Tuesday, August 5, 2014


Yesterday Jake turned 16 months old...that's a cause for celebration right there in itself!

We have been trying really hard to include Georgia in most things to help avoid the sibling jealousy that pops up now and then, so, Georgia is  68 months old - partay! :)

We had a wonderful week out of town with visits to two places that are near and dear to Jon and my hearts - Seal Cove Fortune Bay for me, and Twillingate for Jon.  And all my worries and anxiety over taking Jake away from the Janeway were all for nothing of course - nothing bad happened at all.  In fact, Jake's oxygen saturations were higher than normal for the whole week, showing up in the low 90s most days! Georgia loves being outside, so she had a ball on this trip - it's so simple to keep her happy when all you have to do is walk out the door and your next to the ocean.  Oh, and having 2 sets of grandparents who will do anything to keep Georgia and Jake happy also makes it easy to relax while away from home.  I also took a break from recording everything that Jake ate or drank, which was a nice bit of mental relaxation and a release from the "he's not eating/drinking enough" pressures of each day.  Here are a few of my favourite pictures from the week:

Starting with a sweet moment that melted my heart when we were out in the boat fishing for cod in Twillingate...Georgia said "Momma, it looks like God is peeking at me" and pointed to the clouds.  Oh my, I was instant mush.  What a good girl, I am so thankful for her.

Oh the blessings.  While on holidays I read an article written by another heart Mom that spoke volumes to my mental state since having Jake.  The article is here:


And in it the Mom talks about her greatest fear, namely losing her child to his CHD battle.  The one question that any doctor or surgeon can never answer for us is "What can I do so that I don't lose him?" and then she talks about "the ache".  I know this ache - it's always there, even in the most delightful and carefree moments.  The writer says,

"The ache in our hearts for what we fear the most never goes away. No 

matter how well our children are doing.

No matter how they sail through surgeries.

No matter how normal our lives become.

The ache in our hearts for what we fear never. goes. away."

I always feel relief when I hear another parent describe my own feelings, it's a needed reminder that I am not alone on this journey.  And then I push the ache to the back of my mind, and move on.  So...movin' on....

When we got back from holidays I heard about this program called "I Run 4" through another Heart Mom.


  This program connects runners and athletes with children who have serious health issues, and when I checked the website it said they were in need of Buddy's for runner's who are on a wait list to get a Buddy.  So, I signed Jake up! And that very same day we were connected to a runner named Laura M.  I shared some of Jake's history with her, and we have started a daily conversation and are getting to know each other better.  I literally cried when I read that Laura already has a medal to send to Jake from a race she completed in April.  Amazing.  Even more amazing, Laura has found a race called the Diva Dash that can be run for Georgia so that she doesn't get left out.  And get this, when the date of the Diva Dash didn't work out with her vacation schedule, she found a friend to run it for her on Georgia's behalf.  Georgia will be beside herself when she gets that feather boa in the mail :)  So, if we are Facebook or Twitter friends, you will see a lot of the hashtag #lauraruns4me in my posts and pics...This will be one way Jake can encourage Laura on her runs and other endeavors, and Laura will be spreading CHD awareness for Jake through her own posts and runs.  It's a win-win situation for sure, and I'm really excited about it! If you are reading this Laura, we got your back!

In heart related news, it's echo week for Jake so say a prayer for him and for the words "no change" to come from our cardiologist on Friday morning.  Our buddy baby Owen has been born - He's gone through 2 surgeries in less than 2 weeks of life, so please remember him in your prayers as well.  It's a rough, roller coaster ride to recovery and being able to go home with his family for the first time.

We had a victory in the liquid feeding department yesterday - Jake drank 30 ml exactly from his straw sippy cup.  AN OUNCE! Every morning when I fill his cup with liquid, I think to myself, if only he could drink an ounce today.  And finally, after months of waiting...it happened.  Today so far he has drank 9 ml, we are aiming for another 21 to make the ounce marker once again.  I'm so excited by it, but I also know that it happening once does not guarantee it becoming a regular occurrence, but I can hope and dream can't I?


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