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!

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.