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 

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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.

****************

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.

Tyson’s Story

Congenital Heart Defects (CHDs) are the world’s leading birth defect; more common than spina bifida or Downs Syndrome, and are the leading cause of infant deaths in Canada. CHDs kill twice as many children each year as all childhood cancers combined. The term “congenital” means that the defect is present at birth.   One in 100 to 3 in 100 Canadian children are born with one or more of the 35 known types of CHDs, representing 1-3% of births. These heart defects vary in severity, ranging from a tiny hole in the heart that may never require surgery, to life-threatening defects which require open-heart surgery within hours or days of birth. Sadly, more than 4,000 babies born this year in Canada will never see their first birthday because of complex congenital heart defects, and every year hundreds of CHD children die before ever reaching adulthood.

Our family’s CHD warrior Tyson is one of the fortunate ones, who has been blessed with five birthdays so far. Tyson was born in November 2008 with complex CHDs. Even after two prenatal ultrasounds, he remained undiagnosed until he was 10 days old. He was born in the comfort of our own home, with my husband and our two midwives in attendance; all of us unaware of how sick our son’s heart really was. We had no idea that our world was about to be turned upside down.

Immediately after he was born, Tyson began having problems. He had a hard time keeping his body temperature stable, he never woke up to eat, and he slept 7-8 hours through the night. The red flags were there, and blood tests were run to check on other things, but nobody thought of checking his heart. He was even seen by the hospital pediatrician at one day old, but the symptoms at that time didn’t directly point to his heart, so he wasn’t concerned. A few days later Tyson developed bad jaundice and was increasingly lethargic. Bilirubin levels tested over the next few days all came back in the normal range so nobody really knew what was wrong.   At 6 days old, we noticed he was breathing really fast as he drifted off to sleep, but we wrote it off as something we thought most babies did from time to time. At eight days old, we were tired of worrying, and he was increasingly sleepy and lethargic, never opening his eyes or spending any time awake, and not latching well to nurse, so our midwife suggested a trip to the local hospital for some phototherapy to treat his jaundice. Blood tests were run once more and his bilirubin levels again came back normal – a little on the high side but not overly concerning – so the ER Dr was prepared to send us home. We were certain that something was wrong with our baby and insisted that we see the pediatrician. The pediatrician came in, and within less than five minutes of examining Tyson, he whisked our baby away into the trauma room, put him on oxygen, and told us “You’re right, your baby is not going home tonight,” and told us he needed to undergo some tests. The next time we saw our newborn son, his head was shaved at the sides and we saw two IV lines running from blood vessels in his head, because his arms were too tiny to find a vein. A spinal tap was done, and various tests were run. The conclusion was that our eight day old baby was in heart failure and his other organs were beginning to shut down. A preliminary echocardiogram at our local hospital revealed that he had “a rather large hole in his heart.”

From there, Tyson was transported via ambulance to Toronto’s Hospital for Sick Children, where it was discovered that his condition was much more serious than a large hole in his heart. He was born with four severe CHDs: Hypoplastic Right Ventricle, Tricuspid Atresia, Transposed Great Arteries, Coarctation of Aorta, as well as an ASD and VSD. In short, he’s missing the tricuspid valve which caused a complete under-development of his right ventricle (basically, he has half of a heart.) In addition, his main arteries are mixed up, his aorta is narrow, and he has two holes as well.

We were told that Tyson would need to undergo a series of at least three open-heart surgeries in the next two to three years of his life, the first one being scheduled in a matter of days, once the surgeons could organize his schedule. The goal of the surgeries was to re-plumb his heart, so that the under-developed right side of his heart would be essentially by-passed, leaving the left side to do all of the work.

Tyson underwent his first open heart surgery at 13 days old, spent three weeks recovering at Sick Kids, and made it home at just over one month old; just in time to spend Christmas with his mom and dad, two older brothers, and one older sister.

 

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Four weeks old

The winter months at home were extremely busy; Ng tube feeds, low-fat portagen formula every 2 1/2 hours round the clock, pumping breast milk, cleaning up the aftermath of reflux problems, and administering the seven different medications that Tyson had to take.  The medications were to strengthen his heart, prevent fluid retention, help with reflux, and prevent blood clots since he now had a Gortex shunt placed in his heart. The blood thinner used to prevent the clotting was an Enoxaparin needle which we had to inject into his legs twice a day, morning and night.

If that wasn’t enough to keep us hopping, Tyson was re-admitted three days later for an infection in his sternal incision. Once home again, we had to go for weekly appointments at Sick Kids, then we graduated to bi-weekly, and then monthly check-ups. This was on top of his regular appointments to the pediatrician, regular appointments to his family doctor for his immunizations, and monthly doctor’s appointments for the Synagis injections to prevent RSV (a virus that causes very serious respiratory tract infections.)

Despite our attempts to keep him in a bubble, Tyson struggled with his health through much of his first winter because of his compromised immune system. At four months old, his life was spared again when he was hospitalized because of a serious pneumonia infection, causing him to be intubated and in Intensive Care at Sick Kids for almost two weeks.

In May 2009 when he was five months old, Tyson had his second open-heart surgery, after which he developed another pneumonia infection. After his second surgery, his health was much better; he still seemed to catch quite a few colds but thankfully, he avoided any hospital stays for about ten months.

His third open-heart surgery was in December 2010. During this surgery, the surgeons at Sick Kids attempted to re-plumb his heart so that the left side would do all the work since his right side was effectively useless. They also attempted a repair on his left pulmonary veins, the veins responsible for carrying oxygen-rich blood from his lungs back to his heart. These veins are dangerously small and are only carrying about 18% blood flow to his heart. Unfortunately, this surgery didn’t go quite as they had planned and they were unable to repair these veins as well as they’d hoped. After several cardiac catheterization procedures to measure his pressures again and attempt a fenestration closure, it was decided that there are no more surgical options left for Tyson besides a heart & lung transplant.   So for now we are on a ‘watch and wait’ plan of action. Right now his heart function is borderline, but he continues to grow and thrive despite his many obstacles.

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Tyson, 2 years old. Three days after his third open heart surgery.

Today, Tyson is an energetic five year old who is enjoying Grade One. He is developing almost normally and enjoying all the things that typical five year old-boys love: soccer, books, Superheroes, and Ninja Turtles. He tires more easily than healthy children, and his medication prevents him from doing some activities, but overall he is living life as normally as can be expected. Unfortunately, because of the severity of his heart and lung conditions, Tyson’s biggest struggle is recurring pneumonia, and he has had more hospital stays due to this than most kids with his condition. We make use of all kinds of alternate remedies to boost his immune system and keep him healthy, and of course we have a strict hand-washing policy in place in our home, but there is only so much that we can do to keep him healthy. It seems that whenever he does catch a cold, the virus attacks the weakest part of his body, his lungs.

Having a child with severe heart defects has taught us not to take one single day for granted, to enjoy every possible minute with Tyson that we can, and to appreciate every day as a blessing from God. Every morning we wake up and are thankful that Tyson can enjoy another day with us; another opportunity for us to love him and care for him, and to see the laughter and joy that he brings to our lives.

We are often reminded that if Tyson was born in 1978 instead of 2008, there would have been nothing that they could have done for him as an infant and we would have had to take him home under compassionate care. But over the last twenty or thirty years, there have been so many advancements in medicine and technology that doctors have been able to come up with ways to prolong the lives of children with severe congenital heart defects.

Even in the early 1980’s when these types of ‘palliative’ heart surgeries were first being performed, survival rates were very low and many babies did not make it. Now however, more and more babies are surviving the first and most risky surgery called the ‘Norwood’, usually performed within days of birth. Then they are able to move on to the ‘Glen,’ typically performed between 4-6 months of age, and the ‘Fontan’ performed between 18 months – 3 years of age. Even still, Hypoplastic Right or Left Heart Syndrome is responsible for 25% of all cardiac deaths under one year of age. With those kinds of odds, we spent hours in prayer, begging God that Tyson could beat those odds, and asking Him to spare his life.

Over time cardiologists and surgeons are perfecting the techniques used to perform these risky surgeries. More and more children are making it into adulthood, resulting in a growing population of young adults who require life-long cardiac care. According to the Canadian Congenital Heart Alliance for Life, there are an estimated 100,000 adults with CHD across Canada (outnumbering CHD children.) At least half face the prospect of complications, multiple surgeries, and premature or sudden death.

In Ontario, there are roughly 40,000 adult CHDers, as well as 40,000 CHD children. However, there are only seven cardiologists who are formally trained in the care of adult CHD patients, and only four surgeons with adult CHD expertise. There are far fewer resources allocated for the care of adult CHDers than other cardiac patients, resulting in long wait times for clinic appointments and surgeries. This puts these adults CHDers at greater risk of death.

There is still so far that we have to go to raise awareness of congenital heart defects. Many people aren’t aware of the dangers of CHDs, and their cause is still unknown. Some are known to be associated with genetic disorders such as Down syndrome, but the cause of most CHDs is unknown. Often prenatal ultrasounds are not sufficient in diagnosing the problem. If a woman is at higher risk for carrying a baby with CHD (for example, if she already has a child with CHD,) she should have a fetal echocardiogram done to determine whether or not there are cardiac concerns. As was the case with our son, I had a routine prenatal ultrasound at 20 weeks pregnant, but was sent for an additional ultrasound since the first one didn’t give an adequate view of my baby’s heart. Ironically, this repeat ultrasound reported that our baby had a healthy, four chamber heart.

Since CHDs often go undiagnosed prenatally, I believe that funding should be made available for all babies to have a pulse oximeter reading shortly after birth. This would allow the doctor or midwife to monitor the baby’s oxygen saturations in the blood, and therefore aid in early detection of many congenital heart defects. In this way, hundreds of babies’ lives can be saved. I cannot explain how or why Tyson was able to live undiagnosed for 10 days, since his CHDs are so severe that he could have died within hours of birth. But I do believe with all of my heart that it was only by the grace of God that he is here today, and I now that He has big plans for our little heart warrior.

I am 1 in 100

 

Melissa

Melissa is a regular blogger for Cardiac Kids. Click here to learn more about her and her family.

Check back in 2 weeks for a post from Caitlin.

Sources:

http://www.cchaforlife.org                                                www.heartandstroke.com

www.congenitalheartdefects.com

 

Busy Waiting

Most people think when you have a heart defect, you get it fixed and you’re done! And that would be correct for several defects. But, for those of us who have children with complex congenital heart defects this is not the case. Far from it.

Complex heart defects often times require several surgeries to correct the defect. “Correct” meaning change the anatomy of the heart so that the defect becomes survivable. It is important to remind you that there is NO CURE for heart defects. Heart defects will always be there in some way. Even when a child becomes an adult, their heart is not like a healthy adult. He/she will never have a normal heart.

But I digress…several surgeries. So, when there are multiple surgeries, there is a lot of down time. This down time is not nearly as delightful as it sounds.

In the case of Owen’s heart, the treatment is generally a 3 staged reconstruction of the heart. The first stage at birth, the second at around 6 months and the last around the age of 3. With the exception of the first stage, the last two are based on weight and health of the child. The time frames of the surgery of 6 months and 3 years is an average. Owen is 6 and has yet to have the final stage. He is a bit of an exception and is not typical of the defect.

With the potential of surgery years apart your life as a family can be put on hold. Surgeons wait until you are sick enough to require the surgery but not sick enough that you won’t survive the surgery.

Read that again.

Surgeons wait until you are sick enough to require the surgery but not sick enough that you won’t survive the surgery.

That means, we are waiting for our kids to start deteriorating. We are waiting for them to start becoming blue more often. To lose their breath more easily. To become more tired. To eat less. To become more cranky and irritable. To get colds more often and take longer to recover. We are waiting for our kids to start dying.

In the meantime, you cannot plan for things much more then 2-3 months at a time. Because, like us, you never know when this “deterioration” will start. In general it is a slow deterioration. Though, it is not impossible for an illness, such as a common cold or flu, to kick start it quickly, very quickly. For Owen, it has been this past summer….but it has been a long time coming.

Owen, ideally, should have had surgery years ago. But years ago, he was in such terrible heart failure, surgery would have killed him.   He has been on medications to improve his heart function and under the watchful eye of a cardiologist. The decision has been made to take the risk and repair his heart.

Yet, we are still waiting. Because now we are waiting for a surgery date. We are holding our breath. Owen is starting grade one, his school year will be interrupted. His brother and sister’s lives will get   flipped upside down. Our extended family will be on call. My husband will have to take a leave of absence from work. All three kids will have to, in some way be prepared….

But once this final reconstruction is complete, another round of waiting begins. Because kids with complex heart defects are never truly out of the woods. Some will need a transplant at some point, some will need several more procedures and surgeries. All will be under the care of a specialized cardiologist. All require waiting. We are permanently busy waiting.

Laura

Laura is a regular blogger for Cardiac Kids to find out more about her or to read Owen’s story, click here.

Check back in 2 weeks for a post from Melissa 

Off to School We Go

Trying to figure out what I should write about for this week’s blog was difficult; there are so many things to talk about.  Trying to fit almost 16 years into a blog can become a little daunting.  Instead of writing about all the ups and downs of the second part of Branden’s story, I felt it might be better to focus on the “heart warriors” entering the school system.  This topic gives most moms a tummy flop but nothing can be more scarier than sending a child with medical issues into the hands of the unknown world of teachers, students, gym, bullies or otherwise known as the school system.

I have seen this as mom and teacher of special needs kids; I come from both worlds.  Sending Branden to school for the first time was the scariest thing I ever had to do. I was putting him into the hands of people I didn’t know; would they understand the complications of his condition?  Branden entered school in the beginning stages of heart failure. There was so much fear of what could happen when he entered the doors to that brick building. A small child of less than 30lbs and still wearing size 3.  I wish I had the support or the knowledge I have now when he first went into that world.

So here are some ideas and thoughts before your child enters the world of school:

Before your child enters the system, it is best to sit down with their doctor and know what they can and can’t do during recess, gym or school trips.   Collect as much information on your child’s condition and side affects so you can inform the school. The more knowledge you have to share with the school the better so they can provide the best care for your child.  Once you have all the information, it is best to have a meeting with the school admin and teachers your child will have. All office staff and admin are in the school the week before it starts; most teachers are in and out that week also reading OSRS and getting their classrooms ready for the school year.

The school will also have what is called the “life threatening prevention form” for you to have your doctor fill out. The sheets can be filled out by your family or heart doctor. These sheet are so important; the information from these sheets will be placed on the board near the staff mailboxes. It will include a picture of your child and the condition and what they should do if the unthinkable happens (which has happened to Branden a few times). It will also be shown at the staff meeting at the beginning of the year so all staff will have a understanding about your child’s condition and what they should do if they see something amiss.

During the meeting, lay it out all on the table. You are working together as a team to make sure your child gets the best and safest education they deserve.  Inform them of the condition, what are the signs your child shows if something might not be right.  Every heart child is different; the signs of an issue will be also.  These signs may also change.  Give them all information on the condition so they can review it once the meeting is over. It is also very important to tell them what medication(s) your child is on so they can relay that to a medical team if a call is ever made. Tell them the expectations you have for your child; I say this because Branden tended to be babied at school and learned he didn’t have to do things aka homework because it was stressful.  You need to make sure you are 100% comfortable that the staff has a full understanding of your child’s condition. As a mom I failed at this; some admin shrugged it off and I don’t think they understood the seriousness of Branden’s condition until he collapsed at school in 2008.

School trips tend to be a lot of fun for kids; they get to learn by doing instead of being in the 4 white walls of the school.  There is a new rule that no child is left behind. So the teacher should be booking trips that your child is able to attend; but this doesn’t always happen so a reminder is need.  This is also where your “life threaten prevention plan” comes into effect.  On most trip forms it will ask if you child has one of these; the teachers can bring the sheets with them on the trip.  On some trips, staff at the destination will also ask the teacher if there is/are any medical issue(s) they need to be aware of. That way the staff dealing with your child will be able to change or modify their program to fit everyone’s needs. If you want or are able to volunteer for trips, just make sure you have your criminal record check with the vulnerable screening. If you pick up a form from the school you won’t have to pay for a criminal check.  It could take a few days to a couple of months to get one.

When any child enters the school system they will be meeting many new children. The excitement of making new friends and play dates and the bonding of friends begins.  However they will or might also meet children that aren’t so nice; its best to talk to your child about kids they will meet.  But if your child does encounter a bullying situation, it’s is best to talk to the teacher or admin right away to try and nip it in the butt.  Being small and not able to do a lot of things other kids could, Branden encountered a lot of bullying. If the bullying doesn’t stop or you don’t like how it was dealt with at the school, call the superintendent; this is what they are there for. After talking to the school or a superintendent, a plan should be put in place to deal with the situation. Depending on the age or what happened, your local police department will help with talking to the other child’s parents.  It is important to nip it in the butt; I have seen the damage bullying can do to my own child and children I have taught.

Another thing to consider is there is a large percent of “heart warriors” that struggle at school whether it is academics, recess, social skills; Sick Kids, in the heart department, offers help and support for your child as will the school system.  There is a link to heart kids and learning disabilities and ADHD; Sick Kids realized this and have hired their own Psychologist – Renee.   She is able to give you a free educational physic test to find out why and where your child is struggling at school. It is amazing that Sick Kids provides this as the waiting list in the school system could take years and to do it privately could cost up to or over $3,000.  Renee is amazing, funny and wonderful with the kids and the parents. She makes you feel like you are talking to family or a friend.

Branden is now in high school and he is doing better then ever. I was terrified to send him to high school; the kids are bigger; there are more bullies and fears of what could happen. But I also found my fears bled into him.  There was a very smart nurse in the local hospital who told me to watch what I am doing because I need to be careful not to turn him into a cardio-pelagic.  In some ways I bubble wrapped Branden so tight that it will take years to undo that protection and let him lead a normal life.

Shannon 

Shannon is a regular blogger for Cardiac Kids. To find out more about her or to read Branden’s story, click here.

Check back in 2 weeks for a post from Laura 

Brothers In Arms

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Someone once asked me what scares me the most about being the mother of a child with a heart defect. I remember that, at the time, I didn’t have a thoughtful response. I have a lot of fears when it comes to Josh but what’s my biggest? Over the years I have thought about that a lot and the answer that comes back again and again is a response you will probably hear from all Moms, not just the Moms of sick kids.

I fear failing my boys, I fear that when they grow up they will not know the depth of my love for them, or that somehow my parenting them could hurt them. Too often I feel that I am not up to the task set before me. Sometimes I look at these two beautiful creations and I wonder why God saw fit to make me their Mom?

Last year we had to focus a lot on Josh and his numerous appointments, his cath. procedure and his surgery and then all the therapies and as I did I began to see something happening to my youngest son, Kaleb. He was only 2/3 at the time, he didn’t understand what was happening to his brother, he didn’t get why there was a cloud over the house. What he saw, was the amount of time he spent with my parents-in-law while I took Josh to his appointments, what he heard was the thousands of conversations about Josh. A few months ago he had a severe asthma attack and I had to take him to the ER at Sick Kids, and instead of being scared Kaleb was so excited, he was singing in the back of the car about going to this hospital as if it was Disney world or something. He honestly thought I was taking Josh on fun dates every time we went to the hospital; that ‘doctor’ was like the ‘Mickey Mouse’ of Sick Kids. The last few years have been a learning experience for me, as Mom and as a CHD advocate. My littlest son was suffering just as much as us, and yet worse because he didn’t really understand any of it.

There is no one left untouched in a family struck by CHD, but too often the ones forgotten are the siblings. The ones who love their siblings unconditionally, and yet are not included in the process and appointments. They aren’t given all the information because we want to protect them, they have to watch the most important people in their lives struggle with fears, worries, sadness and there isn’t much they can do, and not much they understand. They also struggle because the attention is all on the brother/sister. They begin to feel second best, they question if they are loved as equally by their Mom or Dad, they feel guilt over their anger towards their brother/sister because deep down they know it’s not their fault but they are too young to fully get it. They struggle to figure out where they fit in the family, maybe they act out as they try to figure out their role.

The list can go on and on. We saw all of these things in Kaleb, our sweet and compassionate little boy. He was so desperate for our love and attention and as hard as we tried, most weeks CHD had different plans for my time. Since Josh’s surgery I have been spending as much quality time with Kaleb as I can, throwing snuggles and kisses at him so often that he giggles and runs when he sees it coming. One day, back in March I said ‘guess what?’ and he of course responded with ‘What?’ and I snuggled his neck and said ‘I love you’. He looked up me and said ‘Why do you say that all day long?’ but in his eyes I saw real knowledge. He knows I love him. He’s forgiven me for now, and hopefully when CHD rears it ugly head and threatens us again I will know how to make better choices, or at least Kaleb will be old enough to understand it better.

Our heart warriors and brave and heroic little people who fight with strength I have rarely seen in adults, but lets not forget their brothers and sisters in arms who fight by their side.

Laurie

Laurie is a regular blogger for Cardiac Kids. To learn more about her or read Josh’s story Click Here

Check back next week for a post from Shannon 

Living in the Shadows

Instead of being a heart mom, I am  a heart sister.  Also, instead of growing up with a sibling battling congenital heart disease, for the first 5 years of his life, my brother lived an ideal and healthy childhood.  Not even the doctors could predict what his future entailed.

On October 22nd, 1993 my parents were blessed with a beautiful and healthy baby boy.  By September 1995, my parents had built up what they believed was an ideal family, with two perfectly healthy children, a son and a daughter.  They had it all. Their dream home, family, and jobs.  What could possibly go wrong?

Throughout my childhood, my brother Matt was not just my big brother.  He was also my best friend, and my role model.  I wanted to do absolutely everything he did, regardless of my age or my capabilities.  By the age of 5, my brother had begun to play soccer, and baseball, and was the happiest bundle of joy anyone had ever met.  This was all true until the summer of 1999, when he was barely able to keep up to me, his three year old sister, when we went for bike rides.  The doctors were convinced that it was just asthma, and could be easily monitored.

Like any mother would, my mom failed to stop at this simple diagnosis.  She knew in her heart that there was something more to her son’s illness than simply asthma.  How could a perfectly healthy child suddenly become so sick that his lungs, liver, and the rest of his organs stopped functioning properly?

With further investigation, the doctors diagnosed him with restrictive cardiomyopathy. Essentially, he was experiencing a severe form of heart failure, which ultimately restricted his ventricles from filling his heart with the proper amount of blood, which resulted in his heart losing its ability to circulate fresh blood to the rest of his organs.  To this day, the cause of this disease is still unknown, and the odds of being diagnosed are (with no exaggeration) one in a million.  There is no physical treatment that can cure this disease; therefore, receiving a heart transplant was, and is, the only viable option, which presented any possible hope at receiving a second chance at life.  At this point, the doctors weren’t able to tell us if he would survive another day, year, or decade, and we were told he could drop dead any minute of a heart attack with no warning at all.  The doctors weren’t even able to tell us if a match would ever be found, or if his disease could be cured.  Even if he received a transplant, there was no guarantee that he would ever return to a ‘normal’ life.   This left us with one option.  To wait and see if a donor heart would become available in time to save Matt’s life.

At this point in time, I was only 4, and completely unaware of the severity of my brother’s illness, or the risk that I could lose my big brother at any moment.  For me, it was always an adventure to go to Sick Kids with him, because every time we went, we would both receive a beanie baby (him as a reward for enduring all the tests, and me because I wanted to be just like him).  The one thing I didn’t understand was why all the little boys and girls were so sick when there were all the fun toys and games for them to play with.

If all the other children had to be pushed around in wheelchairs and hooked up to IV’s, was I going to be next? If my brother got special treatment why couldn’t I? I didn’t think there was anything wrong with him.

At least that’s what I thought, until December 19th 1999.  To this day, there isn’t a single moment I’ve forgotten from that very night.

It was around 9 o’clock in the evening when the phone rang.  No sooner did my mother come running up to my room and began packing an overnight bag for myself.  She called a number of different family friends in search of a place for me to stay the night.  I soon found my whole family in the car, and me being driven to my piano teachers house with no explanation.  At first, this seemed exciting.  It would be my first real sleepover.  Those thoughts didn’t last too long, as I spent a majority of the night in tears wondering why my family had left me, and where they were going without me.  I was still too young to know every detail about my brother’s sickness and why it required my parents to leave without taking me with them.

To my complete and utter surprise, my grandparents showed up at the doorstep the following morning.  No later did I find them driving me to their house in Ottawa, still without my parents or my brother.

Christmas soon came, and of course this is every child’s favourite holiday! Family, turkey, and of course Santa; what could go wrong?  As much as I enjoyed adding yet another Power Ranger figurine to my collection, it just wasn’t the same opening presents without my brother.  I still didn’t know where he or my father were.

Losing a family member is absolutely devastating, and I can’t imagine how my life would be without my brother.  Lucky for me, I didn’t have to, as a match was found and my brother was transplanted early in the morning on December 20th 1999.

Being the sibling of a transplant recipient (or anyone battling a life threatening illness for that matter) is one of the most challenging tasks imaginable. As I grew older, I became more and more aware of the severity of his illness.  He was put on immunosuppressant drugs to reduce the risk of his body rejecting his new heart.  But with these drugs, came illness.  He spent grade one being home schooled to reduce the risk of catching colds going around the school. To ensure I didn’t pass any disease onto him as well, I was also required to stay home from school (not that this was something I was complaining about).

Most younger siblings live their lives being the centre of the show.  My parents did their best at balancing the attention, but I’m sure you can imagine the difficulty of this when you have a sick child.  This was especially difficult during the first few years when he was required to go into Sick Kids quite regularly.  My parents did everything in their power to ensure his body didn’t go into rejection, which resulted in our family making sacrifices that slowly became second nature.  This resulted in us both being forced to grow up faster than most children, just to adhere to what became our new lifestyle.  This was especially prominent when my brother always received extra help from my parents when he missed school for regular check-ups, clinic appointments and the regular trips to Sick Kids, which soon began to occupy his childhood.  As a result, this forced me to mature faster, and learn more things on my own just to keep up with what had become a new set of standards.

Despite what seemed to be a never-ending list of appointments, he would always put up a front making it seem like he didn’t mind any of the testing he was forced to endure, and that it had instead became part of his life.  Regardless of his age, he would always come back strong and optimistic, acting as if nothing were wrong.

Although, receiving a transplant seems to be the worst thing to happen in the world, it also provided us with many opportunities most families would never have a chance to encounter or be exposed to.  My brother was able to compete in both the national, and international transplant games, which allowed us to travel to Edmonton, London (Ontario), Windsor, and Australia.  We have also been exposed to a whole new community of transplantees and their families that stand as a support system letting us know that we have never been alone in this battle.  Experiencing this has provided my whole family with a new outlook on life, proving that life isn’t measured by how many days you live, but instead how you spend them.

Like any transplant family, mine has forgone a ‘regular’ lifestyle just to keep my brother alive.  To this day, almost 15 years post transplant, my brother is healthier than any doctor could have ever imagined, and surpassed any expectations set out for him.  He’s entering his fourth year studying microbiology at the University of Guelph, and has battled more in the past fifteen years, than most people face in their entire lifetime.  To this day, he is still my role model, and my respect grows for him with every new task he accomplishes.  He inspires me to persevere through even my toughest times, and it’s because of him that I have grown to be the person I am today.

Growing up in his shadow has taught me so much, and I thank him for each and every lesson I’ve learned.  He is the most selfless person I know, and with all the illness and travesty he’s faced, he knows not to fret over the small things in life, because in reality they have a miniscule effect on the greater outcome. He is a prime example that just because life may present you with roadblocks, they are in no means a reason to give up.

Ultimately, transplants are similar to running a marathon. 3 equal parts of preparation, mental toughness, and heart. Once you breakdown the mental barriers that you will in fact reach the 26.2-mile finish line; the rest of the battle is enduring the pain, and persevering right until the end. If you have enough passion and strength to fight through to the finish, the first two steps make the race that much easier.

Kathryn

Kathryn is a guest blogger for Cardiac Kids, her brother Matt has been speaking at Cardiac Kids events since he was a young teenager. Kathryn has become more involved with the charity as she has grown, volunteering at events to show support. Kathryn will be working with Cardiac Kids in 2014/2015 as a sibling mentor.  

Check back next week for a post from Laurie

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”

You’re Doing Great

Lily

There was a steep learning curve when we first became Lily’s mom’s. While we had known from the beginning that Lily had “heart issues,” we didn’t truly begin to understand what that meant until our first appointment at Sick Kids. We met Lily’s foster mom in the waiting room of the ECHO lab and were perfectly happy to let her take the lead, comfortable playing the role of the casual observers. To our shock though she was just as happy to hand the reigns over to us and forced us to jump head-first into our new role as mothers. In the hour that followed, I learned on the spot how to try and comfort Lily during a needle poke, how she preferred to be swayed instead of rocked as she drifted off to sleep and how quickly she could squirm out of the most tightly swaddled blanket. I felt totally and completely out of my element and it wasn’t long before my self-confidence, which had been high after years of hearing how great I was with kids and what a great mother I would be, started to plummet. In the moment where I truly became a mom, I had never felt more like a fraud.

And this is the truth: the learning curve is steep for all CHD parents. Even when you have the diagnosis early: you’ve prepped yourself with all of the reading and research and you’ve reached out to other parents who have travelled this road before us, there is nothing we can do that can prepare us for these first moments. Alongside the “normal” firsts: counting fingers and toes, trying to distinguish between cries, changing diapers while trying not to turn on every single light, you are now thrown head-first into this unexpected world. While I was shocked at how quickly this world became our new normal, standing beside Lily during that first ECHO, I felt as though I had just jumped off the edge of a cliff and didn’t have a clue what was waiting for me at the bottom. Then, out of sound of the wind rushing through my ears, came a firm but gentle hand on my arm and the most incredible words I had ever heard: “You’re doing great Mom.” It was exactly what I needed in that moment, a small bit of encouragement to help me see that I wasn’t a fraud, that Lily and I just had to figure this road out together. We learn fast that we can’t always protect them the way we want to, that we can’t keep bad things from happening. But we also learn, just as quickly, that we can hold them closer, comfort them, find ways to help them work through their own fears and know, always know, that they will never face any of this alone. We don’t always know the right steps to take, the right path to follow and we often find ourselves relying on people to help guide our decisions in the hope that it will help our children survive, but we do know how to bring real life into this medical world; we know how to help them not just survive, but live.

When I think about Lily, at 5 days old, going through her first heart surgery alone, it breaks my heart. While I know that there has always been a “Team Lily”, thanks to the many nurses who stopped in her room on 4D to tell us about how they were there to watch her — spending time snuggling her up while they we were working, on their lunch breaks or even once their shifts were done, there is nothing I wouldn’t give to be able to go back in time and be with her, to experience those first moments right alongside of her. I want to be the voice gently whispering in her ear, “You’re doing great baby” and bring her the same comfort that a nurse named Jane once brought to me.

Crystal

Crystal is a regular blogger with Cardiac Kids read her bio and Lily’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