Tuesday, January 10, 2017

Happy 8th Birthday Georgia!!!

8 years ago today at 1:15 am a beautiful princess came into our lives. Georgia Ada Grace, you are a shining light in our lives. Jake misses you so much. At supper today he stood up and said..."where did my sister go?". She's coming, Jake...Just 3 more days. When we talked to Georgia on the phone tonight she said when she see's Jake she's going to pick him up in her arms and spin him around. LOVE. Miss you, my baby girl. See you very soon.

Pre-Cath Day was today. It involved a ECG scan, x-rays and bloodwork for Jake, followed by an indepth conversation with the nurse and the doctor about the cath itself, the risks involved and the recovery period. In a nutshell, Jake is having a pre-Fontan diagnostic cardiac cath and will possibly be having his narrowed left pulmonary artery dilated or stented as well as any collateral arteries coiled.

Here is Jake at the ECG Scan, he wanted his own copy to take with him when it was done :)

What does all that mean??? It means that this cath procedure will see Jake intubated with access through both his groin and his neck (The neck is necessary this time because the resistance of the lungs can't be measured by going through the groin). In the Fontan procedure, the route of blood to the lungs is changed so that it's no longer being pumped in but is a drip flowing through with no pressure behind it. Because of that, Jake's pulmonary arteries need to be clear and wide otherwise the Fontan would not be a good match for his physiology. It also means that the cath will be performed, then the head doctor will come to see us and make a report and if possible head back in to enlarge his left pulmonary artery and possibly his right as well. The heart is an amazing vessel, and in a case like Jake's where so many interventions have happened and the blood flow is not taking a normal route, the heart will grow it's own collateral routes to where it believes the blood should be flowing - these over time reduce the effectiveness of the repairs being done by the Norwood, Glenn and now Fontan, so these need to be coiled perodically in the cath lab.

One point of concern is that despite his eating being above normal, Jake has lost two pounds since early December. He is now down to 29.5 lbs, while the optimal weight for the Fontan is 33 lbs.

Here he is on the scale!

Tomorrow Jake heads into the Cath lab at 12 pm, for a procedure that will take 3-4 hours. After that he will spend 4-6 hours in the recovery room. At that point Jake will either be released to RMH or will spend the night at SickKids being supervised.

Prayer Warriors --- we need you tomorrow. Signing off on the list of potential risks was an incredibly hard thing to do. I want to grab my boy and run for the hills. Or pull out my own heart and give it to him. I wouldn't hesitate if it would save his life and keep him from having to go through all this. But here we are. There's no away around this valley - we have to go through it. With each surgery Jake has had, there has come a point where my faith is not sufficient - I'm feeling that point fast approaching. Please uphold Jake for me.

His strength is perfect, when my strength is gone.
He'll carry me when I can't carry on.
Raised in His power, the weak become strong.
His strength is perfect.

Perfect for me. Perfect for Jake. Perfect for Jon. Perfect for Georgia. Perfect for all our loved ones and friends.

One moment at a time...Here we go.

Sunday, January 8, 2017

While we wait...

Two and a half days at Ronald Mcdonald House have given me lots of time to think.  There is a huge community rallying around us - our prayer warriors are world-wide, our church family is a constant source of encouragement and love, my Mom and Dad have stepped up once again to care for Georgia and when I need to talk - my friends have got my back.  Thank you all for that.   One day at a time has been my philosophy for a long time, and a wise friend of mine told me recently that when things get too hard for one day at a time, then I need to take it one moment at a time.  I've thought of that every day since.  Waiting is hard, with Jake still in partial isolation, and being in RMH means that he is around more people now so the hand washing is constant, the sanitizing is constant and the worry never goes away.  Jake's surgery is one week from tomorrow - that's 7 more days to keep him well.  I'm using all the tricks in my repertoire - Norwex and YL Essential Oils especially.

Let's talk about food.  You will all know the struggle with Jake to eat normally has been real from day 1.  Because of the severity of his heart defect, at birth he was too weak to breastfeed or bottle feed normally, which led to his dependence on his NG tube for the first 22 months of life.  How I hated that NG tube, with it's constantly being pulled out, and making the skin on his face bleed, and having to pin him down literally so Jon or I could replace it, by the time we got rid of the NG tube Jake would hide away from us when he know what was coming.  It was horrible.  If you missed that part of our adventures with Jake, here's a pic of what the NG was for him...

At 22 months Jake got his G Tube finally, and while it has it's cons it is a hundred percent better than the NG.  Jake has been through mountains and valley's with his oral eating progress and I am always hesitant to say things are improving because he usually proves me wrong but this time it's been a couple of months of steady progress with eating.  Jake seems to be finally feeling hunger, and enjoying some foods for the first time in his life.  Let's break down what Jake ate today, to give you an idea of where he is...Keep in mind that he also gets 1400 mls/day of formula through his tube.

Breakfast: half a slice of bacon, 1/4 of a cake pop :)
Snack: half a slice of bacon, a few bites of raw carrot
Snack: 9 or 10 Salt and Vinegar Chips
Supper: a few bites of roast beef, several bites of cheese, a little of a bread roll

And now he's sleeping and having his final tube feed of the day.

That's not a whole lot of food for the average 3 and a half year old but for Jake it's HUGE....

He got his second piece of bacon today from the Home for Dinner volunteers - he walked up and asked one of them for bacon :) Check it out...

After Jake's recovery from the Fontan is complete, I am hoping to switch our focus to his eating skills and wean him off of that tube.  Ideally, I'd love to see it out by the time he starts Kindergarten.  It seems insurmountable at times, but Jake has proven that nothing is impossible.  Speaking of impossible, Jake has a new T-Shirt that says SickKids VS the impossible.  I can't think of anything more perfect for him to wear.

Ronald Mcdonald House TO is a great place.  It's so calming and cozy, with nothing but support through the employees, volunteers, programs and other families.  On Saturday Georgia will be arriving with Mom and Dad, and then it will really be complete.  I can't wait to see Dad in the kitchen making my favourite breakfast of Egg in a Hole, and Georgia running down the halls with her brother, and my Mom with her cup of tea and smiling face.  Bluebelle will be moving on to arrangement #2 that day with Carolyn and Aaron - thanks so much, guys.  Here are a few of our RMH experiences so far...

Right now as I write this...This is Jake snoozin' on the couch in our room....

Late night hockey with Momma and Dadda in the Jays Care room downstairs...

Playing with his dinkies all along the windowsills of level 4....What a smile!

This is a big week for Jake, with three likely full days of appointments - Tuesday, Wednesday and Thursday.  Jake now shows fear and anxiety with hospital appointments and procedures, so please keep him in your prayers on these days.  Pray for his comfort, strength and that he won't be afraid and will know how loved he is.  "We have this hope as an anchor for the soul, firm and secure." - Hebrews 6:19.

Sunday, January 1, 2017

God Bless Heart Warrior Jacob

This post has been hard to write, mainly because I find our life is such a paradox of ups and downs --- I don't want to write out the downs and have people pity us or view us as depressing or needy.  At the same time, I also want to share our story with those who care about Jake and want to pray for him and help us in any way possible.  So I've been starting and stopping typing with different takes and thoughts several times over the last week but am determined that now on New Years Day 2017 I will finally finish it.  You can expect a lot of new postings over the next 6-8 weeks as well, as we travel through Jake's Fontan surgery path starting in five days when we board the plane for Toronto and SickKids and hopefully Ronald McDonald  House as well.  Five days...  But before I launch into all I have to say, check out the amazing Christmas we have had at home! Jake got his much requested green bicycle!!!

Here's where we are after Jake's last echo appointment.  His heart is doing okay, but he's had a super persistent cough for months, and this is apparently due to Jake's heart being more enlarged than usual --- he's always had some enlargement but now it appears to be affecting his lung function and is just one more reason that he needs this Fontan  to take some pressure off of his heart and lungs.  Jake is booked for Surgery on January 16, but has three days of appointments leading up to the surgery - Pre-Catheterization, Catheterization, and then Pre-Op Day.  

So, the Fontan...what is that??? Here's a simplified breakdown of what's happening in this third stage of Jake's repair The Fontan procedure is used in pediatric patients who possess only a single functional ventricle, in Jake's case the cause is an abnormality of the pumping ability of the heart (hypoplastic right heart syndrome). The single ventricle is doing nearly twice the expected amount of work because it has to pump blood for the body and lungs. After Fontan completion, blood must flow through the lungs without being pumped by the heart. Therefore, children with high pulmonary vascular resistance may not tolerate a Fontan procedure. Often, cardiac catheterization is performed to check the resistance before proceeding with the surgery. Jake's last open heart surgery was the bi-directional Glenn, which involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply (the shunt created during his Norwood procedure at 5 days old). The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart.  The Fontan Completion then involves redirecting the blood from the IVC to the lungs. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia and leaves the single ventricle responsible only for supplying blood to the body. (Source: https://en.wikipedia.org/wiki/Fontan_procedure)

Here's an image I found helpful, although Jake has HRHS, he also has transposition so what appears to be the left ventricle is actually the right.

Jon and I are terrified, to say the least, but we are not doing this alone.  We have a huge network of prayer warriors behind us, and the support of our family and friends.  Jake knows he is loved, and we've been spending a lot of time with Georgia in preparation for leaving - not wanting her to feel left out especially as we will be away for her birthday on January 10th.  We had a big party with all her friends last week, and I"m thankful that worked out for her before we go.  And yet, this morning I was cuddling Jake and Georgia walks up and asks me why we love Jake more than her.  Instant heartbreak.  Over the next five days I'm determined to do as much one on one time with my girl as I can - I don't want her feeling like she is less important in any way, shape or form.

I am so sad to be leaving my BlueBelle behind and that I'll miss a month or so of my baby niece Alice's life...It's not fair at all.  We've just come home from our Sunday norm - dinner and family time and Mom and Dad's house.  The last one for a few weeks, but I'm already looking forward to the next one.

Tomorrow we start to pack.  We don't need much with us as Ronald McDonald House has great laundry facilities, and we can buy a lot of Jake's tube and med supplies at the Speciality Food Shop in Sick Kids so we just need enough to get us through the first week or so.  Mom and Dad and Georgia will be joining us the weekend before the surgery - that will be a happy reunion for sure.  For more frequent updates be sure to join Jake's group on Facebook - Bless Jake's Heart, and I'll do the more detailed posting on here as needed.  

I was driving along a couple of days ago, thinking about Jake and all he has faced and has yet to face and the words of Jeremiah just flew into my head.  They've been repeating a lot since, so I put them on one of my favourite pictures of Jake that was taken just a month or so ago.  God bless Heart Warrior Jacob.

Friday, September 16, 2016

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.

Saturday, July 23, 2016

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                              

Wednesday, July 20, 2016

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.