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

  All my life I had heard the saying “All things happen for a reason, even if you sometimes don’t know why.” I always thought that was one of those convenient phrases you plopped down on troubled souls from the comfort of the first-class cabin 35,000 feet up when you had minimal interest or nothing else to offer. Now, the sobering truth of that phrase landed front and center before Amy and me and bounced right up into our laps. As we sat there in that hospital room sobbing hopelessly in each other’s arms, Amy and I both got a glimpse of the new realities and responsibilities about to overtake our lives.

  Whether because of years of churchgoing or simply sheer desperation of two lost souls not knowing what else to do, right there in that hospital room, all by ourselves, with no pretense and no one watching, Amy and I held hands and began to pray.

  We begged God to spare our son’s life. We also asked him to give us strength and wisdom to be the kind of parents our son needed right now. Complicated heart or not, Paulie was God’s special gift to us. Now it was our time to rise to the occasion and become the parents he needed and deserved to help him through the dark days ahead.

  Chapter Four

  Through the Storm

  Still stunned by the chain of events that had overtaken us over the past sixty minutes, after we prayed together Amy threw on a robe and we headed out the door and down the hall toward Sibley’s Neonatal Intensive Care Unit. While my brain was still trying to process all the medical information about Paulie’s heart condition and details about transferring him to Children’s National Medical Center, Amy had one goal: to get to her son. She needed to see him. Speak to him. Touch him. Hold him.

  With my voracious appetite for news and information of all kinds, Amy knew me well enough to let me take the lead in asking the doctors and nurses most of the questions about Paulie’s medical condition and the logistics for getting him to Children’s. But I knew Amy well enough to know that even though Sibley’s NICU was probably not the best place for a family reunion, there wasn’t anything or anyone who was going to keep her from getting to her son at that moment, no matter where in the hospital he happened to be.

  I am not sure she even knew where she was headed, but driven by her natural instincts and newly acquired motherly intuition, it was almost as if Amy had an internal GPS device guiding her exactly where she needed to go. Even though she was still in a fair amount of physical pain from giving birth the day before, it took everything I had to keep up with her, drafting in Amy’s wake like I was trying to stay with Jimmie Johnson on the third turn at Talladega.

  Having seen this headstrong mother-to-baby hospital quickstep before, the Sibley nurses and aides seemed to know instinctively what was going on and made a path for us as we walked by. Clogged corridors magically cleared as if we were the leads in a choreographed long hallway tracking shot in a high-budget Hollywood feature film. Unfortunately, the lighthearted romantic comedy we thought we were in just a few minutes ago had now jumped into the world of horror, with a very scary script and an uncertain ending.

  The last time we were physically together in the room with Paulie our reality was that he was a perfectly healthy baby boy whose color seemed to be a little off and who wasn’t eating much. “No big deal,” I thought. Going through the process of childbirth, for mother and baby, is traumatic whether there are medical issues or not. To my untrained eye, it had seemed perfectly understandable that it might take a day or two for Paulie to get his full Baier mojo on. “Let’s just get him home, and I am sure things will sort themselves out,” I thought. One nurse even suggested that scenario earlier in the morning when we mentioned Paulie didn’t seem too hungry.

  Unfortunately, that armchair diagnosis turned out to be a little off the mark.

  Now, when we looked down on Paulie for the first time after our bombshell meeting with Dr. Martin, it would be very tough envisioning the Masters golf champion or Super Bowl quarterback we’d joked about just a few hours before. Instead, we would be gazing down on an extremely fragile intensive care patient with multiple life-threatening heart defects—our precious six pound fourteen ounce one-day-old baby boy, Paul Francis Baier.

  It was extremely difficult to comprehend the turn of events, and my head was swimming with fear and anxiety as Amy and I entered the wing leading to Sibley’s NICU. All our excitement about taking Paulie home for the first time, getting him set up in his new room, midnight feedings, family vacations, first day in school, holidays, picnics, soccer games, golfing with his dad, and just about everything else we dreamed about over the past nine months would have to be put on hold for a while. And if we heard Dr. Martin correctly and didn’t catch a serious break or two along the way, those hopes and dreams could very well slip away forever.

  It was so early and there were still so many unknowns, even Dr. Martin couldn’t say precisely what direction things might go, especially given the highly complex nature and abnormalities of Paulie’s heart. Even if we caught that huge break and Paulie made it through a difficult open-heart surgery, would he ever be healthy enough to live the active life of a normal little boy? Would he have to spend his entire childhood on the sidelines? No one had answers for any of those questions.

  Don’t get me wrong. If that was the cosmic deal being offered—Paulie survives but is very limited in what he can do—I would sign that contract one thousand out of a thousand times. I wouldn’t have been thrilled about it, but I would have taken that deal in a proverbial New York minute.

  The pure joy and excitement of those first twenty-four hours in the room with Paulie were enough to convince me this little guy was going to—actually already had—changed my life forever. Touching his flourlike skin. Running my index finger through his tiny fingers and toes. Feeling him breathe in and out as I held him against my chest. Watching his eyes open and try to focus on me as I uttered the most ridiculous things using the most ridiculous voices. But most of all, seeing Amy light up as if God himself had pumped pure sunshine into her soul whenever someone in the family would pass Paulie back to her to hold. It was pure bliss. And selfishly, I admit, I craved more golden moments just like that with the two people I loved more than anyone on this earth—Amy and Paulie.

  Of all the scenarios swirling around my head as we walked, the scariest, of course, was the very real possibility Paulie might not even make it home from the hospital. Dr. Martin didn’t sugarcoat any of that for us. Although he was very compassionate and caring in the way he spoke to us, he didn’t dance around the real possibility that Paulie simply might not make it.

  Forget soccer practice, trips to the golf course, or wrestling on the couch on a lazy Sunday afternoon. We could very well be dealing with a situation where Paulie continued to grow weaker and weaker by the hour and did not even make it to open-heart surgery, let alone survive it. I didn’t dare share my dark introspections with Amy, but by the look in her eyes I suspected she might have been having similar thoughts.

  Thinking back on our conversation with Dr. Martin, I wondered—hoped, actually—that he might have laid out the obligatory worst-case scenario about congenital heart defects just so the hospital would be covered if things didn’t go our way. Given the litigious world in which we live, doctors have to be extremely careful how they phrase things, especially when talking to desperate parents looking for the slightest glimmer of hope that their child will be one of the survivors.

  My gut told me Dr. Martin was being completely straight with us, but every person and patient is unique. No one could say with certainty how an individual case will turn out. Medical professionals can quote facts and statistics about survivability rates until the cows come home. But with Paulie’s situation there were just too many variables to consider, especially this early in the game.

  It’s not that I didn’t trust what Dr. Martin was telling us, but after Amy’s “flawless” pregnancy and having been told without equivocation in the delivery room that Paulie was perfect, I have to admit the needle on my Who-Can-I-Trust meter was bouncing all ove
r the place. After all, if a sonogram missed Paulie’s heart problems at Amy’s thirty-seven-week checkup, who’s to say Sibley’s machines weren’t out of whack, too? Maybe there was a glitch in all the machines and Paulie was perfectly healthy. This might turn out to be one of those happy-ending stories we bore all the relatives with at family gatherings for the next fifty years.

  I knew if I worked this story long enough I could figure it all out and save the day for my son. What a great news story: Flawed Medical Tests—Thousands of Sick Children Really Healthy. I might even get Fox to roll a satellite truck up North Capitol Street to Children’s so I could do some live shots. I wondered if O’Reilly would be interested in my huge exposé. I was sure I could get Greta Van Susteren on it.

  Now in a grade A government issue Psychology 101 classic state of denial, my mind was beginning to wander all over the crazy parts of the playing field.

  I was desperately searching for any explanation other than the one staring me right in the face. My son was desperately ill, and there wasn’t a thing I could do about it.

  Unfortunately, Dr. Martin’s reputation and medical pedigree were unquestioned, so I knew the Flawed Medical Tests story and any number of other ones my mind had conjured up were completely irrational. Still, with all the conflicting information of the past twenty-four hours, I really wasn’t sure whom I should believe.

  I knew these unspoken inner thoughts were negative and could be extremely counterproductive if I didn’t hold them in check. I sure didn’t want Amy to pick up on any of them. She was having a rough enough time being separated from Paulie, and I didn’t want to do or say anything that would add to her stress level.

  So I sucked it up and kept those thoughts to myself, hoping that even though Paulie’s condition went undiagnosed for nine months, everyone now on the job was performing at the highest level and doing exactly what they were supposed to be doing.

  Although I was truly thankful they discovered Paulie’s heart condition while we were still there in the hospital, I could not stop thinking about what might have happened if Nurse Beth Kennedy hadn’t come into our room exactly when she did. As we continued racing to Paulie, my mind was also racing and flashing some pretty horrible images. What if we had gone through normal discharge procedures, taken Paulie home, then spent a day or two—or even a week—trying to diagnose what might be going on with him?

  I mean, after all, babies have eating issues all the time. And who’s really to say what a newborn’s perfect color should be? What if we had gotten Paulie home and a few days later woke up in the middle of the night to find him blue in the crib and struggling to breathe? No matter how we might have diagnosed why Paul wasn’t eating or why his color was off, in a million years I would never have suspected something as serious as congenital heart disease. It’s just not something you think about.

  Deciding that the “what is” scenario was scary enough without conjuring up the “what if’s,” I tried my best to put the dark and negative thoughts out of my mind. But I simply could not get my brain around the idea that something as serious as heart disease wouldn’t be picked up long before now. Safe to say I wasn’t feeling any Tony Robbins optimism about the medical establishment at that particular moment, and I was definitely going to need a little time to sort things out and let my anger subside.

  My entire life I have always been a positive, glass-half-full kind of guy. I have always been sold on the idea that sending out positive, uplifting vibes is not only a good way to live your life, it also brings good vibes back your way.

  I totally bought into the universal principles of the Secret, the Power of Positive Thinking, Paying It Forward, and the Golden Rule. When I was working at Hilton Head, I think I must have listened to every Tony Robbins tape ever recorded while I jogged on the beach one summer. But as I continued to think about Paulie and the enormous crisis he was facing, negative thoughts flooded my mind no matter how positive I tried to be. And I couldn’t stop any of them.

  I don’t know if it’s because I am a working journalist or simply just the way guys are wired to process information, but when I am hit with multiple challenges at the same time, I can normally place each of them into separate compartments in my mind: react to the ones that need immediate attention, hold back on the ones I have time to reflect on, prioritize, categorize, sequence. And always—always—keep the counterproductive drama to a minimum.

  But the situation with Paulie was like nothing I had ever experienced. Suddenly, there were no boundaries. No compartments. No place to put anything. Everything I was sensing, feeling, and thinking was competing for my attention at exactly the same time and with equal intensity. I was having an extremely difficult time trying to distinguish between number one on the priority list and number 234.

  Everything Dr. Martin told us back in the room was numbing and overwhelming. As Amy and I walked to the NICU we simply had no idea what we should expect for Paulie, or even what we could realistically hope for. I had no idea if I dared think beyond two or three weeks, let alone two or three years down the road.

  Would a few years with Paulie be too much to ask?

  At first it was simply one of a dozen questions racing across the screen of my mind as we continued to make our way to our baby. But soon it slowed to a crawl and seemed to hang there all by itself. I knew Dr. Martin was in no position to offer any guarantees on that particular question or any of the other ones I had about Paulie’s future.

  “Dear Lord, would it be too much to ask to have a few years with Paulie? Please let me see my boy grow up. I have so much to tell him—so much to teach him!”

  The fact that the question spontaneously morphed itself into a prayer surprised me. Raised a Catholic and having served as an altar boy back at All Saints Catholic Church in Atlanta, I was well aware of the rituals, doctrine, and tradition of the Church. But no matter how many times I served Mass or how many years I attended Catholic schools, it wasn’t like I was someone who walked around quoting Bible verses or shooting up prayers to God every time I encountered a challenge in my life.

  Given the seriousness of Paulie’s situation and the intense personal nature of what we were experiencing, deep within me it seemed as if an inner voice was reminding me that prayer is simply talking to God whenever and wherever you happen to be during your moment of need. There were no stained glass windows or cushioned kneelers anywhere to be found in that Sibley hallway. Yet because of the urgency of our schedule and the dire situation in which we found ourselves, I figured if God was genuinely in the business of listening to heartfelt prayers from desperate souls—and I surely was one—then that busy corridor was as good a place as any to try to get something going in the miracle department for my son. I wasn’t sure I if could hit God up for the full monty and ask him to wipe the slate clean and zap Paulie with a brand-new, problem-free heart. But I thought two or three years was not an unreasonable place to start.

  When we finally arrived at the NICU, I was a little surprised to see that the cardiac transport team from Children’s was already there and prepping Paulie for his transfer. Their presence reinforced in my mind how serious Paulie’s case must be. Moving with professional speed and precision, from across the room the transport team paramedics appeared to be like those white-robed technicians you see in grainy old NASA videos showing last-minute preparations before launching Apollo astronauts into space. No matter how professional or experienced the members of that team were, being forced to stand off to the side and watch several people we didn’t know fidgeting around our son as though he was the center of the universe was surreal.

  The paramedics gave the impression they had performed this kind of transfer a thousand times before. All good, but unfortunately when you are a parent in an intensive care unit and it is your son or daughter being wired up, you are not necessarily thinking about the thousand times the professionals have performed the procedure without a mistake. Given your totally stressed-out frame of mind, you are more than likely thinking t
his will be the one time in a thousand they really screw things up. Such is the anxiety level for any parent or loved one who has ever had to put in time around an intensive care unit or hospital waiting room, pediatric or otherwise.

  I felt so bad for Amy. The mother of a newborn is emotionally and physiologically wired to be snuggling with her baby—especially a one-day-old—with minimal distractions from the outside world. Now it seemed that the entire outside world was hovering around Paulie, much closer to him than Amy or I could get.

  Seeing Paulie hooked up to all those tubes and wires for the first time, Amy, understandably, became totally unglued. Competing with a phalanx of tubes, wires, and all the other high-tech equipment a modern intensive care unit has to offer is not the idyllic picture a new mother has in her head when she envisions those sweet early bonding moments with her baby. I’m sure it just broke Amy’s heart as she imagined the pain and discomfort Paulie must have felt when they were poking, probing, and hooking him up to all the equipment.

  As helpful as it was to have a next-step plan of action for Paulie, the pace at which things were beginning to move was starting to hit me. This was no movie or television program where you could hit the pause button. This was all real, and it was happening to us, right now, ready or not. Finally, when an opening cleared around Paulie and I got a closer look, I could see that the paramedics had placed a small breathing tube into one of his tiny nostrils and an intravenous line into his arm. Along with the IV and the breathing tube, they’d also attached some kind of probe to Paulie’s chest to monitor the movement of his heart and lungs.