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."