Olivia's Story.. {honoring CHD week}


Meet Olivia, the toughest 5 year old I know. I remember the first time I met her. The tiniest baby I've ever seen. She was under 5lbs at the time. Since then I have watched her grow as she endured 5 minor surgeries as well as 1 open heart surgery {you can read her whole story below}. This girl has spunk, and I don't think she stopped moving once throughout our entire shoot!

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Seeing as February 7-14 is CHD(congenital heart defect) week I felt led to share her story. This is her heart story as told by her mother..

I went in for my routine 36 week check up and the doctor couldn’t find her heart beat, so they sent me for a stress test at the Royal Alex Hospital. There they also couldn’t find her heart beat, so I went in for an emergency c-section. When Olivia was born she had a slow heart beat but a heart beat none the less. Her oxygen saturations were very low so Olivia was sent to the Stollery where she spent the first 2 weeks of life. There they diagnosed Olivia withEbstein’s Anomaly with talk of Long Q-T (which later was diagnosed as medicinal Long Q-T). When her oxygen saturations and heart rate improved they transferred her to the Grey Nuns ICU and she spent another week and then she got to go home. After 2 weeks at home our entire family got a cold but Olivia got RSV which landed her in the hospital again. After 3 days in the hospital Olivia’s monitors and alarms went crazy saying her heart beat was over 250 beats per minute, sometimes reaching 300 beats per minute which they referred to as Supra Ventricular Tachycardia (SVT). After all we were there for RSV, nothing to do with her heart. So this went on for about a week and a half until we found a medicine that slowed it down. At this point she was released and we got to be a family again. We listened to Olivia multiple times each day for her heart rate but after a while the medicine stopped working and again we were forced to take her to the hospital. We knew that something bad was happening and that we were in for quite a journey. Our family spent 18 hours in the emergency room until the doctors finally got a bed in PICU. At this time they told my husband and I to go home while they got her settled and they would call when things were done. That night we got a call saying that they had to stabilize her by putting her in a medicinal coma and that she had a machine breathing for her. They sounded optimistic, however things didn’t sound that great to us. So the next day we took Liam up to see his sister, we realized we had to get strength to fight for Olivia when she was too weak to fight herself. The doctors ended up doing 2 oblations to burn away the extra electrical spot in her heart that was making it race like this. Time seemed to stand still and yet life went on around us. This was the longest 30 days of our lives. Finally Olivia gained momentum and got stronger everyday and was finally released to come home. We had a few check-ups after coming home but things looked good, so check-ups became farther apart. Olivia still seemed to turn purple regularly, needed to nap a lot (in retrospect was probably fainting), and was very cold all the time.
Olivia was 4 when she saw Dr. Kantoc again. After her ECG’s and EKG’s the doctor concluded that she would need open heart surgery. They found that she had ASD, she needed to have a Glenn Shunt and they were going to repair her tricuspid valve. This was all to improve circulation and oxygen saturations. So in July of 2011 Olivia entered the Stollery once more. The surgery that was supposed to take 6 hours only took 4. Dr. Ross chose not to repair her tricuspid valve as he felt that after the ASD closure and the Glenn Shunt it took pressure off the valve, it wasn't leaking that badly and that putting a replacement valve in would likely make her sicker. Dr. Ross also found while in surgery that she was having SVT episodes again, so he did another oblation. Our little fighter was home 3 days after open heart surgery and playing with her friends like nothing had happened. She learned how to ride a 2 wheel bike and ran after her brother. She was our little miracle, except about 2 weeks after coming home Olivia appeared grey, complained of being tired and dropped to the floor for an instant "nap". So once again off to the Stollery we went. Olivia had fluid build up in 3/4 of her chest cavity and that’s why she turned grey. The fluid was called Kilethorax and she went in for surgery to get a draining tube put in. Olivia spent the next 3 weeks in the hospital. She took it all like a champ. She would be found regularly running with her draining box and IV pole running down the halls to "the beach". During these 3 weeks she had another SVT episode so they did yet another oblation. And because the Kile wouldn’t go away, they closed the fluid duct that it was coming from. The whole time Olivia never ever seemed sick. She insisted on doing everything herself and acting like a normal child. After 3 long weeks she came home again and things returned to “normal”. We listened to her heart every day and she seemed to turn purple less often. She even started to gain some weight.
Around Christmas time we were listening to her heart and again things sounded different. It was like her heart skipped a beat when she slept or paused momentarily. So we contacted Dr.Kantoc and headed back up for a check up where he found that she was having SVT episodes again. So Feb. 7 she was brought in for day surgery for yet another oblation. The doctor suggested that he’s rarely had to do this procedure more than twice on one patient before, so he became a little more aggressive in repairing it. During the procedure there was a little too much bleeding and the AV node was damaged. So this day surgery landed her back in ICU with an external pace maker because she now was going into Brady episodes which is too slow of a heart rate. After a couple of days they took the external pace out and sent Olivia upstairs to regular ward. They gave her 10 days and found she was still Brady at night so they put her under again and put in a pace maker.
Now Olivia lives with a pace maker. She has more energy than she has ever had in her entire life, is gaining weight and getting on the growth charts, keeping up and surpassing some 5 year olds. She starts kindergarten in the fall and is excited about life. She has a fighter's spirit about her. We have been told not to expect any more surgeries as the pace will keep her from going Brady while she sleeps and prevents SVT. It also helps her medicinal Long Q-T. The Glenn keeps her oxygen levels at 98% and although her tricuspid valve is deformed, not located where it should be and leaks, it seems to be stable.

When I heard it was CHD week, I knew I watned to do something. Anything. Even just to bring awareness. Chances are you know someone affected by CHD. It is considered to be the most common birth defect. Watching people walk through something like this as I have with Olivia, can often leave you feeling helpless. My part may be small, but I have chosen to do what I can. 

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  1. Amazing story about an amazing little girl. She is TRULY an inspiration! My best to your entire family.



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