Mom

Balm for my Heart Mama Soul

I think I can speak for all parents of cardiac kids when I say that our life is filled with a significant amount of anxiety and worry. We all deal with it in different ways and some are better at building their walls than others, but the anxiety is always there.

Doctors told us right from the start of Tyson’s life that there were absolutely no guarantees for his life. His surgeon told us quite frankly that he might do really well after his surgeries and live a relatively good life, but there will always be the possibility that one day we could walk into his bedroom in the morning and find him gone. After three open heart surgeries, five heart cath procedures, and more cardiac tests and procedures than you can shake a stick at, no one can promise me that he will live a long, healthy life. No one can say for sure what his long-term prognosis is. CHDs are a lot like a tornado. You can use satellite to track its course and warn others of impending doom, but ultimately the tornado moves in an erratic path with no rhyme nor reason. It can completely destroy one house while leaving the house next door unscathed. In the same way, one child who the doctors think don’t stand a chance of making it through another surgery can end up kicking CHD in the butt and live a long, prosperous life. The other whom they think is fairly strong from a cardiac perspective drops down dead on the floor one day because her heart just suddenly gives up. It’s true that in life there are no guarantees, but for the lives of thousands of cardiac kids this holds true even more so.

Some days I worry more than others. For Tyson’s whole life, we’ve critiqued and analyzed every little sniffle, every cough, every time he vomits, every day that he appears to have less energy than normal, every time he sleeps more than normal, or says he has a sore chest, or a sore head, or that he feels dizzy, or that his legs hurt. All these things might be normal things that most kids complain about from time to time. But for Tyson, any of these things can be signs and symptoms of congestive heart failure or stroke, brain hemorrhage or blood clot. Being on blood thinners puts him at risk for stroke or bleeding in the brain so we have to closely monitor his INR levels, making sure they are not too low and not too high. Having an AED in the house is not exactly what you’d consider normal, is it? Sending him off to school every day with the chance that the simplest cough could develop into pneumonia and admit him to the hospital – that is worrisome. Having only 18% blood flow going to his left lung, his oxygen levels are low, making him at risk of being hospitalized with what a healthy child would experience as a common cold. And the CVS team at Sick Kids has determined that they’ve done all they can do for his heart and the next step once his heart starts to decline is ‘heart and lung transplant.’

I definitely don’t worry about where Tyson will go when he dies. I have complete confidence in my God and Father, that His promises are true for Tyson and that he’ll have a brand new heart in heaven. That he’ll walk with Jesus with oxygen saturations of 100% and he’ll never need to take another pill or have his sternum sawed open, or get poked with another needle or endure another IV ever again. I definitely know where his home is! But what I worry about most is while Tyson’s heart is made whole, we who are left behind will be left with a huge hole in ours. I worry about the hearts of his older brothers and his sisters, his parents, the hearts of his aunts and uncles, cousins and friends.    Would we be able to carry on without him? Would I be able to guide my family through a lifetime of grief and mourning without our Mr. T? I have no control over God’s plan for Tyson’s life. No control over whether or not someday my children may have to mourn the loss of their dear brother and playmate.   There’s no bandaid I can put on Tyson’s heart to heal it, no medicine he can take to prevent his death, no magic potion to guarantee he won’t ever be hospitalized again.

So for now, we love him. We snuggle him close and hold him tight, kiss him often and enjoy every single second we’ve been given. Laugh often and hold on to as many memories as we can.

I can’t count the number of times other Heart Moms or Dads have asked me how we came to the decision to have another child after all we’d been through with Tyson. “Weren’t you worried you’d have another child with a heart condition?” “Weren’t you scared how you were going to juggle your heart child at the same time as having another baby?”   “How did you decide?”

To be honest, we didn’t ‘decide.’ In reality, the very thought of bringing another baby into the crazy hospital-life we lived terrified me! You can imagine my surprise and fear when I found out we were expecting again when Tyson was not even three years old. Sure, he had completed his three ‘scheduled’ surgeries but his challenges were far from over! He was still hospitalized once or twice a year, and even when he wasn’t in the hospital, he was often sick at home with pneumonia or fighting some kind of virus he had caught; and during the times that he was well we were often hopping from one specialist appointment to the next.  Not only that but we were also raising three children older than Tyson, each with their own unique needs and challenges, each needing our love and attention too. How in the world could we give time and attention to another baby at this time in our life?

I’m so thankful that we have an awesome and loving God that knows our needs before we even ask. As much as she may have been ‘unplanned’ in my mind, God knew that our little Addisyn Faith would be balm for this Heart Mama’s soul. She is exactly what this family needed.

I know these blogs posts are typically supposed to be about our heart warriors. But the next part of my post is going to focus on our heart-healthy daughter Addisyn. I write these words to encourage other families with cardiac children that you CAN move on after having a child with a heart condition! You CAN have healthy children after having a child with CHD! Our son’s cardiologist told us that because we already have a child with CHD our chances of having another CHD child would double – but then he quickly added that the chance of anyone having a child with CHD is about 1-2% so that means the risk of having another child with CHD is 2-4%. Recurrence risks vary considerably depending on the type of CHD, so he said the likelihood of us having another child with a right or left ventricular anomaly was highly unlikely. If you have a child with a CHD, the risk of having another child with a CHD is higher than that of someone without an affected child, but it is still quite low. You may in all likelihood have a child with a completely normal heart.

Was it a stressful pregnancy? Of course! There were minor complications that resulted in several added appointments (as if we didn’t have enough appointments already!) because of an antibody issue in my blood. I was referred to an OB at Mt Sinai in Toronto and had several level two anatomy ultrasounds there to ensure that the anti-C was not attacking our baby’s red blood cells. We also had a fetal echo at Sick Kids so that we could be prepared in the event that we were given another baby with CHD. Thankfully the fetal echo revealed that our baby girl had a healthy, four-chamber heart.   On top of my regular ultrasounds at Mt Sinai, I also had to have bi-weekly bloodwork to monitor the anti-C titre levels. It actually worked out really well because Tyson also needed bi-weekly bloodwork to monitor his INR levels at the same time. Being only two and a half years old, he was not always able to understand why he needed to be poked all the time so it was super helpful that we could do our bloodwork together – and be brave together. The extra appointments added extra stress and anxiety to our lives resulting in several trips to Toronto every month for the duration of my pregnancy.

Sometimes I worried how it was all going to work out, knowing there was a chance Tyson could need a heart and lung transplant if his heart deteriorated any more, and knowing that he could be hospitalized with pneumonia again at any given time. Sometimes I wondered what God was doing in my life; how could we possibly bring another child into the world with all that our family already had on our plates? I admit, I was exhausted with all the appointments that we had for Tyson and for our unborn baby, and the anxiety level in our house was at an all-time high. Our oldest son, who had taken on so much responsibility being the oldest sibling of a CHD warrior, had also endured so much emotionally that year and he struggled with depression and anxiety that winter too. It’s not something I talk about with a lot of people because I feel 100% responsible for the anxiety that he felt. If only I had handled things better at home, perhaps the anxiety wouldn’t have rubbed off on him.

But let me tell you that the birth of our little Addisyn Faith was so very therapeutic for all of us. In the end she was born healthy and well. A cute little six pound twelve ounce bundle of joy, appropriately named because she certainly did “Add to our Faith.’ We had to throw all caution to the wind and just have faith that God knew what He was doing. And He certainly did know what was best for us – of course, how could I doubt? Addisyn turned out to be the BEST thing that could have happened to our family. She was a very happy baby right from the start, sleeping well though the night and very happy during the day. Tyson was hospitalized with pneumonia again when Addisyn was only four months old, but Tyson was able to stay at our local hospital so it was much easier for Brian and I to take shifts at the hospital. And my Mom was able to take some night shifts too so that Addisyn and I could sleep in our own beds. So it all worked out, as it always does.

At times I feel I was robbed of the joys of Tyson’s infancy because we spent so much time doing things that most new Moms don’t ever think about doing: weighing diapers, measuring fluid intake, learning Ng feeds, Enoxaparin injections, cleaning up the aftermath of reflux problems, weekly trips to Sick Kids, stressing over med times. But giving birth to Addisyn healed me from the trauma of Tyson’s first few years of life and restored some normalcy back to our lives. I took her home, nursed her when she wanted to be nursed and let her sleep when she wanted to sleep. Never once did I weigh her before or after a feed, or poke her tiny legs with a needle, or have to wake her up from her nap because it was time for her medication. I was allowed to snuggle her like a newborn baby needs to be snuggled and she spent many hours curled up at my breast bonding with me exactly where a new baby belongs. She allowed me to put closure to my child-bearing years with good memories instead of traumatic ones.

Today she fills our lives with joy and laughter and keeps me busy at home when Tyson and his siblings are at school all day. Because she and Tyson are four school years apart, she will continue to bless my stay-at-home days for a little while longer yet. I often ask myself what I possibly would have done with my life once Tyson hit school full-time and I had no one else to focus on. What would I possibly have done with all my spare time? Now I spend my days laughing at all Addisyn’s idioms like, “Mom, can you please put tiggy-pails in my hair today?” And the way she can finish the sentences in her favorite books before I even have the words on my tongue. She is so full of spunk and life that I simply can’t imagine my life without her. Even though she wasn’t necessarily ‘planned’ by us, God had a plan in mind for her and for us, and He knew how therapeutic she would be for us.

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I want to encourage you, heart Moms and Dads that you can heal after the trauma of having a cardiac baby. You can move on and have another healthy, happy baby. I’m not saying that having another baby will cure your anxiety, but it will absolutely help to dull the upsetting memories that fill your head; the memories that have robbed you from the joys of a healthy baby. In this life of tornadoes, Addisyn Faith was the shelter that I needed to take my mind of the raging tornado for a little while and enjoy the sunshine again.  Will I still feel anxiety from time to time? Of course. I’m pretty sure the anxiety will always be there. But Addisyn Faith was balm for this Heart Mama’s soul.

Melissa 

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.

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

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.

 

4 week pic
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

 

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 

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”

Being a Heart Family

In November 2008 when our son Tyson was born, our world changed forever and we became a ‘Heart Family.’ I’d already had seven years’ experience being a ‘Mom,’ but being a ‘Heart Mom’ is different. It’s not better, it’s not worse; it’s not inferior or superior; it’s just different.

What does it mean to be a Heart Mom? Being a Heart Mom means never looking too far ahead in the future, but trying to live each day in thankfulness and praying you get to enjoy many more. It means taking things one day at a time – some days one hour at a time, and some hours one minute at a time. It means preparing for the worst, and hoping for the best.

Being Heart Parents means we had to brush up on our knowledge of the heart anatomy and how it works, because in three short days our newborn son was having his first of three palliative open-heart surgeries. We had three days to try and understand what the cardiologists meant when they told us ‘your son has very serious, complex congenital heart defects.’ We had to try to understand the complexity of his heart and what the surgeon planned to do to help, and still afterwards mentally prepare ourselves to lay our newborn son on the operating table so that the surgeon can stop his heart, open his sternum, and re-knit his tiny, strawberry-sized heart. Being Heart Parents means nervously waiting hours in the surgical waiting room, hoping and praying that the surgeon’s hands are steady, praying that the heart and lung machine will keep our son alive during the procedure so that he will be given back to us again when it’s over. It means spending hours by his bedside, watching him fight for his life on life-support, with so many tubes and wires you can’t even count them, with monitors and machines beeping constantly.

Being Heart Parents means learning and developing a new kind of ‘normal’ when we finally get to go home from the hospital. It means learning and administering several different medications, trying to make meds with rigid schedules fit into a baby’s unpredictable one. It means doing things that seem so unnatural like having to wake your baby in the middle of a nap because he’s slept too long and we’re already an hour late with his heart medication, or trying desperately to keep him awake for just half an hour more so he can have his meds before he drifts off to sleep. It means weighing him every morning to make sure he’s not losing weight, feeding him low-fat formula when all you want to do is nurse him again, and having home care nurses come to your home to help monitor him for heart failure. It means squeezing his lumpy thighs morning and night, trying to find a new spot that isn’t already bruised and batted up from his anticoagulant injections. It means low-fat feeds, feeding pumps, NG tubes and reflux. It means needles, X-rays, ECHOs, ECGS, antibiotics and IVs. Blood thinners, sedation, MRIs, heart caths, stickers and bravery beads. It means that hospital visits aren’t actually that scary at all, because in a sad sort of way, the hospital kinda feels like home. Being a Heart Mom means learning the hard way that a two-hour car ride from our local hospital to Sick Kids in Toronto takes a mere sixteen minutes via helicopter. It means joining online support groups, living in ‘heart world,’ and having some really good friends on the computer whom we’ve never actually met in person.

Being a Heart Mom means sometimes being consumed with worry and fear. If our cardiac kid sleeps too long or he doesn’t answer immediately when we call his name, we worry about cardiac arrest or stroke. If he drinks too many fluids, it could put undue stress on his heart; yet if he doesn’t drink enough, he could dehydrate and be at risk for a stroke. Being a Heart Mom means monitoring daily fluid intake, and always watching and monitoring sleep patterns, behaviour, colour, and activity levels; checking respiratory rate, heart rate, and oxygen levels.  It means analyzing every little cough or sneeze. Does his cough sound wetter today than yesterday? Is he coughing because he has a cold or is this the start of heart failure? Is he looking bluer today? Does he look puffy? When was the last time he went pee – is he retaining fluids? Did he meet his required daily fluid intake?  Being a Heart Mom means trying not to let the worry surpass you, trying not to expect the other shoe to drop. It means owning medical equipment you never knew existed like pulse oximeter monitors and CoaguChek machines. It means owning an AED and praying you never have to use it.

Being a Heart Family means sometimes spending Christmas, New Year’s or long weekends in the hospital.   Being the sibling of a heart child means learning to roll with the punches; it means knowing that we can never etch our plans in stone because they are bound to change in a heartbeat. They develop an early understanding of life and death, heaven and Jesus, and have experienced the truth that God always carries us through. Being a Heart Family also means never taking a single day for granted and counting each and every little blessing as a gift from God. We make the best of our quality time, because we never know when his time will run out. It means rejoicing over all the little milestones that maybe we’d otherwise take for granted. And thanking God every day for His grace and mercy, acknowledging that it’s all because of Him that we have the blessed opportunity to know and love: a living, breathing *miracle.*

Melissa is a regular blogger for Cardiac Kids. Read her bio and learn more about Tyson HERE
Be sure to check back in 2 weeks for Laura’s next post!

Branden’s First Few Years

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Branden, 15yrs old, had severe aortic stenosis and 2 leaflets instead of 3. He now has the ROSS. This is the story of Brandens first few years,

In the winter of 98, I discovered I was pregnant. After a very difficult pregnancy, my water broke on the morning of Sept 22. I had no idea what to expect. After 2 hrs and 50 mins I was holding my little boy Branden. He was a bit gray; but soon I was holding him again. It was the most wonderful moment of my life.

Once in our room, the nurse listened to his heart said he had a big heart murmur. Which we didn’t think was a big deal.  After 5 days and a lazy sucker, Branden was put into the ICU. The peds on call listened to Branden’s heart and told me he thought there was something wrong with his heart and kidney. Off Branden went for an echo, 2 hours later I was told he was fine, we could go home the next day.

At 7 weeks old I rushed Branden to the hospital because he had a fever of 104.5. The ER doctor told me he was fine that he had  RSV and to give him Advil  and saline and sent us home.  Once home I was talking to my mom and I swear he started gasping for air. My mom told me to bring him back. So off I rushed him back to the ER; it was the same doctor. Let’s just say it wasn’t a good experience but I convinced the doctor to admit Branden to the hospital. The next morning when a different peds came to check on Branden he also believed there was a heart issue. Branden went for another echo. I was at home letting the dogs out when I got a call that change my life forever,  I was told he would need heart surgery. They wanted to send him to a hospital in Ottawa but I asked for Sick Kids as it was close to my parents.

Two weeks later I was at Sick Kids for his appointment. They sedated Branden, did an echo, then we went to meet Dr Benson. I was told Branden couldn’t wait, that he need surgery ASAP. On Dec 1st, 98 I handed my little baby boy to a stranger never knowing what we were getting ourselves into. I think I was still in shock.  Soon after, I entered the heart world,  I was now a young heart mom with a child that has amazing courage and is my hero.

They had a few issues during, what is now called cath surgery. 15.5 years ago I was lucky they did a cath, if he was born 6 months earlier he would of had open heart surgery. Things have changed so much again. They used to use a balloon to stretch the valve now they use a stunt. A couple of the issues they had were that the balloon popped therefore sending carbon dioxide into his body, it also ripped his valve. After 2 nights at sick kids we were sent home. Really the scariest part was going home again. I wanted to wrap him in a bubble and protect him forever.

In 2004 Dr Benson transferred Branden to a new cardiologist Dr  Chaturvedi. After an echo in 2004, I was told Branden would need another surgery as one of his two leaflets clasped. After talking to the surgery team they decided not to do surgery and put Branden on blood pressure pills.  His particiation in physical activities was modified. Each year we went to Sick Kids for check ups. It was more like very 6 months; we always had an extra  echo in Feb; Branden doesn’t seem to like the cold winters. Each winter Branden was allowed to do less and less. To the point where Branden wasn’t allowed to take part in recess or gym. It felt like I had to wrap him in a bubble even more. Dr Chaturvedi brought Branden up a few times for surgery and was always told no.  It was very frustrating as Branden couldn’t lead a normal life like the other kids. I was upset that they kept refusing my child; it was a waiting game that wasn’t fun to play.

In Feb 2008,  I once again called Dr Chaturvedi, Branden was having chest pains. After many trips to Sick Kids for echo’s and MRI’s; it was discovered  Branden heart was enlarged and was filling up with blood. We were told his surgery would be in Sept, after 2 weeks it was changed to Aug. We were going to Sick kids weekly. Soon the surgery was moved to July.

Then in June I got a call the call a lot of heart families fear, Branden had walked up the stairs to class and started having chest pains and couldn’t see. Thanks to an amazing teacher and principal The calmed Branden down and he was sent to the ER.  Branden heart was in distress and after talking with sick kids his surgery was now in 2 weeks.  He wasn’t allowed to go to school and I asked for a leave from work. On June 21st, 2008 Branden met Dr Van Arsdell and his fellow Dr Honjo, they would be performing the ROSS on Branden. During the surgery they changed their minds and repaired the rip in the aortic valve. The surgery was a success.  He recovered from that surgery so fast for the first time in years wanted to run around.

Once he was healed from the surgery, we were able to focus on Branden’s lack of growth. Between 2004 and 2008 Branden didn’t grow which could have been because his heart wasn’t functioning right or could have been the ADHD meds. After meeting 3 different growth doctors, he met an amazing one, Dr Urbach at Sick kids, she was able to help Branden. Although he is still behind, we are seeing some growth. Things were looking up.

The best advice I got from a SickKids nurse was don’t turn him into a cardiac paraplegic. She said to let him live. I realized that I had wrapped him in a bubble for so long that he missed out on a lot of childhood activities.

To be continued ……

Shannon,

Shannon Heighington is a regular blogger for Cardiac Kids. Read her bio and learn more about Branden here

Be sure to check back for Caitlin’s first post