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...

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!

A goodnight kiss

These days we are being tied down to home when it comes to liquid feeding times for Jake - it is possible to feed him with the Nutren Jr. out of the house, but it is a tedious process that takes up a lot of time and usually ends in a frustrated Jake and a frustrated Momma.  Case in point: we wanted to have a fire in Mom and Dad's backyard tonight, and it was feed time for Jake so this was what we needed to rig up (Thanks Uncle Ryan for figuring it out, and Auntie Laura for risking life and limb to get the bag up there) to get the liquid to flow through the NG...

In case you can't tell, the feed bag is attached to two clothes hangers and then to Mom's clothesline...Yeah, we are getting creative these days without a feeding pump.  I finally gave in and bought a bigger NG for Jake - he has been having the same size since his birth (6.5 French for those other Tubies out there), but according to his OT there is no reason he can't go up a size to an 8 French, which may make the Nutren flow better.  The larger tube came in the mail this past week, so next tube change day we'll try it out.  I'm feeling a bit of apprehension about the change though, as it was such a struggle for us to get comfortable with the process of putting the tube in and I'm afraid a bigger tube may be harder to insert.  I don't know, but I don't see any way around it either :(

There is never a dull moment in this house, and Jake has very little fear, so this week he ended up falling face first onto the hardwood and putting his tooth through his top lip...look at the shiner he had...It didn't get him down for long, and it certainly didn't stop him from eating though.  Tough little man.

Remember baby Sara? I saw her today - she's getting so big, and is constantly happy and thriving at home with her parents.  It did my heart good :) And those of you who have been praying for Baby Owen - thank you and keep it up! Owen is exceeding the doctor's expectations and doing much better than expected.  July will most likely be his birth month, and he will need 2 surgeries in his first week of life so keep those prayers flowing for him and his Momma.

I've been fighting off anxiety this past week, needlessly thinking about Jake's next surgery.  I'm hoping it won't be until 2016, but it may be in 2015 depending on Jake's growth and his oxygen saturations.  I'm working on letting go of the worry once again - it seems to resurface every now and then.  Jacob is God's child - I know this and trust this.  But sometimes I wonder if I am strong enough to go through it all again, and some days I think the answer is no.  I often get people telling me how strong I am, and how they could never deal with all we have been through - but I don't feel strong.  I rarely feel strong.  But I have peace most of the time.  Peace and trust in God's plan for Jake's life.  Another source of my anxiety is how Georgia will deal with us needing to make another trip away, and have her life thrown into chaos once again.  But at the end of the day I leave it all with my God.  He's bigger than the boogie-man, as the Veggie Tales say.  I sincerely apologize if I sound like a broken record, but there is never a day that goes by that these worries are not in my mind.  Take heart in this verse from the Psalms:

At my last visit to the grocery store there was  sweet lady who told me that she read my blog and I wanted to say thank you to her for the kind words.  I'm sorry if I seemed distracted while in the lineup, but your words had me smiling as I walked out of the store and drove home.  Thank you for that.

Jake has been coughing a little this past week, but I'm hoping and praying that it won't develop into anything more complex.  We have had clearance from Cardiology to take Jake with us when we go around the Bay next month to visit both Seal Cove and Twillingate.  There are so many people in both places who can't wait to meet him for the first time.  It'll be an adventure for us, as the only place Jake has ever travelled outside of the metro area is to Toronto.  He was born in Toronto, so it might be time to screech Jake in, lol!

I'll leave you tonight with this sweet kiss...

No Change!

Today was  monthly echo day, and it finished off my  Monthly Anxiety, Stress and Eat Week.  

And this month, it was made worse by my fingers typing searches into Google, I swear it's as though they have a mind of their own.  I know better - the stats are not great - and yet, I couldn't help myself.  After some research through a reputable site, it seems like Jake's combination of defects is around 1 in 100,000 in the likelihood of occurring.  DILV on it's own is 1 in 10,000 but with the Transposing Vessels and Complete Heart Block he's upped himself to 1 in 100,000.  Oh me nerves.

Jake and I get up super early on these days, and he is fasting because of the sedation, so this was Jake at 8:15 in the Cardiology waiting room this morning, and then waiting to be sedated...

Little doll.  The sedation doesn't put him to sleep, it just relaxes him and makes him "high as a kite" as our favourite cardiology nurse Charline says :)  

And then Momma's favourite part of the month...hearing the cardiologist say "no change".  Music to my ears.  Thank you Lord.  Jake's Left Pulmonary Artery is very small and hard to see in an echo, so we may need another CT Scan soon - we'll burn that bridge when we get there.  

Guess what happened this week? My little man hit the big 20 on the scale.  It took him 3 months to go from 18 to 19 pounds, and only 1 month to go from 19 to 20.  Way to go Babycakes.

And in other news, we have a preschool graduate...Words cannot express how proud I am to be Georgia's Mom.  Apparently she wants to be a Swimming Teacher when she grows up :)

Oh, and this week there was another blood donor clinic in honour of Jake's Heart Warrior friend Carly - and I couldn't donate because of my recent tattoo, but Jake's Daddy donated in my stead.  There were 96 blood donations in total making it a phenomenal day for Canadian Blood Services in Newfoundland and Labrador.

This post has been mostly pictures, but sometimes I feel like they tell the best story. And after a week of stressing over the echo I am ready to regroup, clean my house and love my little family.

Heart Hugs to all of our readers.  Thank you for the prayers and encouragement!  

ZZZzzzzzzzzzzzzzzzzzzzz................

Oh sleep...Wonderful, comfortable,blissful sleep...

I am about to be experiencing more of you!

As of tonight (knock on wood), Jake no longer has a late NG feed.  For the last 14 months, with the exception of the months that critical care nurses did the feeds, Jon and I have been doing a late feed at 12:30-1:30-ish.  Each feed would last about an hour from start by the time we let Jake's stomach settle enough to lay him back down in his crib, so if the feed was at 1:30, then we got back to bed around 2:30...And after 14 months of this, we are exhausted.  Over the past week we have been slowly transitioning Jake from formula to Nutren Junior, and with the Nutren he doesn't need as much to get the same amount of nutrition/calories, so with our dietician's help we have deleted the dreaded late feed.  Tonight is night one of no late feed...so expect Jon and myself to be snoring by 10 pm tonight :)

Is it just me, or does life seem easier and better in the summertime to other people too? Nothing is different, but it's so much easier to be positive and relatively carefree when the sun shines and you can leave the house without freezing.  Here are a couple of shots from our family day yesterday...life is good.  God is great.

Georgia graduates from preschool this week.  I can't wait to watch the ceremony and see her do her part.  I promised her a new dress, and told her she could pick it out herself so we're going shopping soon.  My little doll is growing up fast.

Jake's new NG feed - Nutren Junior - is thicker than than formula, so we've been having some issues with getting it to flow quickly through his NG.  We started looking around for a feeding pump and after finding that the average cost was around $800, we knew we couldn't manage that right now.  So, I posted on a Heart parent facebook group looking for a second hand feeding pump, and a Good Samaritan stepped right into our path - she is shipping us the perfect model of feeding pump, along with a backpack, for no charge other than shipping.  Honestly! There are so many good people in this world.  I told this wonderful lady that when we were able we would repay her with what we could.    It's unreal how many blessings have come our way on this journey with Jake's health.

So I'm thanking God for his goodness once again, and I have such a grateful heart.

I still would have chosen you...

We're back!

Florida was amazing.  Georgia was so happy and carefree...and spent 90% of her time in a pool - either at the resort or at Typhoon Lagoon! Check out a couple of pictures from our get away...

We left Jake in the very capable hands of my Mom and Dad, and he was very well cared for.  So well cared for that he managed to gain 4 ounces while we were gone - this is the baby who went 3 months and didn't gain more than an ounce or two...Mom has the touch, clearly. Thanks, Mom and Dad.  Thanks most especially for doing his daily injections - I know that was very hard for you, and probably shaved a few years off your life in the process.  

When we left, we all got on the plane and by the time we landed in Florida I had only cried 3 times - I think that's pretty good all things considered? I managed to relax more by our second day there, and can really, honestly say that I was happy and peaceful for the majority of the vacation.  Watching Georgia be on cloud 9 was amazing.  Two things to note for future reference - I cannot do roller coasters of any size - both Georgia and I were terrified by Thunder Mountain Railroad...I spent the entire ride with my eyes shut saying the 23rd psalm over and over...possibly out loud :), and Georgia is not a fan of It's Tough to be a Bug...she was in Jon's lap for most of that!  That being said...I truly hope that next time we are privileged enough to go on a family vacation that Jake is with us.  My favourite part of the holiday was watching the Dreams show at Cinderella's Castle while Georgia cuddled into my neck - a moment to treasure forever.  And the permanent reminder of our trip is this...

I brought a copy of Jake's last EKG with me to Orlando, and had Hart and Huntington tattoo this segment on my arm along with a J.  The long straight lines are Jake's pacemaker spike, followed by his heart's reaction to the pacemaker and then the lower part is Jake's natural heart rhythm followed by another pacemaker spike.  I love it.  Just in case anyone thinks Georgia is being left out, I have had her name tattooed on my back for 5 years already :)

Our tans are fading already, but my heart is full with being home and submerged in the chaos of our life once again.  Yesterday the temperature soared to 22 degrees - the first time we've seen above 20 degrees since October 2013, I kid you not...so we hit the playground and the park...I wanted to share this beauty from yesterday...it's my superbaby standing unassisted by the slide...pure joy.

Yesterday during a visit to Costco Jake and I ran into some unpleasantness with a lady who I can only guess was simply ignorant.  She was very rude, insisting that something was "wrong" with Jake and asking if he would always have "that thing on his face"...The encounter left me mad at first...and then uplifted and laughing at the comments made by friends when I shared the experience on Facebook...and then today it's made me a little sad.  Jake is so perfect, inside and out.  He's not what the world considers perfect, but as one heart Mom reminded me, he is perfectly and wonderfully made.  Experiences like that encounter threaten to harden my heart, to make me fold into myself and block out the rest of the world...but I refuse.  I steadfastly refuse!   These are words to live by that I keep on my phone to constantly remind myself that life is beautiful...maybe someone else can be encouraged by them today:

Jake seems to be developing a new bad habit...pulling out his NG tube while in his crib.  We have the tube fully inside his snap up sleepers, so that the only part that is available to pull is what is on his face and a small piece by his neck, and he still gets it.  It's been 3 times in the last week.  It's torture for him and for us to put it back in, and usually ends with him sobbing and worn out from fighting to get away from us.  This is why I wanted a G Tube in his stomach - it's permanent, and very highly unlikely that he could pull it out.  But it's not an option for us, so we'll carry on.  Besides the suffering it causes Jake and the mental anguish it causes me, each tube costs $25, and is shipped from Ontario...this could get expensive if it's going to be a daily occurrence. 

Yesterday Jake was seen at the Pacemaker Clinic in the Janeway, and I'm relived to report that his pacer is working well.  He is 100% paced, meaning that every beat his heart takes is modified by the pacemaker.  At his current rate of use we have 3-5 years of battery life remaining, which is perfect since the intention is to replace it during his next planned open heart surgery - likely at age two and a half to three years old.  The time of his next surgery is determined by several factors, but at the very least they want him to walking well before considering his Fontan.

Jake is still drinking small amounts, and eating well at most meals.  His favorite thing to drink is now chocolate milk :)

I'll leave you with this shot from this morning when Jake had pulled his NG out...this was post bath and just before we put the new tube back in...