The Sullivan Playground And The New Normal

Occasionally, I get questions about why I've been so absent from the Daily Norseman for the last eight months. When the chance to write about the opening of the Sullivan Playground presented itself, it seemed like a good way to explain why I haven't been around. Fair warning, this piece is lengthy (almost as long as something written by Arif) and if you're looking for stats or a contest you won't find either of them here. But, I promise, it does tie in to the Minnesota Vikings, well, a little, it just takes awhile to get there.

Dedicated and open

About seven months from when I stood, chilly in the Minnesota fall, just outside of the University of Minnesota Amplatz Children's Hospital for the dedication of the Sullivan Playground, I was standing, chilly in the Minnesota summer, at the same place for the playground's ribbon-cutting ceremony. The playground, built with a $150,000 donation from Minnesota Vikings center John Sullivan and $25,000 donations each from Chad Greenway's Lead the Way Foundation and the Vikings Children's Fund, will give Amplatz patients and their families some much-needed opportunity for play while they stay at the hospital.

Sullivan toured the finished playground, examining the colorful and artistic array of activities designed specifically for children of all abilities and ages. A cushioned surface ties together safari, prairie, and aquatic sections that feature equipment for spinning, climbing, and sliding--there are even tiki towers where kids can survey the entire playground and feel like pirate castaways.

Unlike a lot of playgrounds that are efficient metal exercise structures, Flagship Recreation, a Minnesota company, consciously designed a playground meant to capture children's imaginations and give them things to discover no matter what their physical abilities are. Unique to this playground is a roller slide that can accommodate kids who have IVs. According to Chris DesRoches of Flagship Recreation, as far as the company is aware, this is the only slide in existence configured specifically for IV accommodation. Another special feature is the large shaded area that allows kids with sun sensitivities to enjoy the playground too.

When I talked with John Sullivan back in October about this project he said part of the reason it appealed to him was the idea of bringing "a little normalcy" to kids and their families while they are in treatment at the hospital. Looking around the crowd at the dedication that fall afternoon, I naively thought, "Gee, what a nice idea." Now I know that normalcy, to a patient and family at Amplatz, isn't just nice, it is more rare, precious, and fragile than a Stradivarius violin.

I know because my 8-month-old niece Ellie is an Amplatz kid.

It begins with a baby

Back in October when I talked to Sullivan about the playground project, my family was only 30 days into the strange, changeable, and heartrending adventure of life with a critically ill child.

On October 1, 2012, my sister gave birth to her second child, a beautiful, full-term, baby girl she named Ellen Joy. Until that day, we had no idea that anything was wrong with Baby Ellie.

What had started as a routine prenatal visit for my sister led to a series of worsening discoveries about her baby's health. An ultrasound detected something wrong with Ellie's kidneys and my sister was rushed to the University of Minnesota to deliver Ellie via an emergency c-section.

Ellie's situation was dire, her kidneys had stopped functioning at some point in her development and that prevented her lungs from fully developing. When the medical team tried to put Ellie on a ventilator it collapsed both her lungs. There she was, no kidney function and collapsed lungs, her skin a dusky hue, and her future being measured in minutes and seconds.

An Amplatz NICU doctor, whom I have only ever heard referred to as "Dr. X" (always makes me think of X-Men), said they could try to hook Ellie up to an ECMO machine to try to save her. ECMO (extracorporeal membrane oxygenation) is basically a heart-lung machine, like the ones used for open-heart surgery. It oxygenates blood outside of the body, bypassing the heart and, in Ellie's case, lungs that may be damaged. ECMO use is somewhat uncommon, it's risky, requires highly specialized training for the medical team using it, and it must be monitored constantly. Fortunately for Ellie, the University of Minnesota Amplatz Children's Hospital was well-equipped to use ECMO. It was her only hope.

Dr. X prepared my sister and her husband for the worst--the team might not be able to hook Ellie up to ECMO, she might not react well to it, and, even if she did, it might not have be enough to save her--then he and his team did everything they could to keep the worst from happening.

They saved her. If she had been born anywhere else in the Twin Cities or Upper Midwest, Ellie wouldn't have lived through the day.

Dealing

Using ECMO saved Ellie's life and bought time while the NICU team tried to figure out how best to treat this infant with end-stage kidney failure and underdeveloped lungs. It also gave us time as a family to begin to absorb the magnitude of what had happened.

I don't know how other families deal with something like this, I know only how it hit us. And it hit us in tears. We cried like our hearts were breaking, because they were. We cried until there were no more tears, we cried until we couldn't breathe, and then we cried some more. There just aren't enough tears for the gut-wrenching grief of seeing your baby barely clinging to life. There just aren't.

Ellie, however, had a great and visceral aversion to going "gentle that good night" and she surprised us all, gripping life with a stubborn and...well...what can only be described as badass tenacity. One small gain followed another and our baby started to gain strength and to heal. The medical team said she could stay on ECMO for three weeks, Ellie was on it for a mere week-and-a-half. Gradually, her little, underdeveloped lungs recovered, she was moved to a ventilator and, finally, she was able to be extubated. The procedure to put in a peritoneal dialysis port was successful and her kidney doctor came up with a plan for her dialysis. Finally, in mid-December, Ellie came home from the hospital, an early Christmas present.

What is this normal you speak of?

When a child is critically ill it affects the entire family. To say that our lives have changed is an understatement on par with saying New Orleans got a little wet when Hurricane Katrina hit.

In the months since Ellie has come home, life has been a blur of doctors appointments, clogged feeding tubes, being readmitted to the hospital, hassling with the insurance company, tweaking the dialysis, going to therapy appointments, going to more therapy appointments, and lab draws for my sister and her husband to deal with. Because Ellie travels with a food pump and oxygen, getting her to all those appointments requires help from an extra person--either my mother or a private duty nurse. My brother-in-law treks off to work to keep the cash coming in so it can keep going out to all the myriad medical expenses.

And someone needs to watch Ellie's older sister while her dad is at work and her mom is taking the baby to those endless appointments. That would be me. I've become a kind of a cross between second mother and live-in nanny to my three-year-old niece, frequently spending more of her waking hours with her than her parents are able to spend with her. Gone are my days of reading the sports section over breakfast (or any other time) and writing articles. Instead, I have seen times of morning that I only ever saw before after working on term papers all night, I can name all the main characters in My Little Ponies, I can sing the songs from The Cat In the Hat Knows a Lot About That, and I am now a skilled bedtime story negotiator.

I've also had to learn how to help out with Ellie and that has been an education. I can change diapers on an infant with bones so fragile they barely show up on x-rays, re-tape an oxygen nasal cannula (not well, but I can do it), give medications via an n-j tube, assist in hooking Ellie up to her dialysis, and play a good game of peek-a-boo.

My days of writing about football for the Daily Norseman seem like a distant dream snatched from someone else's life. You have no idea how much I miss it. I even miss interacting with people who are annoyed that their song wasn't chosen as the winner for a song contest (yes, I'm bagging on the metal fiends, but I'm doing it in affection) because, when that is the worst thing that happens in the course of my day, my day is going pretty darn well.

And this has what to do with football?

Oddly enough, despite not being able to participate here on DN the way I would like to, through all the things that have gone on with Ellie, the Minnesota Vikings have been steadily present in the background.

I still have the sports section from the St. Paul Pioneer Press on the day Ellie was born--I brought it with me to read while my sister was at that prenatal appointment that started everything in motion. I never did get to read that paper, but the headline is that Vikings had just beaten the Detroit Lions 20-13 at Mall of America Field the day before. Three weeks later, after the Vikings beat the Arizona Cardinals, my sister got to hold Ellie for the very first time. In pictures from that day, Ellie's older sister is still wearing her Adrian Peterson jersey. The Vikings' surprisingly good 2012 season provided three hours of welcome distraction each week throughout the fall and I'm grateful for the respite that cheering for the Vikings gave me and my family through a rough time.

But more than the simple distraction of the games, the Vikings have my gratitude and affection for their interactions with the University of Minnesota Amplatz Children's Hospital.

John Sullivan's playground at Amplatz opened the first week in June, but Sullivan's relationship with the hospital goes back to when he was first drafted by the Vikings in 2008. He started attending events at the hospital hosted by former Viking Steve Hutchinson and Sullivan continued the tradition of hosting those events after Hutchinson left the Vikings. I'll probably always have a benign crush on Sullivan because he was so kind and gentle to my toddler niece at his Halloween Huddle last fall. At the time she was being what even the esteemed Dr. Benjamin Spock would have described as an unreasonable cranky-pants because she'd missed her nap--not her most adorable, and yet he was still genuinely nice to her.

In addition to the various holiday parties with player visits that Sullivan hosts, and the Sullivan Playground, Sullivan also has a charity golf tournament benefiting Amplatz. I realize I'm biased, but Sullivan has my vote for the Walter Payton Man of the Year Award.

That Halloween Party was the same day as the playground dedication and Chad Greenway, whose Lead the Way Foundation donated $25,000 for the playground, was also present at the event. Through his foundation Greenway had donated Chad's Locker to the hospital, a locker full of games and notebook computers to help patients and families through long hospital stays. That particular day, I was impressed because Greenway had spent the morning working to get donations and create connections just across the Minnesota/Wisconsin border at Hudson Hospital to place another of Chad's Lockers there (the Hudson Locker opened in March 2013), then he drove back to Minneapolis so he could attend the playground dedication and visit sick kids and their families at Amplatz. Yeah, that's how Greenway kicks back and relaxes on a day off during the NFL season.

The final donor for the Sullivan Playground, the Vikings Children's Fund (VCF), has been a staunch supporter of Amplatz for many years. The Vikings have participated in the Adopt-a-Room program at Amplatz which aims to make the rooms in the hospital more like home so patients and families can spend as much time together as possible as comfortably as possible. Even though my family lives relatively close to the hospital here in the Twin Cities, close is not close enough. Parents need to be able to stay at the hospital with their children, and the spacious and comfortable rooms at Amplatz help them do that.

Apart from supporting the facility and encouraging players to visit children in the hospital, VCF has donated $5 million since 1978 to support the life-saving research in pediatric medicine at the University of Minnesota. Like both Amplatz and the Vikings team, the Vikings Children's Fund serves children and families not just in Minnesota, but throughout the Upper Midwest. Events like the Arctic Blast Snowmobile Rally, the VCF Golf Tournament, and the upcoming Ride for Life Motorcycle Rally allow the team's coaches, players, and staff an outlet to focus their community support and help a variety of causes that support the needs of children and families in the Upper Midwest.

Smile

Truly, I get why local media outlets only bother covering stuff like this when it's a slow news day. It isn't football-y and the media seem to have a dread fear of being used as a professional sports team's public relations arm. When stories about players' and teams' charitable work do make it into local media, it's a 30 to 60 second segment at best, because that's all a touchy-feely puff piece merits.

While I can appreciate that, sort of, for those of us living lives revolving around caring for critically ill children, touchy-feely heart-warming things are a big deal.

Dr. Joseph Neglia, Physician-in-Chief at the University of Minnesota Amplatz, in his speech at the Sullivan Playground opening, cited that elusive feeling of "normal" as being an important part of healing for patients and their families. Amplatz president Kathie Taranto went on to say that research has even shown play to have a therapeutic and healing effect on children who are receiving treatment.

Long-time host of Mr. Rogers Neighborhood, Fred Rogers once said,

Now children at Amplatz can continue that work even when illness tries to get in the way.

Like any other family facing something like this, we haven't done it on our own. We've received so much help and kindness from friends (sometimes KJ Segall texts just to ask how Ellie is doing and it warms my heart), family, and our church, it really does feel like it takes a village to raise a child. Now, in this strange and distanced way, John Sullivan and all those in the Vikings organization who have given their support to Amplatz, we get to count them as part of our odd little village and that's a fun idea.

At eight months, Ellie isn't playing on the slide or climbing yet and, despite a genetic predisposition to being a Vikings fan, she can't get too excited about meeting players at holiday parties at the hospital. But all of those things help relieve stress for our family and give us short break from the tension and uncertainty that rule so much of our lives, those things give us a reason to smile. We live from smile to smile.

Smiles have been much harder to come by in the last eight months. The things that give us a little distraction and a reason to laugh and to smile, are beyond a big deal. Those are the things that give us a breather so we can keep going, they're everything. Even if they don't make the news very often.

My thanks to John Sullivan, and also to Jeff Anderson, and Patrick Leopold of the Minnesota Vikings. And a very special thanks to my sister Jenelle for letting me share this story, you are truly one of the strongest people I know--I love you.