One Day at a Time.

As most of you will know, about two months ago Jake's case was discussed at Sick Kids and he was accepted for his Fontan surgery.  We have spent two months constantly checking the mailbox and our phones for a date for the Heart Cath that would start off this journey for Jake.  Then, it was communicated to us that Jake's Fontan is considered an elective procedure because he is "well" compared the huge critical caseload in from of the cardiac surgeons.  The average time for a elective cardiac procedure is now 10-12 months at Sick Kids.  BUT... We got even better news today --- because Jake was supposed to have this Fontan procedure months ago, he's not at the bottom of that list.  The delay in surgery was due to Jake's small size and he is finally *thisclose* to the weight goal of 33 lbs (about one pound away!).  So, we have been told that Jake's wait is more like six months - but we are already two months into that...so that becomes four months...We are anticipating surgery early in 2017.

This is a mixed bottle of emotions though.  On the one hand, I don't want Jake's heart stopped and his little body opened up anytime soon.  On the other hand, his decline has been significant over the summer.  You will notice the next time you are near him, a nearly constant blueness to his face/fingers/toes.  He breathes hard and fast from small bouts of physical activity.  And his oxygen saturations are keeping lower than normal.  My fear is that before this surgery is scheduled, Jake will be sick --- sick enough to affect the success rate of the Fontan.  I'm leaving this in the hands of the Great Physician though.  He has not failed Jake yet.

So there we are...while it's not a specific date, it's a narrowed time frame and I'm thankful for that.

And I got the biggest smile on my face when Jake's cardiac Surgeon, who has done all of Jake's open hearts to date, responded to my emailing him the latest picture of Jake with this line....

"Wow! He looks great!"

Such a simple sentence, but for me...coming from the head of cardiac surgery at Sick Kids Hospital....this is a huge affirmation that Jake is ok.  So, we are taking this as a blessing, because otherwise we will lose our minds worrying about the timing.  I'm vowing to trust.  One day at a time.

My Old Friend

I want to share with you our memories of the day our sweet almost 10 year old Rough Collie crossed the Rainbow Bridge.  There was never enough time, but this final day was all about Lukey.

I'm at a loss for how to begin this post.  Let's start with Lukey's Top 10, counting down Letterman style.  Some of these he couldn't enjoy for the last few years of his life, but I'm including them anyway!

10. Fetch, Lukey style - It's been at least five years since Lukey has played fetch BUT....this was his favourite game as a puppy.  My boy was stubborn and liked to do things his way so our version of the game was this: human throws the object, then puppy runs and grabs it.  Human says come here puppy...puppy runs away and a game of catch Lukey ensues....oh wonderful memories!

9.  Benefuls - Cue the head tilt with this word! Lukey loved Benefuls with a passion.  

8.  The park - again cue the head tilt! Any park, Lukey didn't care!

7.  Expressive sounds - Collies are known for their unique expressions and Lukey was no exception.  Barking, moaning, groaning, crying...he did it all.  He particularly hated it when people danced in his house!

6.  Visiting his Nanna, Poppa and London the beagle - all the love and all the food is how Lukey would likely describe his time with them, and his sleepovers with them.  Thank you for all the joy.  

5.  Other dogs - were most frequently the cause of his cries and moans, my dramatic big boy.  His cousins London and Gilbert will miss his calming presence I know.

4.  Walks - cue the head tilt once again! Any walk, any length, any speed, anywhere.  LOVE.  

3.  Cheese - Cue the biggest head tilt! All we had to do was touch the wrapper in the fridge and Lukey would appear.  Cheese was his big love, in every form possible - even as pill camouflage in his last days!

2.  Butt Rubs - Any visitor to our house would be quickly offered Lukey's hindquarters, and pushed against until they complied.  I am sure we spent many hours in total rubbing those huge butt cheeks :)

1.  Being close to his humans.  Especially me.  Lukey was my shadow, and a large shadow in a small house.  I wish I could trip over him again.  Here we are in his final hours.  We sat here all afternoon, right up until the vet pulled into our driveway.

On July 4th 2016 I lost my forever friend, but I like to think that his final day was a good one.  Here's how it went...

Lukey got a homestyle breakfast served to him by the kids.  Bacon, egg and toast and he ate the whole works with us sitting beside him.

Then we all got ready for the day ahead, and took our mopey selves outside to where Lukey loved to sit in our yard and watch all the comings and goings.  We were expecting some special visitors, and just wanted to focus completely on Lukey and sharing our love with him.  First, we did a small brushing, and then a sugar cookie cologne for good measure :)

Then the loving began.  There is something so pure about the love of a dog, I know it has been written about and sung about but there is genuinely nothing more loyal , steady hearted, or loving than a dog like Lukey.

Then lunch! A picnic!

And more loving...

Earlier in the day we asked Lukey if he wanted to go for a walk, but he was too uncomfortable to stand up.  As the day progressed, we asked again and this time he got up and we went less than halfway up our street before he was ready to turn around.  He got his final leg of the walk from Jake.  Oh, my heart.  I hope you are running through the fields of heaven now Lukey, leaping and free from pain.  I hope you are with Nugget and Loppy too.  

Then two of Lukey's favourite people came to visit.  And to hug and kiss.  The kids went with Nanna and Poppa while Jon and I hung out on the lawn and waiting for the compassionate care vet.  

Then the vet came.  And we said goodbye in the most peaceful way imaginable, in our backyard and cuddled with Lukey on the grass.  I hope you are happy my sweet boy.  There will never be another like you.

Today I said goodbye to my old friend
I pray some day we get to meet again
Under one more clear, blue sky
Up there where the eagles fly

And we'll go walking in the sunshine
With a big smile on our face
Race the river to the ocean
Go splashing in the waves
And I'll wrap my arms around you
We'll be together once again
And I'll tell you how much I've missed you
My old friend

Yeah, I know you're up there looking down
On that rainbow bridge we talked about
There's a place for me and you
Somewhere up there behind the moon

- Johnny Reid                              

To Toronto we will go!

About two weeks ago Jake was given the go ahead to have a referral made to Sick Kids for his Fontan open heart surgery.  This meant two things had happened --- he had almost reached his goal weight of 15kg (weighed in at 14 kg on that day!), and he was showing symptoms of decline in his energy levels, oxygen levels, increased blueness, sleeping more, and so on.  So, it's time...time to wait for a heart cath date, after which we'll get the surgery date.  Cue the stress...

But, thanks to some pretty amazing people....we are not cueing the financial stress.  There is no better gift to give the parent of child with a chronic illness than peace of mind and the ability to focus entirely on the needs of their child without being stressed about how they are paying for the flights, the place to stay, any supplies needed for the child's care, and so on... On that note.... I have a few THANK YOU'S to say...

Members of our church organized a Family Movie Night Fundraiser for Jake.  They showed the movie The Incredibles in honour of our Superbaby.  Dominion Stavanger Drive donated the food/drinks/candy thanks to John.  Michelle and Elizabeth pulled this amazing night together so fast --- it was a lovely wednesday night out for those who came, and a night of amazement for myself and Jon as we watched a church full of people pour out their love for Jake and support for us.  There are so many people to thank, from the silent auction donors, to those who baked goodies, those who volunteered their time to help out, and so on.  A shout out to the CBS Corps who raised $1000 for Jake.  Incredible.  So much love.  Some day we hope to be able to give back in the way we have been blessed.  Here are some highlights from the night!

 Check out the crowd for the movie!

Jake approved of the movie selection!

Half the Heart, Twice the Fight!

Georgia and some friends :)  

 Popcorn and Candy anyone???

The Silent Auction is going on....

These two ladies have the kindest hearts - thank you Elizabeth and Michelle!!!

My unborn niece was there too! Love you little Sis!

Our three hooligans - all on Team Jake!

Team Jake! We love you bud.

I'll do another post next week with some of the goings on in our lives, including the loss of our sweetest dog Lukey as well as a description of the upcoming surgery and why Jake needs it!

Ending today with the most thankful heart.  So filled.  Thank you all.

I won't cry, Momma.

We had to change Jake's G Tube today because the current one had gotten brittle and couldn't be closed anymore.  It's never an easy thing to do, but today was hard.  It was completely different from any of the other times that we have put in a feeding tube, whether NG in his nose or G in his belly.  Why was that? Jake's awareness of what was happening.  Jake completely broke my heart, and Jon's, in the lead up to putting it in.  As we did the prep work Jake noticed what was happening and said "No, don't do it", and shortly after followed with "it's going to hurt" and genuine fear on his face.  I told him that we loved him so very much and would do it as quickly as we could, and explained why we had to do it so he could understand a little more.  Then...he looked me in the eye and said "I won't cry, Momma." He was trying to make me feel better, and to protect me from the unpleasantness --- what an incredible thought process for his three year old mind.

When Jake had his NG tube, which needed to be replaced frequently because he used to pull it out, or vomit it out, I always placed the tube while Jon held his arms and legs because he would fight it.  I realized today as I watched my husband trying to insert the G tube into Jake's little belly, that I have never placed the G tube.  I am completely comfortable with the tube, but have never tried to put it in myself because I can't bear to be the cause of his pain.  Today was a rough insertion as Jake was flailing around a lot and sometimes its hard to get the tube into that tiny little hole.  My husband is an amazing father - he got that tube in despite it all - I looked at his hands shaking after it was finished, and knew that there are no words to describe that kind of love - to keep going even when it hurts.  I am a lucky woman, and thanking God for Jon today. Jake did cry, and so much that he went to sleep almost immediately after the ordeal, but the thought that he had to say that to me today as if he knew what I needed to hear --- I can't wrap my mind around it.  My Super Baby.  Today has dredged up all my fears about the upcoming Fontan --- Jake can so clearly tell us how he feels now, and what he needs or doesn't like.  It's going to be very hard to watch and listen to.  And I won't lie, I'm scared.  Taking a deep breath now, trying to unwind and let it go for now.  One foot in front of the other, one day at a time.

In lighter news...Jake wants a tractor :)

Happy 3rd Birthday Jake!

This morning I woke up, turned over and saw a beautiful sight - my now three year old miracle baby and his father sleeping next to me.  As tired as I was, knowing I could have another hour of sleep before getting up for the day, I decided instead to stare...and wonder...and pray over my son.

Jacob is now three years old.  The baby that I feared would never live to see birth, yet alone one birthday. He is my miracle.  When I was pregnant with him I would spend time praying for him to be have a miracle and be healed.  Shortly after Jake's birth, I knew what I know today --- Jake already had his miracle, he was alive and well.  Most of you reading will already know Jake's birth story, and about his first two months of life at Sick Kids hospital in Toronto.  It's a hard memory to relive so I'll keep it to a minimum today.  Still, it's part of Jake's story so we'll talk about it today.

Happy Birthday Jake.  8 lbs 5 oz, you came into this world by C- Section to a room full of pediatric specialists who were prepared for any scenario...

You've come a long way baby.........

My 3 year old Super Baby...let me tell you about him...

1.  What does Mommy always say to you? "ummmmmmm...."

2.  What makes you happy? "Uhhhhhhhhhhhhhhhhh....."

3.  What makes you sad?

4.  How old are you? "Three"

5.  How old is Mommy? "One"

6.  How old is Daddy? "Three"

7.  What is your favourite thing to do? "Play Batman!"

8.  Who is your best friend? "Sissey.  Dadda, I'm your friend"

9.  What do you want to be when you grow up? Drops a toy on the floor..."get that Dadda!"

10.  What is your favourite animal? "dinosaur"

11. What is your favourite TV show? "pwah padrol" (ie: Paw Patrol)

And then he got bored and walked off :)


It's been a long time since my last blog post, but there is something lovely about life being so calm that you actually feel there is nothing to report.  It's nice.  The number one question people are asking these days is when is Jake's next open heart surgery? And that's a toughie.  We don't have an answer for that question, and let me tell you why.  Jake is on the small side for his age, and the long term risks from the Fontan surgery are much greater when the child is too small. So, essentially he's 1.3 kg away from the goal of 15 kg, or 2.8 pounds away from the goal weight of 33 pounds.  Looking back over his charts, it shows that it took him 9 months to gain his last 1.4 kgs of weight, BUT, he was vomiting much more then so we are hoping it won't take nearly that long this time.

The downside is that while we wait, Jake is gradually slowing down as he outgrows his current Glenn circulation.  I've been assured that this is perfectly normal in kids with any form of single ventricle defect but it's still incredibly hard to watch.  Jake has periods of being very blue, and gets tired and needs to rest much more often than other kids his age.  For this reason, he often spends a significant part of his time at his activities lying on the floor and resting.  It's hard on my heart to watch, but rushing the surgery is not a safe option either.  So, why is Jake getting blue and tired so often? Let me try to explain it to you...The Glenn circulation that Jake currently has means that he gets more richly oxygenated blood to his head and upper body, but his lower half and legs are still recieving the blue (no oxygen) blood.  So, as he gets more active and more blood needs to go in the legs it then comes back up to his heart through the vein that is not connected yet and that causes the blueness and the tiredness.  So that's where we are.  We are waiting, feeding as much as we can and praying for him to remain stable while he gets this much needed weight on.  It's a frustrating place to be, but Jake is happy and oblivious to all that is going on in his little body so that is all that really matters right now.

For his third birthday Jake recieved a fire truck toddler bed :) Here he is having his first nap in it today!

And putting his three pennies into the collection box at Sunday School with Sister's help!

And tonight, blowing out the candles on the cake that he decorated with Georgia....

Life is good.  God is good.  As I look out over the next year for Jake and all the unknowns it makes all of the difference to know that it's in God's hands, not twisting in the wind.  Psalm 147:3 "The Lord heals the broken in heart and binds up their wounds."