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!

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!

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!







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

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

Getting Better

We had a visit with our doc yesterday and nothing much came of it.  Nicole was not very cooperative (surprise surpise) so Dr. T. couldn't even get close enough to see if the bandage contact was in place.  We took her out and walked her for a LONG time to get her to fall asleep and went back to the clinic as per the doc.  Of course by the time Dr. T. came to see her she was awake again...ugh.  Long day for nothing. 
On the bright side, Nicole hasn't required any painkillers today.  We never did get a script for Gravol.  The family doctor said no for under one year olds.  He asked me what Nicole had done...corneal scraping I said...ohhhh that's painful.  Yup.  Nevertheless, she is doing much better today.  Unfortunately, it seems her reflux is acting up and it's hard to tell if it's a sore throat from her breathing tube, all the screaming, or heartburn.  I hope this clears in a couple of days.  Mike and I both have callouses on our hands from swinging her in that carseat.  It was the only thing that kept her quiet.  Tomorrow morning we are going back to see Dr. T. and have the bandage contact removed.  What the heck is a bandage contact anyways??  Apparently a large lens to cover the cornea.  This should be fun. 

Here's a pic of my poor pumpkin today...oh and Lilia enjoying Skittles...which of course she had to be reminded of not to share with Nicole =)

Disappointment

So, as most of you know and for those of you who don't, our little Nicole was booked for her goniotomy surgery yesterday.  That's where they go in and try to open up blocked areas of the eye to help relieve some of the "backup" of fluid that causes glaucoma. 
So....we were booked for noon.   For any of you with babies you can only imagine having to withhold food for 6 hours.  Usually we've been booked for first thing in the morning which doesn't seem as painful.  Nevertheless, Nicole was a trooper.  Of course the OR was behind which didn't help matters.  We endured the whole horrible experience of putting our baby in hospital PJ's (although we've been through this enough that I brought booties from home for her this time), questionnaires, signing consents, handing her off to the OR nurse, and finally the dreaded wait in the surgical waiting room.  We were lucky enough to have a visit from a wonderful friend...thanks Nicole!  Then an hour and a half later out came Dr.T.  Nicole did great with the anaesthesia and was waking up.....but....it was a no go for the surgery.  Bubble burst.  We were expecting complications but not a total no go.  That never even crossed our minds.  Apparently, her cornea was too hazy for Dr. T. to have a safe view of what she needed to do.  They tried to scrape the cornea to clear it but it was unsuccessful.  We now need to go the route of putting tubes in her eye.  She explained the whole procedure, including the fact that there will be donor cornea keeping the tubes in place.  I think that's when I stopped listening cause I was in total overload.  We now wait to have the procedure organized since Dr. T. needs to have a retinal surgeon present in case of....so in a couple of weeks....back we go.

Now, we have the pleasure of caring for a 5 month old infant in horrible pain.  I have never heard her shriek this way.  We were told it was a painful procedure and to give Tylenol.  Yeah, that didn't do a thing.  By 8pm we were calling the resident on call.  He said he was in the OR with Nicole and was half expecting this call.  Well, if you were half expecting it why didn't you prepare us better???  I was ready to take her to ER for some morphine but he said the cornea heals in 24 hrs so we weren't likely to get a script for anything. In the meantime Tylenol/Advil and Gravol and it should be better by 24 hrs.  Fine.  That's what we are doing.  She seems to have settled a bit but definitely does not want to eat.  I put in a call to our family doctor to get some dosing for the Gravol.  And that's where we're at.  Poor thing looks like she's been beat up....but the sweetheart still smiles behind it all. Crazy how kids are such troopers.
Going in on Wednesday to have the "bandage contact" removed and see what's going on.
Will keep you all posted.
Thanks for all the love and support.  It is all so very needed!

Project 365 - Week 12

Mar 19 - Watchya doing in there?

Mar 20 - She was being a little too quiet playing with her dollhouse

Mar 21 - The apple doesn't fall far from the tree

Mar 22 - How did Lilia talk Baba into climbing in?

Mar 23 - Keeping occupied while Mommy does patch time

Mar 24 - Lilia thought we meant dump the diaperbag and climb in when we said let's try the new backpack carrier

Mar 25 - Monkey see monkey do....Lilia had to have her shades too!

It's been awhile....

So, I have sat numerous times to update this blog with more than just Project 365 entries, but every time I just close the page and change my mind about what I want to say.  Right now I am in a feel sorry for myself kinda place and no one likes a buzz kill so I've decided not to write about it.  I'm feeling a lot of resentment towards this whole PHPV thing and I really don't want Nicole to ever come back and read this and think any of it was directed at her cause not one tiny ounce of it is.  It's just that we are all tired and feeling a lot unlucky.  Don't get me wrong.  Nicole has been doing great.  If I dare say it, patching is going OK.  I can usually get almost 4 hours in without much fussing.  It's just that the whole process is really tiring.  When Nicole is patched she demands one on one attention.  This is EXTREMELY difficult with a 2 year old running around.  Lilia is so amazing and so patient and I am so very lucky to have her.  If she'd had any ounce of "terrible twos" in her this whole thing would be unbearable.  For the most part I can double duty it and play with Lilia while holding Nicole.  Lilia is often right there with me shaking toys at Nicole.  Sometimes it truly makes me laugh.....and then there was last week.  Nicole had finished her patching and was getting a total kick out of Lilia running down the hall.  Like full on belly laughs.  Lilia loved it!  It was the first time I'd seen the two truly interact.  And then the next day Nicole was patched and poor Lilia had gotten it in her head that she was going to make her laugh again.  She ran down that hallway full force and Nicole, of course did not laugh.  The look of disappointment on my toddler's face was brutal.  "She's not laughing" says Lilia.  No sweetie she is not.  I wish I knew the patching would be useful.  But if she's not going to get any better vision than color and movement I don't want to do this anymore.  But still everyday I lay that little baby down on her change table giggling away and slap that stupid patch on her and watch her smile fade away.  I hate it.  I hate every moment of it.  But I do it for her.  I do it cause I love her and want the best for her, even though it is by far the most difficult thing I have ever ever done in my life.  Those moms reading this that are in the same boat get it....no one else can.
Now that's the honest truth.  Like I said, in a feel sorry for myself kinda place....there's a lot more "woe is me" kinda stuff I could write but I don't actually want to be able to come back and read it.  I am hoping that things will turn around soon, things will settle down and maybe one day I will forget all of this.
And now, on top of it all, I've realized I still have a needle waiting for me before bed.  Lovely.
I am tempted to delete this post too....but I think maybe it's OK to feel this way sometimes.  Makes the brighter days more special....
Here's to many sunny days soon!

Project 365 - Week 11

Hey...who can believe I'm still on track...woohoo!! 

Mar 12 - Not a good pic but had to remember this...Having fun with Dad

Mar 13 - Celebrating Baba's bday...Nicole was asleep on the floor

Mar 14 - It was 10:40pm and I had forgotten to take a picture....sizzling fire, oh no, sizzling chickens!!

Mar 15 - Hanging with our new buddies!

Mar 16 - I can't hear you!

Mar 16 - Let me see your foot...

Mar 17 - Fancy new plate

Mar 18 - Look who can roll over now!

Project 365 - Week 10

Mar 5 - Styling new boots...thanks G!

Mar 6 - yum yum homemade donuts!

Mar 7 - Proud Daddy

Mar 8 - Professor Lilia

Mar 9 - Professor Nicole

Mar 10 - Getting into trouble

Mar 11 - Jump Jump Jump