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.

The Glenn and Fontan operations - Video

This is the best video I have found that explains the Glenn and Fontan operations.  Jake is post-Glenn and waiting on his Fontan.  Note: Jake does not have HLHS, as featured in the video.  He is single ventricle, but it's the opposite ventricle that is hypoplastic in Jake - Hypoplastic Right Heart.

Mending Broken Hearts

Check out this story from Eastern Health featuring Jake and his friends!

http://storyline.easternhealth.ca/2014/02/28/mending-broken-hearts/

I'm alright with that.

Thanks to the Heart and Stroke Foundation in Newfoundland, I was able to attend a Heartsaver/CPR course offered free to heart parents for the month of February.  I've done CPR every two years for at least the last 15 years of my life but this time I learned more than I ever had before.  I'm sure of it.  In my mind, the dummy I was practising on could have been either of my children, and Jake was foremost in my mind because of the uncertainties of his little heart.  I'm thankful for the opportunity to do the course, but pray to God that I never have the need to use the knowledge from it.

Jake is working a new skill this week...he wants to crawl...Here's as far as he has gotten :)

Jake just finished his lunch and I'm happy to report that he ate two thirds of a banana.  That's my boy, all topped off with some cheerios :) Jake has expanded his solid food menu to include: toast, cheese, cheerios, yogurt and carrot - all in very tiny chunks and small amounts, but it's progress! On the liquids front there is nothing new to report.  I can sometimes get 10ml or so of formula or whole milk into him, from a sippy cup or occasionally a few sips from a bottle.  It's uphill work, but I'm not giving up on him.  Jake can do it, and he will - in his own time.

Check out this photo from this morning.  Georgia was playing in the backyard and Jake loved watching her:

 

Tomorrow Jake is having a CT scan instead of his usual monthly echo.  This is necessary before our G Tube discussions can go any further, and it gives a much better image of the heart than a standard echo.  This will be Jake's first CT scan at the Janeway, but he has had 4 at SickKids.  A MRI would be a better and safer option for viewing Jake's heart but because of his pacemaker that's not possible.  I have a deep seated fear of CT scans because of the large amount of radiation they place on Jake's little body.  A CT scan uses 10 times the radiation of a x ray, and repeated scans before the age of 15 increase the child's risk of brain tumor or leukemia.  The risk is highest for head CT scans, and thankfully it's not Jake's head being scanned.  But I'm not going to borrow trouble for tomorrow.  Right now the scan is necessary, and I will focus on getting Jake through that and hope for positive results.  If you are reading this and you believe in the power of prayer will you say a prayer for Jake, that the results show positive things heart wise?

I had a lovely reminder last night, of the wisdom of Psalm 91.

Psalm 91

1 Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.
2 I will say of the Lord, “He is my refuge and my fortress,
    my God, in whom I trust.”

The emphasis on certain words is my own, as my wonderful Mom caused me to look at these verses in a new light at a Ladies Night Out event last night.  As I have done so many times before, I'm placing Jacob in the shelter of the Most High, and in the shadow of the Almighty.  I'm feeling confused and disappointed with our journey to a g-tube, but it's all in God's hands.  Even more than that, the CT scan tomorrow and its results rest in the shadow of the Almighty.  And I'm alright with that.

Can you help?

It is amazing to me that of the 636 paediatric heart operations SickKids performed in 2013, 4 of those were on my son.  3 open hearts and one pacemaker implantation.  Forever indebted to SickKids.

My social media life has been focused on Congenital Heart Defect (CHD) awareness since the beginning of February.  It has monopolized my Facebook, Twitter and blog postings because I want the masses to know about this monster and to catch a glimpse of the battles my baby boy has overcome and is fighting daily.  I have even taken part in a small interview for an article to be posted on the local health authority's blog.  At the beginning of the month I was overwhelmingly excited for this opportunity to connect and share with other Heart Moms and everyone who cared enough to read my post or click a link!  Now we're getting towards the middle of the month and I'm not quite so excited any more.

I'm proud to be a "Heart Mom" and I sometimes submerge myself in any and all related news articles, blogs, statistics, research reports and so on.  This is my first February/Heart Month as a mother to a baby with a CHD, so I welcomed the barrage of information and other families that I could relate to.  With the good stories and improving statistics also comes the negative side - stories of babies and children who have lost their fight with CHD, blogs and articles written by Moms and Dads who want desperately to raise awareness for their little fighters or CHD angels who have already passed on, the statistics, words and phrases like "no cure" and "palliative care" which it turns out that I am not the only parent hearing in reference to their child.  It's a scary world out there on the internet for parents who seek understanding and information  in relation to their sick child.  All of the information that I am finding is laying a heavy weight on my heart this month.  I have said this so many times to people who look at Jake pityingly when they hear his story, and I will say it again now.  Jake is perfect to his family, and none of us would change a second of the sadness, stress and fear if it meant that we would no longer have Jake in our lives.  Do I want Jake to be healed? YES! And I want to give him the opportunity to be happy and live his life for as long as he can - whether that is 5 years, or 100 years, and raising awareness is one of the ways that I can strive to make this happen.



 One of my biggest secret fears as a Heart Mom who believes in the healing power of God is that Jake has not been healed because my faith is not large enough or strong enough.  I have doubted, and I have had moments when I felt too overcome with pain and sadness to talk to God about it, and there is a significant part of my heart that wonders if that is the reason that Jake has not been given a whole heart by some miracle.  It's hard for me to even type that, much less share it with the world.  Maybe by sharing it I will be able to relieve some of the burden on my own heart - it's a hard conversation to have with anyone and especially with God.

Here's a photo of myself and Jake waiting for the technician to come and draw his blood to check his Anti Xa level...Jake was all smiles until that needle was rooting around in his arm:

While we're on the topic of blood, do you know that Jake has had at least 10 blood transfusions in his life so far? I say at least because we are unsure how many transfusions were given during his Norwood and Glenn procedures.  A stat from the Heart and Stroke foundation's website says that five donors are needed for the blood required for an open heart surgery.  I have watched Jake lie in a hospital bed and be incredibly sick, and then receive a blood transfusion and within 24 hours he has made an amazing recovery.  So I'd like to challenge those reading this post.  If you are physically able, and there is no medical reason for you not to participate, will you consider making an appointment with Canadian Blood Services to donate blood during Heart Month? Appointments can be made online at www.blood.ca . I wouldn't ask you to do something that I am not willing to do myself - I will be donating blood next week, and will post a picture when I make it happen.  Donate blood and let me know, and I will keep a tally of how many have given blood in Jacob's honor.  I'm setting a goal of at least five donations - enough for one open heart surgery patient.  Two of those are taken care of, between myself and my Dad - who else is willing to help out?

February is more than valentine's, roses and chocolates...

Today is February 1.  February is Congenital Heart Defect (CHD)  Awareness month.  Before Jake I had no idea what a CHD was, other than knowing of one baby on my husband's side of the family who had been born with a CHD but lived in the US and I occasionally read updates on his parent's blog (Porter is doing great, and is now a big brother to little Joe!).

But on a morning in early December 2012 the world as I knew it shattered.  Lying on the examination table for my 21 week ultrasound, as one technician turned into two technicians, which turned into two technicians and a doctor, then two technicians and two doctors...none of whom offered a word of explanation as I lay on the bed knowing something was terribly wrong and tears streamed down  my face.  I'll never forget the look on Jon's face as he strained to make sense of the technical terms being tossed around, and the images that he could see on the screen.  After an eternity we were finally told that our baby was a boy - but that there was something wrong with his heart.  The term Hypoplastic Left Heart Syndrome was given to us, and we were told to come back in two days to see Janeway cardiology, Maternal Fetal Assessment and Janeway Genetics.  Jake's diagnosis of HLHS turned into Double Inlet Left Ventricle and Hypoplastic Right Heart Syndrome a couple of months after that day when we made our first trip to SickKids to see the fetal echo cardiologist.  At 32 weeks of pregnancy during my weekly echo we discovered that Jake had also developed Complete Heart Block, a condition that often results in a fatality if developed in the womb.  At 36 weeks pregnant we heartbrokenly left our 4 year old daughter behind with her grandparents and stepped on a plane to Toronto to wait for Jacob's birth.

Flash forward to today, when I just laid my sweet, smiling, almost 10 month old boy into his crib for the night.  Today I know what a CHD is.  I know this monster inside out, because it constantly threatens to steal my baby boy from me.  Here are a few of the things I now know about this horrible monster:

1. Congenital Heart Disease is the most common birth defect, affecting 1 in 100 babies.  That amounts to a baby  being born with a CHD every 15 minutes.

2.  Congenital Heart Disease is the leading case of infant death related to a birth defect.

3.  Of the types of Congenital Heart Defects, single ventricle defects are among the most complex and challenging forms of defects to treat.

4.  Congenital Heart Defects are more prevalent than all types of childhood cancer combined.  Research suggests that it is up to 60% more prevalent than childhood cancer.


Those are a few quick facts that sum up hours that I have spent in research and reading since Jake's diagnosis.  But here are the real facts.  The living, breathing, breath takingly beautiful facts:

Jacob Rene James Anstey  is so much more than a broken heart.  Moments after his birth, before I got to hold him in my arms or kiss his sweet face and after receiving two iv's to administer lifesaving medication, Jacob's father took this picture.

Four days later Jacob was dedicated back to God by his grandfather.  We listened to the words and prayed with all our hearts for healing, knowing that the following day Jacob would have his first open heart surgery.  Georgia met her brother for the first time and held him in her arms and told him that she loved him.  

At five days old, Jon and I held Jacob through the early hours of the morning until the time came for us to walk him to the OR.  I felt like I had ripped my own heart from my chest and laid it on the operating table, and I would gladly have done that if it meant that Jake's heart would be whole.

I truly believe that God guided the hands of the surgeon that day.  At six days old Jake was rushed back into the operating room for another life saving open heart surgery.  Once again God saw him through it.

Flash forward to today, when I just laid my sweet, smiling almost ten month old boy in his crib for the night.  3 open heart surgeries, one cardiac catheterization, two pacemakers, 9 months with a feeding tube, countless meds and twice daily injections later.  Our home is filled with love and hope.  But there is also fear.  Fear that this monster known as CHD will hurt our boy more than it already has.  There is no cure for Jake's broken heart.  But 20 years ago Jake's heart was a death sentence.  Today there is hope thanks to research and breakthroughs in the medical field.  In another 20 years there may be a cure.  I believe.  When I hold Jake and feel his strong half a heart beating through his chest - I believe.  I will make every month CHD awareness month for my son.  

Look at him now.  Jacob Rene James Anstey is God's child, and he is defying the odds every single day.