Special Heart: A Journey of Faith, Hope, Courage and Love Read online

  These spectacular everyday vignettes presented by Paulie—and increasingly by and with Daniel—were now playing themselves out pretty much daily around the Baier home in northwest Washington. Amy and I were enthralled every time and thrilled to have our own box seats for all daily performances and especially the weekend matinees.

  As much as I enjoyed anchoring Fox News Channel’s Special Report and considered myself extremely fortunate to have a front-row seat to history and the politics of the nation, nothing from the White House or Capitol Hill could ever compete with the adrenaline rush I got whenever the stage lights went up for the latest edition of the 2013 Baier Brothers’ Review.

  A few years back, to accommodate the growing Baier family, we moved out of our Georgetown condo down on the river and into a bigger house so all the Baier boys, including me, would have plenty of space for our ever-increasing arsenal of boy supplies, sports equipment, balls, plastic tractors, basketball hoops, and, of course, our Sports Authority–scale inventory of little boy and big boy golf equipment.

  Paulie and Daniel were becoming such grown-up little men lately. In fact, Paulie recently informed Amy and me that he now wanted us to start calling him Paul instead of Paulie. The request was about him feeling more like a big boy, which I immediately interpreted as having something to do with a recent playground encounter he might have had with a bigger kid previously known as Frankie, Freddie, or Willie. I suspect the newly minted Frank, Fred, or Will was probably allowed to retire his own “ie” as a birthday gift, or possibly it was part of some grand family negotiation involving a promise to put all dirty clothes in the hamper and feeding Fluffy every day after school.

  Amy and I were perfectly fine with the Paulie to Paul rebranding campaign, although Amy thought it was one more sign that Paulie—Paul—was growing up way too fast and would soon be out the door, off to college, into his own apartment, and only contacting us when he needed cash so he could take a year off to broaden his horizons backpacking across Europe with some girl named Natasha he met standing in line at Starbucks.

  I said, “Babe, we have at least twelve more years with Paulie at home. He’s not leaving for his freshman year in college just yet.”

  But maybe Amy was onto something. Twelve more years or not, the fact remained that in just one month Paul would be entering kindergarten—and that’s where it all begins. Parental separation angst aside, Paul couldn’t have been more excited about joining the ranks of all the “grown-up kids” he would see in the neighborhood walking with their books as they made their way to school every morning.

  His maturity star on the rise and playground influences notwithstanding, maybe Paul figured dropping the “ie” from his name would give him a bit of a credibility boost when he stepped into the classroom for the first time at St. Patrick’s Episcopal Day School in early September. No matter what was going on inside that amazing six-year-old brain, Amy and I regularly thanked God for him, Daniel, and all the other blessings too numerous to mention in our lives. We had two healthy, growing boys who filled our lives with much joy; we couldn’t have been any more grateful to God.

  With Paul entering kindergarten for the first time in just a few weeks, our calendar was marked up with various dates and times related to his school schedule, as well as playdates and activities for Daniel. Most of the September days on the calendar had multiple events listed: first day of school, karate class, trampoline park, library visits, and on and on. But Thursday, September 19, had just one notation: CNMC, for Children’s National Medical Center.

  Just two weeks after his first day at school, Paul needed to take a field trip of sorts to Children’s so he could undergo his third open-heart operation.

  It was time for Dr. Richard Jonas to replace Paul’s donated baby aorta, the homograph connector, with a newer, larger one that we hoped would carry him into his teenage years. During Paul’s most recent angioplasty in December—his seventh—Dr. Slack confirmed what we already suspected: Paul and his current connector were both running out of steam.

  Several times over the past six months, Paul had complained of having chest pains and said he felt like he was running out of space around his heart. At various times throughout the spring and summer months, he also complained about having difficulty breathing, especially after running around with the other kids on the playground or at one sports activity or another. After he exerted himself, Paul’s heart would sometimes be pounding in his chest like the pistons in a nitromethane-fueled dragster. These episodes were always frightening, not only for Paul but also for Amy, who increasingly found herself sitting off to the side with him as he clutched his chest and struggled to catch his breath.

  Though not always rush-to-the-hospital emergencies, Paul’s increasing complaints about how he was feeling were definitely evidence that the homograph he’d had in his chest for more than five years was losing its effectiveness and starting to fail because of all the stresses and strains created by Paul’s growing body. And boy, was he growing! When Paul turned six years old in June, he weighed in at a hefty fifty-seven pounds and stood four feet two inches tall. Our pediatric cardiologist, Dr. Deneen Heath, was convinced Paul was going to wind up being at least six feet four or five and towering over Amy and me before we knew it. All great, but that rapid growth was really putting a strain on the connector in Paul’s chest and just about everything else going on around his reconstructed heart.

  As scary as some of those summer playground episodes were, Dr. Heath assured us Paul’s heart would almost certainly not fail or go into any kind of cardiac arrest without us having major warning signs first. So even though he would often get winded or feel pressure in his chest, Dr. Heath told us Paul’s body would self regulate, and we shouldn’t restrict him from running around or baby him in any way. Still, throughout the summer, Amy and I were very nervous and on high alert for the slightest sign Paul might be headed for trouble.

  Once during the summer Amy took the boys to Trampoline Park, and after five minutes Paul’s heart was ready to jump out of his chest, while younger Daniel could go for at least thirty minutes. Increasingly, Paul was getting tired more quickly than before, forcing him to take more breaks than the other kids he was playing with. Subsequently, the pace and duration of pretty much all of his physical activities had to be altered significantly throughout the spring and summer months.

  I used to tell my friends across the country that D.C.’s heat in the dead of summer was akin to a St. Bernard dog constantly breathing down on you—wet, hot, and extremely sticky. With the city’s legendary heat fast approaching came more concerns about how Paul would make out running around with his friends. Amy was extremely creative in the way she would adjust Paul’s schedule without making too big a deal about it. Not wanting Paul to feel like he was missing out on anything or scare him in any way, Amy quietly changed his activities a little. Knowing Paul couldn’t handle, say, an hour-long karate lesson, all his sessions became thirty minutes.

  Throughout much of the summer Amy also became pretty much a helicopter mom, hovering around Paul and not letting him out of her sight for more than a few minutes at a time just in case there needed to be an unscheduled trip to Children’s to have him checked out. Amy was as calm as any helicopter mom could be under the circumstances.

  I, on the other hand, was a nervous wreck.

  Sometimes calling Amy to check in during the day, what I heard on the other end of the line was, “Honey, don’t worry, but…” Those words, of course, would always rocket my heart directly into my throat without passing go, and I would immediately start pacing around my office and yelling into the phone, “I am not worried. I am not worried!” Every time I received a call from Amy, before I picked up the phone I would imagine hearing, “We’re at Children’s. We need you here ASAP!” It was a nerve-racking time as we approached Paul’s third open-heart operation.

  Dr. Heath was incredibly helpful to us throughout this period. Paul’s cardiologist pretty much from the beginning, Dr. Hea
th is truly an amazing woman. Not only smart as a whip about everything to do with pediatric cardiology, she could easily write a textbook on the topic of doctors and bedside manners. Dealing regularly with stressed-out parents worried sick about their children with heart disease, Dr. Heath always has a smile on her face and a tremendously calming effect even in the midst of some very scary moments.

  We were very fortunate to have Dr. Heath as Paul’s pediatric cardiologist for a lot of reasons. For one, she almost didn’t make it into medicine at all.

  Her father, a successful Wall Street real-estate type, wanted Deneen to do something entirely different, telling her, “Why don’t you go into business and make something out of yourself?” Luckily for us, Deneen’s first encounter with Economics 101 at Princeton University didn’t turn out too well, so she circled back toward medicine. Seeing how caring she was with small children, Deneen’s mother told her she should be a pediatrician. Upon hearing that, once she was actually in medical school, Deneen, of course, tried everything she could not to be a pediatrician. She decided she wanted to be an orthopedic surgeon because that was what men did.

  But as fate would have it, when Deneen did her required training in pediatrics, she absolutely fell in love with the children and had to admit her mom was right all along. After deciding to focus on children’s health, Dr. Heath zeroed in on cardiology because she found the interactivity of the heart, lungs, and arteries—“plumbing and electricity,” as she calls it—absolutely fascinating. Also, seeing all those stressed-out parents dealing with their children’s heart issues, Dr. Heath liked the idea of being able to help families for months, sometimes years, holding parents’ hands “through the entire journey,” as she would often say. Having Dr. Heath by our side throughout our journey over the past six years had been a complete blessing that made our experience at Children’s, if not pleasant, at least infused with a great measure of hope, optimism, and always with an ample supply of her contagious laughter.

  One day early in the summer, after an episode during which his heart was racing and he was experiencing chest pains, Amy decided to talk to Paul about how we had a plan to get him all fixed up. She sweetly and softly spoke to him about how, after his upcoming surgery, he would be able to run faster, his heart wouldn’t beat so fast, and he would be able to stay on that trampoline as long as he wanted. With his heart racing and still in a fair amount of discomfort, Paul looked at Amy and pointed both his thumbs high in the air while saying, “Two thumbs up. That would be great!”

  Amy said it was a nice moment and reinforced her impression that as traumatic as these open-heart surgeries were, Paul understood the need for them and trusted everyone around him who was working hard to keep him healthy for the trampoline park, the playground, the soccer field, and all the other good things this life has to offer a six-year-old boy.

  All through Paul’s little-boy-growing-up years we knew this third open-heart surgery was on the horizon, but as the day got closer the stress monsters started paying their normal visits, only this time with much more intensity than five years ago. Amy was once again having a round of her really bad headaches, and when I was able to get any sleep at all, it was normally accompanied by very dark and recurring dreams about funerals and death.

  Concerned about the dark thoughts and specifically the graphic nature of the funeral dream, I sought help from my local parish priest, Monsignor Peter Vaghi of the Little Flower Parish in Bethesda. Monsignor Vaghi, a former lawyer quite well known in legal and spiritual circles in D.C., was highly sensitive and very helpful to me throughout this time, praying with me and helping me work through the issue.

  Another individual who helped me a lot during this time was a friend from Katy, Texas—Randy White. Not the Hall of Fame Dallas Cowboy tight end and linebacker of the same name, my Randy White happened to be a Southern Baptist preacher who always seemed to have the right words of encouragement and counsel when I needed them most. Often, Randy would send me e-mails with simple and meaningful prayers that helped me to stay focused and spiritually strong for everything we were facing with Paul.

  With a Catholic monsignor in the heart of Washington and a Southern Baptist pastor in a small Texas town both regularly praying for me, not only did I feel fair and balanced in the spiritual resources department, I considered myself completely blessed that I had wonderful and caring people in my corner and watching my back during some very challenging days.

  Even though Amy and I had been through this open-heart scenario twice before with Paul’s earlier surgeries, I think the increased difficulty we were both having this time around had to do with the fact Paul was now able to talk to us about what was going on with him. Paul was older, and the way we talked to him about the operation had to make sense on his level. Unlike the previous surgeries when he was still a baby and not able to talk to us about what he was thinking or feeling, this time Paul had a lot on his heart and mind that he definitely wanted to express.

  Amy and I therefore spent a fair amount of time talking to Paul about the surgery and doing our best to try to get him to buy into the idea that it was really a good thing and he shouldn’t be too freaked out about any of it. Scared was fine, but not too scared. Sad, even worried, was okay, but not to the point of being depressed. To get him to a safe, calm place, Amy and I were constantly talking to Paul about all the great things he would be able to do after this surgery was behind him. We kept trying to paint a positive, uplifting picture for him. Not obsessively so, but whenever we could do so naturally—before bedtime, on a walk around the neighborhood, before school, or whenever it seemed like the right time to bring it up.

  Apart from the way we were talking to Paul about the upcoming operation, unlike the previous surgeries when he was a baby, six-year-old Paul now had serious thoughts and feelings he could communicate to us. And it seemed like every day presented us with a new round of difficult questions about his heart and specifically what would be happening to him during surgery. One day early in the summer I woke up to, “Daddy, could I die from my surgery?”

  Like anyone in that situation, I was completely thrown. I didn’t want to be an elusive politician trying to squirm out of answering a difficult question, but I found myself stalling for time till I could come up with the right words. Eventually I said, “Buddy, we all could die anytime. But I am convinced you are going to have a long, healthy life. And in just a few weeks you are going to be running faster and jumping higher than you ever have before. New superpowers are coming to your heart,” I said. Paul looked at me and smiled.

  “Cool, Daddy!”—with two thumbs up again.

  Even with all the tough questions from Paul, it wasn’t as though the entire experience was totally new for him. After all, every morning when he woke up he could see the huge scars from two previous surgeries that ran directly down the middle of his chest, daily reminders that he was a little different from the other kids he played with. Amy and I both worried about those scars. What did he think about them, really? Kids being kids, what kind of grief would they cause him through the years? To Amy and me, those scars were beautiful because they represented life and the fact that Paul’s heart had been fixed. But to a six-year-old mind—we just weren’t sure what he thought about all that.

  Trying to minimize the spells of darkness from descending and to keep everything as upbeat as possible, just a few weeks before the surgery Amy and I decided to take the boys to Florida for a family vacation. Both sets of grandparents have homes in Naples, so it would give the boys an opportunity to spend time with them while we tried our best to sit in the sun, romp in the waves, and think about anything other than intensive care units for a few days. One day while we were out by the pool we saw an older man sitting in a nearby hot tub with a big scar on his chest. He clearly had had heart surgery, and Amy said to me, “I wonder if I should bring Paul over to talk to him?”

  “Yes! Good idea,” I said.

  So Amy got Paul and they walked over and introduced themselves to
the man with the scar. I also went over to talk to the man who, coincidentally, was from Amy’s hometown of Chicago and also a Fox News watcher.

  Amy told the man we wanted to introduce ourselves to him because our son had had two open-heart surgeries, seven angioplasties, and was getting ready to have his third open-heart operation in just a few weeks.

  “We saw your scar and thought Paul would think that was really cool,” Amy said.

  Getting a good look at the man in the hot tub, Paul said, “Wow! How did you get your scar?”

  “Well, I have had two open-heart surgeries, too!” the man replied.

  “Really?” Paul said. “Do you have more coming?”

  “I hope I am done,” the man said.

  “Well, I have one coming up,” Paul informed him matter-of-factly.

  “I bet you are going to be A-OK. You are going to be just fine,” the man told Paul.

  Paul said, “Yeah, I think so, too.”

  Then, transforming himself into the grand inquisitor, Paul started asking the man specific questions about his scar, exactly how he got it, and how his heart felt after his operations.

  The man said, “I still have a pacemaker in there.”

  “What’s a pacemaker?” Paul asked.

  The man in the hot tub tried his best to explain to a six-year-old exactly what a pacemaker did. After he was done with his explanation, Paul asked him, “So you have wires in your body?”