Chloe’s Story

Chloe was born on December 17, 2008 at 7 lbs 1 oz.  She had a heart murmur but they said it is common in infants and often closes up overnight (which happened with our first child). The next day, the murmur was still there.  They got an echo done of her heart. The technician wanted a second opinion.  Luckily, the pediatric cardiologist, Dr. Tyrell, was in the hospital for a heart clinic that day (they are only in Regina a few times a month). 

Dr Tyrell had a look and told us that Chloe had Truncus Arteriosus, which is the same CHD that my husband’s older brother was born with. 

We were shocked – my brother in law has Truncus Arteriosus but he has 6 children, all with healthy hearts. 

And strangely enough, Dr Tyrell had been his doctor.  Basically Chloe’s pulmonary artery and aorta were connected where they met the heart in one big valve (like a tree trunk with branches coming off of it). She would need surgery fairly soon.

As we waited for surgery, we worried whenever she cried as her oxygen levels would dip. Finally, at 6 weeks old we took Chloe to Edmonton to the Stollery Children’s Hospital for her first open heart surgery.

Dr Rebecca performed the surgery and everything went well.  We stayed there for about 10 days and then were transferred to the hospital in Regina for a couple of days before going home with strict guidelines to wean her off of a couple of diuretics and morphine.  She would need to continue to take aspirin daily to prevent her body from clotting in her new conduit/valve.

When Chloe was about 2 years old, she had a cardiac catheterization to buy some more time until her next surgery.  They had said at her first surgery that the conduit they put in wouldn’t grow with her and that as she grew it would narrow, requiring another surgery.  They had estimated we would have 5-10 years.  However, Chloe was growing fast – in the 98th percentile and very active.  They did the cardiac cath to widen the conduit a little.

When she was almost 4 years old, she started to tire very easily and her lips would turn bluish if she was running around lots or working hard.  We were sent off to Edmonton again for her second open heart surgery. This time we were able to stay in the Ronald McDonald House and what a blessing that was.  We went up a few days before surgery for an MRI and pre-op tests.  And we spent the days before surgery visiting every park close by that we could because Chloe knew she would not be able to do the monkey bars for 6 weeks after her surgery.

She recovered very quickly from the surgery and very shortly after surgery she was wanting “real food” -not just sips of water and an occasional popsicle.  We were able to go home after just 7 days! She is one determined and tough young lady.

Since her last surgery, Chloe has been doing exceptionally well.  If you didn’t know, most of the time you wouldn’t be able to tell she has a heart defect.IMG_7313.JPGShe is now 9 years old and very active.  She loves the monkey bars, trampoline, bike rides, gymnastics and art.

In the fall of 2017, she started to get recurring fevers for no apparent reason.  She didn’t feel sick and would be fine all day and then get a fever for a few hours in the evening.  This happened for awhile and couldn’t see anything wrong.  One night we took her to the ER and they ran tests but didn’t see anything concerning and told us it was probably a virus.  But it wasn’t going away.  I took her to the pediatrician, who examined her and talked to the cardiologist in Saskatoon.  They suspected she had endocarditis (an infection in her heart), but the blood cultures had not shown anything.  We immediately drove up to Saskatoon.

In Saskatoon, they did another echo, a transesophogial echo, and blood cultures every 8 hours for 24 hours.  Finally, one of the blood cultures came back positive and they knew exactly what bacteria they were dealing with.  There was a higher gradient (higher pressure) in her conduit, so they were guessing that was where the infection had “set up camp”.  

They put a PICC line in Chloe’s arm and we started IV antibiotics.  We stayed in Saskatoon for about a week, and then went home on IV antibiotics for 5 more weeks.  I had to learn how to use the IV pump and give her her medications.  She had two different antibiotics and we had to give her an IV 7 times a day.  The hardest part for Chloe seemed to be missing gymnastics.

Now the infection seems to have cleared and she is back to doing gymnastics. She is one of the strongest people I know.

While our journey has not been easy, it has taught us greater patience, strength and faith.  It has made Chloe the kind, strong and compassionate girl she is.  It has taught us to cherish the little things and celebrate our family.

Hailey’s Story

Hailey has an older brother and sister.  Her older sister has a CHD called Truncus Arteriosus.  Because her sister has a heart defect, they did a thorough fetal echo when I was pregnant with Hailey and she was diagnosed before she was born with a CHD called Tetralogy of Fallot. 

At about 10 weeks old, we took Hailey to Edmonton for heart surgery.  They had waited until she was a bit bigger to do surgery, but couldn’t wait too long as her blood oxygen saturation would keep getting worse. We went to Edmonton thinking that she would get a full repair and probably wouldn’t need another surgery for quite a few years.  

The day before surgery as they were doing the echo and other pre-op tests, they discovered that Hailey had a tumor on her adrenal gland.  They decided to go ahead with surgery the next day, but to do what is called a BT shunt instead of the full repair.  This would help her body cope better and get more oxygen, but was only a temporary fix until they could figure out what was going on with the tumor.

We waited in Edmonton for a week or two after surgery.  Then Hailey had an abdominal surgery to remove the tumor.  They said it was about 5.5 inches across! I don’t know how that big thing fit in her little tummy, but we were so glad they got it all out.  They discovered that

the tumor was cancerous and was called a Neuroblastoma. 

Her liver was affected a little, but they were hopeful and said that if the patient is diagnosed so early and they get the main tumor out, 95% of the time everything else fades away on its own with time.  

We went back to Regina and saw the oncologist there.  We would go in for frequent blood and urine tests, and ultrasounds.  Her liver got larger and the cancer was not going away on its own.  We had to go up to Saskatoon and Hailey got a port put in so it would be easier to receive chemotherapy.  

In March of 2011, when Hailey was 6 months old, she received one round of chemo.  Then again in April she received a round of chemo (each three days).  We continued to monitor her and in May they saw no more signs of the cancer! We were so happy.  Now we just had to wait for her next heart surgery.

Before we had a surgery date, Hailey started to throw up green bile.  She couldn’t keep anything down and could not have a bowel movement.  We were admitted to the hospital in Regina.  They did an ultrasound and found that she had a bowel obstruction most likely caused by scar tissue from her previous abdominal surgery catching on the bowel and twisting it (this is called “adhesions’). 

Hailey was taken by air ambulance to Edmonton where they did an emergency surgery to correct the bowel obstruction.  She recovered quite quickly and was happy again in no time.  However, her oxygen saturations were still low (in the 60’s – most people are high 90’s to 100).  We stayed in the Ronald McDonald House in Edmonton for a few weeks and then they got Hailey in for her second open heart surgery.

After surgery, she got something called Chylothorax and had to be put onto a low fat diet for 6 weeks for it to heal properly.  At the time, she was solely breastfed and did not like bottles at all, so she refused to take the low fat formula called monogen.  I don’t blame her, it smelled awful.  They put in an NG tube to feed her.  After the first few weeks of doing tube feeds, she got desperate enough that she started to take it by bottle. That problem was resolved and we went back to life as normal – or as normal as we had had in a long while.  

Eventually her hair IMG_7315started to grow back in and she remains cancer free to this day.  Hailey is now almost 8 and we go in for a yearly cancer check up but things are looking good.  She will eventually need a valve replacement and possibly another surgery, but she is able to do so many things other kids her age can do.  She loves to swim, play outside, play at the park, do gymnastics and soccer.  She is a little comedian and loves music and crafts.  

Our two heart warriors have pushed us to be strong and patient and have more faith.  Our journey has not been easy, but it has been worth it to see them grow so much and overcome all of their obstacles.  They are two of the strongest people I know.  They are my heroes.  

Lily’s Story of Hope

Lily was diagnosed in utero with Hypoplastic Left Heart Syndrome.  She was born in Saskatoon and air lifted to Edmonton at 4 days old where she would await her first open heart surgery. 

She had the Norwood procedure done at 9 days old.  The procedure went well, but shortly after when she was in the PCICU things changed rapidly.  She was putting out a lot of blood from her drainage tubes and her blood pressure was dropping. 

She went into cardiac arrest and had to have CPR performed. 

They re-opened her chest (just the skin as her breast bone had been left open) and found that her LA line had poked a small hole in her heart which was causing the bleeding.  They were able to fix it quickly and stop the excess bleeding.  A few hours later they needed to re-open her chest again as she now had massive clots that needed to be cleaned out.  After the second re-opening she was doing better but her lactate was still dangerously high and they were keeping a very close eye on her.  She slowly began to improve and they were able to close her chest 5 days after surgery and transfer her back to the NICU. 

After a few more days she was flown back to Saskatoon where we stayed until she was 5 weeks old, and then discharged home.  She left the hospital completely bottle feeding but once at home she had an infection on her incision, reflux which had gotten worse causing her to not want to feed orally, and was not gaining weight.  We re-inserted her NG tube and eventually went to continuous feeds as she was throwing up 5+ times a day. 

She managed to gain the necessary weight and at 5 months old we headed back to Edmonton for her second surgery- the GLENN, and a patch on her left pulmonary artery.  This surgery went much better and she was discharged home after 5 days.  She continued to struggle with eating, reflux, and throwing up multiple times a day but began to hit many other milestones- rolling over, sitting up, crawling, talking, walking, etc.  Just after she was a year old she had a G-tube inserted and this greatly helped with her eating as it cut down on her gagging and reflux.  3 months after she got her g-tube, at 16 months old, she was finally able to eat and drink enough on her own that we didn’t need to use her feeding tube for feeds! 

Today Lily is an energetic, happy, inquisitive little 2 year old.  She loves playing outside, going to the park, singing, pretending with her stuffies, and tractor rides.  She has an incredible vocabulary, and has been talking in sentences since she was about 20 months old.  She loves to read books- especially Robert Munsch and Pinkalicious and has about 20 books memorized that she can read almost word for word.  She continues to amaze us everyday with how far she has come and all that she has accomplished.

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.