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Owen and Devyn’s Story

Three of our four children were born with a heart murmur and they were all born premature (34 weeks, 36 weeks, 36 weeks, and 35 weeks). Our first son, Owen, was born 6 weeks early at 6lbs. He stayed in the NICU for 21 days, and in that time, they heard a murmur and we were sent to the Stollery to have it checked out.

It was one of the hardest days I’ve had as a mom – on top of the usual new mom hormones, I didn’t get to hold him after he was born, he was whisked away to the NICU immediately after birth and when I did get to see him, he was in a ‘giraffe’ incubator, with so many tubes and wires and iv’s all over his perfect little body. I didn’t get to hold him for 2 days. I didn’t get to try to breastfeed, as it would tire him out too much. The pumping wasn’t working for me – if I got any milk at all, it was so minute that it had to be sucked out of the bottle with a syringe. All these other mom’s milk buckets in the NICU fridge were overflowing with bottles of their breast milk… What is wrong with me? I can’t even feed my own son? He also kept having desats and his monitor was constantly beeping. I was defeated. Nothing was going right.

Nothing about this experience was what I had planned. I never expected to leave the hospital without my baby…

When we headed to the Stollery for his echo, we were transported by ambulance and I cried the whole way, my husband followed in our Jeep. We went through the motions that we would later come to know as routine and honestly, it was all a blur. He had an ECG, an echo, an x-ray and more. He screamed when they put him in that little x-ray tube. I was in the hallway and could hear my newborn baby crying and could do nothing about it. After all the tests, we met our cardiologist, Dr. Coe. The only thing I remember from this point on, was him telling us that our son was born with a hole is his heart (VSD), a Bicuspid Aortic Valve (2 leaflets in his aorta instead of 3), and Aortic Stenosis (a narrowed Aorta). My heart sank. What does this all mean? Will our baby ‘be normal’? What will his life look like? Dr. Coe went on to explain that we will keep an eye on him by watching for certain things at home as well as regular cardiology appointments. “We have to see how he copes with his heart defects and go from there.” Will he have to have surgery? What do you mean we watch for signs of heart failure? This is my baby. What did I do wrong?

In the first year, we went for 5 cardiology appointments, nothing really changed, he had no visible signs or symptoms that he wasn’t a ‘healthy’ baby. We were careful not to let him cry too much, as we didn’t want to put any more stress on his heart. We watched him like a hawk… are his lips blue? Is he sweating? Is he more tired than usual? He never had an issue. We became pregnant with our second child and were referred to a specialist to check her heart, in utero. They said she was a heart healthy baby! Yay! Again, throughout this pregnancy, I did everything by the book, just as I did with Owen’s.

Devyn was born a month after Owen’s 2nd birthday, 4 weeks early. She only spent 4 days (I think) in the NICU and again, they heard a murmur and wanted her checked out. But you said she had a healthy heart. There was nothing ‘wrong’ with her.

At our cardiologist appointment, we got the news that she, too, was born with a heart defect (Bicuspid Aortic Valve) and would require the same things as Owen, in terms of what to watch for and routine checkups.

We were told that one day, just as Owen would, she would also require surgery to replace the valve… When would that be? They didn’t know. It all depended on how they coped.

We had 2 more children over the years, one heart healthy, and our 4th, with an ASD, which later closed on its own. We went on living our lives as usual… yearly cardiology appointments, and luckily, no medications, complications, symptoms or anything! We were so lucky. The kids both played sports and are active with no problems. That is, until Owen turned 8.

At his yearly appointment, we went in as usual, went through the motions and were waiting for the cardiologist. We were asked to see a social worker (which was strange… we have never been offered this in the last 8 years, why now? She didn’t know either… we said hi and went back to the waiting room). Another unusual event – we were asked to see Dr. Coe in another part of the building, not in the pediatric cardiology unit… Ok, maybe the exam rooms were full… This is where we found out that our youngest’s ASD had closed, Devyn was still doing fine, and Owen wasn’t. His VSD is very close to his aorta, which is creating suction to the leaflets in his aorta and causing damage. If the VSD isn’t repaired soon, it will cause permanent damage, leading to more potential surgeries. Then we waited for the phone call with a date. It seemed like forever. All we knew was that surgery would be sometime in the next 6 months, so we got all his dental work done, explained what was happening to our kids, talked to his teachers and our employers, and we waited…

When we finally got the call, surgery was in 5 days. We let Owen play in his last hockey game, despite the germs, because – What if? What if there were complications? I “what iffed” myself to death. I feared the worst. I kept everyone home from school, as to try to keep everyone healthy, and we went up the day before for Pre-Op. It was all unknown, it was scary, and it was hard. Owen was terrified, but we had to be strong. I had to hide all of my fear & what-if’s and show him that we would all get through this. We were as ready as we would ever be. Then, we got a call the morning of surgery saying we were bumped until the next week.

Surgery day was hard.

We had my parents and brother there for support to keep our minds busy while we waited for what seemed like forever. While waiting to go in, a nurse was going over his chart with us and said, “We are doing a VSD and an ASD repair, while checking on his other defects, to make sure they can wait.” Um, no… he doesn’t have an ASD… Well, actually he did, the surgeon found it the night before while going over his charts. Sending him off was awful. We went for breakfast, watched tv, and waited. I’ll never forget when the surgeon walked around that corner… he had no expression on his face. None. My heart sank… “Owen did very well. There were no complications. They are just setting him up in the PCICU and you can see him in about 15 minutes.” We were all so relieved. It was awful, yet amazing to see him after surgery. He had tubes and wires and IV’s EVERYWHERE. He cried when he saw me. I did, too. He kept crying that he was thirsty, yet couldn’t have anything to drink, not even ice chips. We took turns being in there with him. We promised he would never be alone. Hours later, when he finally got to have a drink, he vomited multiple times (due to the morphine) and I couldn’t imagine how he felt. He settled in, and despite being in pain, didn’t complain and quietly watched movies with us. We spent 2 nights in the PCICU, got most of his iv’s, his wires, and his catheter out, then were transferred to the step-down unit.

He finally got up to walk, and was so uncomfortable with the chest tube in. It was awful. He was always told before something was removed, that it wouldn’t hurt, but just be uncomfortable. Well, he didn’t agree. He became so anxious when anybody came in his room – heart rate up, breathing heavy, scared. When they finally removed the chest tube, we asked for something to help him… which I am so glad we did. It still hurt, but he wasn’t freaking out about it, it was do-able. Once that chest tube came out, he was a whole new kid! He got up, walked around and was happy again. It was so nice to see. We were discharged on the morning of day #5 and everyone was happy to be home.

He felt so good, so soon, that he wanted to get right back into hockey and go back to school. He was sent home on Tylenol and Advil as needed (WHAT??? Crazy, if you ask me!) We made him rest at home for a week, then sent him back to school. He started practicing with his hockey team 5 weeks post-surgery and playing the following week. But he wasn’t completely healed… his heart was, but his mental being was not. He was extremely moody, cried over everything, and had anxiety every day. I am thankful that we paid attention and saw it, as it can continue to grow and get worse, as opposed to ‘just going away’. I spoke with his school social worker to see what to do and we started weekly meetings with her. Since then, things have got better, not back to normal, but much better. He is learning coping skills, he is learning that it is ok to be scared, and he is learning that he is still Owen, despite the battle scar he has on his chest.

We are now back to the waiting game. Both children will have to have multiple surgeries over their life time to replace their Aorta (which will have to be changed as they outgrow them), but when? We don’t know. Could be next year, could be in 30.  So now, we watch for symptoms and we wait.

One thing I know now – Our Heart Warriors are the strongest, bravest and most amazing people on this planet. Their resiliency and courage are second to none. These little people, no matter what age, are the strongest people there are.

 

Josie’s Story

Josie was born January 4th, 2017 via c-section, weighing 7lbs 3oz.
She was taken to the nursery and put in an isolet because she had a bit of “wet lung”. During her first night, the nurses noticed rapid breathing and trouble feeding. After putting her on monitors, they noticed her heart rate was high but her oxygen level was never under 93.
We were discharged a few days later with a precautionary echo booked for Feb 1st in Regina. (A small hole was detected in previous fetal echos, but doctors were confident it had closed before birth or would close shortly after).
Fast forward to January 16. Josie had been having trouble gaining weight and throwing up after every feed. She would sleep almost all the time and rarely cried. The final sign that made me take her to the doctor was her shallow, wheezy breathing. If I hadn’t had two other children, I may of passed this off as normal too. We went to our GP, who contacted the paediatrician on-call at Regina General Hospital. Josie and I sat in the ER waiting room for 5 hours before being seen. I was sick to my stomach wondering what could possibly be wrong and being paranoid that someone in there would make her more sick.
After finally being seen, I heard the words for the first time, the words that feel like a punch to the gut… “Heart Failure”.
The next day, Josie had an echo, an ecg and a chest X-ray. The following day, Dr Bradley was doing a clinic in Regina and came up to explain Josie’s findings. She had a moderate VSD (ventricular septal defect) and a small ASD (atrial septal defect). We were hopeful that both would close on their own with the help of medication. She was also put on medication for acid reflux to help keep her feeds down. It was also found that she has a bicuspid aortic valve that needs no interventions for the time being.
The next few months were filled with trips to cardiology clinics in Regina, sleepless nights, weeks spent in the paediatric ward at RGH, formula changes, NG Tube feeds and training, visits to health nurses and our dietician for weight checks. Nothing was helping. After deciding that surgery was necessary, our goal for surgery was 5kg or 6 months old. Josie reached neither before surgery.
On April 11th, Dr K presented Josie’s case to Edmonton, and her surgery was scheduled for April 18th.  There was not much time to prepare, but we were simultaneously ecstatic and terrified that we got in so soon. We flew by air ambulance from Regina to Edmonton on April 17th, the flight was rough on Josie as she had such a sensitive tummy that she couldn’t feed on the trip.
Her surgery was bumped on the 18th due to no beds in the PCICU with no indication of when they could actually schedule her in. With the help of the paediatric cardiologist on-call, and I’m certain angels watching over us, Josie’s surgery was set for second case on Friday, April 21. Her surgery went well. Her ASD was completely closed and a small residual VSD was left unavoidably. Josie was out of the PCICU in about 24 hours and spent 2 nights in the ICE room after. We found out that she gets very irritable on morphine so we had to play with her pain meds a bit.
She started tolerating feeds and adjusting to the pain. Her chest tube stayed in a bit longer than expected because it was still draining. We were discharged April 26th and made our way home. We removed her ng tube on May 8th, 2017.
30443521_10160197173200641_7987987426452701184_o.jpgJosie is now 15 months old. She is in the 26th percentile (up from the 1st right after surgery). She loves running around with her brother and sister, loves all different kinds of animals and is queen of our castle. She talks up a storm, saying about 15 real words. She has no developmental delays despite the 3.5 months of laying in a hospital bed almost constantly on ng feeds. Her last echo showed that her residual VSD is most likely completely closed and that her bicuspid aortic valve is functioning perfectly for now. We see cardiology again in a years time. We feel so lucky that our little hero came out the other side of her journey as unbelievably strong as she did.

 

Ayana’s Story

We were expecting our first child and we were excited for our 20 week ultrasound where we would get to see our baby and hopefully find out the gender. We entered the ultrasound with expectation and excitement. The technician took all the pictures but informed us that she couldn’t see the heart very well. She didn’t seem concerned and so neither were we.

They made us another appointment to come back in a couple weeks to take another look. It was during this appointment that we found out that there was something wrong with our little baby’s heart. We didn’t have a name for it yet but we knew that there was something wrong when the radiologist came to talk to us and we were referred to fetal cardiology.

30443235_10156635496197079_4924867616243187712_o.jpgOur first appointment with the cardiologist was just a couple weeks later where we were given a name for our baby’s condition… Tetralogy of Fallot with a right sided aortic arch. It sounded so scary but Dr. Kakedakar did a good job of explaining it to us. One of the concerns was that this condition was often a result of a genetic syndrome. We chose not to do an amniocentesis but rather to wait until birth to test for the genetic condition. Those were the longest 4 months, excited to meet our new little baby but terrified as to what the future may have in store for our family.

I was induced at 38.5 weeks at the Regina General Hospital with the doctors and the respiratory support team standing by. Our sweet baby girl, Ayana Rose, arrived weighing a healthy 7 lbs 10 oz. She spent the first 24 hours in the NICU under close observation but did not need any intervention. Since the beginning our strong little girl has exceeded all our expectations! She tested negative for any genetic conditions, maintained oxygen sats at close to 100%, stayed at the 50th percentile for weight and above that for height. She was doing so well but her routine cardiology appointments showed that despite not having any blue spells, her pressures were increasing and that they were recommending Ayana for open heart surgery.

When Ayana was 3 months old we made our way to Edmonton for Ayana’s surgery at the Stollery Children’s Hospital. We met the cardiology team and left her in the capable hands of Dr. Freed, her surgeon. Ayana has never ceased to amaze us. She spent 2 nights in the Pediatric Cardiology ICU, one night in the Intermediate Care Room and 2 nights on the ward.

Five nights in the hospital and we got to take our strong little warrior home with a fixed heart!

In the past year since her surgery, Ayana has climbed off the chart for weight and is sitting above 95th percentile for height. She is exceeding all her developmental milestones and brings so much joy to our family and everyone who meets her! God gave our little girl a special story and we hope she can continue to give hope to other families faced with Congenital Heart Disease.