Friday, July 11, 2014

Bravery Beads

It's been a long time since I made a post referring to SickKids Bravery Bead program...I took this excerpt from the SickKids website describing the program: "The Bravery Bead Program allows children who wish to participate, the chance to collect a different bead for each procedure or event while visiting the hospital for treatment. The goal of the program is to make a necklace with colourful beads that represent the unique and special journey of a particular child and to make something that they are proud of and want to share with family and friends. Beads are not given as a reward or something to be earned but rather to represent each child’s individual story through treatment."  Different departments of SickKids have unique beads, for example ECMO and Pacemaker beads are unique to the cardiac wards.  I have a few photos taken by the very talented Vanessa Pretty of Jake wearing the bravery beads from his first trip to SickKids - from birth to two months old.  Look at them! My little heart warrior...



If someone were to open up my head and look inside, I think they would find a million little compartments.  I tend to compartmentalize my life and experiences, especially the negative ones.  I have a compartment for Jake's bravery beads.  It's one that has been pushed to the back of my mind since coming home from Toronto in September 2013 after a month long stay for Jake's Glenn open heart surgery.  I came back from Toronto with two hospital baggies filled with bravery beads and red thread.  When we got home I took the baggies out of my suitcase and put them out of sight, telling myself that when life calmed down I would sit down and put his third bravery bead necklace together.  Every couple of days since then I have glimpsed these bags sitting tight on their shelf, and always shied away from picking them up and putting them together.  These simple beads represent so much for my son, and for me as a mother.  Last night I made myself take them out...





I put Jake in his high chair, and we opened them up together.  So much pain, suffering, brokenness in these two bags.  And yet, each bead was a stepping stone to the miracle of God bringing Jake to the point he is at today, his broken heart has been patched and each day is a gift from God.

Jake and I went through the bead together...until he tried to eat one, then I had to confiscate them :)


Each bead represents a different procedure or medication or achievement on Jake's road to recovery.  These beads are from his Glenn surgery and recovery, which lasted only 9 days at SickKids!  I have kept these beads compartmentalized for the last 10 months since we came home from SickKids because of the pain and suffering they represent.  My little baby boy has been through more than most people will endure in their whole, long lasting, lives.  I would give anything, literally anything...rip out my own heart if that was an option...to take the pain away and make him healthy and whole.  As a Mom it's the worst feeling on earth to see your child suffer, and in some cases to be  the one pinning him down for the suffering to occur which happens each month during his bloodwork at the Janeway.

Why is a question that I have asked a lot.  Why is Jake subjected to this pain and suffering? Jesus said it himself, "You will have suffering in this world" (John 16:33).  This whole world is full of individuals who are suffering, either themselves or by watching someone they love suffer.  It's a world full of pain.  But let's go back to John 16:33 - there's more to that statement from Jesus.  The entire verse is a revelation for me.  Here's the complete statement: "I have told you these things so that in me you may have peace.  You will have suffering in this world.  But be courageous! I have conquered the world."

Jesus is perfectly honest with us here.  We will suffer - each and every one of us in some way.  But through him we can find peace and courage to face the day.  Jacob's God is in control of his pain and suffering, he has overcome much more than a congenital heart defect.  God gets the final say in this story - not a worried Momma or an innocent child.






I love to sing this song these days..."Cause when we see You we find strength to face the day, and in Your presence all our fears are washed away."  Truer words were never spoken for my life right now.  

In Jake's bedroom now all of his bravery beads are proudly displayed...a testament to his strength and to God's will for his young life...



Tuesday, July 8, 2014

How to change an NG Tube for a 15 month old...

Since our last post, we have found that we can do NG feeds outside the house if we water down the Nutren Jr, which is fine except that it cuts into Jake's much needed calories.  So, I've been trying to avoid this if at all possible, but if it's not - like on Canada Day when we wanted to watch the celebrations on Confederation Hill - I mix the Nutren and Water in a 60/40 combination.  Today we took another step in the direction of being able to leave the house more - we put a larger tube in, going up to an 8 french in size.  This was really hard for us to do, as it looks like it is twice the size of the 6.5, but really it's not.  Jon and I were talking about how we had never documented a NG tube placement, and thought we'd document this one, to have it to show Jake when he is older and can't remember his NG tube (oh that will be a happy day!)  I'm going to share it with you too, but I'm warning you - these are not graphic, but Jake is unhappy in them, if you don't want to see it, skip over the picture portion of this post.

How to change Jake's NG Tube:

1. This boy knows what is about to happen...see his anxious face...



2. Gather supplies...missing from this picture is the duoderm, stethoscope and sterile water...




3.  Lie the toddler down and make him smile while you can...




4.  Measure the tube for placement in Jake's stomach, and then mark that number with a permanent marker.  Today's number was 31.5 .


5.  Swaddle flailing arms with a towel....



6.  The awful part.  Daddy holds and Momma puts the NG in...



7.  It's all over quickly, check placement and wet the tube and then cuddle and love on the boy for all you are worth.  Half an hour later, his stomach has settled enough for a meal and a feed...



Jake has been rubbing at the tube much more than usual, this new larger tube is really bothering him so far.  I'm hoping he will adjust because his last liquid feed was flowing really well through the new tube size.

And that's how we do it.  It's not fun, but Jon and I have become pros at getting that NG back in.  If Jake is not pulling the tube out, we can get a months use out of most NGs - 30 blessed days until we have to subject him to that again...

In happier news, Jake now has 6 teeth! Jake got 4 teeth almost all at once, and then went 7 months without getting any more! I was starting to worry about it, and then over the course of a week he has pushed up a molar and another near the front of his mouth.  Super cute.


I had another oppourtunity to spread awareness of CHD's, and how they are the number 1 birth defect.  Jake joined me at the NL Heart Support Group booth for a little while to represent and just look super cute! The baby in that picture on our display board is Jake at 5 days old.  Those passing by could not believe how far he has come - he's a strong one for sure!




 Jake loves to "talk" on the phone now, and has a bad habit of doing this while he is also driving....tsk tsk tsk :)




Canada Day was the best day I've had in awhile, with an easy morning at home, then afternoon with the family listening to live music, enjoying sunshine and eating good food.  This was all topped off with a BBQ at a friend's house, and we didn't get home until 9 pm! An awesome day.  There should be more days like that, for sure.



I broke down and got superbaby's hair cut this past week...I was determined to let it be long and sweet, but I had 3 people call him a girl in one day and that made the decision for me! It's still a little long, I wasn't brave enough to let them cut it really short, but it's much neater and no one has referred to him as a girl since :)


I'm sick today, I woke up with some sort of head cold/sore throat and achiness nonsense...I certainly don't have time for that, but I'm just chugging slowly along and sanitizing my hands like crazy and trying hard not to kiss my kids...Here's to hoping this passes quickly and no one else in our house is affected.  

Leave you all with this inspiration for the day, our God is good.  So thankful and blessed even in the midst of the unpleasant parts, sickness and general chaos.  I can rejoice and be glad anyway!