Special Heart: A Journey of Faith, Hope, Courage and Love Page 12

  Still bothered by the scene at Paulie’s bedside with the IV, Amy was extremely agitated. We were all there in the waiting room openly talking about whether Paulie would be able to hang in there long enough for Dr. Jonas to return or whether it would be better to fly him to Boston or Philadelphia for immediate surgery. In the middle of all this family frustration and stress, Big Paul blurted out, “In my sixty-one years of life, this is the worst thing I have ever experienced!”

  Suddenly, in the middle of this bona fide American family meltdown, I looked over and saw a nurse rushing our way. I thought there must have been some kind of emergency down the hall she was running to deal with. To my shock and horror, I suddenly saw where the nurse was going. Amy had collapsed right there in the CICU waiting room and fallen into a clump on the floor.

  Immediately, the nurse called for help and a gurney. A medical team arrived to take her to the emergency room down on the first floor. With Amy now on the gurney and being rolled down the hall, I held her hand as I ran alongside. The paramedics put an oxygen mask on Amy’s face. Although she was not unconscious, Amy was definitely dazed and confused about everything that was happening.

  Once we were in the emergency room, a team of doctors descended on Amy and started checking all her vital signs. They immediately put her on an IV so they could get some fluids in her. I told the doctors Amy had just given birth and was under a lot of stress with her baby being in the CICU. I also told them Amy didn’t get any sleep the night before, was hypoglycemic, and had been breast pumping.

  Amy was still out of it, but after a few minutes I could see she was breathing a little better. Soon her color started to return, and the doctors in the ER told me she was stabilized and not in any danger. After Amy was feeling better, the nurses in the ER gave her some graham crackers to munch on, and it was just Amy and me in a small curtained-off area in the ER. We were at rock bottom. The trauma of the A-line episode had really gotten to Amy, as did hearing all the specifics about Paulie’s heart. Since we were getting no sleep and were totally stressed out, it was clear to me we needed to change some things if we were ever going to be in a position to help our son.

  With Amy lying there in the ER, the oldest patient at Children’s National Medical Center, I somehow found the strength and clarity I had been lacking over the past twenty-four hours.

  “Okay, Amy. We’ve obviously been dealt a tricky hand here. But we need to change our focus, or none of us is going to make it out of here. We have to put blinders on. From now on, this is just about Paulie, and only about Paulie. We need to figure out what is best for him and not worry about anything else. We need to get back to basics. We are his parents, and we need to make some tough decisions,” I said.

  “I think we need to wait for Dr. Jonas to come back. He is the best there is, and we just have to hope and pray—and trust the doctors—that Paulie will get stronger every day he is here. No Philly. No Boston. He’s staying here,” I said.

  By the look in her eyes I could tell Amy was with me.

  “We also have to take care of ourselves, otherwise we won’t be of any use to Paulie. We have to eat. We have to sleep. And we have to trust each other. God gave us Paulie. But we are the parents God gave to Paulie, too. We can do this. We both need to buck up and not blame anybody for this. We need to trust God and trust the doctors.”

  I could see Amy was now listening intently, and a smile started to come to her face. I was now on a roll. “If Paulie is anything like his mom and dad, I know he will be fighting with everything he has. We need to fight for him here in this hospital the same way he is fighting for himself. Let’s put him in the best position we can to help him survive this,” I said.

  Having gotten all that off my chest, Amy and I were now both in tears. But these were not the tears of victims, worrying about all the unknowns, who dropped the ball, or who was trying to ruin our lives. Knowing we had turned an important corner, these were the tears of strength and release. We had our plan, and we both knew what we needed to do.

  “One final thing,” I said. “We are getting Paulie baptized right here in the CICU this week. I’ll feel a lot better once we get Paul up on God’s scoreboard.”

  Amy laughed, and at that moment, for the first time, I started to believe we were that much closer to getting Paulie out of there. After giving Amy a hug and a kiss, I said, “We’re one day closer to taking Paulie home.” Then, right there in that emergency room, behind those closed curtains, with screaming babies all around us, the oldest patient in the ER at Children’s National Medical Center and I started a tradition we would continue till the day we were finally able to bring our son home: we gave each other a high five.

  I called for the nurse to come unhook Amy’s IV line. She had a little boy she needed to be with. And I had to find Dr. Martin and the rest of the family to tell them what the plan was.

  “One day closer,” I told Amy.

  “One day closer,” Amy replied. “One day closer.”

  Chapter Six

  Things Unseen

  In the days immediately following our turnaround moment in the Children’s emergency room, Amy and I became downright evangelical in our newfound mission—our decision—to transform ourselves into the two most positive, upbeat people on the planet. Not because we necessarily felt like it, but we genuinely believed being positive and uplifting would have a direct impact on Paulie’s ability to fight and survive.

  I was done with all the self-pity and the crushing waterfall of victimization I had allowed myself to get sucked under by constantly questioning who dropped the ball in missing Paulie’s heart disease during Amy’s pregnancy. What was done was done. That was all in the past.

  Amy and I turned a serious psychological corner during her brief stint as the oldest patient at Children’s National Medical Center. The blinders were now officially on. From now on this was strictly about Paulie’s health, well-being, and future—nothing else. This was no longer about our personal hopes and dreams being dashed. Not about what doctor didn’t diagnose what or when. Not about blaming God for dealing us a bad hand. Like it or not, this was exactly what God had given us to deal with, so we were on the job.

  Paulie needed us to be focused and forward-thinking if we were going to be part of the solution to help him get through this. The last thing he needed was negativity, second-guessing, or bickering by well-intentioned but openly worrying parents or family members. The residue of stressed-out parents and families always rubs off on children, no matter how old they are or whether or not they are in intensive care units.

  Even though he was just two days old, after our self-directed halftime pep talk in Children’s ER, Amy and I were committed to constructing a sort of protective shield around Paulie there in the CICU. We not only wanted him to have every spiritual advantage possible, we wanted everyone who came in contact with him—caregivers and stressed-out family members alike—to be infused with that same positive vibe, too.

  We might not be able to control the intricacies of his complex heart, the numbers bouncing around on the monitors, or Dr. Jonas’s travel schedule, but we could control our conversation, attitudes, and the overall atmosphere we created around Paulie’s bedside. By eliminating any hint things might turn out badly, we wanted our son to know deep down in his two-day-old spirit that his parents were optimistic, had their winning game faces on, and were on the job for him. We owed him that much.

  Whenever we were by Paulie’s bedside or with family members in the waiting room just outside, we were constantly talking about that happy day when we—all three Baiers—would finally be able to check out of Children’s and drive home together. I might still be getting lost navigating the narrow streets between Children’s and Georgetown, but as long as Paulie was in his firehouse-approved car seat and Amy was happily doting on him in the back, I didn’t care if that trip home took all day. Visualizing and openly conversing about that day became our new mantra, inspirational thought of the day, and total obsession all ro
lled into one. We didn’t know exactly how or when, but it was going to happen.

  There is a scene in the film Apollo 13 where longtime Flight Director Gene Kranz, played by Ed Harris, exhorts his engineers to do the impossible and bring astronauts Jim Lovell, Fred Haise, and Jack Swigert back to Earth after an oxygen tank explosion forces them to abort their mission to the moon. With the astronauts caught halfway between Earth and the moon in a dying spacecraft, Kranz, as played by Harris, bellows to a roomful of engineers and scientists gathered at Houston’s Mission Control: “Failure is not an option!”

  Later, hearing a colleague suggest the mission might yet turn out to be the worst disaster in the history of the U.S. space program, Kranz replies, “With all due respect, sir, I believe this is going to be our finest hour.” That’s the kind of attitude Amy and I wanted to have, especially when we were around Paulie. Despite the scary unknowns he was facing surgerywise, we, too, wanted this to be our finest hour.

  Some days Amy and I were truly hopeful things would work out. Other times I am sure we were simply playacting our way through deep doubts, surreptitiously trying to convince each other things would turn out just fine. In many ways, it didn’t really matter how we arrived at the emotional or spiritual place we needed to be as long as we got there.

  We knew of course that Paulie was hanging by a thread and could take a bad turn at any moment. But even though we sometimes didn’t see how things could possibly turn out in his favor, Amy and I had just enough faith to believe the hopes and dreams we had for our precious son would one day come to pass.

  I have always been a student in the “see it—believe it—achieve it” school of armchair philosophy. I tried my best to fill my mind with images of Paulie walking with me on the seventeenth fairway at Congressional as I spilled over with all my fatherly wisdom about girls, cars, school, and life—not to mention the best way to make par on eighteen. Deep down I knew I could very well be setting myself up for a big fall if things took a turn for the worse. But I desperately needed to change the channel in my mind and visually get Paulie out of that hospital bed, off the tubes and wires, and into his little-boy body at least six or seven years down the road.

  On really good days I would see Paulie all grown up, going to high school dances, playing soccer, walking the links with me on a cool summer morning, and asking me if he should use the five or the six iron. Those were not just fanciful images or Jedi mind tricks I came up with so I could temporarily transport my brain out of the hospital. I regularly prayed for the day when those things—and a lot more just like them—would come to pass.

  Occasionally, in order to catch a quiet moment away from the constant beeps and buzzes of the CICU, Amy and I would venture to a little chapel in the hospital where we would pray or sometimes just sit together and hold hands. We enjoyed walking down the hall and into that chapel whenever we could, especially if someone in the family wanted some personal time with Paulie, or Amy and I needed somewhere quiet to sit and talk other than the waiting room or the coffee shop.

  Dimly lit, with just a few plastic chairs scattered around, the chapel was not fancy, but it always had a warm and calming effect on us whenever we had the opportunity to slip in there for a few minutes. In the corner of the chapel stood a wooden stand holding a large Bible with a lace place holder for marking specific pages and verses. There was also a small stack of writing paper next to the Bible. I suppose the paper was there for folks to jot down verses, prayers, or other thoughts that might come to them during their times of reflection.

  I doubt they teach this in theological seminaries, but I would often go over to that Bible, shut my eyes, flip the pages, and place my index finger on a random verse just for fun to see where I would wind up. Once I went over to the Bible and it was already open to the New Testament book of Hebrews. Someone had scribbled “Chapter 11 verse 1” on a piece of paper lying nearby. I read the verse: “Faith is the assurance of things hoped for, the conviction of things not seen.”

  Even though there were plenty of reasons to believe the mountain Paulie was climbing might be too steep, the verse captured how Amy and I were trying to approach that week in the hospital. Naively or not, we chose to set our eyes on that unseen hope—the assurance—that Paulie would hang in there long enough and Dr. Jonas would figure out the perfect way to reconstruct his heart. We were also trusting and believing the Lord would be holding our hands every step of the way.

  Beyond hope and faith, I also believed there was a wild card or X factor at work—Paulie himself. Looking into his eyes, I could see he was doing everything in his power to fight his way through this and come out the other side. I am not sure I could get any of the doctors to concur with me on this, but given the severe defects he was born with and the way his heart was rerouting the blood flow through his arteries, I was fully convinced Paulie had his own unique set of survival skills the rest of us knew very little about. Apart from being in one of the world’s top hospitals and having some incredibly skilled doctors and nurses caring for him, I sensed Paulie had something just as important going on. He was a fighter with a warrior spirit.

  Along with our renewed spirits and commitment to staying positive, Amy and I also became extremely proactive for our little fighter in the hospital that week. We were constantly agitating—nicely—for everything we thought Paulie needed to help get him healthier and stronger for his upcoming surgery.

  Just one day into his hospitalization, we had already successfully negotiated with the CICU nurses to get all those wires and tubes extended a few feet so Amy could sit in the chair next to Paulie’s bed and hold him to her heart’s content. This wasn’t simply about Amy feeling more like a real mom by being able to snuggle and rock with her son. We both believed the more Amy and other family members could hold Paulie, the more loved he would feel. Subsequently, he would be more secure, grow stronger, and ultimately be much better equipped spiritually and physically to deal with the highly invasive nature of surgery, let alone surgery on his six-pound twelve-ounce infant body with a heart the size of a walnut and arteries smaller than angel hair pasta.

  One day after our ER epiphany, Amy and I also followed through on our decision to have Paulie baptized in the CICU. Despite our relatively high spirits and renewed commitment to being positive and upbeat, we weren’t kidding ourselves; we knew Paulie’s life was on the line. We had intended to have him baptized in our local church by our parish priest when we got him back home to Georgetown, but given the sobering reality that there were no guarantees and the fact that Dr. Jonas wouldn’t be back for another week, I felt strongly about having Paulie baptized sooner rather than later.

  I know people of faith in various denominations have differing views on the meaning or significance of baptism, especially when it comes to babies and children. But for Catholics like Amy and me, baptism is a very important sacrament and long-standing tradition of the Church I wanted my son to be a part of. In the Catholic faith, the sacrament of Baptism is often called the Door of the Church because it opens the door to the other sacraments. Given all the unknowns we were facing, we at least wanted Paulie inside that door.

  To be perfectly honest, even though I am a Christian and believe in prayer, if I had stumbled upon a National Geographic in the waiting room with an article about the healing power of ancient Pacific island dances, just to cover my bases I am sure I would have been rolling up the rugs and trying to find some hand-carved log drums on craigslist. I simply wanted to get anything and everything working in Paulie’s favor that I possibly could, points on God’s scoreboard or not.

  On Monday afternoon, we closed the curtains around Paulie’s medical bay and squeezed in several family members for the baptism. The CICU nurses helped us contact a priest affiliated with the hospital who could come in and perform the ceremony with little advance notice. Just like our wire extension project, even Paulie’s baptism required that we bend a few hospital rules to make it happen the way we wanted. Somehow it must have slipped my mind
to inform the nurses exactly how many congregants would be in attendance. With the two-person-per-bedside rule still in effect, just like trout fishing up in the mountains, let’s just say we were over the legal limit.

  The priest who performed the ceremony was very calming and had an extremely soft voice with what I decided must have been a Kenyan accent.

  Packed in and huddled around Paulie’s bed, we were accompanied by an electronic chorus of beeps and buzzes from the monitors throughout the CICU. After he read a few passages from the Bible, the priest anointed Paulie’s head with oil and holy water. Next, Amy and I both said a prayer. Wiping away a few tears, I prayed, “Dear Lord, thank you for all the blessings you have given us and the biggest of our lives, the birth of our son, Paul Francis. We now turn him over to your care for his upcoming surgery and the recovery that will follow. Please be with all of us gathered here and help us get through this challenging time. Lord, please give us strength. Amen.”

  Amy also prayed. “Lord, help us give Paulie all the love we can give him. Please help us to prepare him for surgery. And be with our family as we put Paulie in your hands.”

  The priest then led the entire family in the Lord’s Prayer. After a few closing remarks, the bedside ceremony was over as quickly as it had begun.

  That baptism wouldn’t exactly qualify as a high church ceremony. But because of where we were, the sardine-can closeness of family members huddled all around, and the fervor in our hearts as we prayed, that bedside ceremony couldn’t have been any more meaningful if we had been planning it for six months and held it in St. Peter’s Basilica in Rome.

  Immediately after the baptism, Big Paul and J.P. had to leave so they could get back to their jobs in Chicago, while Amy’s mother and rock, Barbie Hills, hunkered down for the long haul. Barbie, who always seemed to have a smile on her face, was there for her baby, and now her baby’s baby. My mother, Pat Baier, had flown in from Florida and was also there to help us from the beginning of our time at Children’s.