Keep Calm and Trust the Almighty God

Last year in October 2013 we brought Jake home from SickKids after open heart surgery #3 - the Glenn.  We flew home with high anxiety and incredible happiness, on the plane holding a oxygen mask to our five month old baby's face.  One year later in October 2014 we will be heading back to SickKids for (hopefully) a gastronomy tube placement.  Remember my last post about Jake's allergies to the tape on his face? Well that night I moved the NG to the opposite cheek and retaped carefully with the tape that was recommended by our ICU.  Two days later Jake pulled out his NG in the tub and this was underneath...

Oh my dear.  I went into full frustrated Mother mode and contacted the Janeway, SickKids and our dermatologist.  Yesterday we got the needed response from SickKids, they had expedited our assessment appointment and booked us in for October 3rd.  There are 3 appointments for Jake on that day - G Tube Assessment, Mapping Ultrasound and Preanaesthetic clinic.  As things currently stand, Jake won't be getting his G Tube on that trip.  :(

The plan is for Jake's pacemaker to be moved on that first trip, then for him to come home and heal before making a second trip to SickKids to finally get the G Tube.  There is a slight possibility that all will be done in the one trip, but we won't know until we get the results from the tests being done on October 3rd.  Please pray for it to not be necessary for Jake's pacemaker to be moved - for the surgeon's to see a route to get around the pacemaker without needing to do two separate procedures.  I'm holding out hope for this, even though I feel the likelihood is slim.

In the meantime we are doing "use" tests for 3 different kinds of tape and 2 kinds of barrier creams (Cavilon and AllKare) to see which allergies are legitimate.  This test involves different kinds of tape being taped to his inner arm area, leaving it for 4 days, and then seeing if there is a allergy reaction when the tape is removed.  I'm beginning to suspect that it's the barrier creams and duoderm, as the reactions have always been a straight line of red - not heart or animal shaped like the hypafix would be.

Jake is still his happy and smiling self, although he does try to remove the tape from his arms whenever he gets a chance.  Check out this shot from today while waiting for big sister's bus to come down the street...

 
Dollface :)

We're having some technical challenges right now in our home - it's week 2 with no oven as we are still waiting for the part to come from the mainland, and this evening Jon broke my slow cooker while cleaning it out after supper.  Oh my.  We're getting creative anyway!

Georgia has adjusted well to school, and likes her teacher and loves riding the bus.  I'm so proud of her.  Lukey likes to wait at the bus stop for Georgia too.  Here are some waiting for the bus/getting off the bus pictures...

We are really loving our life at the moment, despite the stresses of the NG, taping and germ anxiety.  We are blessed, and we know it.  Each day is a treasure, regardless of how chaotic and stressful it is.

Tonight we went to Chapters with the whole family, and I really felt my germ phobia and anxiety taking over my whole experience - and certainly interfering with Jake because of all the hand washing and sanitizing I had to do while we were there.  From now until his October appointment I need to keep Jake well - there is no chance of surgery or anaesthetic if he is sick.  The last thing we want is a prolonged stay at Ronald Mcdonald House waiting for Jake to be well enough for his appointments.  Where is that bubble when I need it? I'm seriously considering taking Jake out of any outside activities between now and then - music, church, etc. I don't know what to do.  How do I find a balance that is healthy for Jake while not depriving him at the same time? I'm thinking it might be reasonable to have short term restrictions until after his procedures - this is shaping up to be a boring, stay at home month.  I don't know.  I don't have the answer to this puzzle.  Oh dear.

I think I need to make this my mantra...take a deep breath and...

We received a generous gift of help from a friend, completely out of the blue, that will take away some of the stress of the travel and time away from home.  You know who you are - thank you!

Don't forget Jake's blood donor clinic is coming up this week...Here's the poster again in case you missed it last time!

Your Grace is enough for me.

This has been an eventful week for our family.  Our big girl started Kindergarten.

Georgia went to school with only a little nervousness, and much more excitement.  I knew she was ready for it, and I felt like I was ready for it too - but I cried outside her locker on the first day.  I pushed back my tears quickly though, left her in her classroom and walked away.  That part was hard! I hope this year is a positive beginning to her education.  I pray that she will be safe and happy, and that her teacher will see her as a shining star and nurture her in the way that she needs.   I'm claiming Jeremiah 29:11 as Georgia's verse for this school year...

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Love you, little princess.  Oh, and if you can't read the final line on the picture above, it says "When I grow up I want to be a mermaid." Dream big, my dear, dream big :)

Last night I put Jake in the tub, which may just be his favourite place in the whole world, and before I did that I put him on his scale.  I've not been weighing him as frequently as I used to, because the frustration that I felt when there was no weight gain, or there was weight lost, was just putting pressure on us to further develop his eating/drinking skills.  But last night I weighed him for the first time in a week - and the scale that has been reading 20 lb 2 oz for at  least the last month said this...

Then it was time for a dance party in Jake's room! YES! I honestly felt like he wouldn't reach 21 lbs until he was 2 years old :) Love being proven wrong at times like this.

We spent the last weekend of summer at Camp Starrigan with our church family, and had a wonderful time despite Georgia getting sick and running a fever for the last day and a half we had there.  Once the tylenol was taken she was outside running around again, so it turned out alright.  My favourite picture is from the 70's night...Check this out, are we stylin' or what?

We still have not gotten a surgery date from Sick Kids for Jake's G Tube, but I'm holding out hope that it will be soon.  We discovered earlier in the summer that Jake is allergic to duoderm, a barrier tape used to help keep skin from getting irritated by the NG.  The dermatologist told me that these allergies often develop over time because of long term use of the tape.  Today we discovered that Jake is likely also allergic to hypafix, which is what we have taped his face with since day 1.  I did a routine tape change and found this underneath:

Oh, it breaks my heart.  We then tried Tegaderm to tape the NG on the opposite cheek, but it wouldn't stick well although we reapplied it 3 times.  Then we moved on to dermapore tape, which didn't stick the first time either but seems to be sticking now.  It's been a hard day with a lot of unpleasantness and torture for both Jake and us.  I'll do the spot allergy test with hypafix this week so see if it is actually an allergy or something else.  His skin is looking a little better now, and his good spirits are back...but I feel traumatized and like I need a week in bed to recover from the torturing I did to that sweet boy today.  It's a terrible feeling and makes me so sad.  We managed to make it to the Temple's Rally Day despite the terribleness of the afternoon...This cuteness cheers me up without fail...but still I feel so guilty for all he is going through.  It seems so unnecessary and pointless to be tortured over tape.  :(

My head is still pounding from the headache I got putting the NG in and taping it repeatedly in place, but instead of giving in to the sadness and heartache I am finding strength in God's word again.

2 Corinthians 12:9:

9 But He said to me, “My grace is sufficient for you, for My power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

God's grace is enough.  We sang this one at our Corps retreat last week, and I know it to be true.  God's grace in my life today is shown when my sadness and weakness with dealing with Jake's new skin irritations are translated into me finding the strength to deal with it, and the comfort of knowing that God is in control.  I am inherently weak and flawed - I openly admit that.  But I also openly admit that I can be strong through God's grace.  Without my weakness I would not be open to the strength and comfort that God wants to provide for the trials in my life.  Would I prefer that there be no trials in  my life? - of course! But every one has trials and tribulations, they come in many shapes and forms.  I would much rather embrace my life with it's hard days and find strength in my faith, than I would try to find the solutions on my own.  I cannot imagine the loneliness I would feel from facing this life alone.  

The in honour clinic for Jake is being held by Canadian Blood Services in St. John's on September 18 at the Wicklow Street location from 11-7.  Come on down if you live locally and are able to donate blood, we'd love to see you there.  Jake will be there most of the afternoon for sure.  Here's a copy of the poster that is circulating:

Those of you who have been praying for baby Owen, thank you for that! Owen is now on the 4D recovery ward at Sick Kids, and his parents are able to provide most of his care finally.  He's a miracle baby...keep him and his parents Grace and Cory in your prayers please!

And in running news, look at this! Laura ran her first official race for Jake...We love our IRun4 runner!

Go team Superbaby!

An anniversary to remember...

On Thursday August 14, Jon and I celebrated 10 years of marriage!  Jon and I have been very fortunate over our 10 years of marriage to have been able to hold on to our love through some tough times.  We've had a lot of joy, some loss, financially good years and financially tight years, 2 cats, 1 dog, one bouncing 7 lb 10 ounce beautiful baby girl, a miscarriage, and then our 8 lb 5 ounce fighting superbaby.  It's been a wild ride, and we're far from perfect but we're holding on for another 10 years now.

We had a great day celebrating the anniversary, but ended the night at the Janeway emergency with Jake.  Flash forward to today, Sunday, and we are still at the Janeway with Jake.  Jake was admitted with a viral lung infection (most likely, we are still waiting for the swab results), he was having laboured breathing and drops in his oxygen saturations.  Tonight is night #4 here, but Jake seems to have turned a corner with this bug, he's been off the oxygen for most of the day and  is holding steading at 79-80  percent saturations for the most part.  If he can stay off the oxygen over night, we will be discharged in the morning.  And I want to go home! The staff here have been wonderful, especially our day nurse Sarah - she was a God send for Jake and for us.  Jake likes her so much that he blows kisses and waves when she leaves his room.  As long as she is not holding the nose suction thingie, he is happy to see her!

Here's Jake on Day 1 of his treatment...He was feeling  really sick at this point.

It's tough having an IV in your foot when you are a toddler who just learned how to walk!

After day 2, Jake started to feel and act more like himself...even getting into mischief by squeezing his IV bag, and twisting the oxygen dial on the wall through the bars of his crib!

It's funny the things you miss when you can't go home.  Every day we've spent in this isolation room I have longed to be able to mop the floor - seriously.  It's near the top of my list of things to do when I get home tomorrow :)  Also on that list is to cook a yummy homemade meal, kiss my Doggie on the nose, have a bubble bath and shave my legs,  and spend all my free time on the floor with Jake.  Big Sister spent this week in Twillingate with her grandparents, and she is having a great time.  I'm thankful that she was happy and well cared for while we were here with Jake - if she had been at home she would have felt left out with us spending all this time at the hospital.  Georgia is getting a huge squeeze when she gets home on Tuesday.  I just want my little family in my cozy house all healthy and together - is that too much to ask? :)

This morning Jake had perked up enough to start acting like himself again, and I got this gem of a video of him bopping to Bobs and Lolo on the tv in his hospital room.  This will definitely make you smile...Take the time to click on this one!

https://www.facebook.com/photo.php?v=10154485308020611&l=545343752418445390

This is Jake's second hospital admission for a respiratory infection this year.  The last one was in March and lasted 2 nights.  This one has been double the time so far.  And his echo was once again postponed.  We are now nearing the 2 month mark with no echo - the longest Jake has gone without an echo in his entire life.  The general rule for sedated echos after a respiratory infection is minimum 17 days, so we're waiting for a new appointment now.  When this echo finally happens I will be one happy and relieved Momma.

Jacob is developing a true fear of some things that he sees frequently, such as strangers in gowns/face mask, and he can detect a bloodwork technician as soon as they walk into the room.  He just knows.  And he cries, and looks to me for protection from the hurt, and my heart breaks into pieces all over again.  It's so hard.  I worry at those moments what Jake's future will look like, and I have read stories of children with complex illnesses who have developed post traumautic stress disorder in reaction to their time spent receiving treatment, and then I have a new worry.  It's a vicious cycle.

Today is Sunday, and I wanted to be able to go to church - but since I couldn't my Mom brought church to me through her cell phone :) Jake was napping when the service started, so I got to listen to part of the service through the speakerphone during those peaceful moments.  Thanks Mom.  I didn't feel alone at all during that time!

Jon and I are mentally preparing to head back to SickKids once again.  We're still waiting for the date, but we know it will likely be in the next month or so.  With that in mind, my family is taking part in the Ronald Mcdonald House's Red Shoe Crew - Walk for Families in September.  We are raising money for the local RMH in St. John's, even though we have never stayed there - we feel a connection because of the 3 months we lived at RMH Toronto in 2013.  With another stay at RMH approaching, we've set a fundraising goal of $500, and we're half way there! If you would like to make a donation to Team Jake - we have set up a Canada Helps page that sends the donation directly to RMH St. John's.  Here's the link to our fundraising page - every donation helps, and donations of over $10 get a tax reciept.  https://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=38565

Please consider making a donation to help us reach our goal!

God is faithful, and He's good.  He's been Jake's strong foundation and protector since the moment of his conception, and this experience has been no different.  My Mom reminded me today of the song that I spent hours and hours singing to Jake during his two stays at SickKids - on days when I didn't know if he would make it through, at at moments when I feared for his life.  It has been months since I thought about this song, and I was thankful for the reminder.


Lord send your angels to watch over Jacob,
I'm so afraid of the night.
Lord send your angels to watch over Jacob,
wrap him in your loving arms.

That's my prayer for the night.  For angels to watch over my children, both Jake and Georgia.  For my fear of the unknown to be at rest.  For Jacob and Georgia to know that God loves them.  For Jake to have strength enough to keep his oxygen level steady overnight, so we can all go home tomorrow.  Lord, send your angels.

Answers to prayer...

Today has been an amazing day.  Today has been an answer to prayer, in multiple ways.  Today we tried something different, and while we weren't completely successful, it was far from a failure.  Today we did this...

Guess what's missing from this picture?

That old stinkin' NG, that's what!

Because his last two scheduled echos have been cancelled, and the prime suspect for his congestion/cough has become his NG tube possibly blocking his sinuses, and because Jake rubs at the tube a lot trying to get it out of his nose, and because Jake has developed his eating and drinking skills further in the last month we wanted to give it a trial run with no NG and see what would happen...

Here's what's happened:

He has eaten:  half a slice of french toast, 2 slices of watermelon, 2 mini banana muffins, 12 goldfish crackers, 2 tablespoons of yogurt, a 4 ounce fruit pouch, 1/4 cup of fried rice, and 6 crackers.

He has drank orally: 76 ML TOTAL so far today.  Our goal was 60 ml, and by suppertime he was actively asking for his liquids.  On his tray at supper he had 3 sippy cups - water, chocolate milk and chocolate pediasure.  To put in in the perspective of the big picture, Jake takes 900 ml daily through 4 NG feeds so there is a long way to go yet.  However, I don't think this achievement should be minimized - he drank, all by himself, 2.5 ounces today.  So proud of him, and so thankful to God and our prayer team for helping this happen.  THANK YOU for the prayers and good thoughts.  You rock.

The downside: He has had no wet diapers and no bowel movements, so we know he is headed towards dehydration now.

The NG will be put back in right before he goes to bed, and we'll do a full feed slowly while he sleeps so he can start to regain normal hydration again.

But we got an answer to prayer - he drank more than 1 ounce on his own in one day.  He can do it.  You go superbaby!

I couldn't have done this for the first time without the emotional and moral and "jumping up and down and keeping the baby happy" support of my Mom.  Love you Mom.  Let's do it again next month? :)

Jake is not ready to be feeding tube free yet, but today has proven to me that he can eat and drink more than we think he can.  I believe his refusal to drink is behavioural.  It's a learned behaviour resulting from having his tummy magically fill with milk at set intervals during the day, thanks to the hated NG tube.  But I'm feeling resolved now, and armed with the knowledge that he can drink more - Jake and I are in this together, and we're going to start increasing those oral feeds more and more.  We are.  Yes!

Look at the excellent drinking form he has here, something for Jake's I Run 4 buddy Laura to be excited over!

This morning, around 10 am I received two more answers to prayer.  I can hardly contain my excitement about both of them, but they each come with their own anxiety as well.  First and foremost...I am so unbelieveably happy and excited to say that this morning Jake was given his last Enox needle (for the forseeable future at least!).  His last needle.  Done.  Finished.  See...

The chalkboard on his bedroom wall where we record his Enox dosages looks like this...and we don't have to check off PM today, or any other day for that matter. When I heard this my first thought was no...we can't do that...it's not safe.   But SickKids has now determined that the risk of him getting a bleed from being on a blood thinner is much higher than the risk of his left pulmonary artery forming a blood clot.  They are both risks, but in a complex child like Jake the risks are weighed and the less risky road is followed.  The path for Jake has now shifted, and he is going to transition to a low dose aspirin later in the week.  Oh my Lord, I am so thankful for this answer to prayer.  No more gritting my teeth and listening to my baby cry while tears stream over his beautiful cheeks because we have poked his arm or leg with a mean needle.  It's done.  I am so thankful.  Check out the bruises he is currently sporting on one arm from this torture...

Now these are going to heal.  Thank you Lord for that.  But at the same time, please protect Jake from blood clots - help us to see the signs early if one begins to occur.

And then, another answer to prayer...this has been a blessed day.

The cardiac surgeon at SickKids has agreed to move Jake's pacemaker, and put in a G Tube.  We're soon going to be losing the NG for good.  The g tube will provide a less torturous way for us to keep Jake nourished until he figures out this drinking thing.  It's major abdominal surgery, anaesthetic and comes with it's own set of risks and possible complications, but given the new complications we are having with the NG it seems like the best and safest route for Jake in the meantime.  So now we await our appointment, but we will be likely travelling to Toronto for this procedure sometime in September.  I'm happy and excited about this too, but also concerned about the surgery and the recovery period, and more upheaval for Georgia.  Please keep big sister Georgia in your prayers in these coming days, as she will be adjusting to kindergarten and then likely having us leave for an unknown period of time in the same month.

So wow.  What a day.  I can hardly wrap my head around it all.  But I'm proud of Jake's accomplishments and I'm thankful to God for His goodness and grace.  Like the Psalmist said in chapter 107, "give thanks to the Lord for He is good, His steadfast love endures forever."

I'm going now in search of a calm cup of tea and a moment to process the day...I'll leave you with my boy and his beloved blankie...

#lauraruns4me

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:

http://accidentalpurpose.com/the-only-question-that-matters/

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.

http://www.whoirun4.com/

  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?

 

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!