Thursday, December 30, 2010

Lens Time

What a day! Our new normal has finally begun...Nicole is officially wearing a contact! After our last appointment we were told we would be booked for an appointment to fit her for a contact lens in the New Year.  Two days later we received a phone call that she was slotted in for an appointment for today.  So today we spent the day at the Eye Clinic learning how to put a contact lens into a 3 month old.  I could think of a million things I would have rather been doing than pinning my screaming infant down so she could get sized up for a lens, but that is the hand we have been dealt so we have no choice but to play the game.  I just keep reminding myself that we are doing this for Nicole, because we love her and want the best for her.  If that means tough love I guess that is what we will have to do. 
I wasn't really sure what was in store for us today...I mean, how does one go about "fitting" a 3 month old for a contact lens? Essentially, it is really just trying one on.  Dr. M. placed a contact in Nicole's eye (very smoothly I must add) and then examined it for fit.  Something or other about a bubble under the lens.  It was too small.  And so the fun began.  Nicole was not so impressed when it came time to take it out.  Sigh.  She wailed and wailed and wailed.  At one point we had to take her out for a walk to settle her.  But I must say, everyone there is so patient and calm, they were wonderful.  The second lens was the right fit.  Then it was our Mike's turn to try and get it out.  Good times had by all.  But after a few attempts he got it...woohoo.  I have to say I kept my eyes shut for most of it.  I wonder how well that will work when it comes my turn to do it on my own.  Haha.  I'll cross that bridge when I get to it (like tomorrow morning). The optical store had her lens in stock so Mike got a turn at trying to get the lens in.  Dr. M. had one last look at the fit of the lens and with his OK we were off.  Now we get a week or two to practise and get the hang of putting the lens in and out everyday and then the patching will begin. 

Dr. M. choosing a contact lens size for Nicole. 

I was feeling just a little horribly nervous.

Hope it goes this smoothly when we try it at home!

Tuesday, December 28, 2010


Enjoying some time with my two girls today....and do moms with more than two kids do it!??

Sunday, December 26, 2010

What a Wonderful Life

Hoping everyone is enjoying their holidays as much as we are.  Christmas was wonderful and now we are looking forward to the New Year.  Mike and I decided to go in on a present together and splurged on a new camera.  Here are a few of our favourite first shots with it...

Big sisters are great.  Notice the lineup of eyedrops on the dresser that we no longer need.

Our favourite Christmas card...a do-it-yourself Santa moustache!

Nicole's big cousins take great care of her.

My two girls.

Investigating the Christmas ornaments.
Catching a ride.

Tired out from all the excitement!

Tuesday, December 21, 2010

A Really Long Day

Waiting room at the SickKids Eye Clinic
 Today we went downtown for Nicole's appointment with the Retinal Specialist at SickKids Hospital...again.  Our appointment was for 1:30pm and of course, as life is with little ones, we left late so we rushed rushed rushed.  Mike dropped me off at the door and went to park while I went to wait in line to register.  We've been there enough to realize the registration line is ridiculously long after lunch.  I finally sat down to wait at 1:20pm.  We've been warned many times to expect long waits there.  At 2:00pm we still hadn't seen Dr. Kertes at the clinic.  We got called in to put drops in Nicole's eyes.  Routine is that someone calls you in to place dilating drops and then you are sent back to the waiting room for them to take effect, approximately a half hour.  And there we waited, and waited, and waited....and waited...for 3 long hours.  Good thing we rushed to get there in time.  Finally at 4:30pm we got in to see the doctor for Nicole's examination.  Thankfully she complied and was spared the dreaded speculum.

Nicole being examined by Dr. Wan was all GREAT news!!!  Her retina is attached and there are no folds!! Yeah no trip to the OR!  And no more drops for now!  Now we just wait for an appointment to have her fitted for a contact lens which should happen some time early in the New Year.  We are very excited to get going on getting her vision back.  It was a very long day but thankfully all positive....a great gift for us for Christmas!

Hanging with the Nutcracker Soldier at SickKids

SickKids was daytime when we got here =)

Thursday, December 16, 2010

One reason to love winter in Canada...

Days are short, it's freezing cold and driving is usually crazy, but there are so many joys to winter in Canada too!  Like skating for the first time with a toddler.   Watching the joy and excitement on their face is priceless.  Today we decided to get all bundled up and head out to the local rink for Lilia's first skate.  She was so excited to get a pair of skates and kept yelling "Ice, ice".  We couldn't figure out how she knew that you went skating on ice....of course when we asked her how she knew that she matter of factly told us Caillou went skating on ice.  I should have known!  We tried out both the bobskates and the "real" skates as Lilia likes to call them.  We weren't really sure how to start to teach a toddler to skate but I think she did pretty darn good.  She had a harder time with real skates on but I think she is determined enough to figure it out by the end of the season.   Stay tuned to find out!

Getting laced up for the first time!

Check out the smile!

Trying out the bobskates.

High Five!

Yum yum...having a post-skate snack at LaRose Bakery

Tuesday, December 14, 2010


We braved the snow and crowds to get some shopping done.  Pretty successful day.  Unfortunately we tried to find new skates at Canadian Tire but they were all sold out! Lilia got a pair of bobskates for her first try at skating and when we find a pair of skates small enough we'll get her those! Here are a couple of pictures from the day.

When we got home we made a yummy meatloaf care of Crazy Plates.  Of course we had a ton of help from Lilia!!

Saturday, December 11, 2010

Follow-ups at the Eye Clinic

Daddy and Nicole waiting at the Eye Clinic.
So far poor Nicole has had 3 followup appointments at the Eye Clinic.  She is not very cooperative, big surprise from a 2 month old, so one of those appointments was under sedation.  Sigh.  A total of 4 doctors have assessed her and the good news is that the retina appears attached.  Woohoo!  The not so good news is that, depending on which doctor looks at her, she may or may not have a retinal fold which may or may not be in her central vision.  Her surgeon believes the others are seeing artifact and that either way she will not need to go back to the OR.  Fingers crossed that he's got it right.  Her eye pressure is borderline high which hopefully clears as the gas bubble disappears.  Right now it seems to be a waiting game.  Going back for yet another check in a couple of weeks!  Hopefully it will be good news!

Friday, December 10, 2010

Who needs a nap?

Grocery shopping takes it out of all us!!

Thursday, December 9, 2010

Part 2 - PHPV....huh?

Persistent Hyperplastic Primary Vitreous.  That's what the opthalmalogist said caused the cataract.  And then the thousands of questions started piling into my head. What in the world is PHPV? What causes it? Why my little girl?  A great website that explains it can be found here.   In a nutshell PHPV occurs when the eye does not develop properly.  The eye is filled with jelly that becomes clear during development.  In a PHPV eye this jelly, for some unknown reason, remains hazy.  I bombarded each doctor I met with the question of what caused this? What did I do or not do while I was pregnant that made this happen.  Each doctor answered me the same was nothing I was just plain old bad just occurs by chance (1-3 in 10000 to be precise)...a glitch in development.  Unfortunately there are other complications from PHPV (also known as Persistent Fetal Vasculature).  The eye can be smaller.  A cataract can form.  Nicole has both.  We were told that she needed to have surgery to remove the hazy jelly and cataract in hopes of improving her vision.  So then, when my poor little Pumpkin was a mere 4 weeks old, she headed to the operating room. 
That was a hard day.  No new mother wants to hand over their newborn.  So there we sat in the OR waiting room, at some ungodly early hour, waiting for that moment.  The OR nurse was so sweet.  I'll never forget her face.  She bundled Nicole up in her little purple blanket that had been her sister's (Thanks Tatie Johanne!) and walked through those double doors with her.  And we were left to wait.

Just before going in to the OR.  Her surgeon marked the eye to be worked on.
  It took 2.5 hours.  At 1130am the surgeon walked into the waiting room with his entourage of doctors and took us into a back room.  He told us everything went well.  The cataract was removed.  Unfortunately, she suffered a retinal detachment.  He told us he could not find the detachment but treated the area he thought it was in.  As a result he could not guarantee that it was fixed and we would have to follow up in the coming weeks.  In the meantime we were to position Nicole with her left side down to keep the gas bubble in place.  (A gas bubble is used to stent the retina into position.)  We spent the night in hospital for observation.  The next day we were given the ok to go home and so began the relentless eyedrops....3 kinds in some combination every 2 hours.

Post op lensectomy/vitrectomy

Leftover "makeup" from Dr. H's examination the next day.

Thursday, December 2, 2010

Part 1 - The White Spot

Almost two months ago my most precious Nicole entered our lives.  She was perfect.  10 fingers, 10 toes, a head full of hair.  Big sister Lilia thought she was fantastic, helping with baths and diaper changes.  We were all very tired but seemed to have it all under control.  Everything was going great.
Then one night when she was 2 weeks old her Daddy was admiring her beautiful eyes.  And then he saw it.  The white spot.  I heard him call from the other room to come and see something.  I know my hubby.  He never makes a big deal out of anything unless he is truly worried.  And there it was.  The white spot.  The white spot in her eye that would change everything.  I don't know much about the eye but I knew this was not good.  Look closely.  You can see it in her right eye.

Of course it was evening so we had to wait till the morning to do anything about it.  I didn't put her down all night.  I cried almost all night.  When we signed up to store her stem cells I learned all about "the white spot".  The pamphlets were full of children with eye cancer who used their stem cells to fight it.  They all presented this way.  Thousands of thoughts raced through my mind all night.  I couldn't believe it.  We planned to go see our family doctor, but in the morning we decided to go straight downtown to SickKids Hospital.  Thankfully we were early enough that we didn't have to wait at all.  We were shuffled into a dark room where we sat and waited.  In walked a doctor.  Being a healthcare professional I knew to quickly scan her namebadge.  She was a first year resident.  Great.  She examined Nicole and said she saw no red reflex.  More bad news.  Then she sat next to me and asked me if I had ever heard of Retinoblastoma.  I couldn't believe it.  I felt like I had just been punched in the stomach.  Of course I had.  It was the dreaded word.  And she said it.  She said we would be referred to the Eye Clinic that day.  And then she left and my world crashed down around me.  A few minutes later a Staff doctor came in with an entourage of students.  Again, not good.  Usually  means you have something they don't see often and want to have a teaching opportunity.  He however did not use the R word.  He skirted the issue and said it was up to the Opthalmalogists to see what was going on.
Soon after we were walked over to the Eye Clinic.  When we got there the place was overflowing with people but we didn't wait long.  By early afternoon we had seen 2 doctors and had ultrasounds of Nicole's eyes.  When the U/S was completed the resident examined her eyes once more and said she would go get the Staff doctor.  I asked her if that was all she was going to say.  She said yes and that Dr. T would be right in.  I shot a glance to my husband.  Not good.  Dr. T walked in and again examined her eyes.  My heart was racing and then she said the magic C word.  Cataracts.  Nicole had a cataract. Mike and I shot a look to one another that spoke volumes.  Thank God.  Yes it sucked, and it would be a long road (heck I didn't know infants ever had cataracts).  But it wasn't life threatening.  Everything I had dreamed of for my 2 girls would still happen.  We were told that we were going to see a retinal specialist the next day and my little Nicole would be slotted in for surgery to remove the cataract.  Once the cataract was removed and her eye had healed we would begin the long road of placing a contact in her eye daily and patching her "good eye" to force the other to learn to see.  As it was explained to us, the brain will favor the eye that has better vision and the other eye will never have vision.  Dr. T told us we'd been spending a lot of time at the Eye Clinic.  Boy was she right.