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Foligno seeks purpose, not sympathy

COLUMBUS, Ohio -- Walking to the edge of tragedy creates a special appreciation for normal, so the best thing about this first birthday party was that it was perfectly normal.

It was a party held on a Sunday, an off day for the Columbus Blue Jackets. It was also the weekend of Canadian Thanksgiving, which allowed friends and family to join in from Ottawa. The celebration included the entire Blue Jackets team along with their wives and girlfriends in the Upper Arlington condo of Blue Jackets forward Nick Foligno. It was a day to celebrate the life of Nick and his wife Janelle's first child, their angel Milana.

The presents piled up near the front door, filling the entrance with toys. There was a new castle for her dolls and a ton of stuffed animals and books. Kids played on the carpet and colored pictures, while dads watched football on the flatscreen in the living room. One-year-old Milana mashed her way through a birthday cake, while the parents enjoyed takeout. Normal. Wonderful.

"The biggest thing, we just wanted to thank them for being there for us the entire year of her life," Janelle told ESPN.com, sitting in her dining room a few feet away from Nick, the captain of one of the All-Star teams this weekend in Columbus.

The wall behind Janelle was empty while she spoke, but during the birthday party it was filled with pictures, some of them Janelle initially didn't want taken. She was hesitant because they included oxygen tubes and a very sick Milana, moments of her daughter's life she wasn't sure she wanted documented or remembered.

One year later, she's glad those photos exist because they are part of Milana's story. Just like the scar that takes up Milana's torso from when the doctors opened up her chest is part of her story. The scar is healing beautifully, much in the same way the Foligno family has healed.

"We had a wall of pictures from birth until 1 year old," Janelle said. "It painted such a beautiful picture of what was her beginning and her reality, to how she developed as a toddler. We had all those photos. Everybody could look through those and see how far she'd come."

Nick and Janelle Foligno don't often tell the entire story of just how close they came to losing their first child. They're not looking for sympathy. They tell it only because they're so passionate about the innovative surgery performed by Dr. Ram Emani at Boston Children's Hospital. A man who is a saint in the Foligno home, the man they credit with saving the life of their daughter.

***

Milana Maria Foligno was born Oct. 14, 2013, and initially there were no signs for concern. The Blue Jackets had a game in Detroit, and the life of a professional athlete means paternity time during the season is limited to, oh, 24 hours or so. It's a reality of the profession.

So with Nick leaving on a plane to Detroit to play in a game against the Red Wings, Janelle was alone with her newborn. If you've ever experienced that first night in the hospital with a baby, you know it's a whirlwind of doctors and nurses coming in and out, conducting tests and doing routine checkups on mom and her baby.

It happens all night long. At 5 a.m., they came to conduct a test to check the oxygen level of the blood throughout Milana's body. Nothing to worry about, Janelle was told, get some needed rest while the test is conducted.

Milana failed the test.

Maybe it was because she was moving too much, one doctor suggested -- still nothing about which to be concerned.

At 9 a.m., they took her away to try again.

She failed again.

"This time we don't think it's because of error," a doctor told Janelle. "We're pretty concerned."

That phrase. Pretty concerned. Janelle heard it a lot that morning.

The test failed, and they also heard a loud heart murmur that was alarming. Nick, meanwhile, was on a flight to Detroit and unreachable.

"The doctor came in and kept telling me they were very concerned, they wanted to look into it further," Janelle said. "I was asking him, 'Should I tell my husband to come back? Is it that serious? What do I do?' "

Nick was in a taxicab to Joe Louis Arena when he first heard the news that something was wrong with his newborn daughter. The doctors wanted to do an echocardiogram and transfer Milana to Nationwide Children's Hospital.

Nick arrived at the visitor's dressing room in Detroit, and all his teammates knew at that point was that he's a new father. He was congratulated all around -- handshakes, pats on the shoulder -- but they saw immediately in his eyes something was wrong.

He's fighting back tears when he tells Blue Jackets coach Todd Richards about the tests.

"He's like, 'Just get out of here. Go back,' " Foligno told ESPN.com. "I went to the airport and hopped on the next commercial flight."

It's a one-hour, five-minute flight from Detroit to Columbus, but this one felt like an eternity. While waiting to board, Nick started making calls to prepare family for what was coming. He spoke with his father, former NHL winger Mike Foligno. He spoke with Janelle again.

"Milana had a really strong heart and she was going to pull through this."

Dr. Ram Emani gave the Folignos a gift with these words after their daughter's surgery

On the plane, he put on headphones to try and get his mind off of what was happening by listening to music. It was impossible.

So instead, he prayed. Why is this happening? Please make sure she's fine, he pleaded.

"I just wanted to get back to my family," Foligno said.

It took a few days of testing to find out what was wrong, the kind of waiting no newborn parents should have to suffer through. Finally, they were able to make a prognosis.

Milana had a rare congenital heart disease called mitral valve arcade.

"Which is a fancy way of saying severe mitral valve regurgitation," Nick said before pausing. "We feel like doctors."

Her mitral valve wasn't closing enough to prevent a flow of blood back into her tiny heart. Left untreated, the condition leads to heart failure.

Doctors drew a diagram of Milana's heart and showed exactly where the problem areas existed. They taped it to her bassinet, and it became the point of reference when doctors provided updates during their rounds.

This went on for 10 days, everyone knowing surgery was necessary, nobody wanting to do it while she was so small and sick.

The heart of a child is roughly the size of the child's fist, and Milana was seven pounds.

Her tiny valve needed repair, and the hope was to allow her body time to grow to a size that might increase the odds of success. So they sent her and the Folignos home to their condo to start their new life as a family.

It's not how a father imagines taking home his first child. Nick didn't picture an oxygen tank in one room with a long hose that reached wherever Milana was carried. But that was the reality.

Nick didn't picture a newborn who would struggle just to breath, even with attached oxygen tubes. But that was the reality.

"This is how she breathed," Foligno says, taking deep, labored breaths.

The oxygen was supposed to take pressure off her heart, but it wasn't working well enough. She wasn't keeping down food. She was irritable. She cried a lot.

She wasn't getting better.

Nick and Janelle relented and took her to the emergency room. When a group of doctors rushed to surround her and attend to her in a near panic, they knew it was bad.

"She was starting significant heart failure," Janelle said.

She was two weeks old.

***

According to Dr. Ram Emani of Boston Children's Hospital, about 150 to 200 children a year in the U.S. suffer from a congenital heart disease similar to the one Milana was born with.

The typical treatment right now for this illness is multiple open-heart surgeries to replace the faulty valve as a child's heart grows.

It was the solution facing the Folignos, with Nick fearing his daughter would have as many as five open-heart surgeries before her fifth birthday. If she made it.

Adapting a process that has been successful for adults, Emani instead developed a surgery for children that would require only one open-heart surgery and follow-up adjustments done with a catheter as the heart grows, rather than more open-heart surgeries.

It uses a valve from the neck vein of a cow, put inside an encasement to compress into the size of the child's valve that also allows it to expand as the child's heart grows.

It's not approved by the FDA and isn't being done in other hospitals.

The Folignos heard about the revolutionary surgery, studied the risks and made the call to Emani.

"Her valve was really not normal. It was the type of valve that typically, there's no way to replace it," Emani told ESPN.com. "Most people would say there's really not much we can do, enjoy the last few days of her life. It breaks your heart to tell a family that."

When Nick and Janelle brought Milana to Boston for the surgery, only 16 children in the world had Emani's surgery done on them and only one infant who was less than four weeks old.

The risks were explained to them, and they're as bad as you'd think.

The process required open-heart surgery for Milana. It required dropping her body temperature down to 28 degrees Celsius and bypassing the blood away from the heart and lungs and pumped through an oxygenator.

Milana's heart was to be stopped.

Weighing the risks, they agreed to make her the 17th child.

At 7 a.m., they took her in for the surgery. The first incision went into her chest at 9 a.m., while Nick and Janelle waited near a long hallway where doctors would emerge with news to waiting families.

They were told it could be done as quickly as four hours, six on the long end. It went well beyond that.

"Finally we saw the surgeon come out and your heart is pounding for the two and a half minutes while he walks," Foligno said.

"I had initially tried to repair the valve and wasn't happy with the results," Emani said. "We decided to go ahead and replace. Her heart just came right [back]. She was looking really good. I knew that the family had been really struggling all day. I can just imagine how tense those eight hours were. ... I knew I could put them at ease."

His message?

"Milana had a really strong heart and she was going to pull through this," he said.

***

In 2009, Foligno's mom died of breast cancer, and it was during those hardest times when his faith deepened. Foligno was raised Roman Catholic, and his mom, Janis, would tell him he was given his hockey ability for a reason and to never waste this gift. Going through this process with Milana reaffirmed that notion.

"If we can get the word out to save kids -- it saved our daughter," Foligno said. "I feel like our reason for going through this is for a purpose and we can help people."

There were coincidences he couldn't explain, from finding out about the surgery in the first place, to the Blue Jackets playing in Boston at the most convenient times when his daughter needed to be there.

"Not to sound too religious, but you have to put a lot of faith in things, too," Foligno said. "We had to."

There was one point in Boston when he was sitting in the hospital cafeteria eating a slice of pizza when he looked around. His eyes opened when he saw the families around him.

He saw one mom feeding her child because he couldn't feed himself. He saw another family that he imagined receiving horrible news. He saw children he suspected might never leave the hospital.

"My daughter is up there recovering, really well and I'm fortunate. I didn't have a feeling of 'Poor me.' I never want that," he said. "We're so fortunate in life to find Boston, find Nationwide [Hospital], to be in a spot to have this. We could have been anywhere in the world, and we're able to find those people. It put everything at peace."

On Saturday, Foligno was in Boston again.

This time it was simply to play hockey with his Blue Jackets teammates, continuing the best season of his career. His 18 goals already equal his career best in a season. He's a first-time All-Star who will be the center of attention as one of two captains when the NHL world descends on Columbus this weekend to celebrate the sport during the midseason break. He has a new contract, worth $33 million.

He credits his success this season in part to the maturity that comes with being a dad. Especially Milana's.

On Saturday, the Blue Jackets beat the Boston Bruins, and there was at least one fan at TD Garden thrilled to see it. Emani brought his 10-year-old son Vishnu, a basketball fan now developing a love for Blue Jackets hockey.

After the game when all the Bruins fans left the building, Emani, Vishnu and his best friend, Rajan, walked down the stands to near the visitors' bench. Showered and dressed after the win, Nick Foligno emerged with a smile to say hello. They took a picture together, and Foligno pulled out his phone to proudly show off Milana.

There she was on the small screen, looking beautiful and doing everything normal girls her age do. One picture, naturally, was Milana standing on ice. There was video of her dancing in the house.

And when Emani looked up, he saw a look of pure joy on Foligno's face.