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

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!

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

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!

Happy Monday

One girl asleep, another one winding down with Daddy and a chance to sit down.  The place is still a disaster after a very busy weekend but I'm too drained to care.  We held Nicole's Baptism on Sunday and with that came lots of cooking and organizing and running around.  On top of that we had Nicole's exam under anaesthesia (EUA) to worry about. 
The EUA was on Thursday and little Nicole did very well.  I am lucky that she doesn't usually wake up hungry so she doesn't complain when I don't feed her for these procedures.  She had her last bottle at 3am and then sugar water with her meds at 5:30am.  The EUA was at 930am.   The procedure is to sign in 2 hours before then head up to get her changed into a hospital gown, weighed, checked, and give her eye drops.  The eye drops are the worst part of the whole thing.  She screamed and screamed and screamed....along with the little girl in the next room.  The first drops are numbing drops which are suppose to take the sting out of the next 2 dilating drops.  Don't think it works all that well.  And the drops go into both eyes because while they are there they make sure her left eye is all good.  (And it is.)
After all that fuss we are walked to the OR waiting room.  There our ophthalmologist came to speak to us and have us sign consent to take her in.  Then came the anaesthetist who had with him a medical student.  The poor girl was so green you could spot her a mile away.  The anaesthetist explained what he would be doing.  He would put a mask on Nicole, put an IV in and then put in a breathing tube for the procedure. After I made sure he would be the one putting a breathing tube into my child and not the med student they were off.  (Sorry, no practising on my little one.)  Then the OR nurse came in and it was time for Nicole to go.  Thankfully she was asleep.  Still sucked. 
The exam took over an hour.  Felt like a zillion more.  The doc finally came out and told us they took lots of measurements and photos.  The pressure in her PHPV eye was down to 19 but still not enough so they added a 4th eye drop to our entourage.  The long and short of it is that this will likely not correct itself so we need to decide whether we would like Nicole to have more surgery.  What a horrible decision to have to make.  It's definitely like being stuck between a rock and a hard spot.  She stays on meds they may not be healthy for her.  She has surgery she may have numerous complications resulting in more procedures and even possibly eye loss.  We are trying to become more informed on all the options so when we go back to the Clinic in 2 weeks we can have an educated conversation and be confident with our decision.
We have also been upped on patch time.  It's now gone from 2 hours to 4.  We have only been able to get up to about 3.5 hours before Nicole just loses it.  I still think that's pretty good.  We also have a new contact thanks to the change in eye shape from the glaucoma.  
And I think that's about it for now.  Just trying to get through it all....one day at a time....

We're Home!

Just a quick note to let everyone know Nicole did great during her examination under anaesthesia (EUA) today.  She was sleepy earlier today but was back to her smiling, laughing self tonight.  We are up to 4 different types of eyedrops on top of the 4 times daily oral med so we are feeling a little tired.  I will definitely fill in all the details as soon as I can sit down properly. 

Thanks everyone for all your support...it means so very much to us!

Project 365 - Week 7

Feb 12 - Lilia's addition to Mike's lunch

Feb 13 - Zoom zoom zoom we're going to the moon!

Feb 14 - Aren't we 3 lucky girls?

Feb 15 - A note to Nicole...isn't she lucky?

Feb 15 - Be polite and send a note back!



Feb 16 - Who needs a chair?

 

Feb 17 - Taking out a contact during Nicole's ER visit

Feb 18 - Just looking through her PJ drawer 

Too Much Excitement

So quick post to update on our latest fiasco.  So Nicole started her oral meds on Tuesday for glaucoma.  It coincided with the worsening of a wicked cold she got from her sister.  Two days later she refused to eat....like at all.  I think she had a total of one bottle all day.  She had a horrible cough, terrible runny nose and her breathing was really really quick.  Enough to send her RT mom and paramedic dad over the top =)
Anyhow, it was 4:00pm yesterday and I thought I would call the Eye Clinic to see if anyone was still around to tell me if there was any issue with continuing the oral meds when she hasn't been eating.  The response I got was, stop the meds and take her straight to the ER here.  I was likely lovely.  They were afraid that Nicole had gotten dehydrated.  (The oral med is actually a diuretic)  So downtown we went in rush hour.  To make a long story short we were in and out in 3 hours with the answer of...no she is not dehydrated and she is not eating cause she has a virus, nothing to do with the oral meds.  So now I feel like THAT mom.  They sent us home and told us to get the Hydra sense nasal aspirator (yum) and clean her out before feeds.  And I could restart her oral meds.  By the way, the aspirator, albeit very gross, works AMAZING!  Nicole is back to almost normal feeding!
So that was our ER story.  The funniest part is that the Resident who saw us was actually in Ophthalmology.  All he wanted to do was look in her eye.  (Nicole was kind enough to let him).  He thought it was the coolest thing.  You know he went home and called all his Ophthalmology buddies and told them all about what he got to see.  I'm sure he's only read about this in a textbook.  LOL.  We thought it was hilarious that Nicole was there to be assessed for eating issues and he just kept looking in her eye.  Then he was like, see you next year at the Clinic!!  Too funny. 
So that was our excitement yesterday.  Thankfully, all is back to normal.  Well normal for us anyways. =)

Nicole's Followup

So last night I had to stop feeding Nicole at 2:30am for the potential sedation this morning.  I couldn't figure out the best way to max out what she could eat.  I decided to "dream feed" her at 11:00pm and then wake up at 2:30am to give her another bottle.  It kinda backfired...she wasn't all that hungry at 2:30am and didn't really eat much.  Then when we got her up early this morning to go downtown she was really crabby.  While I was putting in her eye drops I could hear her stomach growl.  Poor soul.  I knew it would be a long day but refused to eat until my baby could.  We left home early, never know what kind of traffic to anticipate.  Needless to say we got to the hospital really early and had to kill more than an hour.  Nicole refused to sleep.  Can you blame her?  She was starving! And then just as we started to head to the clinic to register she passed out.  Woohoo.  And guess what???  She STAYED ASLEEP!! She stayed asleep for Dr. T. to examine her so we avoided the dreaded sedation!! How awesome is that!?
OK, so here's the scoop.  The drops have worked a little.  Her cornea is slightly less cloudy but the numbers are still quite high.  The way Dr. T. explained it to us was that each machine reads the pressure differently, and it will read differently depending on what the child is doing at the time.  She says the best way to look at it is to compare the value difference with the good eye.  Last week the intraocular pressure (IOP) was reading anywhere from 27-50 in Nicole's PHPV eye.  Her good eye was 8.  Today the good eye was 16 and her other eye was 34.  So we received a prescription for oral medication (Diamox...can you believe it??).  She hates it.  She has to take it four times a day and I basically have to continuously scoop it back into her mouth.  Fun.  We are booked for....big breath....our first examination under anaesthesia next week.  Sigh.  I knew it was coming.  This basically means she goes to the OR and gets put to sleep so the doc can have a good look in her eye.  Dr. T thinks it's the best way for Nicole right now.  I am not sure how I feel about it yet.  I know I'm scared.  I hate handing her off to a stranger.  But I know she's safe and in good hands there too.  I guess it's just a necessary evil.
I am finding the morning and evening rituals of drops, meds (don't forget the reflux meds too....will be glad when she outgrows that!) and contact lens insertion/removal exhausting.  Especially having a toddler running around too.  So now that the two girls are asleep I am going to ignore all the toys and crafts scattered everywhere, climb right over them to sit and watch some TV with my hubby and try for a moment to forget about all this.  At least until morning.

Fellow Moms

Tomorrow is the big day.  Nicole is getting sedated again for a checkup.  I wish they'd slip a little something to me too...would make it a heck of a lot easier =)
One thing that does make it easier is having some great support from fellow moms.  The internet is a wonderful thing.  I've joined a couple of yahoo groups for PHPV and Aphakic kids.  It's a place to go and just ask questions from other moms (and dads =)  ) who are going through the same thing or been there before.  Without these groups I'd never have made it through the past 4 months.  I've been lucky to have found some great moms to share the journey with. 
Thanks B. for sharing your stories, support, and pictures.  When we've come out strong at the other end like you have I will definitely pay it forward. 
J.U.H - Thanks for giving us some laughs about how to respond to the inevitable "why" questions from strangers.  Really, why else would someone be wearing glasses!!??
J.W.  - You are awesome.  Look forward to travelling this road with you.  Loved loved loved the picture.  Maybe I can talk you into letting me share it here =)
And to all the other moms and dads who've taken the time to answer my questions....it is all so very appreciated.
Now it's off to sleep....alarm set to fit a feed in before cut off time!
Wish us luck!

Project 365 - Week 6

Feb 5 - What? You don't want me to take your picture?

Feb 6 - Cereal time!  For some reason I can't turn this picture!

Feb 7 - Taking a walk with the snowblower

Feb 8 - My smiling beauty

Feb 9 - Decorating a cake

Feb 10 - Here we go again

Feb 11 - Happy Birthday A.!

Nicole's Checkup

Yesterday Nicole had a checkup at the Eye Clinic.  It started off with some eye testing that involved showing her some black and white striped squares.

She did great with both eyes open....not so good with her strong eye patched.  The girl testing told us not to worry, that it takes awhile to get good results and proper, accurate testing done since she was so young.
We were then called in by the Resident for an examination.  She asked me if we had any concerns and I told her not really, just curious about why Nicole's weaker eye was a lighter color (the same question I've asked previously but never really gotten an answer).  She responds with there's an obvious size difference in her eyes and that can manifest itself in the iris.  Huh?  What?  Size difference?  Apparently Nicole's PHPV eye looks larger than her other eye.  Now I feel like the horrible mother who didn't notice.  And apparently her cornea is quite cloudy.  Again, something I truthfully hadn't noticed.  Maybe for a moment I'd thought about it but always put it down to the contact lens.  She asked me if I had noticed any discharge or tearing....nope and nope.  I knew where this was going.  Was it glaucoma???  Then began the incessant attempts at getting a good pressure reading in her eye.  The fussier Nicole is the less accurate the readings.  The Resident finally gave up and went to get Dr. T.  In the meantime I gave Nicole a bottle.  She was so wiped that she passed out by the time Dr. T. showed up.  This gave her a good opportunity to exam Nicole.  They told us they like to see pressures in children this age below 10.  Pressure in the strong eye was 8.  Pressure in the PHPV eye was 27.  My heart sank.  I fought back the tears.  And then they said it....examination under sedation.  Oh God.  Here we go again.  Starving my baby so that I can force feed her some horrible medicine that burns going down to put her out so that people can stick their fingers in her eye without her complaining.  And my tears started flowing. 
I kept telling myself it could be worse.  There were moms in that hospital crying tears for babies they'll never take home.  While waiting there were stat calls to ER Trauma for the Respiratory Therapist (being one I know that's not good) followed quickly by stat calls for the Neurosurgeon to the same place.  That mom was crying different tears than me.  I know.  I know I will take my girl home and she will grow to be a feisty, confident, beautiful woman.  But right now it sucks.  We are tired of telling ourselves it could be worse cause you know what?  It could be a hell of a lot better too.  OK big breath.  Things will be OK.
Back to the appointment....we were sent home with three eye drops (one that incidentally is sold for cosmetic purposes....for long eyelashes....lovely).  We are to give the eye drops and come prepared on Tuesday for an exam under sedation.  This means no food for Nicole after 2:30am.  Dr. T will try to examine my Pumpkin awake but if needed she will be sedated.  I am going with the mindset that she will be sedated.  Nicole is 4 months old.  She is going to be hungry.  She most definitely will not cooperate.  Another big breath for me.  If the pressure in her eye has come down we will start dropping eye drops.  If not she will be given oral medicine.  If that doesn't work it will be back to the operating room for more surgery. 
We are all very tired and very frustrated.  We are trying to stay positive but for now it's difficult.  On the bright side, Nicole is being such a trooper....always a smile on her gorgeous face! 

Now it's time for some much needed rest.  Will update soon!

Tired

Today has been a hard day.  We had Nicole's eye checkup and things didn't go so well.  Lilia is sick and throwing up.  We all just need to go get some rest.  I will fill in the details later.
Goodnight Everyone....