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!

Happy 1st Heartiversary Jake!

The Lord heals the broken in heart, and binds up their wounds

- Psalm 147:3

Today is the first anniversary of the day the healing interventions began on Jake's heart.  One year ago today Jon and I got up in the middle of the night and walked from Ronald Mcdonald House to SickKids to hold our baby for a few hours before handing him over to the surgeon to be operated on.  Thinking back on those sweet hours I remember that we always kept coming back to his perfect chest, with no scars or wounds, knowing that it would soon be wide open.  Here are two of the very few of the pictures we have of of Jake's perfect chest:

Today that same chest looks very different, but it marks Jake as a survivor.  One of the quotes I love now says: "From every wound there is a scar, and every scar tells a story; a story that says, I survived!" Those of us who are Heart Moms are doing our best to have our children feel proud and confident of their "zipper", and I dream that one day teenage Jake will be baring his chest with pride when he goes swimming with his friends.

The 8 hours we spent in the waiting room on that day were incredibly long.  Being only 5 days after a c-section I was quite sore and swollen and as if the post pregnancy hormones were not enough, here I was handing my son over to stranger knowing that there was a 20% chance that he would not come back to me alive.  I spent most of the waiting time holding on to one of Jake's little hats, a white bunny hat, stroking it and draping it over myself as if having it on me could make me feel like part of Jake was on me too.  Only those who stayed with us at Ronald Mcdonald House during our two months there will know that I also slept every night with this same hat draped next to my head on my pillow and one of Jake's recieving blankets that smelled like him covering my chest.  Without these two items I was unable to relax enough to get any sleep.  Jon and I had Mom, Dad and Georgia for company during that long wait, and for that I am so grateful.

Then...after eternity of waiting...the surgeon walked into the waiting room looking for us...

One thing we have learned about Jake's amazing surgeon is that his facial expressions give no hint of whether the news is good or bad...and after telling us that Jake was doing fine, he mentioned that the surgery had been further complicated by the shape of Jake's archway, which made reconstruction difficult and tedious.  This same "difficult" archway would lead to Jake being taken into emergency surgery the following day, but at that moment we had no knowledge of that possibility.

Jake's recovery was long, and full of ups and downs, which I know I blogged about several times over our stay in Toronto.  I am overwhelmed and humbled by how great my God is - and know that it was his hand that guided the surgeon and other team members through his two month stay in recovery from the Norwood, emergency open heart, and pacemaker implantation.  I have learned the hard way, how to praise God in the storm.  The first verse and chorus of that song are perfectly written - it was as if it had been penned just for me in those moments...

I was sure by now

God You would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say "Amen", and it's still raining

As the thunder rolls

I barely hear Your whisper through the rain

"I'm with you"

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

[Chorus:]

And I'll praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I've cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

Tonight we are celebrating Jake's first heartiversary, as it is known in the CHD community.   We even have a specially made half heart cake for our superbaby.  It was made by Cakes by Christa, and I highly recommend her if you need a cake for a special event! If you know a little about Jake's anatomy, you'll appreciate that this cake shows the left side of a heart which is Jake's normal sized ventricle.  Jake's right ventricle is hypoplastic, and very small, which is where the half a heart analogy comes from.

Happy Heartiversary sweet boy!

Happy 1st Birthday Superbaby Jake!

April 4 is Jacob's birthday.  As of 1:43pm today, my superhero is a one year old.  I've been so emotional this week, and today especially.  It's a huge milestone for us.  I remember not that long ago sitting in SickKids hospital praying for Jacob to live, to have a chance to be happy and to reach his first birthday.  My prayers were more than answered.  Jake is the happiest, sweetest little boy I know.  When life hands him lemons, they usually take the form of hospital visits, pokes and prods and needles; but this boy makes the sweetest lemonade.  Happy birthday, my darling.  We love you so much.

This past week Jake was hospitalized for 2 days because of a virus.  The swab results came back today to show that it was not RSV, thankfully.  I wound up taking Jake to the emergency room twice on Monday, first in the morning and then again at night.  At the night visit we were admitted because of low oxygen saturations.  Jake was needing help fighting off this virus.  Jon and I spent two days/nights with Jake there, thanks to my sister, Mom and Dad for watching Georgia and to a great neighbour for helping take care of our dog.  Of course, this all had to take place during one of the largest storms we have had this winter.  Never a dull moment in our lives!  He's doing better today, still coughing and lots of runny nose fluids, but our happy baby made a reappearance on Wednesday when he was discharged from the Janeway.

I took this video of Jake when he came off the oxygen at the hospital, and was starting to act like himself again.  Prepare to be charmed by Mr. Peekaboo!

https://www.facebook.com/photo.php?v=10153979763470611&l=6547405411324676975


Jake`s first birthday gift today was an echo with our favourite cardiologist, Dr. T.  Looking back over the events since Jake`s diagnosis, this doctor is one of the people I am most thankful for.  I truly believe that she was meant to be Jake`s cardiologist, and that the bond that has developed between her and my family is a gift.  The latest update on Jake`s heart is that his Left Pulmonary Artery appears to be growing with him, although it still remains about 50% smaller than his Right Pulmonary Artery.  To be more specific, his RPA is 8 mm, and his Left is 4.5 mm.  It`s a drastic difference, but so far there has been very little change except for the growth that it has made in the last six months.  We are still keeping a very close eye on that, but there is good reason to believe that it may hold it`s own until Jake is due for his next open heart surgery, the Fontan procedure, when an attempt to correct the issue can be made.  Until then, we`ll eat cake and be happy...

I`m so thankful for my children.  Georgia has become the best big Sister that Jake could have.  We were at a playgroup a couple of weeks ago, and Georgia and Jake were sitting on a  playmat when another child came over and reached out to touch Jake`s feeding tube.  Georgia leaned over and told this little girl  "You can`t touch him...you have germs"! Honestly, I kid you not.  I am so impressed with her.

Claire's 3rd Annual Craft Fair was a big success, the numbers from the event were that not including children under 12, 450 people came through the doors that day.  Our local NL Heart Support Group was there with an awareness table, to help spread knowledge of Congenital Heart Defects.  Here are a few pictures from that event.  I am so proud to have been a part of it, and hope to make it a regular part of our life to spread CHD awareness.  Baby Jake was representing there, too!

Tonight we are celebrating Jake's birthday with family, and next weekend we are having a Superman party with all his friends.  We have so many reasons to celebrate and be thankful, so that is what we will do!

Happy St. Patrick's Day!

Coming full circle.

Planning for Jake's 1st birthday celebration is well underway, and I had another moment of realizing how great the people around us are when Terry Rielly, the Teddy Bear Man himself, contacted me and offered to  perform at Jake's party.  The kids are in for a real treat, I think!  It's a Superman party for Superbaby Jake!!!

 I've been spending a lot of time thinking back to this time last year...At this point I was already off of work because of Jake developing Complete Heart Block and the risks associated with that.  I was being seen for an echocardiogram and 3D ultrasound at the Maternal Fetal Assessment Unit of the Janeway 3 times a week - every Monday, Wednesday and Friday.  I spent hours upon hours there, and always had a cup of tea afterwards at the cardiologist's urging that this could help speed up Jake's heart rate.  The kindness shown to to me and Jon and our extended family by the ladies of MFAU will never be forgotten, and every time I walk by the entrance to the unit I'm overwhelmed again by how special they are.  At this point I was packing my suitcase in preparation for getting on a plane to TO at 36 weeks pregnant to wait for Jake's birth.  Jon and I were taken in by Heather and Aliyah and stayed there until we were advised to move closer to Mt. Sinai as Jake's arrival became imminent.  We shared a lovely couple of days with Mom and Dad and Georgia at an hotel across the street from SickKids before delivery day arrived and this saga truly began for our family.  It seems like just yesterday that I was waddling around downtown Toronto scared to death for my baby, but also as ready as I could ever be for the experience.

And now...My 11 month old is crawling around my living room with a smile on his face.  We have been so blessed.  So truly blessed.  Click below to view the first video we got of his slow and steady crawl...

https://www.facebook.com/photo.php?v=10153905733895611&l=1731290119426268774

My last couple of posts have been vague concerning Jake's feeding issues and his potential g tube surgery, but not intentionally.  I didn't have enough information to really provide an answer.  Now I do - Jake will not be receiving a g tube anytime in the foreseeable future.  Why, you ask? Simply put, because his pacemaker is completely blocking access to his stomach, and SickKids has determined that it is unsafe for the pacemaker to be moved.  It's a fairly new pacemaker, just implanted in September 2013 and it will only be moved or replaced when the battery is low or Jake is due for another open heart surgery which should be happening around the same time.  I've been slowly processing this news, and really my only fear is that Jake will still have the NG when he is old enough to notice that he is different from the other kids his age.    My goal is to give Jake as "normal" of a life as is possible for someone with half a heart.  We've been having some issues with Jake's hemoglobin level being too high, and last month we increased his fluid intake by 10% in an effort to deal with this.  When the level was retested last week it was still high.  I'm not sure what this means, but when our cardiologist returns from the travelling clinic tomorrow, we'll find out.  I'm a little nervous, and hoping it doesn't mean that he needs another med or anything invasive. It's in God's hand though.  God is bigger than the boogie man, like the Veggie Tales characters sing.

One new development with Jake that breaks my heart is that he is now recognizing unpleasant situations.  In particular, the bloodwork clinic at the Janeway and his RSV shot at the day clinic.  At his last round of routine bloodwork Jake looked visibly upset when we went into the room we are always in, and the same technician that we always have walked in.  He started bucking his body up and down on the table to get away from her before she had even taken the needle out if its packaging.  He has NEVER done this before.  Also, he now cries frequently at his twice daily enox injections - when before he would never cry.  I think it's recognition of the needle and anticipation not only of the prick but also of us  needing to hold his arm or leg in place for two minutes while we put pressure on the site.  It's heart breaking.  I don't know what to do to reassure him, and often I am the one holding him down so that pain can be inflicted on him.  This is the hardest thing to ask of any Mom.

Remember baby Sara from  my earlier posts? Here she is hanging out with Jake at our house one night last week.  She is the sweetest little miracle, and getting to be a big girl!

Exciting things are happening locally for Moms of CHD warriors.  We had a very insightful and affirming meeting with our local Heart and Stroke Association, and the NL Heart Parent Support Group is taking part in Claire's 3rd Annual Craft Fair with an awareness booth in partnership with Heart and Stroke Association.  If you received an invite to this fair from me, that's why! If not, the info is below.  Come along and spend a little time on your Saturday taking part in a very important event for a very important cause.  Look for me at the CHD booth!

11 Months Old Today! A Picture Post!

8 AM - Good Morning World!

Got to shake a tail and get to the Janeway for our monthly RSV shot...

Through the crib rails...

Time for my first Enox injection of the day...

Morning cuddles with Sister before she heads to daycare...Momma's whole world is in this picture...

After waiting for an hour and a half, it's now time for the fun RSV shot.  Jake HATES these...

The aftermath of the RSV injection...Poor little man.  He cried for five minutes and then went to sleep....

Exhausted little man having his  morning nap in the car because there is not enough time to go home between appointments today....

There is enough time for lunch with Nanna though!

Back at the Janeway, in another waiting room...Hoping for some good news regarding his G-Tube...Jakey is starting early with a love of Timmies cups....

Another examination table...waiting waiting waiting....

Finally home.  What a long day...Crazy hat hair and time to play, scoot and roll around while Lukey watches...

Yummy supper.  Sweet jaws.

Jakey loves his Daddy.  

Jakey's favourite part of the day...tub time with Sister!

Rub a dub dub...two darlings in the tub....

Momma braves the minus 30 temperatures to have coffee with a friend...Notice the layer of ice inside the door of the coffee shop???

Good night world! Jake's face is red and irritated from the long months of using tape to hold his NG in place.

Sister likes to watch Zig and Sharko before going to sleep...

Momma has the late feed tonight, but there is just enough time to catch a couple of hours sleep before getting up at midnight to feed Mr. Man.  So, goodnight world...stay warm and sweet dreams.