HLHS

The First 24 Hours – Owen Update

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After 6 hours of waiting, we walked in…not sure of what to expect. I mean, I had images in my mind of what he would look like, after all, we had waked into the CCCU 4 times prior post-surgery. But this time, he was no longer a baby. This time he was a 6 year old boy.

The boy that was wheeled into the operating room high on medaz, laughing and giggling was switched with a boy, covered with tubes and wires, seemingly struggling to take every breath. He was, for the moment still, excepts for his gasps. Then he started writhing and ripping at tubes, punching the air and his eyes were filled with panic. We immediately went into CCCU Mode. Every instinct to grab and pick up your child is ignored, you push your emotions to the side, you become a medical advocate for this child in front of you. What medications are being pumped into him? What are his vital signs? What is being done for pain? What is the immediate plan? Is this in-drawing normal? How much O2 is he on? After a few moments, he stopped, almost as suddenly as it started. After a short ten minutes of peace, he once again began writhing. It was indescribably painful to watch. I had to fight off my own panic to help him calm down and settle.

Owen has been through so many procedures in the past that the sedatives are no longer as effective. He is much more alert and aware then the majority of kids who have just had major reconstructive heart surgery.   They could no longer give him sedatives…as he was beginning to have apnea-like spells, signalling that if he received anymore medication, he would stop breathing altogether and have to be intubated. He was breathing through his mouth and his lips were beginning to crack and split. You could see his tongue and mouth were completely dry. Occasionally he would suck a few drops of water from a sponge.

This is how our night began. Every 10-15 minutes he would awake in a panic. At one point in the early morning hours he had kicked off one I.V. resulting in the foot of his bed covered in blood. Every time someone spoke or walked into the room he would bolt into the air. Ripping at the central line in his neck causing it to ooze blood.   We quickly learned, that when he did wake up, our face was the first thing he had to see, otherwise, calming him from his hysteria was much more difficult. I took first shift, I am by nature a night owl and the late shifts were always mine. Brian, is an early bird so these shifts work well. There is never a moment that Owen is without my husband or myself while in the CCCU. By early morning, Owen was so exhausted that his bouts of sleep were stretching from 10 minutes long to 20 minutes. Though, every touch would cause him to jump. Any sudden noise would wake him. We had assumed as many nursing duties as we were legally allowed to do. The lights were dimmed and everyone spoke in barely a whisper. All to make this, the first 24 hours post op, as painless as possible.

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Laura 

Stay tuned next week for Laura’s next post about Owen’s recovery progress.

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Brace for Impact

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The parents of kids with complex congenital heart defects will know all too well the following post. I am very aware that I am not alone. I am not the first parent to experience it, nor will I be the last. That does not give me any comfort. Doesn’t make me feel any less alone, any less unprepared, any less scared out of my skull.

Owen’s defect requires staged surgical interventions for survival. The first is done at birth, the second around the 6 month of age mark and the last at 2-3 years of age. This past June, Owen turned 6…he has yet to have the last stage. His heart was never strong enough to endure the final stage. Truth be told, his doctors never believed it would be strong enough. His function was so poor that we were all waiting for the decision to “list” him for transplant. Then, after a little perseverance and some awesome heart function medications, Owen’s heart function is ‘adequate’. This means he has been approved for surgery. Insert P-A-N-I-C.

These past few years of waiting and hoping for this heart function to improve has been gut wrenching. We had come to accept transplant as Owen’s future. But since birth, we have been told everyone is better off keeping what they were born with for as long as you can. Most people do not realize the complexity of transplant. The ramifications and the side effects, the difficulty of finding a heart that is the correct size, right type, and the precise concoction of antibodies.

But, then, with guarded confidence, it was decided he would have the final stage…the Fontan. My hand shake as I type this. He is 6…he does not remember his last surgery. I have memories of when I was 6. Owen’s sister is 11 and brother is 9. I do not need to tell you that chaos of emotions, worries, questions that swarm in my brain each and every moment. Our intention was to tell the kids after the holidays….let them enjoy time with family and friends without the cloud of angst his father and I feel. Our eldest found out by accident. The look on her face spoke volumes, “But I thought he was done?” The truth is, Owen will never be ‘done’. There will always be the next thing…

We are on uncharted territory. I have done all I know how to do to prepare to explain to Owen and his siblings. I have read books, articles, sought resources and support…..but nothing that will promise them everything will be ok. Nothing anyone can say or do will promise Owen that he will not feel pain, that he will be able to run outside, or go to another Monster truck show. No one can promise Emma and Gavin that their brother will come home unscathed…or that he will come home at all.

This is our reality. We do not know anything different. But as a family, we have learned to pull together and power through. We have done our best to prepare the kids the best way we know how. We know that things will get worse before they will get better. We are walking straight into the the thick of the battle with every weapon we have. We are braced for impact.

Laura

Laura is a regular blogger for Cardiac Kids. Check back regularly for updates about Owen’s surgery.

Marathon Friends

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Friends and family are a lifeline and pillars of support when faced with seemingly insurmountable obstacles. I have always said (as have many others) that weddings and funerals bring out the best and the worst in people. This adage also applies to having a sick child. My family and I have been very lucky to have a large circle of support to help get through our struggles with Owen’s heart. I don’t just mean the big things either, like child care for my older children or preparing meals on a daily basis, even the smallest of acts of kindness can make the biggest of differences. An extra large coffee in the surgical waiting room can do wonders. The support does not end out of the hospital. For babies born with congenital heart defects, their battle is life long. There is no cure. Their journey, their life is the ultimate marathon. We have some truly amazing people in our lives that have been there for the long haul.

But then….there are those extraordinary people who turn up and write a children’s book about your child to raise funds to help your cause. And that is exactly what happened to my family.

I met  in grade 7 (only a few short years ago). We remained friends all through junior high and high school. In fact, she was the one who introduced me to my husband (again, only a few short years ago). As with most of my school friends, we lost touch in university being separated by cities and provinces. But then along came the Facebook era and we were reunited.

And then Owen was born. My life became a whirlwind and still is. So, Emis asked if she could write a book about Owen. Honestly, I never really thought about it much. I was like, “Sure”. Fast-forward a few years and the “The Mighty O” is officially launching.

To say that I am grateful would be an insult. There are no words to describe my feelings of gratitude and awe. The amount of time and energy put into this project is astounding. I have literally contributed only by giving birth to a very sick little boy. She has taken this project from just an idea to publication. Emis, and project “The Mighty O”, have partnered with Cardiac Kids to bring her little book idea to fruition and ready for sale.

I am ecstatic to announce that, as of October 24th, 2014, “The Mighty O” will be available to be purchased. All proceeds from the sale of this book will be going to SickKids Foundation and Make-A-Wish Canada in honour of Owen’s battle.

For more information you can “like” us on Facebook or to order a copy, contact: emisakbari@gmail.com

On-line sales will be up and running soon and I will do my best to plaster that site everywhere!

Laura 

Laura is a regular blogger for Cardiac Kids, to learn more about her and read Owen’s story click here 

354 Days

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When I first joined as a part of this blog, I didn’t realize how difficult it would be to conjure up posts. Obviously, my last one was spur of the moment – I emailed it to Meghan and asked her to replace my original post, which was meant to be as an introduction of Elentiya’s journey with CHD. I never dreamed that I would have had to write a post about another Warrior earning his wings.

A month after Strati passed away, Elentiya was admitted to 4D for the fourth time in her short life; it was the hardest admission we had have to deal with. A month after we stood by our friends as their little boy fought heart failure, we were suddenly in a similar situation. Elentiya was diagnosed with Acute Heart Failure, and the fear was real. We had seen Strati fight so hard with his own heart failing, and the fight to have him listed for a transplant, and here we were, no longer being followed by the Single V team, but being switched to the Heart Function team.

Acute Heart Failure. I had a family member say to me, shortly after we announced the diagnosis, “it’s not as bad as it sounds, is it?” and I honestly didn’t know how to reply. What part of those three words doesn’t sound bad? And what, of the things that come with it, isn’t as bad as “Heart Failure” sounds? Things were supposed to get easier after Elentiya’s Glenn; at least, that’s what we were told. That was how things normally went. But, as my parents put it, Elentiya is like her mother: she doesn’t do anything the easy way, and when something happens it can never be a small occurrence – it has to be the whole shebang.

I have had days, especially recently, where I want to throw in the towel. My life is so far from normal; so far from what I thought it would be at almost 23 years old. Don’t get me wrong, I love being a mother, and I seem to have found my passion through the CHD community, but this road isn’t an easy one by any means. In fact, some days just seem so hard that I wonder what I did, or who I upset, to be dealt this hand. What did I do to have my only child be born with such a vital part of her body fight against her? Why did I bring Elentiya into this world, when all she seems to do is suffer? Those are the days I feel sorry for myself; the days when I see other people doing normal people things – going out, getting an education , working… Things that I don’t get the luxury of doing anymore.

On August 15, 2014, Elentiya was listed with the Trillium Gift of Life Network for a heart transplant.

My biggest fear, from day one, was that my beautiful little girl was going to need a new heart. We all know how having a CHD is so limiting and terrifying, but the concept of giving her a new heart… That goes above and beyond the simplicity, if you will, of HLHS.

On August 15, 2014, all of my biggest fears in relation to my daughter and CHD became real. I should have been relieved that she was successfully listed for transplant – a new heart would mean no Fontan. It would mean being able to take trips to places like Disneyworld. It would mean being able to be “normal”: I could put Elentiya in daycare and follow my dream of becoming a Cardiac Nurse (that shouldn’t surprise anyone, by the way; I am, in a sense, a pseudo-nurse as is.) What is the normal way that someone should react when their biggest fears are right there in their face? I cried. I was angry. I was sad. Most of all, I was terrified. We had been given a 1 in 4 chance that Elentiya won’t make the 9month-1 year+ wait for a new heart. And that’s with her being on the milrinone to keep her heart as healthy as can be. How could I – how could anyone – not be scared with those odds? “A 75% chance of surviving is a better way to look at it,” is what I’ve been told, and I absolutely agree. But people need to understand – Elentiya is 1 in 100. Elentiya having HLHS was a 1% chance. One percent. Tell me how one can focus on the bigger, more positive number, when the smallest and worst number is the number their child was given?

But enough feeling sorry for myself. It is what it is, which seems to have become my motto. Elentiya needs a new heart – a new life, even – and all we can do is wait for it.

In the meantime, she is being “optimized” by her entire team. Her OT is working with her every day, and she is meeting milestones above and beyond what we expect of her. She’s been put on 1.1 kCal for her feeds, and because she is doing amazingly with “real” foods now, she is being cycled over 18 hours, which means she has 6 hours in a day where she doesn’t need to be “plugged in” to her g-tube.

On those days where I find myself struggling to smile, or more often, struggling not to cry, I look at my daughter and realize how amazing she is. She has fought every single day of her life, and she will continue fighting, even after she receives a new heart. She is my biggest inspiration. She is my Hero.

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I wrote that blog just over a month and a half ago, and a lot has changed since.

Three hundred and sixty-five days ago, Jon and I welcomed a little Blessing in the form of a 6lb 1oz baby girl, with big blue eyes and a head of blonde hair. In many ways, Elentiya was perfect.

Eleven days ago, on September 19, Jon and I said good-bye to that same little Blessing.

From the very beginning we had said that this battle was Elentiya’s to fight, and we would fight alongside her until she couldn’t anymore. We said we would know when she couldn’t do it anymore. We knew.

I don’t think it’s important for me to go into detail about what happened during her last few days. Those last few days didn’t define our daughter. The way she was, full of character and amazement… Elentiya defined herself.

She went peacefully, just so everyone’s mind is at ease. We all did everything that we could, her little heart just couldn’t handle it anymore. I held her, and she held her daddy’s hand, right up until she took her last breaths.

I think it’s a normal reaction to question things as time goes on. If she had been listed when we wanted her to be, would it have been different? If we hadn’t pushed her to be on cpap, would it have been different? Why couldn’t she have waited for her first birthday?

The truth is, nothing could have changed the outcome. And I can truly say I wouldn’t have wanted anything to change.

Elentiya touched a lot of hearts. She is mourned and missed by so many people. It’s true that we said good-bye to her, but in the grand scheme of things, she never went anywhere.

From a personal standpoint, my daughter is everywhere. She is the breeze that surrounds me on a cool day. She is the sunshine that warms my entire being – inside and out. She is the smile and laugh of all the other children I see. She is truly an unbroken spirit – the force that drives me to be more than I am, and do more than just what I plan to.

I miss her terribly. I watch her videos, look at her pictures, smell her clothing… I do cry at least once a day. The tears are both joyful and heartbroken. I’m happy that I was given the chance to be her mother, and to learn and grow with her. But I’m also sad to know that I will never hold her again, or see her start school.

You don’t have to apologize to us when you see us. Truth is, there’s nothing you can say, and I’d much prefer it if you just gave me a hug and asked me “what’s next?”

Jon and I will be going on a vacation in the upcoming weeks. Somewhere warm, where we can relax and come home again with a clear mind. We’ll take some of our daughter’s ashes and sprinkle them in the sea. She always loved swimming, and now that way she can swim for as long as she wants.

I’m carrying on with my plans to become a Cardiac nurse. Starting in January I’ll be taking the Pre Health Science program at George Brown, to prepare myself for 3 years of nursing school. I promised Elentiya that I wouldn’t give up on my dreams, and that I would help children just like her, and parents just like us.

In the end, Elentiya gave me purpose. She taught me not to sweat the small stuff. She showed me what it’s like to feel a happiness so strong that it swells up inside of me. She left me with a promise that I will never be the same person I was three hundred and fifty-two days ago. Similar to the tattoo of her name that is on my wrist, Elentiya has left me with an eternal mark, an undying love for someone who loved so unconditionally.

You are my Sunshine,

My only Sunshine.

You make me happy

When skies are grey.

You’ll never know dear

How much I love you.

Please don’t take my Sunshine away.

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Elentiya Noctua Elena Sokoloff-Lefevre
September 30, 2013 – September 19, 2014

Caitlin

Caitlin is a regular blogger for Cardiac Kids, to learn more about her click here.

Please check back next week for a special post from a guest blogger.

Compassionate Care

Today I want to tackle a subject that has haunted me for many years.  When my daughter was born with HLHS, we were given three options, a heart transplant, three open heart surgeries or to do nothing and let her die, also called compassionate care.  We chose the surgical repair and never did I ever think of the last option until years later when I was once again haunted by these words.  Our journey continued with HLHS and many years after her successful repair I took her to an Oakville hospital to meet her new cousin who was just born.  Once in the hospital one of the nurses came up and knew about my daughter had a heart defect and asked which one.  I told her she had Hypoplastic Left Heart Syndrome and her eyes looked very perplexed.  She then said to me that a baby was born here also who had the same condition.  I asked her why the baby was born here and she pointed to one incubator on the other side of the room and stated that the family did not want to pursue any medical interventions for their child.  At that moment I sat silently and stared at that incubator in the back of the room.  I couldn’t understand why no one was holding that baby and then understood why that baby did not cry.   This beautiful gift would never see the sunshine, would never play on a slide or ever have the chance to survive.  I guess I never thought about this option but if chosen I now know that families can choose to leave their baby at the hospital for their last moments.  I remember leaving and getting lost on the way home.  My mind never stopped wondering who that child was of could have been.  I do not want to open a discussion or argument on this subject but these are my true feelings and it still haunts me as to why.

Many years later one of the teachers at our local school told me someone she knew was expecting a child like Colena.  She asked if I would mind speaking with them and I eagerly said yes.  I never heard anything for a couple of days until she told me that they decided to terminate the pregnancy since they did not feel that they could financially handle it.  Walking home I once again wondered why two children who I never knew came into my world with this situation and why the choices were made.  Current statistic say that HLHS occurs in 3% of life births and I met two families, what are the chances of this. I once again want all readers to know that I am not here to judge these parents and I am not trying to open a discussion on choices, I only want to express how I felt knowing these private matters. I will openly admit that I do not feel that doctors should even offer compassionate care as an option. I have always felt very strongly about this.  In the past the odds of HLHS children surviving with either option were very poor, but that is not the case now.  They do however go through extreme pain and a cautious future but everyday the medical world is finding new answers so they must be given the chance.

One thing I certainly know is that my life has been enriched by not only my daughter but by the doctors, nurses and all the staff that worked so hard to keep my angel with me.  These special children are gifts for all people who surround them.  Rage on Heart Warrior!

Jean is a regular blogger with Cardiac Kids read her bio and Colena’s story click here 

Check back next week for a very special guest post from Kathryn about being a “CHD Sibling”

Planes, Trains and AED Defibrillators

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At the best of times, road trips with the kids can be stressful. Parents take painstaking care that there are plenty of snacks, activities, DVDs and music. All in the, sometimes vain, attempt to squelch the dreaded, “Are we there yet?”. These days, our jobs have been made a little easier with iPods and iPads, personal gaming systems, in-car DVD players and shrinking laptops. The worst thing that could happen is forgetting to bring enough chargers. But traveling with a baby or child with a heart defect becomes something very different.

I grew up spending summers in Finland, taking road trips to Florida, and driving to cottages…when I had children, I had no doubt I would do the same. In fact, my two eldest children have both been to Finland twice. My expectations and plans all changed when Owen was born.

Traveling with Owen is an adventure, in and of itself, but the planning is a virtual tour de force.

Traveling with a Heart Defect in 6 Easy Steps

Step 1:

The first step in planning a trip with our son is location. We cannot travel just anywhere. There has to be access to a children’s hospital, ideally a children’s hospital with a cardiac unit. Should Owen get sick we need to know that a hospital can manage his unique physiology. Even a simple blood test can be nearly impossible with Owen’s system. On Owen’s first trip to Florida, it took two nurses, a doctor, a shift change, followed by another doctor to get one vial of blood. All in all, this entire process took over 5 hours in a children’s emergency department.

The children’s hospital requirement limits us incredibly. This rules out pretty much all South American travel, some Northern Ontario cottage trips and even several European countries. It goes without saying the countries that do not even treat Owen’s heart condition, just allowing these babies to die, are out of the question.

Step 2:

Second step is medication. Owen is currently on 8 different medications, 3 of which require refrigeration. This means that I have to be able to keep the meds cold on the way there and at our destination. Not as easy as it sounds as the kind of cooler required to effectively keep the meds cold are large and cumbersome. Once the refrigeration issue is addressed, quantity becomes a concern. Because Owen receives all his medication through his feeding tube, his meds are in liquid form. Pills are easy to count, therefore you know if you will have enough. But when the medications are in liquid form it can be more difficult to determine. Especially given the medications do not always come in the same sized bottles, it becomes serious guessing game.

Step 3:

Next step…milk. Owen has a feeding tube, and does not orally consume enough nutrients to sustain himself. He receives a feed overnight of a special nutrient enriched formula. So, we need to make sure we have his feed pump, the pump charger, feed bags, formula, feeding tube extensions, emergency feeding tube…are you still with me?

Step 4:

Step four coincides with the previous. Owen receives a feed overnight of 600mL, slightly more then a water bottle. Tube feeding parents will know what I mean when I describe the “Fed Bed Phenomenon”. The tube that connects the child to the feed bag is called, in short, an extension. This extension has two ports or openings, one that a syringe fits into for medications and one that the feed bag fits into. Fed Bed Phenomenon happens/occurs when the meds port opens during the night thus resulting in the formula being pumped into the bed ALL NIGHT. Waking up to a bed full of formula and stomach contents is messy to say the least. But at home we have mattress protectors and washing machines…but a hotel room?

Ok, so we have a location, medications, feeding matters and its complications sorted out. Next…equipment.

Step 5:

Owen has an oxygen saturation monitor and a defibrillator (you can also add the feed pump to this category). The sat monitor is important in determining when a cold or other illnesses require medical attention. The defibrillator…well, that just doesn’t warrant an explanation.These are easy enough to pack…but again just more to carry and more to find space for.

Step 6:

Finally, incidentals. These are things that most parents probably already think about, like thermometer, fever reducers, first aid kit. Ours is a little more extensive. Owen can only take acetaminophen because ibuprofen causes him to have stomach bleeds. That’s easy enough. Heart kids are at a much greater risk of dehydration. We try to make sure we bring an electrolyte solution. Should Owen start throwing up, I immediately put him on a slow continuous feed to prevent dehydration which can be deadly for a heart kid, especially one who has already had a stroke. Travel can be hard on the healthiest of kids’ tummies, so we must be prepared.

Despite this epic packing list, I am pleased to say that we have been able to travel as a family. We recently returned from a successful trip to Florida to see grandparents and go to Universal Studios. Traveling with heart kids is not easy, but worth it. As long as we are prepared for every potential disaster…easy peasy, right? Our goal is to give Owen as normal of a life as possible. Family trips are part of the deal.

Just do not forget to pack extra iPod chargers.

Laura

Laura Veloso is a regular blogger for Cardiac Kids.  Read her bio and Owen’s story here

Be sure to check back next week for a post from Crystal

 

 

Rest In Peace Strati

During our journey with Elentiya, we met and became very close with a couple whose son Efstratios was also born with HLHS, 11 days before Elentiya.

Because their birth dates were so close, we went through everything at the exact same time – Norwood, PICC lines, catheterizations, discharges, being admitted, and the Glenn – and we became very good friends. In fact, it turned out they live not even 10 minutes away from us, and there were a lot of similarities and coincidences.

Both Strati’s mother and I found out at 22 weeks pregnant via fetal echo, performed (and informed) by Dr. Nield at Toronto East General. We were both meant to deliver at TEGH, but were both transferred to Sinai because of our babies’ hearts. Dr. Van Arsdell performed both of their Norwoods and Glenns. Strati was born September 19, 2013 at 2:41am, delivered by Dr. Malinowski at Mount Sinai Hospital. Elentiya was born September 30, 2013 at 4:21pm, also delivered by Dr. Malinowski at Mount Sinai Hospital. The list goes on.

Strati had been having a lot of complications post-Glenn, and he was set to have his chest closed on May 9, 2014, two weeks after he received the Ventricular Assistive Device, and was to be reassessed for a transplant. That evening, I texted his mother to find out how things went. My heart broke when I read her response – I couldn’t even tell Jon what the text said.

At not even eight months old, Efstratios had suffered a major stroke which left him ineligible for a heart transplant. He passed away in his mother’s arms, May 9, 2014.

I can’t even begin to explain the overwhelming emotions that took over – I was heartbroken, sad, terrified, embarrassed, relieved… Everything under the sun that you can feel, I’m pretty sure I felt it.

I loved Strati almost as much as I love Elentiya. He was an adorable chunky baby, full of love and spirit… It wasn’t fair.

I was relieved, because I knew that his passing meant that Strati wouldn’t suffer anymore, and his parents would never have to worry about his heart again. I was embarrassed because I felt relief for it not being Elentiya. Embarrassed because I texted his mother to find out whether he’d been closed, only to find out he didn’t make it.

This week has been rough – between finding out about his death, Elentiya having a cold, rushing her to Emerge the day of Strati’s viewing because we were worried it may be something respiratory, attending his service and burial, I’m sitting here numb beyond belief; and I’m not even Strati’s mother.

This experience has only reiterated the important things I’ve discovered on this journey; other parents are your biggest support, expect the unexpected, and the nurses we meet along the way are amazing.

Our Cardiac Kids are so precious and so fragile, yet so incredibly strong and full of life. We have so much to learn from them and our experiences; every second we have in this life should be cherished – especially the seconds we have with our babies, Cardiac or not.

I do not know how Elentiya can have been through so much in so little time, and yet still wake up every morning with a beautiful smile on her face. And I don’t know how Strati’s parents are still going on, without being able to see their son’s beautiful smile.

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Rest in Paradise, Efstratios. September 19, 2013 – May 9, 2014.

Caitlin

Caitlin is a regular blogger for Cardiac Kids. Read her bio and learn more about Elentiya here
Be sure to check back in 2 weeks for Melissa’s first post!

Bravery Beads and My Heart Warrior

 

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       Colena’s Bravery Beads

At Sick Kids Hospital and other children’s hospitals there is a program called Bravery Beads. This program gives beautifully coloured beads to children facing life challenging illnesses after each procedure that they endure. Beads in history have signified wealth, strength and courage the two later descriptions are something our heart kids have known all too well.

My daughter was diagnosed with HLHS shortly after birth and has a necklace with over 500 beads. This necklace is beautiful but is a stark reminder of all the pain and tears that my daughter experienced. I am so very proud that she is a warrior and a survivor but I am also sad and bewildered that she had to endure so much pain. This program is wonderful but at the same time I wish it never had to exist. No child should have to endure pain when their life is just starting. Only our Heart Community understands first hand how much pain our kids experience since our kids rarely show any outward signs of sickness, only faded scars.

Paul of Tarsus once quoted, “”Let us run with perseverance the race marked out for us”.” This is what our kids do everyday and they continue to amaze us. As advocates for our kids we must continue to spread the word. As a parent I am forever grateful for the care and expertise given to my child at Sick Kids Hospital. I am also thankful for Cardiac Kids since they are giving our families a voice to show how important Congenital Heart Defects are.

My daughter is strong, compassionate and thankfully a fierce fighter. This honourable chain hangs on her bedroom door and every night it is a constant reminder of how far she has come. I have however tied the ends with double knots in hopes that she will not string anymore on. Rage on Heart Warriors!

Jean

Jean Johnson is a regular blogger for Cardiac Kids. Read her bio and learn more about Colena’s story here.

Be sure to check back next week for Laurie’s first post!

 

Owen’s Story

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Owen – 5 years old

Owen was born on June 25th, 2008 with HLHS (Hypoplastic Left Heart Syndrome).  My newborn son was born with half a heart, a condition not compatible with life.

I have written those words probably a thousand times. They still hit me like a ton of bricks.

We were a typical family, almost ideal! Short of a white picket fence, we were the quintessential family.  I was a stay at home mom with two kids, a boy and a girl.  My husband and I decided to add one more to our family. His heart defect was caught in the 18 week ultrasound. Devastated does not even begin to describe what we felt. Surprisingly, we were lucky. Owen was diagnosed in utero. This meant that we were able to prepare ourselves, our families but most importantly our 2 and 3 year old children. Owen was born via planned c-section, quickly stabilized and taken immediately to the Hospital for Sick Children where a team of doctors and nurses were waiting for him.  His brother and sister were able to get a quick visit with their baby brother while I was still in the operating room. My sister carried my 2 year old in and my husband carried our eldest who at the time was not quite 4. They would not officially meet him and touch him until 6 weeks later.

This was the beginning of our “new normal”. Owen was quickly transferred to the Hospital for Sick Children.  My husband never left his side.  My sister stayed with me. She sat by my bedside until I was discharged.  Owen was born via c-section and thus I was also recovering from major surgery. It had been barely 12 hours after Owen’s birth that my husband called to tell me that the doctors needed to “intubate”.  I did not know what that meant…he told me Owen needed a machine to do his breathing for him. I was taken by wheel chair through the tunnels once a day to see my baby. I was post-op, post-natal, drugged and hormonal.  I could barely focus my eyes when looking at my son.  The monitors and machines pumping medications, counting his respiratory rate, heart rate, blood pressure, you could barely see a baby underneath all the tubes. After 4 days, I was discharged and went immediately to be by Owen’s side.  In four days, my husband sounded like a doctor, I had no idea what half the words he was saying meant.  Within days I was a virtual cardiologist.  Quickly, my husband and I began taking shifts.  One would go eat and sleep while the other was with Owen. There were times that I would sleep in the car in the hospital parking garage.

Owen’s heart defect is fatal without immediate medical intervention. Within 12 hours of being born, he was put on full life support.  By 8 days old he had survived open heart surgery, crashed, arrested for 20 minutes, had more surgery then had a stroke.  The number of procedures and tests he has been through is more then I can list. His future is filled with more of the same.  And yet this little boy smiles everyday.

When a baby is born fighting for his life, there is an entire community also fighting.  My two older children have been very much affected by having a very sick brother. They have learned about illness and death far too early.  They have learned that Owen will monopolize most of my time.  Both parents will not be at their sports events if the rink is too cold for Owen or the soccer field too hot.  Our family cannot travel to beach resorts because Owen has such a complex heart that should he get sick, the hospitals there, will not have the means to care for him.  The summer that Owen was born, they lived with my parents.  Owen’s health was so precarious, my husband and I were there night and day. When he became more stable, my husband would return to the hospital every morning after dropping the kids off at school, only to leave a few hours later to be there to pick them up. He had taken the year off work in an attempt to maintain some consistency in our kids’ lives. The reality was, their mom could not be there with them.  I was living, what seemed like a world away with my very sick boy.  We spent hours alone in a small room singing songs and watching videos.  I still remember the first time he laughed.  I knew every wrinkle, every spot, every scar on his body.  My only purpose was to do all that I could to keep him alive. I would crawl into the hospital crib with Owen most nights when he was not sleeping well.  I would spend weeks without having gone outside that when I finally ventured out, my eyes would hurt from the sun.

My baby sister got married that fall, and I was not able to do the things an older sister would do during that time…I did not get help with bridal showers, bachlorette parties or put together wedding favours. I was not able to get my dress properly fitted so my cousin did the best she could stitching it by hand. My other two children turned 3 and 5 that fall.  I take pride in creating and crafting and making each birthday party an occasion. I hand craft invitations, make my own decorations but not that Fall.  I bought their loot bag goodies at the hospital gift shop. While I was at the party, someone was sitting next to Owen.  There was somebody next to Owen 24/7.  Owen was never left alone.  He was muscle relaxed, sedated and completely unaware of his surroundings, but I never wanted him to be alone.  If he was going to die, he would not die alone.  Someone who loved him would always be by his side.

These are moments our family will not ever get back.

This is the reality of having a sick child. Nothing in our lives is the way it used to be.  Owen’s heart is always in the back of our minds.  Everyone in our lives is effected one way or another.

So, Owen’s story isn’t really just about Owen. It is about everyone who comes into our lives.  All of our family and friends.  The friends who have become family because of Owen’s heart.  His school, his therapists.  The nurses and doctors who keep him alive and care for him.  The organizations and charities we fundraise for. The generosity of strangers who have heard our story.  The media who shares his our story   and the strangers who read it.  Congenital Heart Defects is about everyone, because if your heart does not work properly, nothing else does either.

Laura

Laura Veloso is a regular blogger for Cardiac Kids.  Read her bio and Owen’s story here

Be sure to check back next week for Crystal’s first post!