Thursday, March 31, 2011

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 =)

Tuesday, March 29, 2011

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!

Friday, March 25, 2011

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!

Wednesday, March 23, 2011

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!

Saturday, March 19, 2011

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!


Saturday, March 12, 2011

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

Thursday, March 10, 2011

Decision Made

Today Nicole had yet another visit to the Eye Clinic.  We had a good chat with the doctor, I think we were in the room for an hour and a half total.  Nicole, with much distractions, allowed Dr. T. to measure the pressure in her eye.  Still high at 27-30 despite all the drops and medications.  This means the glaucoma is still uncontrolled and that surgery is inevitable.  Our goal now is not great vision (although we are still hopeful) but rather to give her a comfortable eye that does not look unsightly.  Unfortunately, baby eyes are very pliable so high pressures stretch the eye.  The high pressures can also eventually damage the optic nerve giving us no chance at vision at all.  Dr. T. says we should be happy if Nicole can see color and movement.  We are trying to give her a spare here in case something happens to her good eye...not get 20/20, but of course we are trying for the best.  The plan now is for Dr.T. to talk to the retinal surgeon who did our initial operation and see if he is confident that the retina will not detach.  If he gives it the OK Dr. T. will try to open up the area of the eye where fluid drains, and which is currently blocked.  Wish I never had to know so much about the eye.  Of course there are many complications, but right now the benefits outweigh the risks so we are going ahead with surgery.  The other rough part is that post op we will have many exams under anaesthesia to see how the pressure is stabilizing.  I cannot wait for Nicole to be big enough to sit still for pressure measurements, but for now she is 5 months old and having none of it.  Can't bribe her with a lollipop just yet. =)
Unfortunately, my little one would not give me a chance to get her contact lens in (surprise surprise) so Dr. T. could not assess her vision.  Given how crabby she is patched I don't suspect it is very good, but we are pushing through with the patching.  Because Nicole is giving me such a hard time with the lens I have to wait for her morning nap to get it in.  This results in half the day gone before we can patch....so....this brings us to her first pair of glasses!! Yes, we ordered a pair of glasses for her today.  Hopefully we will be able to patch her for an hour before nap time and then I can slip that lens in.  The glasses magnify everything so they are not optimal but right now they are better than nothing.  I'll let you know how it goes once we get them!

Monday, March 7, 2011

Project 365 - Week 9

Feb 26 - Oops
Feb 26 - Best shirt ever
Feb 27 - Nicole's Baptism day
Feb 28 - Bedtime
Mar 1 - Yum, leftover cake
Mar 2 - Anyone feel like folding?
Mar 3 - Allo!
Mar 4 - Nicole's new buddy

Wednesday, March 2, 2011

Project 365 - Week 8

A little late but still on track!


Feb19 - What do you mean it's not for a toddler?

Feb 20 - For all those who don't believe I exist!

Feb 21 - Look I'm around again

Feb22 - Love my Jetta

Feb 23 - Is someone having a party?
Feb 24 - Hanging on in Recovery

Feb 25 - First time in the big bath!