal Therapist/Speech Pathologist).  The girls came through with two huge suitcases of Cochlear hardware...one suitcase for each ear.  This part was a little overwhelming seeing all of the equipment and trying to get our heads around how we will ever be able to learn what each part does.  All in due course!!

Suitcases of hardware and instructions!!

Isabel's trouble shooting remote - this looks after both devices  (as you will see they are currently off as Issy is sleeping...hence why I finally have time to write this! :))

So we first tried each of the magnet coils on Issy's head to make sure the force was strong but not too strong that it would leave a mark on her head or be too sore for her.  Then one by one Yetta connected Isabel's devices up to the computer to check all the electrodes were as they should be and then slowly started increasing the volume of a series of beeps.  You will have seen in the video when Issy started to hear them and moves her eyebrows and then startles when it is turned up another notch again.  AMAZING!  We then switched it over to 'speech' and started softly speaking to Issy and watching her react to different noisemakers and clapping.

The current setting of Isabel's devices is set quite low so to slowly introduce her to the overwhelming world of noise in which we live.  With so much to take in...voices, environmental noises (wind etc), cars, doors slamming etc...it would all be too much to just throw her in full throttle so they will turn it up over the coming weeks.  It was a huge day for her yesterday and she was a little bit upset and exhausted by all the new stimuli....but she is on her way and day by day she will hear more, learn more and eventually speak more!!  I am in complete awe of this amazing technology and eternally grateful to the team at the Shepherd Centre for all they have done for us so far....next step....learning to listen and speak!

M. x

Friday, 23 September 2011

Recovery Update Part 2

I can't believe its already been a week since Isabel's surgery!  Since figuring out how to share my blog through Facebook I have received so many amazing messages of support from friends and family across the globe....all of these notes really have meant so much to us and honestly help to keep our chins up when we have down moments or start to feel sorry for ourselves!  So thank you!!  Isabel really is amazing and she is proving more so with every day this week as she recovers from such a big surgery.

Several people have also asked me since Issy's surgery how I am handling all of this.  To answer that question...you just do.  It's amazing what you can manage and overcome when you have no choice.  Also spending time in a children's hospital is a very humbling experience.  As you sit in waiting rooms with other parents whose children are also having MRI's, CT scans and surgeries you quickly realise things could be so much worse.  I chatted for a while with the mother of a 2 year old girl that had leukemia.  They had been in hospital for 5 weeks undergoing very full on treatment and she was waiting to find out from this MRI if things were getting better.  Her baby was very sick and suffering greatly undergoing all that treatment.  Isabel isn't sick....she isn't suffering...and apart from not being able to hear us she is a very happy, healthy little girl.  AND the best part is, now because of this incredible technology called the Cochlear implant...she IS going to hear us!

So we have some very good news....we went to our GP this morning to have the last part of Issy's dressing removed and to get her scars checked out and it all looks great!  Again can't say enough how amazing Dr. Phillip Chang and his team are...I didn't know what to expect and can say I was so pleasantly surprised today to see what a good job they have done.  Ok so she still has two huge big scars on either side of her head....but once her hair grows we won't know any different.  So we got the official go ahead from the GP that Isabel is able to be 'switched on' on Monday morning at 9am!!!!!

One week post surgery...just need some hair now!

I will admit prior to Isabel's surgery I was still a little apprehensive about whether or not we were doing the right thing.  By having Cochlear implant surgery you are pretty much wiping out all remaining residual hearing someone has as when they insert the electrodes into the cochlea the remaining hairs in the cochlea are damaged.  SO if Isabel had more hearing than we may have thought, this surgery would wipe it.  We had done all the tests and seen several specialists, but I guess being a mum its still hard to believe that your baby can't hear you.  Especially because Isabel is such a noisy baby....she babbles non-stop and copies you when you make noises.  Chris and have both said on many occasions that if we had not had the newborn hearing screening in hospital we would never have known Isabel was deaf.  So after surgery I was nervously waiting to see if Isabel's personality would be any different.  If she would be quieter or more irritable etc.  I am so thankful to report she is not!  She is the same happy, laughing babbling baby she was, which makes me sure that we did not take anything away from her, but rather we have given her a great gift!  The gift of sound!!

1 week post surgery back smiling, playing and reading books!

I know there is still a very long road ahead teaching Isabel to listen and speak using a different mode of hearing, but I can't help being so excited for Monday morning!  I will be counting the hours (and am sure we will be there early!) till we go to the Shepherd Centre for Issy's activation.  Very happy time for us all here.

M. x

Monday, 19 September 2011

Recovery Update

We got back to Canberra last night after an extra day recovering.  Saturday night was worse than Friday!!  We had been given two types of medication for Issy along with her antibiotics.  The first was baby Panadol and the second was called PainStop.  During the day we had been giving her Panadol every 4 hours, but the doctors recommended the PainStop at night as it has a little codeine in it and may help her to sleep.  WELL...that was not to be the case.  Instead Isabel had a horrible reaction to the codeine...think she was just too little and it was too much for her system and she threw up most of the night.  It was so awful and I was beside myself.

Once we switched back to Panadol she settled down again, but the swelling by the morning was getting bigger and bigger.  Watching the Rugby World Cup there was a very real comparison to Mike Tindall (the England captain)!!

Poor Issy looks like she had a very rough night at the pub!

Luckily after a good night sleep on Sunday night the swelling went right down.  I was so scared that the other eye was going to swell and she wasn't going to be able to see or hear!! :(

We had a great day today playing at home and Isabel slept most of the morning.  By 5pm this evening she was back to her bubbly self eating and drinking out of her sippy cup and socialising with everyone.

Still a little bit of a moon face, but shrinking by the hour

A couple more days and I know she will be 100% again.  So glad this horrible part is behind us and we can now focus on 'Activation Day' which will hopefully be next week if her scars have healed up nicely.

M. x

Saturday, 17 September 2011

CI Surgery Day

Well we made it!  We are now back at the hotel and Isabel is tucked up with her Cochlear Koala and new monkey puppet and has been dozing in and out most of the day.

So what happened yesterday?  We arrived at Prince of Wales Private Hospital at 12.30pm and checked into our room in the Paediatric ward.  Our anxiety was building throughout the morning, but once we reached the hospital it hit an all time high and we were all very quiet.  We got to our room and our anaesthetic doctor (Harry) came to see Isabel and to talk us through the process of the day.  Because Chris has a history of Malignant Hyperthermia (which basically means a severe reaction to general anesthetic which makes your blood boil!!) in his family Harry has asked another specialist paediatric anaesthetist to  “sit in” with him for the surgery to help monitor Izzy’s progress.

Still a happy girl!

At 2pm a nurse arrived and asked me to bring Isabel through to theatre.  Mum and Chris had to wait outside while I went in while they put Isabel to sleep (as only one parent could go in).  Doing this was so much better than what we had experienced during Isabel’s MRI/CT general anaesthetic.  On that day Isabel was taken away from us (crying no less and wondering why I was handing her over to a total stranger!) and they had to jab her 5 times trying to get a vein as we listened to her screaming through the paper-thin wall.  It was very traumatic.  This time, I carried Issy into theatre and held tightly onto her while they inserted the drip.  Because of the potential reaction to gas she wasn't allowed any but instead about half an hour before we went in Isabel had patches placed on her to numb the areas where the needles would go.  When they went to insert the needle I braced myself for her to scream in pain….and then there was nothing.  She made a little moan, but then looked up at me and that was it.  Such a trooper!!  60 seconds later the oxygen was on and Isabel was off to sleep.

Very uneasy Mummy!

This is the part when I lost it.  When I had to walk out of that theatre on my own knowing they would be cutting into my baby’s head!!  Having to trust that she would be ok and totally believing the word of a man I had met only twice before.  But somehow because I was able to go into the theatre with her and I knew where she would be, it seemed to make it a little better.

Dr Chang called us 2 hours into surgery to let us know Issy was doing great.  The first implant was in and tested and everyone was happy.  Half way there!!  We filled the time by going to the hospital market and buying Isabel about 10 pairs of these really cute leggings and summer shorts.  Nothing like a bit of retail therapy!!  Then we sat in the room and watched the tennis (or stared at the screen, not sure how much I actually took in) until Dr. Chang called again to tell us he was done and they were on the way to recovery.

At 7pm we were allowed to see Isabel in recovery.  She was all bandaged up and had two little bows on the top of her dressing…it was quite cute really.  She had the same hoarse cry that she had when she had her last GA and she was really disorientated.  She cried and cried and cried.  When I was able to pick her up, blood came out of her nose and mouth, which they told us was totally normal, but it was so scary and awful to see and I completely lost it.

The absolute worst part of the day

The night was pretty rough.  Issy slept for a max of 20 mins at a time and then cried for 20 mins at a time.  She hated the bandage on her head and every time I moved her she wailed.  In the morning she finally managed her first smile....such a relief.  Our surgeon (Dr. Phillip Chang - a complete superstar!!) came in to see us first thing this morning and took off Isabel’s dressing and she was instantly much happier.  He explained she would be sore and swollen for the next week, but that everything looked great.

Her little bows were quite sweet!


The battle wounds :(

Apart from a huge amount of swelling, Isabel is recovering really well.  She is smiling more and more and even laughing while playing with her toys.  One more night here in Sydney and then we will make the drive back to Canberra.  It will be a very quiet week for us while Issy recovers, but then the following week....if things all go to plan...will be the most exciting week of them all!  Isabel's "switch on".  Stay tuned!!

Our little family....Isabel is now on her way!!

M. x

Wednesday, 14 September 2011

Two days to go!

We are two days away from Isabel's Cochlear implant surgery and I am not sure I can explain in words just how nervous, scared and excited I am feeling.  I have never before felt such a combination of overwhelming emotions as I do today.....and I am sure tomorrow will be worse!

We head to Sydney tomorrow to give ourselves an extra night so we aren't rushing on surgery day. It's only about a 3 hour drive (for those who aren't familiar) and my mum is coming up with us to help keep us distracted while Izzy is in surgery.  They have told us it will be 5 hours....that already feels like a lifetime.  I am trying to think of ways to get through the time and have brought every magazine in the store, downloaded movies (not sad ones!), I will take my MacBook and put together photobooks, email family and friends to let them know how she is getting on....still just doesn't quite seem enough.

Our happy girl

I am so scared to see Isabel when she comes out all bandaged up....I know we are doing the right thing and I know its and incredible gift, but I still am so sad and angry that she has to go through all of this at all.  The initial feelings I had the day we found out Isabel was deaf have come flooding back and I find myself asking why this has happened to her?!  Why couldn't I have stopped it and who is to blame?  I know none of this is constructive, but I feel like I do need to mourn this finally as once we check out of that hospital we are on our new path and there are exciting times ahead.

I am also a little sad that she doesn't know what is coming.  It absolutely is better that way so she is not scared, but I feel like I am keeping something from her as she smiles at me so sweetly and that when I have to hand her over to the doctors on Friday she wont understand why I am leaving her.  Hoping these are all normal maternal feelings and that she will forgive me when I am there when she wakes up.

Ok well I just had to get all of these feelings out there.....better out than in and all that!  Two sleeps to go.


Tuesday, 13 September 2011

A little background

I decided to write this blog after finding out our daughter Isabel was born profoundly deaf.  When we found out I immediately went home and was on the internet researching all of our options and I came across several blogs from other parents of babies in the same situation as we were.  These blogs were incredibly helpful in making me feel like I was not alone (I am talking word for word the exact experience of emotions that we were feeling!!) and reassurance that we would in fact get through this.  I have chosen to share our story for two reasons....firstly I hope that our experience may help other parents that feel like the rug has been pulled out from under them and help reassure them that there is a light at the end of the tunnel and secondly so that Isabel one day is able to look back and read about her journey from silence to the hearing world.

And so a little background.....

Isabel was born in Canberra, Australia on April 1st of this year.  After a perfect, healthy pregnancy and a somewhat long labour (18hrs!) she arrived weighing in at a healthy 3.6kg and passed all her initial tests and checks with flying colours.  I was told while in hospital that Issy would have to undergo a compulsory newborn hearing screening before we were discharged to go home, so on our final day the screener came to our room to do the test.  Isabel failed this test but was a little agitated at the time so the results were inconclusive and they asked us to come back, which we did 2 days later.

Isabel Louise Cairns arrives

Isabel again failed this second screening.  At the time the screener told us she may have a fluid build up in her ears and to take her home for a few weeks and feed her to see if it will clear and then come back in and try again.  We did.  Isabel failed the test again.  It was at this point we knew something wasn’t right….I managed to hold it together in the hospital but as soon as I walked outside with my husband, I burst into tears.

Isabel failed a third screening a few days later and we were referred to the Canberra Hospital’s pediatric audiologist unit for more specified testing. This testing took a couple of hours and was conducted whilst Isabel was asleep, once she woke up my husband Chris and I went back in to get the results.  It was at this time we were told Isabel had a severe to profound hearing loss. Sensing we were not exactly sure what this meant, the audiologist said ‘Isabel is deaf’.  I couldn’t speak from that point, the word DEAF terrified me and I immediately felt as though a life sentence had been passed down. I just held Issy in my arms and cried and cried while Chris spoke to the audiologist and they explained what would happened next.

We were told the positive thing to come from all of this is that because we caught this so early and because Isabel had such a severe loss, there was a very good chance she may be a candidate for cochlear implants.  We were familiar with Cochlear as Chris’ father, Lance had been the recipient of a Cochlear implant just 12 months prior, at the age of 60 and we had seen how big a difference it had made to his life. So although this was by far the scariest thing that had ever happened to us, we knew there may be a light at the end of the tunnel.

The audiologists at Canberra hospital were fantastic. Not only did they talk to us about our options, they called an Ear, Nose and Throat specialist and got us in that day.  They also made an appointment for us to have Isabel’s hearing aid moulds fitted the next day.  It was on the back of this care and efficiency that we decided to relocate from Dubai back to Canberra to ensure Isabel would have consistency of care and people around her that would be there to see her through to school and beyond.  At the hospital that day we were also given the details of a range of different deaf support groups and organizations for deaf children and talked to about options like signing and deaf schools etc.  For my husband and I this was out of the question right from the start. If Isabel was able to have cochlear implant surgery we were going to make sure that she would learn to listen and speak like any other hearing child.

We contacted the Shepherd Centre on the back of this as we believed in their philosophy of teaching children to listen and speak and getting them ready for mainstream school.  I may have seemed a little nuts knocking on their door when Isabel was only 4 weeks old, but it was so important for us to be proactive and we too wanted to educate ourselves on the process ahead.  It was during our visits to the Shepherd Centre that we have been able to meet with families of children who through early intervention have received cochlear implants.  Meeting these children and seeing how well they are doing, many who are ahead of their hearing peers, reaffirmed for us that our decision for Isabel to get bilateral cochlear implants was the right one.

Isabel & her Papa

Our most recent hurdle occurred last Friday when Isabel underwent an MRI and CT scan to assess whether she has all the internal structural components required for Cochlear implant surgery.  It was a long day at two different hospitals, but at about 5pm on Friday evening our surgeon, Dr Chang, after looking at Isabel’s scans, came and told us that she had two perfect cochlea’s and two auditory nerves in place and that we could go ahead and plan for surgery.  Chris and I again couldn’t hold back the tears, this time of joy.

Isabel’s surgery is this Friday and we are both scared and excited for that day.  Scared because no one ever wants their baby to have to undergo surgery at 5 months of age, or any time for that matter(!), but excited because we know that once Isabel has her Cochlear implants we can begin working towards her future….a future that includes listening to music, speaking to her friends on the phone, playing sports and whatever else she wants to do.

Our girl

We don’t see any limitations for Isabel and we are so glad we underwent the newborn screening and caught this so early.  We are also so thankful for the Cochlear technology and the amazing staff at organizations like the Shepherd Centre that really are the link between the technology and ensuring it is used to its full potential.  I know there has been some debate about the value of technology and the impact it has on society. In Isabel’s instance the impact is life changing and our little girl now has the chance to be whomever or whatever she wants to be.