Friday, February 28, 2014

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/


Wednesday, February 26, 2014

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.








Thursday, February 13, 2014

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?

Saturday, February 1, 2014

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.