Hope for Oliver

Oliver Anthony Hilder-Titarniuk was born May 18 2014 after a fast labour at a whopping 5 lb 3 oz. His arrival was met with so much joy; he is the first child, first grandchild and first great grandchild, and some surprise and confusion; why is he so small? Why can't he maintain his oxygen in his own?

His first week of life was a week of scary firsts: first blood test, first IV, first time on oxygen, and first meeting with cardiology. He was sent home after 5 days with brand new diagnoses of Aortic Valve Stenosis, Atrial Septal Defect and Ventricular Septal Defect (for those of you at home that's two holes and one valve that doesn't open properly) and two very hopeful parents.

Over his first few months Oliver grew slowly. He had a hard time gaining weight  and was diagnosed with "failure to thrive". He was put on a special concentration of formula and several costly medications. Shortly thereafter we learned Oliver was in heart failure. The news rocked our family. We were at the cardiologist twice a week and every Thursday the doctors would say "if he doesn't gain weight by Tuesday we'll have to admit him." And every Tuesday by some miracle that skinny little baby got fatter and fatter. And every week he charmed those nurses with his winning toothless smile. He got used to the poking and prodding and squeezing and barely batted an eyelash.

Oliver had been stabilized on his medication, he had started catching up with his developmental milestones and continued to charm everyone who knew him and things were beginning to look up.

Christmas Day 2014 Oliver was admitted to the hospital with bronchitis. His oxygen had dropped to a dangerously low level and he was lethargic and grey. He spent 5 days in the hospital. His body hasn't yet fully recovered but some how Oliver continues to amaze everyone every day with his winning smile and the belly laugh that can brighten even the bluest days (and of course we can't forget the raspberries he loves to spit in everyone's faces).

After Christmas Oliver was found to have extremely high pressure in the vessels surrounding his lungs, initially this was attributed to his recent illness but it soon became apparent that there was something else afoot. Several tests were done but nothing could conclusively prove, was his heart causing this? Or was it something else?

An angiogram was scheduled for Monday, March 2nd. Post op check was done the week before and Oliver was fit as he ever was. During the Monday morning check prior to the procedure despite seeing a giggly pink chunk in front of them Oliver's oxygen had dropped to 59% which necessitated oxygen, an admission to the hospital and a delay in the procedure. The pressure in his lungs was pushing deoxygenated blood through the hole in his heart.

Wednesday morning Oliver was sedated and brought for his angiogram and a CT scan. He was intubated and hooked up to a bunch of machines. The angiogram confirmed some of our worst fears, his lung pressure is higher than many of the cardiologists in the PICU had ever seen but there was also hope, he responded to the medication they gave him while he was under to help decrease his lung pressure.

Over the next 24 hours the staff tried twice to remove intubation and both times Oliver has tried but struggled greatly to maintain oxygen on his own. He was intubated again and remains such. We don't know the prognosis because the doctors don't know what's wrong, but what we and Oliver's medical team do know is that his best chance for health lies in Edmonton with a world renowned cardiologist/pulmonologist and the most advanced technology available to us. Oliver has been sent to Edmonton via air ambulance and scheduled for an extremely high risk procedure. Mom and dad will be joining him today.

How can you tell this little boy is sick when he is so full of life and full of love? How can you tell his heart and lungs are failing him? You can see it in his parents eyes. The heartbreak and heart-mending and heartbreak again they have endured since Oliver was born has been a herculean feat.

The beautiful part about this is that the costs for travel and accommodation in Edmonton are mercifully covered. Unfortunately, dad will have no income while he is away from work at the hospital with mom and Oliver and bills still need to be paid. The doctors expect Samantha and Steven to be in Edmonton for at minimum one month.

That is where you come in. We are coming to you, our beautiful and supportive friends and family. With your help we are hoping to raise 10000 to cover expenses at home while Steven and Samantha are away and for extra costs when they return including Oliver's medications. I know this is asking a lot but I also know that you will stand behind us and help facilitate us being there for Oliver.

Any and all donations are welcome and so appreciated. Please send out positive thoughts to whatever you believe to restore our Oliver's health and bring us all home again safely.

Music in the Video is from Disney's Hercules.


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Cassandra Leigh 
Winnipeg, MB
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