Friday, April 29, 2011

The Glaucoma Saga

So much has happened since my last update.  So, where did we leave off...yes...Nicole was booked for a goniotomy (a surgery to open up natural drains in the eye) to help relieve her glaucoma.  They took Nicole into the OR and realized her cornea was too hazy to complete the procedure even after trying to clear it with a corneal scrapping.  Memories I kindly would like to leave behind.
We had always had issues feeding Nicole...fussy, gassy, crampy, vomiting.  It was all chalked up to reflux which she was on medication for.  Numerous times we had brought up our issues to doctors who subsequently always reassured us that our baby girl was just fine.  Feeding problems were explained by reflux, colds, photo sensitivity you name it. After this OR however it became utterly unbearable.  Nicole would scream and scream and scream.  Again, we were told she was fine...look at her she's growing beautifully.  Except that in 2 months she had only gained 200 grams.  We were given higher doses of meds for reflux.  It had reached a point where my baby girl refused to be fed.  I had to wait till she was asleep to give her a bottle. Finally I had had enough and picked up a can of lactose free formula.  First bottle she was a different baby.  She downed bottles while wide awake and for the first time in 6 months actually fallen asleep on a bottle!!! Needless to say we were thrilled!!!  We stopped the reflux meds and low and behold...no issues!!  Looks like the reflux was caused by lactose issues....
OK, so why am I telling you all this? Well, Nicole was rebooked for surgery.  This time to insert a valve in her eye to control her glaucoma.  To make a long story short she showed up the day of surgery with a horrible cold and we were sent home.  At the time we were upset.  It takes a lot to get to the day of the surgery so needless to say we felt disappointed.  What we didn't know is that it was the best thing that could have happened.
She was rebooked for the same surgery a week later.  We showed up that day with a different baby.  We had been using lactose free formula for a week.  No longer pale and listless, she was happy and energetic....and...her eye had appeared to have cleared.  I mentioned it to the doctor when she came to see us in the OR waiting room.  She took a peak at Nicole's eye and said...hmmm...then went to get her instrument to measure her eye pressure.   It appeared to have fallen.  She said, let's take her in and see what pressure readings I get and I will come and talk to you before we go ahead with anything.  Fine.  Off we went to wait....and wait...and wait.  We didn't even go eat because we thought the doc would be out so quickly.  I mean, how long does it take to sedate a child and get some pressure readings?  Finally I'd had enough and took a peak at the info board.  It had been updated and said Nicole was in recovery...huh??? Then around the corner came Dr. T.  She took us into the little side room to chat and told us the pressure had improved so much they did not feel it necessary to do anything.  What?? Huh?? For real??
The only thing we could all figure happened was that with the change of formula Nicole was better absorbing her meds.  Unbelievable!! Needless to say we are super happy.  Frustrated but happy.  And the lesson here is go with your gut feeling.  We knew something wasn't right even though the doctors kept telling us there was nothing to worry about.  Push push push and be your child's advocate!!  Be that crazy parent...who cares....no one is looking out for your little one but you!!
We have had our follow up appointment and it appears that Nicole's eye pressure is under control for the time being.  Wonderful news!!  We are now back to patching (and as a side note her third contact lens prescription in 4 months $$$). 
Isn't this a testament to the fact that prayers are in fact answered!!?? Thank you to everyone who prayed for our little girl!!!  Someone was definitely listening!!


Super happy on my new formula!

Wednesday, April 27, 2011

Project 365 - Week 16

Apr 16 - This is definitely not Mommy

Apr 17 - Snow...in April!

Apr 18 - Trust me I don't need a nap

Apr 19 - A surprise for me!

Apr 20 - Hanging with Baba


Apr 21 - First time she fell asleep on my shoulder

Apr 22 - Yum yum, Good Friday fish!

Sunday, April 17, 2011

Project 365 - Week 15

What a crazy few weeks we have had.  Ups and downs like you wouldn't believe.  I will sit down and write about it but we seem to have finally found a groove and I'm just enjoying it for the moment.  In the meantime, here are some snapshots of our last week.

Apr 9 - Finally a nice day outside!


Apr 9 - Taking down the Christmas lights

Apr 10 - Too many colds in our house

Apr 11 - Yup, hotdogs wrapped in pastry.  Who said dinner had to be healthy?

Apr 12 - Having lunch at IKEA

Apr 13 - Yup, I finally see the resemblance

 
Apr 14 - Yeah, parktime again!



Apr 15 - Dolled out in hospital PJs waiting for the OR



Apr 15 - We thought we'd be nursing a post-op baby, but instead we enjoyed the Baby Show!






Monday, April 11, 2011

Project 365 - Week 14

Apr 2 - Popsicles with her fav cousins....Nicole just barely made it in the pic =)

Apr 3 - someone put her tooth through her lip...yuck

Apr 4 - Love rainy days and puddles

Apr 5 - Doesn't everyone wear a helmet to clean potatoes?

Apr 6 - Lilia is sick with a cold...and according to Baba butter is a great decongestant

Apr 7 - the cold that Nicole caught

Apr 6 - Early morning drive to SickKids for Nicole's surgery...followed quickly by a drive back...cancelled due to a cold

Sunday, April 3, 2011

Project 365 - Week 13

So, needless to say it has been an absolutely crazy week leaving us to wonder if the universe is really just playing an April fool's day joke on us.  Lots to write about.  For now...here are some pics.

Mar 26 - A year later all the squares are done...how long till I get them put together?

Mar 27 - Fancy new toothbrush...lights up and all

Mar 28 - Ugh

Mar 29 - Not a happy camper

Mar 30 - Lilia hangin with Mickey at SickKids

Mar 31 - Who was watching her?

Apr 1 - what I found in the Nutella...leftover blueberry jam care of yesterday's fiasco