From the start Kyleigh has never made things easy…
We found out we were pregnant Thanksgiving weekend October 2015. We went to our first few ultra sounds and everything was great, but by the third ultra sound we found out something was wrong. That’s when we were told that our baby had a congenital heart defect and would need open heart surgery within the first few years of life.
Kyleigh was born in May 2016, a month early. Doctors’ visits and checkups happened, often along with seeing Kyleigh’s cardiologist once a month in London – a 2.5 hour drive from our home in Port Elgin. She had been prescribed different medications to help with things relating to her heart, while doctors waited in hopes she would gain more weight in preparation for her surgery. Kyleigh had other ideas.
Kyleigh as a baby lying on a bed with her SickKids bravery beads Fast forward to October, just after Thanksgiving. Kyleigh wasn’t eating as she should have been at this point, and what she did eat wasn’t staying down. We went up to our local E.R. in Southampton, where they then rushed us by ambulance down to London. Kyleigh had become dangerously dehydrated.
When we arrived in London we went straight to the E.R. at Children’s Hospital. Sitting there waiting you end up thinking a lot. We then realized that we had nothing with us, except for a diaper bag, and nowhere to stay. We were just going minute by minute.
That’s when we were connected with Ronald McDonald House (RMH) London, and from that moment RMH was nothing but amazing to us. We were booked into one of the 34 bedrooms, and after being up for 30 plus hours and Kyleigh slowly on the mend, we were able to walk over to our new “home-away-from-home”.
They welcomed us with open arms knowing we were not only tired but emotionally exhausted as well. The Family Services Coordinator lead us straight to our room so we could get some much needed sleep. Once refreshed we got up and had a tour – the staff and number of volunteers it takes to make the house run is absolutely incredible. Those people truly make it a "home-away-from-home".
Unfortunately things didn’t go as planned, the next morning after getting a bit more sleep the phone in our room rang. Kyleigh had taken a turn for the worse and was having trouble breathing and was then rushed to the PCCU. From the time I hung up the phone I was dressed and out the door and in the hospital in 2 minutes. The fact that the House is practically in the parking lot is fantastic.
The next two days were a blur, we almost lost Kyleigh. Thank goodness she is a fighter and didn’t give up.
We stayed for 6 days at Ronald McDonald House London. In those 6 days we got to know the staff, other families and volunteers. We were able to see what it takes to run the House, how the staff become involved and the amount of love that is truly put into Ronald McDonald House. Brent and I were able to witness this first hand, not only by staying at the House but by seeing a family who was able to go home. The child was discharged from the hospital and in parade fashion RMH volunteers and staff brought the child back to the house cheering and celebrating the entire way. It brought me to tears. They literally think of everything, from birthdays to Christmas, no one is missed or forgotten.
On day 6 of our stay Kyleigh was transferred to Toronto SickKids Hospital to await her surgery. Every day we were there she became stronger and on the fourth day at SickKids we were able to hold her. 11 days, 240 hours, 14,400 minutes, 864,000 seconds of sitting bedside with her, stroking her head, talking, reading, and singing we were able to have her in our arms. It was one of the best days of my life. Not being able to comfort, hold or cuddle your child when they are ill is probably one of the hardest things we experienced. It wasn’t long after that we got our first smile since she had been sick. We were finally starting to see our girl return to her spunky little self.
Shortly after that she went in for her surgery. The surgeon told us the day before that she was a difficult case and to expect the surgery to take 6+ hours.
Tuesday October 25, 2016 was the longest most terrifying day of our lives. Walking away from her while she went into the operating room was very scary. That’s when the waiting began….we waited for what seemed like forever. 3.5 hours later that’s when my husband saw the surgeon come into the waiting room. Alarm bells, dread and fear were at the pit of our stomachs as we went to talk to him. Brent and I thought the same thing as he sat us down. He hasn’t been gone long enough what went wrong? Our surgeon then proceeded to tell us that
When they went in, it wasn’t as bad as they had feared. Kyleigh’s surgery went better than expected and she was on her way out and into recovery.
It was like every Birthday, Christmas, and every other celebration rolled into one. This was the BEST DAY EVER!!!! Kyleigh rocked her recovery and we were discharged and sent back home on October 30, 2016. Today, Kyleigh is a very happy 18 month old who is full of energy and lots of sass. We couldn’t be happier with her progress.
We were very fortunate to be able to stay at Ronald McDonald House Toronto while Kyleigh was at Sickids.
Although each Ronald McDonald House is different the concept stays the same.
It’s a shoulder of a friend to lean on.
It’s the warm big hug when you need one.
It’s the love and support of a large family you didn’t know you had.
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