LOMBARD – Sitting comfortably on a rug in the living room of his family's home along Grace Street on Wednesday morning, 16-month-old Jace Szklanecki stares intently as his brother, Marek, 5, and sister, Mirelle, 3, pal around beside him.
A handmade sign on a nearby wall carries a message that encapsulates the sense of relief the Szklanecki family has experienced in the past week:
"Welcome Home (For Good) Jace – We Luv You!"
Jace, who underwent a successful heart transplant on Feb. 13, was discharged from the Rehabilitation Institute of Chicago on June 6. After 134 days of stress, fear and uncertainty surrounding the health of their youngest child, Robert and Nicole Szklanecki are happy to have their family together under one roof.
"It's great to have all of us together and it's comforting to be home and to see Jace smiling with his brother and sister," Robert Szklanecki said. "From a heart standpoint, everything looks great."
Life in the balance
Jace was born in January 2013 with Hypoplastic Left Heart Syndrome, a rare congenital heart defect. In the first four months of his life, he underwent two open heart procedures in order to survive.
Jace endured and began to hit the monthly milestones of any healthy baby until, on Jan. 24, he was readmitted to Lurie Children's Hospital with low oxygen levels. Following days of testing, Jace was diagnosed with a rare blood clot that was blocking his left coronary artery.
The next day, Jace would go into cardiac arrest.
"We were switching off holding him and he started making the most horrible sounds a human could make," Robert said. "Luckily all the doctors were right there – they rushed in and were able to revive him.
Jace was stabilized on life support, but sometime in the next week, the clot caused him to have a stroke and a subsequent seizure that damaged 70 to 80 percent of the right side of his brain.
"In those days, there were times when he would spike a fever and his heart rate would go up," Robert said "There were times we didn't know how much more he could actually take.
"Even on good days, it was most people's worst nightmare."
On Feb. 13, the Szklanecki's received their first good news in more than two weeks – the doctors had found a heart donor for Jace. Following more than nine harrowing hours of waiting, the Szklanecki's were told Jace's surgery was a success.
"It was amazing just to see a difference in looking at him," Robert said. "Some family out there was willing to have the loss of a child bring new life. Finding that out, every emotion came through me."
Throughout his medical scare, Jace's parents wrote blog entries to document their son's struggles.
"Originally, it was to keep a medical log of how he was doing, so anytime we needed to go back, we had that there," he said. " But we also knew we had a lot of family and friends who wanted to know what was going on. It was a good way for us to communicate."
The blog will also benefit Jace as he grows, and help him to understand the experience he endured at such a young age, Robert said.
"Being 16 months old, he's not going to have any memory of this," he said. "He's the strongest person I know."
Rehab and relief
In about four months of recovery for the damage suffered to his brain, Jace and his family split time between Lurie and the nearby Ronald McDonald House, which allowed the Szklanecki's to remain close to their son and also meet families going through similar medical issues, Robert said.
"The people that work in that facility are amazing and accommodating in every single way," he said. "It brings different families together."
Two weeks ago, the Szklanecki's received the best news of the year – Jace would finally be coming home. He will attend physical, occupational and speech therapy three times a week to regain and grow his motor skills.
His doctors are confident that Jace will eventually learn to walk, but the extent of his recovery is still unknown, Robert said.
"I wish we knew that," he said. "He should be able to walk, but what level and how well is yet to be determined. There is not much research on strokes within children his age."
Moving forward, the Szklanecki's are optimistic in Jace's recovery, and thrilled to have him home.
"To have us all here together – to go to bed together and wake up in the morning and eat meals together – it's amazing," Nicole Szklanecki said.
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Learn more about Jace's journey in the family's blog at babyjaceupdates.blogspot.com.