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...

May 12, 2013...

May 12, 2013....

My first Mother's Day as a Mom of two kids.  My heart was aching for my girl who was home in Newfoundland, and my heart was aching for my baby boy who had just been placed on a 7 day Nothing Passes Orally command by the doctors at SickKids.  Jake would spend the next 7 days  hungry and upset and there was nothing we could do about it, as a precautionary measure because his doctors thought he might have a stomach condition called NEC.    Here I am...posing and treasuring a moment of holding my six week old baby in my arms.

May 11, 2014... God is good.  Posing with my beauties after the Mother's Day church service.  My heart was so full of thankfulness and appreciation for the moment.

As I live my life day to day, I find myself measuring moments and special occasions through comparisons.  Not comparison with other people's lives and material things, but comparison with where my family was on that same day/occasion one year earlier.  I'm not sure if this is a normal reflex for a person who has gone through a traumatic ordeal and is now on the other side.  But this is me - it's my norm.  Last year on today's date, May 12, it was Mothers Day at SickKids.  SickKids is a hard place to be any day of the year, but on Mother's Day it was dismal.  My wonderful husband did his very best to make it a good day for me, sending me out to get a much needed hair cut the day before, buying me a watch I had admired on our last visit to the Eaton Center, and walking to the Pickle Barrel in the pouring rain to get the supper I desired for us to eat in the room with our half hearted miracle son.

Psalm 46:10 is the well known and loved verse, "be still and know that I am God"...I was still with this knowledge on May 12 2013, and I am currently still with this knowledge on May 12 2014.  The difference is that on this May 12, I know that He is God much more profoundly than I did on the last May 12 of my life.  I have gone from being a laid back Christian who knows all about God and loves Him, but didn't really need Him all that much as my life was fine and dandy the way it was...to being a broken hearted new Mom who is watching her son being literally opened up and rewired on the inside, and believing in God but not trusting him 100% because no good God could subject an innocent baby to this....to being so thankful to God for delivering my son through so many life threatening moments and allowing us to bring him home for the first time at 2 months old...to today, when I am so dependent on God that I cannot face a single day or challenge without Him - and will be the first to admit it.  Without my faith and my relationship with God, I couldn't face tomorrow.  I simply couldn't bear the unknown and scary statistics about my son's health alone.  The worship team blessed us with a rousing version of Because He Lives on Sunday morning, and the second verse says this:

How sweet to hold a newborn baby,
And feel the pride and joy he gives;
But greater still the calm assurance:
This child can face uncertain days because He Lives! 

This is another one of those songs that I love, but that I cannot sing without breaking down.  The people who sit around me in church, or who are on the platform and can see me must be getting used to seeing my chin quiver on Sunday mornings :)  I've been replaying this one over and over in my mind today, as we approach Jake's monthly echo this Friday.  My child can face uncertain days because my God lives.  Jacob Rene James Anstey can face uncertain days because He lives.  

Baby Owen is scheduled for his inutero surgery tomorrow, please pray for his Mom Grace and for Owen.  My heart is with them, and they will be in my prayers all day tonight and tomorrow.  

Those of you who know me as a germophobe because of Jake will be happy to hear that I have loosened up a little.  Just  a little.  It's been hard, but with Jake now being mobile I've had to accept that I can no longer control his environment completely.  However, if a stranger touches him or coughs/sneezes around him - I can't guarantee that I won't freak out or melt down, lol.  

In feeding and drinking news, Jake has been trying out some new food with limited success, and has....drumroll please....began drinking small amounts.  I have been offering Jake liquids daily for months with no success.  Literally NO success.  And then one day I decided to warm coffee creamer and put it in his cup...and he drank 14 consecutive sips of it.  Amounting to about 1 tablespoon.  And I laughed, then I cried...then I danced, then I called my Mom.  :)  I'm happy to report that we have been having small successes most days since then - up to 2 tablespoons daily of coffee creamer and water.  Rome wasn't built in a day, and in the same tune - Jake won't learn to drink his daily intake of formula in one day.  One building block at a time, but I'm just glad to be started the building process at long last.  

Next week, good Lord willing, we will be taking our first out of country vacation in about 3 years.  Jake is not able to come with us, because we couldn't find an insurance company willing to insure a baby on his dosage of Enoxaparin.  I'm honestly  not sure how I will handle leaving him, as he is an extension of me and has been my whole world for the last 13 months.  But I have to confess that I am looking forward to a little relaxation, a little laziness, and one on one focusing on my fast growing up little girl.   Georgia is going to get to visit Disney for the first time, and I cannot wait to see her face during that experience.  Maybe next time we will have Jake with us, or we'll choose to go somewhere within Canada to take him with us, but this trip to Disney was a promise made to Georgia that was supposed to take place last year before we knew of Jake's diagnosis.  We had made a plan to travel as a family of four to Disney when Jake was about six months old, and then Jake was diagnosed with a heart defect and the bottom fell out of our world.  The bottom is back on our world now, somewhat firmly, and we are going to make good on our promise to Georgia but miss our boy each day that we are away.  I don't know how else to make the best of our family's situation.  And my fear is that if we delay this trip with Georgia in the hope that next year Jake could come too, then next year will be another surgery year for Jake or another setback for Jake, and it will never happen.  We can't wait for a perfect scenario, so we're making the best of the one we've got right now and going for it. 

I'll leave you with this smile...and a virtual hug and thank you for reading about my family's journey, and for every kind thought, prayer and word that has been sent out on our behalf.

It's in you to give...

Look what I was privileged to be able to do this week in honour of another sweet heart baby named Peyton...

Yeah, that's me...the girl who used to be terrified of needles and who would faint at the sight of blood...Apparently I'm not like that anymore - all thanks to my brave heart warrior who has shown me what true strength is.  Funnily enough, the nurse who was with me was convinced I was about to faint and when I asked why she said "well, you never had much colour to begin with!" Oh dear...I may need to hit the tanning beds before going down south next month.   I apologize for the very uncool socks in my Toms, but it was a cold "spring" day and I didn't want to freeze :)  I got to meet Peyton's parents the day before the donor clinic, and they are two very strong and special individuals who have faced incredible challenges for their heart baby, in particular because they are remotely located in Labrador.  I'm determined now that I will be a regular blood donor, every 56 days or so, because it's such a small thing to do that makes a huge impact.  One blood donation can save up to 3 lives...at least 5 blood donations are needed for one open heart surgery...as much as 50 donors can be needed for a car accident...and the shelves of Canadian Blood Services here in St. John's are almost bare....they truly are in desperate need of blood donors.  It was said to me that day that if everyone who was eligible to donate blood made one donation a year, there would never be a shortage.  I'm so excited to say that myself and another Heart Mom have been invited to speak at an event to celebrate the regular blood donors who are receiving certificates in May - I am really looking forward to the opportunity to say thank you to people who have made a difference in this way.  My son would not be alive today if there were not regular blood donors - that is a fact.  Also, our local Heart parent support group -  NL Heart Support Group on Facebook - are now registered to be Partner for Life with Canadian Blood Services. It's so exciting! There was also talk of a possible blood donor day in honour of my own Heart Warrior - I will keep you posted if that amounts to anything!

The Anstey household has been going through a period of adjustment for the past week - we are now a one income family as I have been granted a leave of absence for another year from my work to care for Jake, and Georgia is no longer in daycare.  Since Jon works from home it's quite a full house these days with all of us and our 100 lb dog.  Today was the first day that Georgia needed to come to the Janeway with us for one of Jake's routine appointments.  This was a short one, about 20 minutes long, and by the end of it Georgia was tugging on  my sleeve and saying that this was "so boring".  Oh my.  Here are my munchkins in the waiting room at the Dietician's office:

Even during trying times when I am praying for patience, I am blessed.  So blessed.

Jake has not been gaining weight well, despite my best attempts to give him fatty food.  His milk is still extra fortified, with more calories than normal infant formula, and we have switched from using whole milk in his food mixtures to using 18% m.f. coffee creamer...and still, only 2 ounces were gained in the last two weeks.  At least it's better than the two weeks before this, where there was no weight gain at all.  Come on little boy, we need to fatten you up!

I'd like to ask those of you who are able to fit another baby onto your prayer lists to visit the page https://www.facebook.com/pages/The-Strong-Owen-Fund/501607656617461?ref=stream and click LIKE to be given updates on the progress of another little boy with half a heart.  His name is Owen, and his parents are both Christians who are relying fully on God to help them through this battle - it's still early days as Owen is about 23 weeks gestation at the moment, but there is possibility of surgery in utero before Owen can be born.  Please keep this family in your prayers and thoughts.

Remember baby Sara? I'm so happy to share that she is finally in her home with her parents and from the picture I saw of her on Easter Sunday she is more beautiful and happy than ever.  What a trooper.  Way to go baby Sara (and Mom and Dad!)

I love having happy news to share.

Here are a couple of pictures from Easter sunday - this was Jake's first Easter, even though he was over a year old.  It's funny how that works...last year Jake was born 3 days after Easter Monday...and this year he had his birthday two weeks before Easter Monday...so strange.

Have a great weekend everyone.  Life is beautiful, take advantage of every day - even the rainy ones!