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."

Do you believe?

Tonight Jon and I had the priviledge of volunteering at Ronald Mcdonald House and serving families who were living there, just as we have lived there during our journey with Jake.  It was a great experience.  Heartfelt and wonderful, and truly felt like giving back just a little of what we have been given.  I'm also so thankful for the NL Heart Support Group, and the life long friends I have made through it --- often, they are the only ones who can truly understand how I feel about my son's congenital heart defect and it's impact on his life.  

I have a HUGE Thank You to say as well.  In October our local children's hospital, the Janeway, did it's annual Pyjama-rama Fundraiser and we created a team with the goal of raising $500 in dedicated funds for the cardiology department where Jake has spent so much time and had exceptional care.  Through the donations, Team Jake donated $525 to the Janeway Cardiology department --- THANK YOU! With 1 in 100 children being born with a CHD this is a very busy part of the hospital.

My sweet kids are the light of my life.  Georgia blessed me in ways she will never comprehend the day she came home from school upset because her classmates said that God was not real.  My outspoken six year old told them that God was very much real, and alive in her heart.  In the rush-rush-rush of daily life, I often feel that my messages don't get heard, but this most important message of all was heard.  And I know not only from me - from her sunday school teachers Kathryn and Josh - and from her wonderful Nanna and Poppa.  I am so thankful.  

Jake is once again making the health professionals in his life draw a blank in terms of explaining his progress.  His dietician just simply shrugs and says "I have no idea", and his cardiologist wonders if it could be that he's not absorbing some nutrients properly but really has no idea either.  Jake's diet has been 50/50 with two types of formula for the last year or so - one is high calorie and one is normal calorie.  We recently ran into a supply issue with the high calorie formula and went over two weeks without it.  When Jake was weighed in after those two weeks he had gained A POUND.  A POUND!

So the decision was made to continue on without the high calorie formula because he was vomiting less, eating a tiny bit more orally, and gaining weight.  So here we are, about five weeks after stopping the high calorie food and Jake weighed in at 27 lbs 8 oz last week.  Whoo! So great! 

I had a long chat with Jake's cardiologist last week, and she told me about evidence that is based on 40 years of data, that shows that for children with the Fontan circulation - delaying the surgery until the after the age of 3 has the best short and long term outcomes.  So, we've officially been delayed once again - now we are expecting the Fontan procedure at SickKids in May or June of 2016. Remember the tiredness that I worried over in my last post? That's most likely directly related to the growth spurt that he has been going through.  It's normal for single ventricle kids to slow down and have tiredness increase prior to the Fontan procedure, but for most kids who are on a normal growth curve this happens gradually.  In Jake's case, he has done a year's worth of growing in six months, and this is a big adaptation for his little heart.  Jake's iron and folate levels are also being checked because it's frequently a deficiency in children with single ventricle heart defects.  Jake's iron is normal, and we are waiting for the Folate report to come back.  

In the meantime, my boy is growing, happy and sweet.  His blankies are his most beloved posession, as you can see in the picture below which is from this morning --- Jake is lying down to rest with about 10 blankies on him :)

We also built a snowman this week.  Seriously, we did.

There are months where I feel like life is upside down.  It's topsy-turvy and ridiculous, and makes absolutely no sense at all.  This has been one of those months.  Some days I just feel like shouting --- life is hard.  

life is cruel.

 life is senseless.  

life is beautiful regardless.  

The whole world around me seems to have gone crazy --- most recently with the terrorist attacks in Paris, but with a thousand other events taking place daily in my own town and country.  There are days when I see why people ask - what kind of God would allow this? What kind of love is this? And with my own life as testimony, I don't have an answer for any of them.  I just believe.  Last night I watched a movie titled "Do You Believe", and was blown away by it's message.  I copied down the part that resounded the most with me and wanted to share it with you.  Here it is.

Do You Believe?

I’m not sure any of us ever gets to see the whole picture. the God’s eye view, so to speak.

Tt’s like we’re little children, sitting on the floor, gazing up at the backside of a tapestry that’s being woven.

To our eyes it sometimes looks ugly, the colours are a jumble and none of it makes much sense.

But one day, we’ll no longer be sitting on the floor.

We’ll come around to the other side,

And the genius of God’s handiwork will become clear.

At the center of it all, we’ll see the cross.

But in that immense tapestry, we’ll also see the single unique thread,

The only one of it’s kind and colour, that our own life has added to the piece,

The one thread without which the whole thing, would somehow be incomplete.

Personally, I can’t wait to see His masterpiece.

Do you believe?

Some days you gotta dance...

Yes, I am titling today's blog after a Dixie Chicks song.  It's stuck in my head today - particularly the line "live it up when you get the chance, when the world's not making no sense and your feeling just a little to tense".... And now, if you know the song, it's probably stuck in your head too.  Sorry about that!

I have created a Facebook Group called Bless Jake's Heart in an attempt to keep those who pray for Jake updated on a more regular basis, as the normality of our lives these days doesn't give me a whole lot to write about --- and I thank God for that every single day!!!! Please feel free to join it, and keep up with Jake's busy life these days.  We have a lovely Fall routine in place, that involves a freedom Jake has never had before.  Jake is in swimming lessons, a weekly playgroup, and KinderMusik, and every dry day we are at the playground across the road where Jake can easily spend an hour sitting in the swing, he loves it so much.  

Those of you who have been following Jake for awhile know that he is due for his third stage repair, the Fontan Procedure,  right about now.  Jake's cardiologist and SickKids have both expressed the opinion that it would be better for Jake to be bigger before this procedure takes place.  The open heart surgery has been delayed, likely until March or April, to allow time Jake to grow.  That is only if his heart function remains the same, and we keep getting those great "no change" reports at his Echos.  So we're entering Flu season and hoping for the best.  One day at a time, and knowing God is bigger than they bogeyman, as the Veggie Tales would say.

In the weight department we have good news to report! Jake weighed in at a whopping 26 lbs 8 oz at his last weigh in!!! Whoo!!! We danced that day too.  Now we're aiming for 27 lbs...hopefully this month.  The intense feeding schedule we have him on seems to be effective in putting on those calories.  Of course his eating/drinking has dwindled down to almost nothing because he no longer feels hunger but he is still snacking enough to retain his eating skills, which is really all we need at this point.  Jake does feel thirst though, because of the concentrated formula he is on, and will also drink a little each day.

Georgia is on my mind today.  It's tough being the healthy sibling sometimes.  Our life is in a lovely level of calm right now, but I know in a few months it won't be.  Please keep Georgia in your prayers too.  

It's a brutiful life.

Life is brutiful.  I've said it before, but I truly believe it - it's a brutal and beautiful life.  I started my day today with the image of a 2 year old Syrian boy named Aylan who drowned and washed ashore in Turkey when his family attempted to escape persecution and become Canadians.  I can't even deal with the pain that my heart feels over the suffering.  It's instant focus and clarification in my own life.  My prayers are with that boy, but I know that he is now free from pain and suffering and with his Heavenly Father.   It's hard to transition away from that thought, but the world keeps on spinning even when you feel like the pain should stop it in it's tracks.

There is still beauty in the world, but it hardly seems right that both moments can coexist.  Look at the beauty from my day today, thanks again to the very patient and talented Vanessa Pretty.

At Jake's last weigh in, he was back up to the 15th percentile with a whopping 25 lbs 11 oz on his tiny frame.  For the first time, I am noticing a real solid weight in my arms when I hold Jake even for a short period of time.  I know that his pattern is a roller coaster of ups and downs with his weights, but for today I'm embracing my 25 lb 11 oz Jake and the little bit of chub that seems to be developing - most noticeably that his pacemaker is not so prominently stuck out from his little belly! I love it, and I thank God for it.  It's a hard road of reflux and tube feeds but we are running through it together.  In terms of reflux though,, the new med Sulcrate did not help Jake's reflux so we have discontinued that and restarted the Domperidone to see if that will help at all.  A side effect of domperidone (TMI warning!) is soft stool though, so we'll see if that interferes with his weight gain.  For now, Jake has graduated to weigh ins every second week - so much freedom! 

Jake's genetic testing came back NEGATIVE for the Loveless hearing loss gene - and I couldn't be more thankful.  Both of my kids had a 50% chance of carrying (and thus being affected by) this gene - and neither is a carrier.  I know most people look at me and say that I manage just fine with the hearing loss, but I would still never wish it on any one.  Jake often tells me things that happen before I hear them - like tonight when I was putting him to sleep upstairs Jon came home and Jake popped up and said "Dadda home!" before I heard a sound.  My little darlings.

A HUGE  thank you is due to everyone who donated blood during the 2 day blood drive in Jake's honour.  Our goal was 100 donors, or roughly 300 pints of blood. 106 PEOPLE DONATED!  You all rock, and I thank you so much for honouring my Heart Warrior with your own gift of life.  Next year's goal - 120 donors!

 A proud sister representin'

 No matter how busy you are...

 Poppa donated too!!!

Jake driving the blood mobile :)

In our world there always seems to be a cause for concern.  Lately we've been finding the costs of feeding tubes/and their acessories very oppressive.  I find myself daily searching Medical Supply Exchange sites on Facebook, and with the help of a great friend (That's you Dominique!) I've managed to save literally hundreds of dollars on Jake's day to day supplies - but the cost still adds up.  More than that though, we have discovered that Jake's oxygen saturations are almost always lower on his left hand side.  Significantly lower.  For example, tonight's resting oxygen saturation is 67-70 on the left side, and 88-89 on the right side.  We are tracking this, and our cardiologist is aware, and we're going to explore this at our cardiology visit next week.  Jake's safe oxygen sat range is above 75, but preferably above 80, so I'm worried that this low sat on one side of his body is going to affect him in some detrimental way.  There is always something.

Here are some highlights from our family life since the last update.

 St. John's hit 30 degrees celcius for only the 12th time in the last 30 years...so we went to the beach!!!

 Look at the determined face on this Heart Warrior....

 Jake's G tube malfunctioned but he's still smiling after Momma and Dadda replaced it at home!!!

 Our beloved dog is having major health issues, but we're keeping him comfortable and enjoying each day with our Lukey boy.

One benefit of having a big sister - being dressed up like a doll! Check out Jake's shoes - they belong to an Ariel doll!

Cover this child with Your love.

A few days ago we arrived home after Jake's first ever family vacation.  We packed up our car and drove to Cavendish, PEI for seven days of bliss.  Overall we drove about 3000 kilometers there and back - and that doesn't include the distance covered by the Ferry boats! The kids were not fans of the car and driving, but we got around it with the use of a dvd player, many naps, and overnight boat crossings.  For me, the whole experience was wonderful.  I always use the word normal like it is an oxymoron - but it is for us in many respects.  This was normality at it's finest.  The highlight of every day was sitting and playing poolside - we spent most of our time here.  We ate lots of fresh seafood, went to the beach, a different restaurant most nights for supper, Sandspit, Shining Waters, Ripley's Believe It or Not Museum, The Haunted Mansion in Kensington, Jurassic Bart's Dinosaur Museum, the Red Dirt Shirt shop, lots of Cows Ice Cream (Rated number one ice cream spot world wide!)...I can't even name it all right now.  But mostly it was fun.  Lots of fun.  Since Jake was involved it was sometimes pukey fun - no pun intended, but we replaced his feeds as well as we could and carried on.  I'll let these pictures tell the story...

3 days before we left for PEI Jake had a hard weigh in at the dietician.  A couple weeks ago we had celebrated because Jake hit the 25 lb mark - 25 lbs and 1 ounce! He hit the 15th percentile!!! Oh man, that was wonderful.  Then Jake got a cold and started vomiting more...and weighed in almost a pound less 3 days before our vacation, and stooped back down to the 3rd percentile.  Oh :(  I didn't post it on here because I wanted nothing to get our moods down for vacation.  We changed his feeding plan again - he is now getting 1300 ml of high calorie fluid in his G Tube each day, broken up into 5 feeds - the first at 6 am and the last at 11 pm.  So...if Jon and I look zombie like - this is why! Jake is going to be weighed in again this Thursday...I'm almost sick to my stomach thinking about it.  But I think he may have gained, even though the vomiting has not stopped.  It's a almost daily hassle for him and Dr. P his G Tube doctor prescribed him a new med today that we will try to see if it will help with the vomiting.  It's a new one that Jake has never had before - the other 3 reflux meds we have tried have not really worked for him.  Any prayers for weight gain would be so much appreciated.

If you are able to give blood, check this out...

It's a 2 day event and our goal is 100 donors.  You don't have to be local to us to donate in Jake's honour.  Here's what you do if you live away - To register go to www.blood.ca/joinpartnersforlife and use NLHE541250. If people don't have their donor card # tell them to select that they are a new donor. People can donate across Canada and still be counted!!!!  Given that the average donation is 3 pints of blood, if 100 people donate that will be 300 pints to save the lives of other Canadians.  We can do this guys! Join the FB group and let us know if you donate, and also please share the event with all your friends!  2nd Annual Blood Donor Clinic In Honour of Jake  .


We are also waiting on the results from genetic testing for Jake.  Some of you will know that hereditary hearing loss runs in my family - Georgia was tested as a baby and does not carry the gene.  Now we are waiting to hear if Jake is a carrier, if he is he will experience some degree of hearing loss.  There was further examination of Jake's DNA also done, but this test result will take much longer - they are basically looking to see if there are any abnormalities that would point to a reason for the development of his heart condition.  I'm fully not expecting that test to show anything - as is the doctor.  The hearing loss has been a source of some anxiety for me lately though, although I cope well with my profound-severe loss I don't want that for my son.  Please pray that this test comes back negative.  

Father, I pray that you will cover this child with Your love.  Psalm 33:22

We will see you again.

Earlier this year I heard about the Dream Fund's event Wings for an Angel, and I loved the idea so much that I decided we needed to honour some of the angels who have touched our lives.  Wings for an Angel is a province-wide butterfly release that gives you the oppourtunity to honour someone - alive or deceased.  In our case we honoured 5 individuals - 3 heart warriors, the baby that I lost in 2012, and Mark Jackman.

In our journey with Jake's congenital heart defect we have met so many families who have been touched by this monster.  CHD is the number one killer of children before their first year of age - did you know that? More children die from CHD's each year than from all types of childhood cancer combined.  So I thought with this butterfly release, and the honouring of 3 of the babies we met who have passed away because of CHD related illness that this would an opportunity to have those children remembered - because I know that their families want their names said, and their stories told.  These paragraphs and pictures will not do justice to their beautiful lives, but it will touch on their strength and courage and absolute beauty.  The world needs to know these stories - CHD needs more research and funding.  Please whisper a prayer for these families, and remember these beautiful faces with them - their bodies are now whole and there is no more pain for them, but their absence leaves a hole in the hearts of their families.





AVA

Ava Samatha Grace or  “Birdy” as her family like to call her - was  born December 4, 2012.   She was born with a severe congenital heart defect called hypo-plastic left heart, where only the right side of her heart was viable and working.   She had open heart surgery at 2 days old, but by the time she was 6 months old her heart was failing and it was clear she was going to need a heart transplant.    She was put on the transplant list, but two months later, on August 15, 2013, Ava flew home to heaven where God welcomed her with open arms and gave her a new heart, and a new body that would never perish or fade.   Ava is sadly missed, but she was such a gift and blessing from God that now all we can do is be thankful for the time that we had with her, and for what she taught us.  Her family knows that they will never forget her.




GIDEON

Gideon, which means Mighty Warrior, was born with a congenital heart defect February 25, 2014 and lost his battle May 7, 2015 after 11 surgeries (four of which were open heart) and spending his entire life in hospital. Gideon received many blood transfusions over the course of his life and with a whole bunch of help his mom would like to give back. Each day blood donations help save lives. Please consider donating in honour of Gideon and help save a life.  To donate, make an appointment with Canadian Blood Services and give them the number INHO368016 before you make your donation then it will count towards Gideon's Mother's goal of 409 units of donated blood by the end of 2015.  Join his page The Mighty Warrior Blood Drive on Facebook to show your support!




GABRIEL

Gabriel was born with Hypoplastic Left Heart Syndrome which means the left side of his heart did not develop... along with this complication the heart tried to compensate building extra routes to transport blood from the other side of the heart. Although it tried to complete itself... it in fact made more complications by forcing too much blood to one area of the heart.  Gabriel was 11 months old when he lost the fight and went to heaven.  



Matthew 18:1-4.

At that time the disciples came to Jesus, saying, “Who is the greatest in the kingdom of heaven?” And calling to him a child, he put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven.



Rest in peace little ones, inside the fold of God's loving arms.  

Ava, Gideon, Gabriel, Baby Anstey and Mark.  We will see you again.

Celebrating Big Sis

See that beauty? She's about to graduate from Kindergarten, and I could not possibly be more proud of her.  Georgia, if you ever get to read this blog - you are my sunshine, the light of  my world - I love you so much.  Please don't ever change for the world - you are awesome the way you are.

Jake is completely in love with his big sis.  He follows her around and asks for "sissy" when she is not there...and so often I see him trying to do the things she does.  I'm so glad they have each other.



In regards to my last post, the nose swab came back positive for human metapneumovirus, but by that time Jake had beaten it.  He's so tough and strong - his half a heart does not hold him back!  Shortly after that Georgia came down with all the same symptoms, but of course didn't need hospitalization, and it seems like for the moment we are in the clear in our house.  I probably shouldn't tempt fate there -- knock on wood.

Another Heart Mom shared a verse today that I needed to hear -- sometimes this life is completely overwhelming. Sometimes I just forget to wait on the Lord, and spend days, or weeks plowing straight through - until it becomes too much.  And eventually it always becomes too much.

Psalm 27:14King James Version (KJV)

14 Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.

The thing is - when I pack my diaper bag to leave the house, I need to pack a G Tube replacement kit, a feeding pump, feed bag filled with special formula and syringes for flushing....For some reason I was struck by that this week.  It's not "normal" but it is my norm.  My diaper bag is HUGE :) Today I feel fine about it, but some days it just strikes me as incredibly unfair -- for Jake.  On the outside he's Mr. Perfect but there is so much maintenance that goes on behind the scenes.  I find myself praying daily for guidance, strength and acceptance -- especially when the feeding pump keeps kinking up and it takes 2 hours to get 300 ml into Jake, or when the feeding tube won't connect correctly and I find Jake standing in a puddle of stomach contents crying because his socks are wet when I've only left the room for 2 minutes.  Does that make me ungrateful, feeling this way sometimes? I hope not.  Because I know how blessed I am.  I wouldn't trade my reality for anyone else's.  I am blessed and my cup is so full.

The last two weigh in's Jake has lost weight, of course...he's weighing in again on Friday but I'm not holding my breath for a gain.  Two weeks ago we were faced with the reality that Jake needs to gain - we have to let go of this pressure we have to get him to eat and drink, and just feed him ourselves and let him gain.  So that's what we have been doing.  Jake is on a set schedule, so at 10 am, 2 pm, 6 pm and 11 pm regardless of where we are or what we are doing, the feeding pump goes on his back.  I've been setting up feeds on the side of the TCH, in parking lots, random driveways, etc.  I keep thinking that his legs look a little fuller - please let it be reality not wishful thinking.

I need to send a huge shout out to Little Bay Island's Home League group -- When I wrote my post about the costs of maintaining Jake's feeding tube they all chipped in and sent Jake a check.  It's so thoughtful, and self-less and amazing.  The amount goes right into Jake's account, and will be used when we need to buy supplies once again.  Thank you.  Seriously.  From the bottom of my heart.  

One huge development in the recent weeks...Jake now brushes his teeth.  Any parent of a child who is tube fed will understand -- Jake has never let me brush his teeth, or been willing to brush them himself, and because of the possiblity of developing an oral aversion we were advised not too push him.  But with coaxing, and encouragement from Big Sis, he now does it himself with a touch up from me afterwards.  I'm so proud.

Thought I'd share a couple of pics from today with you - it was cold outside so we painted this afternoon.  I just love that expression of concentration on Jake's face.  The little doll.

After breakfast Jake vomited his feed.  Unfortunately that's not an unusual occurrence and he went straight into the tub after.  Here is is just after I took him out and asked him to tell me what a monkey says....The cuteness is too much.