meet kellen

30 January 2014

On March 8th, we are hosting our second annual 'Hayden's Heart 5K run/walk' and 2nd birthday party for Hayden. This was our biggest event last year and we anticipate it being even more successful this year! When choosing a family to honor for this event, it is important to me that we choose a family who has personally impacted our lives and our journey. This year we have chosen the Jackley family and their son, Kellen.
Hayden and I met mom Stacie at CHOP during one of our trips inpatient. We were introduced by a mutual heart mommy friend and our boys, although not the same age, had a lot in common. Both HLHS, both major feeding and reflux issues. We connected immediately and I leaned on Stacie a lot during Hayden's life even up until a couple days before he died. She was a huge support to our family and we will always be grateful.
Fast forward to now- when we get to pay it forward. We are so happy to honor Kellen, Stacie, dad Tommy and big sister Kaylin at our 5K this year! Stacie has given us a short version of Kellen's journey so you all can fall in love with him just like we did- although I'm sure the picture above alone is enough to reel you in!

"32 weeks into our second pregnancy, we were told there was a very serious problem with our baby boy’s heart. He would be born with a rare, congenital heart defect, Hypoplastic Left Heart Syndrome (HLHS), in which the left ventricle is severely underdeveloped and unable to function outside of the womb.  Essentially, this meant he would be born with half a heart.

He would require a series of three open-heart surgeries in order to survive, the first of which would be performed immediately after birth. It was a major shock to us because up until that point, we were told he was developing perfectly, including his tiny little heart. We were absolutely devastated and terrified of what was to come. From that moment, our lives changed and we knew we could never go back to what things were before that day. We could only move forward and hope for the best for our son.

Kellen Mason Jackley was born on December 21, 2010 at The Children’s Hospital of Philadelphia. Two days later, he underwent the Stage 1 surgery, the Norwood, in order to save his life. Overall, it went very well and he recovered with only a few complications. The most critical being a blood clot in his right atrium and a paralyzed vocal cord. Due to the paralysis, he was no longer able to eat by mouth and a gastronomy feeding tube (g-tube) had to be surgically implanted.  After spending 6 weeks in the Cardiac Unit at CHOP, he was discharged to come home on January 31, 2011. 

Facing the interstage in the winter months was very challenging.  We desperately tried to keep the germs away from him but he ended up being admitted 5 times for various illnesses. Two days before his scheduled Glenn surgery, the second stage, he woke up very sick and he quickly deteriorated over the hours following. That afternoon he was admitted and preliminary tests showed positive results for RSV…life threatening to a cardiac infant, especially during the critical interstage period. I was terrified we were going to lose him because it’s the worst thing he could have at such a fragile state. Miraculously, he fought through the RSV and was able to have his Glenn surgery 5 weeks later, on June 9, 2011.

The Glenn surgery could not have gone any better and he was discharged just 4 days post-op! A few weeks later, he was cleared to resume feeding by mouth.  It was an extremely slow process getting him to adapt but within a year, he was eating like a champ and we were able to have the g-tube removed on May 25, 2012, which was a huge milestone! Fortunately, he’s only been hospitalized a few times since then, for a minor illnesses, otherwise he’s remained fairly healthy.

Kellen just turned 3 in December and to look at him and watch him play, you would never know this sweet, silly, very active boy is living with only half a functioning heart.  We are currently awaiting the Fontan, the third and hopefully final surgery, which will be in April of this year. Until then, we are just trying to keep him healthy and enjoy “normal” family life.  Though his heart can never be “fixed” we aren’t going to let that stop us from letting him live like a “normal” kid and give him the life he deserves…and then some :)"

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