Sick Child

Bravery Beads and My Heart Warrior

 

 “photo

       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!

 

Advertisements

Lily’s Story

Image

My wife Jessica and I always knew that we were going to build our family through adoption. It always felt like the best fit for the two of us and even before our wedding we had started the process to become an “adopt-ready” family in Ontario. One of the steps you take in this process is to meet with the social worker assigned to you and go through a rather long list of THINGS that you are, or are not, comfortable with in a potential child. The list is very detailed and we found ourselves having impromptu discussions to decide things as we went along. Then our social worker asked us if we would consider a child with Down syndrome.   Jessica answered before I even had a chance to think about it: a strong, resounding, “Absolutely!”

What we didn’t know at the time was that a little girl had just been born who would come into our lives and change just about everything. She was born with Down syndrome and with that a couple of the heart defects that are more common with Down syndrome diagnosis. While her birth parents were struggling to make the hardest decision of their lives, this little girl had her first open-heart surgery to help correct an atrioventricular septal defect (AVSD) and co-arctation of the aorta. In the end, her birth parents made the tough decision to place her for adoption in order to give her the best life they could and shortly afterwards our social worker gave us a call – she thought that she had just the child for us. After the span of a couple months (what felt like the longest months of our lives), we finally got to meet our Lily.

In the long version of this story, there were home visits and a giant learning curve as we learned to feed this tiny girl with an Ng tube and syringe. We learned about the symptoms of heart failure and what to look out for. We jumped in head first, as we joined this little girl for her pre-op ECHO and EKG, and on the day she came home with us for good, we met her amazing cardiologist who walked us through exactly what they had planned for her next surgery. We left that appointment feeling a little overwhelmed and thankful that we had almost a week to prepare ourselves….until the phone rang at 9:30pm that night. There was some concern that another surgery would bump Lily’s the following week; would we be able to bring Lily in for her surgery tomorrow?

Time can play tricks on your brain and that day was the longest and fastest day that I have ever lived through. Someone had warned us earlier that Lily’s surgeon often brought families into a room to give them updates at the end of the surgery and not to worry because that didn’t mean he was going to give us bad news. So, when he appeared in front of us hours later, we weren’t shocked when he motioned for us to join him in the smaller sitting room. Then he began to speak. He told us that while the AVSD repair went incredibly well, they were able to confirm a diagnosis of Pulmonary Vein Stenosis. He explained that with this condition, the veins that bring oxygenated blood from the lungs to the heart to pump out to the rest of body narrow and close off completely. He went on to explain that they attempted to repair and open up the veins but that the prognosis was not good: the veins would continue to close over time until Lily lost function of the lung completely. In a blur, we heard words like, “progressive”, “transplant”, and “fatal”. And we just stood there, in total and complete shock: we had just gotten Lily and now we might lose her.

Lily’s recovery had a couple bumps in the road: her sternum remained open for 4 days to allow the swelling to recede; she developed a chylothorax which created a number of pleural effusions (pockets of fluid around the heart and lungs). As first-time moms, and now first-time heart moms, we were terrified. We had no idea what any of these were and what they meant for her recovery. While we were surrounded by so much support and kindness from everyone we encountered, we just wanted to be at home but at the same time, felt very secure knowing that there was always an extra set of eyes watching this little girl. Finally, after 3 weeks, we got the golden ticket: we were allowed to go home!

4 days later, we wished we had never left. We had an exhausting 24 hours: Lily wouldn’t settle and would sleep for only 20 minute bursts before waking up in tears. Shortly after I handed her off to Jessica so that I could get some sleep, I heard a scream: Jessica telling me that Lily had stopped breathing. The next few hours are a blur of calling 911, watching paramedics grab her and run out of the house, having her revived at our local hospital and then transferred to Sick Kids, watching as the police shut down Bay Street so they could get our baby there faster.

We never did find out what caused Lily’s cardiac arrest, a thought that still haunts us to this day. After being readmitted to Sick Kids an ECHO and heart catheter showed that Lily’s left pulmonary veins had closed off completely and she no longer had function of that lung. They also found that a blood clot had formed on her tricuspid valve. There was no way of knowing which of these caused her cardiac arrest or if it was something else entirely and suddenly we were in a new reality. Within 3 days, Lily started having seizures that were indicative of a brain injury, which was confirmed by an EEG and MRI. It seemed as though the cardiac arrest had hit a giant RESET button on Lily’s development and we had a brand new infant. The brain injury affected her sight and caused a Cortical Visual Impairment: for days, we shone flashlight and light-up toys in front of her, hoping desperately for a reaction but she looked right through them.

That was 2 ½ years ago and it’s been the most amazing journey. We’ve had our share of struggles: worrying about weight gain and a developmental delay that sometimes feels impossible to overcome. But then we just look at Lily and see all of the amazing things she has done since that terrible, horrible, no-good, very bad, day. Her vision has come back, she is babbling and giggling up a storm and she is starting school in September. Her heart is strong and her lung pressures have remained stable: we are on yearly ECHO’s! While we have no idea how her future will play out – the word transplant is still on the horizon – she amazes us every single day and she continues to astonish us with how much willpower she has just to keep moving forward.

Image

Crystal

Crystal Trumper  is a regular blogger for Cardiac Kids.  Read her bio and more about Lily’s story here

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

Owen’s Story

DSC06888[1]
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!

 

 

Welcome

Welcome to the newly created Cardiac Kids Blog and thanks for stopping by.

This blog was created with the aim of connecting heart families around the world, as well as raising awareness for congenital heart disease, the most common birth defect, affecting 1 in 100 children worldwide. The authors of this blog are a group of moms, each with their own unique story, but with one very important thing in common, they are all parents of children with serious and complex congenital heart defects. I encourage you to take a moment to check out the “Heart Moms” section of this site to read each of their bios and learn a little bit about who they are. Through the pages of this blog, they will be sharing their lives and their stories, you will get to know them and their families. If you are a heart family, hopefully reading this blog will allow you the opportunity to connect with families facing similar challenges, to learn and share, and most importantly to know that you are not alone. If you are not a heart family, thank you for your interest and I hope you will continue to visit, read and understand the many challenges faced by these incredibly courageous families, and hopefully join us in spreading the very important message of awareness.

Check back regularly for posts from each of the moms, we will try our best to post each week and keep you entertained. Feel free to share this blog with your friends and family and to comment with questions or words of encouragement.

Meghan
Cardiac Kids Director