SickKids

The Day I Became a Heart Mom

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My heart warrior is 4 years old. Isabella is a determined, smart, beautiful, energetic and happy little girl. She’s my miracle baby. However, after three open heart surgeries, countless procedures, and many pokes and prods, it never gets easier. You think that it would and that it would be routine for us at this point. But it never gets easier.

When Isabella and her twin sister Olivia were born we were over the moon in love! Five days after the girls were born, we were discharged from the hospital and told to follow up with a cardiologist the following day. The paediatrician heard a murmur in both girls. We heard it was not unusual for babies to have murmurs, so we weren’t overly concerned. So much so that I didn’t even go to the appointment. After taking the girls to their first paediatricians appointment in the morning I opted to stay home. Not even a week from having a c-section my body just couldn’t handle another excursion. So, my husband Vince took the girls downtown with my sister-in-law Lisa, promising to be back in a few hours. Little did I know that those few hours were going to turn into an agonizing few days. The phone call I received from Vince hours later told me something was very wrong. He told me that the cardiologist wanted to do a few more tests on Isabella and that they were going to SickKids. My sister-in-law Susan would pick me up and bring me down so I wouldn’t have to wait at home. He told me not to worry but I knew he was lying. Waiting for Susan to pick me up was excruciating. I knew something was wrong but no one was telling me anything. When we finally arrived at the hospital I knew my instincts were right when I saw my husbands face.

My husband is a very strong man and I have only seen him break down a handful of times. He was trying very hard to keep it together but he broke when he saw me. “Something is wrong with her heart babe”. He led me down a hall, passed Lisa holding Olivia, into a room with a bright yellow sunflower on it. I’ll never forget that room. Every time we are in the emergency room at SickKids and I see that door, this memory comes flooding back to me like a ton of bricks. There in the room, filled with about 10 doctors and nurses, lay my Isabella. She looked so small on that big bed, covered with wires attached to monitors. I broke down. Somehow I got put into a chair and was told that my daughter was very sick but that they were going to do whatever they could to help her. The rest of the evening was a blur. Isabella got moved upstairs to CCCU where they were going to do a 10 hour echo. I didn’t even know what an echo was at that point. All I knew what that my baby was sick. How could she be? She was absolutely perfect!

That evening was our first of many nights spent at SickKids. Our family and a few friends came down to wait with us. We were given a parent room and my sister-in-law and brother-in-law camped out in the waiting room. The next day we were led into a board room and told the awful news. Isabella had a congenital heart defect called Right Atrial Isomerism. It meant that her heart hadn’t formed properly and that she only had one ventricle. She would need 2 if not 3 surgeries in order to survive. This condition also affected her organs, which were oddly shaped and placed and she did not have a spleen. I didn’t hear much after that. I just sat there in shock. Why was this happening to us? How did no one see this? Or did they see it and not tell us? In the end it didn’t really matter. It was happening and I was shocked, terrified, angry and very sad. Most importantly, I wasn’t ready to go home with my heart baby. I wasn’t ready for any of this! Thankfully, we have an amazing support system. My sister-in-law and brother-in-law offered to stay with Isabella on 4D so we could go home with Olivia, break the news to our parents and siblings, and try to get some sleep. It was difficult to leave her but she was in good hands, with people that loved her and would later become her god parents. We knew we needed to take care of ourselves and Olivia because tomorrow was going to be the start of a new life. Our life as heart parents.

That day was 4 years ago. However, even after three open heart surgeries, countless procedures, and many pokes and prods later, I remember that day like it was yesterday. Since then Isabella has defied all odds. She dances, runs, swims, sings, plays make believe and simply never stops moving! She is pretty much on par with her twin sister. She is excited to start Kindergarten in the Fall and her hospital appointments are few and far between. When I think about where she was in the first month of her life and how sick she was, I am amazed and grateful at how far she has come. I am thankful each and every day for everyone at SickKids. The surgeons, the nurses, the support staff… We made special connections with her nurses in those first few months and still keep in touch. Those are lifelong friends we have made as they too saw Isabella at her worst and are proud and happy to see how far she has come.

“You never know how strong you are until being strong is the only choice you have.” Getting the awful news that your child has a cardiac condition is not something I would wish on anyone. It is scary and sad and it never gets easier. However, going through this journey Isabella has taught me more in her 4 years of life than I could ever teach her. She is my inspiration and determination to be the best mother I can be to her and Olivia. It is because of Isabella that I try to live each day to the fullest and not sweat the small stuff. I am extremely proud of my little heart warrior. She calls us (her sister, daddy and myself) “heart warrior helpers” because we, along with the doctors, helped fix her heart. For that I am truly honoured and proud to be a heart mom. #heartmommy4life #heartwarriorhelper

Danielle

Danielle is a regular blogger for Cardiac Kids, click here to read more about her and her Heart Warrior Isabelle

Stay tuned for a post next week from Crystal

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1 in 100…Times three. In my family, there are three of us born with CHDs, myself, my nephew, and my daughter, Amelia. Amelia is my cardiac kid born with complex congenital heart defects in May 2009.

My awesome nephew, Aidan, has a CHD that is electrical in nature, it’s called Wolff-Parkinson-White (WPW). In WPW, there is an extra electrical pathway between the atria and ventricles. A symptom of this syndrome is a rapid heartbeat. When he was around 3 years old, he started telling us that “his heart was beating” and our natural response was “that’s right, your heart is beating, good for you, what a smart kid”. Over a six month period or so though, he started mentioning his heart beating a couple of times like this. It wasn’t until he said it during no activity, my sister put her hand on his chest and could feel the rapid heart beat. She knew something wasn’t right and brought him to the emergency room at Sick Kids. In an incredibly fortunate coincidence, the ER doctor that examined Aidan that day had a 5 month old child that had recently been diagnosed with the same syndrome and spotted it right away. As with most people with WPW, he lived relatively symptom free with a few episodes of tachycardia yearly. At around 8 years old, he started taking medication but that seemed to make him more lethargic and out of breath. When he was around 17, his episodes started to increase in frequency and it was decided that he would go through with a heart catheter ablation that would destroy this extra pathway, with a success rate of about 95%. He was 3 days shy of his 18th birthday when he had the catheterization done at Sick Kids. Being able to have this procedure done at Sick Kids played a huge role in the decision to have it done at all. Any heart surgery or procedure is frightening so electing to have one is an extremely scary decision to make. What made his decision easier was his baby cousin, Amelia. Amelia was almost 2 at the time of his procedure and had already had more heart catheter procedures than I can remember, that’s not including surgeries. He gave himself the “suck it up” pep talk and was wholly inspired by our little trooper. It’s been 4 years since his heart catheter ablation and 4 years since he’s had an episode.

As I mentioned, Amelia was about 2 years old when Aidan went in for his procedure. That means I had also just spent about half of those two years in and out of Sick Kids, and a lot of time in that cath lab. So as an amusing side note, when I showed up to the recovery to see Aidan, the nurses instantly recognized me but scanned the beds looking for my little girl not expecting me to be there for the over six foot tall man, with his feet hanging off the bed. Also amusing is that his one complaint coming out of the catheter is that his ankles were hurting for that very reason.

Our sweet baby girl, Amelia was born with DORV (Double Outlet Right Ventricle) along with other heart defects that often accompany that diagnosis like AVSD, holes between the atria, holes between the ventricles. She also has mitral valve issues. Her condition is by far the most complex of our three diagnoses, requiring the most intervention, follow up, monitoring, lifelong care. In other words, completely terrifying, with an unknown outcome. What DORV means is that both her pulmonary artery and her aorta were attached to the same ventricle when each of them should have their own. One of the “fixes” for this defect is to do just that, attach one of the arteries to the other side but because of the other heart issues like the mitral valve problems, they could not do this type of surgery. They were always fairly certain that they were not going to be able to do this but they couldn’t know for sure that this wasn’t going to be an option until they actually went into her heart and took a good look. Again, what a terrifying thought. With the feeling that they were not going to be able to do the switch, we were told that Amelia’s best option would be to move towards a univentricular heart, ignoring the fact that she has that left ventricle at all. She has had three surgeries to “repair” her heart thus far, a PA (pulmonary artery) banding, the Glenn, and the Fontan. We don’t know, long term, what that will mean for that left ventricle as it shrinks inside of her not getting used.

Before my daughter was born, I hadn’t given much thought to the fact that I had heart surgery as a baby. I didn’t know the statistics of 1 in 100. I didn’t know because my case was a relatively common and easy “fix”. I had surgery in 1980, at the ripe old age of 2, and have had no follow up since. We didn’t ever talk about it growing up beyond anecdotal stories and there was no internet or Dr. Google back then for me to do extensive research of the topic. I had a PDA (Patent Ductus Arteriosus) closure. If you happen to google PDA, it’s third on the list behind Personal Digital Assistant and Public Display of Affection, can’t be that serious of a defect, right? The DA is something that usually closes within the first few weeks of life, it’s one of those things we need in utero but as soon as we start breathing air, it’s no longer required. Normal blood flow is affected if it does not close and my family doctor heard that through a murmur. The same family doctor that heard Amelia’s thundering murmur as well. As I saw when strolling the halls of the cath lab, they do the PDA closures there for the most part. I couldn’t believe that the surgery is done through cath when I have a scar that traces my entire left shoulder blade – check it out. It’s obviously much more faded now, 35 years later but still very visible. Now the procedure leaves no scar at all, unbelievable. Oh, and my surgery was done at, you guessed it, Sick Kids!

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I plan to eventually write about Amelia’s surgeries here as well. I have many notes from those days but in all honesty, I fear for the safety of my laptop when I start reading them over again, it is not waterproof afterall. The Glenn was the worst of the three surgeries for her which leaves me with some of the most traumatic memories from our many stays at Sick Kids. One of the lines I repeat over and over again about the first 3 ½ years of Amelia’s life is that her time in hospital recovering from surgeries is something she’ll probably never remember and something I’ll never forget. At least she won’t remember the same things I do about her stay. Since I have a basis for comparison, I was 2 when I had my surgery, there are 3 things I remember from my stay:

1. waiting in line to have blood drawn and dreading it

2. a nurse scolding me for taking another child’s scissors in the playroom (or possibly for just      having scissors, I was 2 after all)

3. my daddy brought me a pint of strawberries (this one seems sweet but it was traumatic because he told me he had gone strawberry picking for them which meant to me that he had gone strawberry picking, without me, while i was stuck in the hospital. Having fun without me. It wasn’t until many, many years later that I realized he was just kidding about having gone, ha)

That’s us, three CHDers, one family. I mentioned to a CCU nurse one time that I had had heart surgery as a child and she asked me if it made me feel better about Amelia and her condition, knowing that I came through it okay. I remember replying that no, it did not, it made me feel guilty and responsible for causing this to happen to her somehow. I know logically that is not true and I’ve been told time and time again by doctors and nurses that is not true but that’s how I felt at the time. Now that we’re almost 6 years into this journey with Amelia though, I can say that having been born with CHD as well does make me feel better. Amelia and I can share a sense of camaraderie through our battle scars or as she said to me the other day, “me, you, and Aidan are the lucky ones in the family because of our special hearts”.

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Tara

Tara is a regular blogger for Cardiac Kids. Click here to read her bio.

Stay tuned later this week for a post from Heather 

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.

Getting to Say Thanks

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On July 14, 2011 at 7:30am, 2 men became our family’s heroes. From that moment on it seemed incredible to me that we had barely spoken to them, didn’t know their names and never had the chance to say thank you. How was it possible that there were people just out there that had played such a huge role in our lives and we knew nothing about them. This had been on my mind for quite some time and after going back and forth I reached out to Toronto Paramedic Services and asked if we could arrange to meet these men. I wasn’t sure what to expect; you see stories like this in the media and I always wondered how the paramedics really felt about these meetings. For someone who is not a paramedic, I had always imagined that the most difficult part of their job was the fact that they have to walk away without knowing the outcome of the call. Did meeting people just feel like another obligation of the job or does it actually help to bring some closure? The commander who responded to my request answered that question right away – both of the paramedics who worked on Lily remembered her call vividly and were excited at the chance to meet again.

To say that we were nervous would be a complete understatement. What do you say to the people who actually saved your child’s life, who literally kept her heart beating? We’ve had doctor’s do that, who have held Lily’s heart in their hands and we’ve been able to thank them, but this just felt different. Perhaps because there was no plan, no preparation on their part; they didn’t have scans or echo’s to look at, they just had the information that was coming up on their screen and with that little information, they created a miracle and saved us from a life of grieving. I didn’t know how we were going to get through saying hello without turning into a blubbering mess, let alone actually get out the words that I wanted them to hear.

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It was incredible to sit in a room with them, to have them see Lily with their own eyes, to her the story of that day from their point of view. They were able to give us information that we never could have known without them. They told us that, contradictory to what we had always thought, they were both in the back of the ambulance working on Lily and they actually thrown the keys to a police officer and had him drive. They were incredibly careful not to communicate with words so that my wife, who was in the front, would not panic because they were also scared that it wasn’t going to end well. We found out that one of them had made a special trip to Sick Kids after their shift ended that day to come and check up on her (under the guise of picking up a piece of equipment). We sat in silence, and tears, and listened to the 911 call and I have never been more proud of my wife. I can hear the fear in her voice, hear how terrified she was but she didn’t allow that fear to win – the recording could be used as an example of the perfect 911 call. She was so calm, communicating all of the information so quickly and clearly and she was one step ahead the entire time: she had already put our dog in the crate and opened our front door before the dispatch operator could suggest it. While I had known that arrangements had been made to give us a recording of the call, I didn’t know that we were going to listen to it that day and I started to panic when they queued it up: could listening to that call do anything good or would it just bring all of the painful memories screaming back? But something happened as we listened, listened and watched Lily sitting on the laps of the men who saved her: it felt like healing. Towards the end of the tape, you can hear the sirens wailing as the paramedics pulled up to our front door and even from where I was sitting I could feel the relief again, knowing that help was so very close.

It was hard to be eloquent though. I had so many things that I wanted to say to them but struggled to put those thoughts into words. How do you say thank you? How can you possibly put into words what their actions meant to our lives? I stayed awake quite late the night before we met thinking about what to say, because I knew that I had to be ready; that if I left it to chance I would miss something important and regret what I didn’t say. In the end, I realized that the only way I could ensure that was to write it down and I’m so grateful that I did, because while I got through saying hello, when I did try and say thank you, I was left in tears and I became the blubbering mess that I had been trying to avoid. So while I won’t share the entire letter with you, I will share this:

“To even think of a world without Lily breaks my heart and we came so close to that being our reality. You not only saved her life that day, but you saved ours as well – you saved our entire world. So, thank you. Thank you for coming into our lives on the very darkest day and giving us back the sunshine. Thank you for giving Lily back to us. Without you we would be nothing and so thank you for giving us everything.”

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Crystal

Crystal is a regular blogger for Cardiac Kids. Click here to learn more about her and to read Lily’s story.

Stay tuned next week for a post from Laurie.

**Photos used with the permission of Toronto Paramedic Services**

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.

How to Be a Friend to a Heart Mom

So you have a friend whose child was born with a serious, life-threatening heart condition. They’ve lived the past few years in and out of the hospital, they’re constantly busy with appointments, procedures and tests for their child, and you can tell that they are often run-down and stressed out. Do you find yourself thinking about them often, wondering how they’re doing but not knowing what you can say or do to help them? I have some pretty incredible friends in my life who have been with me through a lot of ups and downs in the past six years. Here are some examples of the things they have done for me in the past (and continue to do) that mean a lot to me – things which you can do for your friends who are raising a cardiac kid.   Keep in mind that many of these could also apply to friends who are dealing with other medically fragile family members – like their parents, sibling or child – so if you have friends in that situation these tips would be helpful too.

  • Be there. Listen to her when she expresses her joy about milestones reached, steps taken, teeth lost, or report cards issued. It’s likely that she treasures the little things in her child’s life because she might not have expected them to ever happen. If she’s venting about something, don’t feel you always have to find something brilliant to say; sometimes you just need to listen and let her express it. You may not always understand what she’s feeling, but she just needs you to lend her an open ear. Don’t forget to give her a warm hug if you think she may need it.
  • Stay in touch. Call her, text her, email her, or come for a visit – not every single day, but enough to let her know you care. She needs to feel supported and loved and needs her friends to stay in her life. Don’t ‘not call’ her because you feel she’s probably too busy to chat. Reach out and call her – and if voicemail picks up, leave a message letting her know that you’re thinking of her.
  • It’s ok to ask questions. When you don’t understand what she means by certain tests or procedures or medical jargon, just ask her. She wants her friends to understand what is going on in her child’s life and what he’s going through, so that you will know how to pray for her and her child. Don’t hesitate to ask her other questions like, “What do you need?” “What can I do to help?” And, “How can I pray for you and your child?”
  • Offer help. If you know she’s had a busy week filled with appointments and therapies for her child, offer to make her family dinner, do some light housekeeping, or offer to babysit her other children. Offer to drive her to her appointment if you know that the drive to the city is stressing her out. Sometimes that one appointment can take all day long and suck the energy right out of her, so having someone offer to drive could be a huge stress-relief for her.  If you think she might be run-down with the day-to-day caring of her child, offer help.   Ask her to teach you how to operate the feeding pump, administer medications, or monitor oxygen levels so that down the road maybe you could watch her child for an hour or so, while she gets out and enjoys time to herself or time with her husband and other children.
  • Offer support and encouragement when she expresses her feelings or anxious thoughts (and definitely don’t criticize them.) When she talks about fears of her child getting sick or dying, or when she worries because he’s been sleeping a really long time, don’t tell her that she worries way too much.  She is raising a child with a life-threatening condition – there is going to be some anxiety that comes with that. Her fears are very real and shouldn’t need to be validated and they are likely there for a reason. It may be because of what her child’s surgeon frankly told her when she asked about the long-term prognosis of her child, or because her child has all kinds of other health concerns that stem from the heart condition and/or surgeries – vision problems, after-effects of a stroke, side effects from medications, or learning disabilities. It could also be that she’s thinking of the families who are no longer holding their child in their arms this Christmas but are mourning for their child who fought so hard. Whether it’s post-traumatic stress or anxiety about the future, try to understand that her anxious feelings are not going to disappear overnight, if they ever do at all.   The harsh reality of CHD is that the farther away her child is from his last surgery, the closer he is to his next one.
  • Don’t give up on her in her darkest hour. She may go through difficult times when she closes herself off from you and her other friends, hiding from the world and declining invitations to go out. Don’t give up on her. It may be tough to always be the one pulling her out of her shell, but she needs you. Other people might think it’s not worth all the hassle, but real friends don’t give up on her. So remember that she needs you to not give up.
  • Invite her and/or her child to your party. When you’re hosting a social event at your house, don’t ‘not’ invite her because you think she won’t be able to come anyway. When you host a birthday party or other fun social gathering for your kids, don’t ‘not’ invite her child, thinking he probably won’t come anyway because he could get sick. It’s more hurtful for them ‘not’ to be invited, than it is to be invited and have to gracefully decline. Leave that decision up to them. They’ve been making tough decisions for their child his whole life; they can handle turning down an invitation if they need to. Invite them anyway; it’s the thought that counts.
  • Don’t send your sick child over to their house. EVER. If you’ve ever seen a child with a breathing tube, fighting for his life in Intensive Care then this needs no further explanation. Families with a heart child have likely spent weeks or even months at a time in the hospital, and they like to stay home as much as possible where they can be together with their family. When you are healthy enough to visit their home with your children, hand-washing is very important too. The virus you could be carrying on your hands and bringing into her house can be disastrous for her sick child.
  • Stop calling her a Superhero, or Superwoman, or SuperMom. While she might timidly smile when you say this, inside she is absolutely cringing because she knows it’s not she who’s the superhero, it’s her child. He’s the one who has dealt with all the poking and prodding and endless medical professionals in his face yet still finding reason to smile and be joyful when he wakes up each morning. Saying things like “I don’t know how you do it,” might seem like a nice compliment about her super powers, but saying this actually makes her realize her failings and remember how tough it really is sometimes. She doesn’t want to be reminded of how tough it is. If you insist on saying this to her, follow it up with a “How can I help make things easier for you?”
  • Be sensitive and think about what you say before you say it. It can be very difficult when she’s spending the holidays in the hospital with her sick child and all you want to talk about is the awesome time you just had in Florida over Christmas. It’s hard for her to admit that while she and her family are split apart over the holidays and she and her child are seeing the same four walls of the hospital room day in and day out, the rest of the world keeps spinning and her friends are out having awesome family time.  I’m sure she’d love to hear all about your trip once they’re home and settled again. Also, try not to say things like, “It really doesn’t look like there’s anything ‘wrong’ with him!” While this may be true and you might intend it as a compliment, we know that things can change in an instant. He may look really good today but tomorrow be lying in a hospital bed. Just because you can’t see anything ‘wrong’ with him it doesn’t mean his life is easy. Instead, you could say something like, “Wow, he looks great!”

I really wanted to keep my list simple and include only ten things. But #11 and #12 are really important too!

  • Try really hard to remember important dates. If her child has an upcoming test like an ECHO, MRI, cardiac cath or surgery, try to remember those dates (particularly the ones involving intubation and general anesthetic – those ones are the most stressful.) There might be a lot of them to remember, but you could write them on your calendar so you don’t forget. On the night before or the morning of the big day, send her a quick text saying that you’re thinking of them and hoping all goes well.  Remembering the important dates and letting her know you’re thinking of them will mean a lot.
  • Be an organ donor. Wait, what? What does being an organ donor have to do with being a good friend? EVERYTHING. It means you’re listening to her when she talks about the importance of organ donation and the fact that her child will one day be a recipient. It means you hear her. You get it. So as soon as you’re done reading this list and before you exit this page, click on beadonor.ca and register you and your family members for organ donation.   Your choice could one day save the life of 8 people and enhance the life of 75 others.

Melissa

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

Stay tuned this week for a post from Caitlin

Winter Struggles

With the winter coming faster in some areas then others, I thought this was the perfect time to talk about the struggles some heart kids face in the winter months.

Branden from the age 5 and up seemed to always struggle to keep warm in the winter. You would often see his hands/face red or blue and his toes too. It didn’t matter if I spent the $100 or $400 on the best or warmest jacket the companies declared, he just never could keep warm. I know $100 doesn’t seem like a lot today, but it was 15/16 years ago. But it got to the point where he wasn’t allowed out at recess during school day and long fun trips to the local hill turned to short trips for tobogganing.

When Branden was a baby and living in North Bay and relying on the bus system and walking to and from daycare Branden was fine in a good winter jacket and snow pants, bundled up with a blanket. It wasn’t until we moved south and he started to go to school did I see the big change. In February 2004, Branden started turning red fast and sometimes blue. No longer did the warmest jacket work. He couldn’t control his body temp. His arms turned to what I call “marble cheese”. I went with my gut and called sick kids. Off he went for a unscheduled echo. They discovered one of his two leaflets clasped. For the next 10 years it was a up and down battle to keep him warm.

Branden started off by staying in at recess on really cold days. (School should accommodate your child’s special needs). For the first few years he was sent to the office with actives that I provided. He was allowed to bring a friend to play the games. For the most part it seemed to always be a girl, I guess they had a soft spot for him. This worked for a bit but the battle to keep him warm continued.

It seems the unscheduled echos in Feb/March became almost like tradition. For 10 years every Feb/March I would called his Cardio Doctor and say Branden isn’t looking right. Most of the time he was fine- twice he wasn’t. BUT nothing would keep him warm during those cold winter months. I spent hundreds of dollars on new snowsuits the best of the year the warmest jacket ever. I would buy thermal underwear and shirts, the thickest socks. Nothing kept him warm. It was crazy. So no longer was he able to go out on the nicer winter days at recess. He started joining some clubs the schools ran and some, like Lego club was a big hit for him. Branden’s only time spent outside was walking to and from school. It got to the point where I felt like the weather police and kept him hostage in the house. Which was sad as he had younger siblings who had no issues playing outside. (I would let him out for a 20 mins at a time, but I guess this was the year Branden realized he wasn’t a regular child). But all through school from Jk-grade 8 Branden wasn’t going out during the cold days he lost and never had the chance to learn social aspects of play outdoors with other kids..

So how do we keep our heart babies, toddlers, children, teens and almost adults warm?

It gets harder to do, with the new suggestion from private organizations that have done some research on this on what is safe and unsafe in regards to car seats.

If you can’t put snow suits in the harness car seats, you can’t use those nice warm JJ coles bags any longer to bundle up your baby it gets harder to keep those little ones warm. I know with baby number 5 all these suggest came into place, we have seen them pop up on our local news feeds on facebook, in the papers and maybe even on yahoo. I worried about how to keep this youngest one warm and she isn’t even a heart baby. I researched a lot to find an infant car seat that sold a warm bag, that you were allowed to keep in the seat. I bought the plastic cover to go overtop the car seat ( best invention ever) and put a warm blanket on top of the seat while going from house to car. I also bought a fleece suit; it was thin and safe to go in the seat. She was warm all winter.
It gets harder when they are out of the infant seat. If you can’t put kids in seats with snow suits how do you keep them warm. There are a few suggested jackets that would be safe according to all of the research I have done. Primaloft is one I have found in my research if you lucky and get a code you can sometimes get it for 50% off at Gap. These are some of the struggles a mom’s of of little ones face, But would that car seat approved jacket, keep a heart toddler warm outside building a snowman? ( we all know we are building Oalf’s this year). I wish there was a magical answer to this question. I wish the Doctors would give us a manual of what to buy them to keep the safe and warm.

But I guess there isn’t. Each heart child is different, some can handle the weather changes and others like Branden can’t. I think it depends on which stage they are in during their heart journeys. I can say what worked for my heart child in the last 16. It really is trial and error and learning from experience. I wish heart parents would share more often what has worked for their kids so parents wouldn’t have to struggle so much.

Things that have worked for Branden:

I have bought many brands over the years nothing kept him warm or if it did it was for a short time frame. I started researching jackets and brands of what people used when climbing snowy mountains or people who camped in the winter. I checked out MEC which is a supply store I heard many people talking about. I talked to people who work outdoors all day long in all weather conditions. Through out my research one of the Jackets I have found was the down filled North Face jacket. I went to a store near by that sold them. I got one 50% off. I tend to buy in Jan/Feb where they are trying to get rid of winter stock. I gave it a try, when Branden started fooling around on the coldest days instead of doing his papers I knew for once I found a jacket that kept him warm. I can’t even say Branden was in great health as we knew our days were number to the next surgery. But he was out for a few hours and wasn’t cold. I felt like I found gold. He needed a good warm jacket and snow pants, good Sorel boots, thick socks, layer clothing and a hat. Finally at 14 he was able to join the cold winter weather.

These suggestion might not work for your child but they might also. Lets start talking more about what we do to keep our kids warm and safe this cold winter.

Here is a blog of other suggestion
http://carseatblog.com/24645/baby-its-cold-outside-winter-coat-suggestions-for-kids-in-carseats/

http://www.thestar.com/life/2013/01/21/for_children_in_car_seats_snowsuits_bunting_can_pose_a_safety_risk.html )

Shannon

Shannon is a regular blogger for Cardiac Kids. To read more about her and her son Branden click here

What’s Next?

As parents who love our kids it is our job to ensure that they have the best possible care. We give them the medications, we take them to every appointment, we hold their hand for every blood draw, we sign consent for every surgery, we shed tears with them when it hurts, we hug them when they are scared, we seek therapy for them when they need added help. In every way we seek to make their lives as great as possible, we strive to give them as normal a childhood as possible; sometimes we succeed and sometimes as hard as we try to we have to admit defeat.

I am generally a fairly hopeful person, it wasn’t until Joshua’s third surgery that it really struck me. There is no cure for what ails my son. It doesn’t matter what I do, I will never be able to fix his heart. It was a bitter pill to swallow, one that still has a bitter after taste years later. As I wrestled with the idea of Josh always having a heart defect I also began to research what his future will look like. I wanted to be as educated as possible, what I learned was disturbing but not hopeless.

In the 1950’s and 60’s a child born with a congenital heart defect had a twenty percent chance of surviving to adulthood. Fortunately, today, ninety to ninety-five percent of children born with a CHD survive. The growing number of survivors is leaving us with a beautiful yet unique problem.  Where we have never before needed an adult care system, we now have a desperate and constantly growing need for specialized cardiologists in the field of Congenital Heart Defects.

When Joshua turns 18 he will leave the safety of his paediatric hospital and enter an unknown adult world of medicine that is not ready for him. He will leave Sick Kids and be met with new doctors who may not be specialists in the world of congenital heart defects. As a parent I have learned a great deal about the medical system from pre-natal, through to pediatrics and now realize what the adult care system is currently facing in terms of larger numbers of survivors, a lack of specialized doctors and health care providers.

But what would happen if there were a place where adult CHD patients could all be treated with equal care, equal value–just one all encompassing system such as they already receive as kids? What would happen if we had a place for all CHD patients—baby, child or adult? What would happen if we went to one place for prenatal care, paediatric care and then adult care? What if Josh, who has always been followed by one specialized cardiologist, whose surgeries were always done by the same surgeon, was followed throughout his life by the same institute, the same care providers?

I see all the problems that face Josh and survivors like him, I see the lack of specialists in this field, I see the lack of education for the patients leaving paediatrics, I see the cracks in the system that are just waiting for kids like Joshua to fall through and I see a deep need for change. As parents it is our job to take care of our kids, to help them in any way that we can; I cannot cure my son, I can’t fix his broken heart, but I can do everything in my power to see that his future is as secure as possible. I can make sure I tell everyone who will listen about this silent killer who stalks our kids. I can do whatever is necessary to see a place like this dream institute can become a reality.

This is not so farfetched a dream. It only needs an action plan. It needs people like you, people with a voice, people who care about the future of our children, people with the power and will to make things happen, to ensure change.

Laurie

Laurie is a regular blogger for Cardiac Kids. To read more about her an her son Josh click here 

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

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.

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

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.