Special Heart: A Journey of Faith, Hope, Courage and Love Page 10

  I knew deep down it was going to take something altogether different than a few see-throughs to help us cope with what we would be facing in the days ahead. But even though the gathering clouds looked scary and dark, I got the sense we might not be taking this journey alone. There just might be someone looking out for us—helping us to see our way through the storm.

  Chapter Five

  One Day Closer

  Amy and I had a fitful night. I got two hours’ sleep at most, and I know Amy got even less. In the middle of the night I woke up, turned toward Amy’s side of the bed, and saw she was gone. Down the hall, the rhythmic sounds of the breast pump machine were coming from Paulie’s room. How sad Amy must have felt at that moment. She was so looking forward to having Paulie home with her: feeding him, doting on him, snuggling with him, and all the other things a first-time mother dreams about doing with her new baby. Now, in the middle of the night, Amy was sitting alone in the dark, in the very room and the very chair in which she was supposed to be nursing Paulie—and he wasn’t there.

  Amy and I spent a lot of time getting that room all fixed up and just right for Paulie’s arrival: multicolored art on the walls, a black wood crib with leopard print pillows, a pullout couch, and a big white stuffed tiger we had already nicknamed Simba. The best thing of all was a comfortable white glider rocking chair we thought would be great for coaxing Paulie back to sleep in the middle of the night. It was just the perfect nest of a room for Mom and Dad to spend quality bonding time with the newest addition to the family. Now Amy was sitting in that room all alone.

  Before we fell asleep, Amy told me she cried all the way home from Sibley. With her brother J.P. driving Amy’s car and her mother up front, Amy sat in back next to Paulie’s empty car seat. Amy had been dreaming of that special moment when all three Baiers would be leaving Sibley together—me driving and she loving on Paulie all the way home in that backseat. She played that iconic coming-home-with-baby scene a thousand times over in her head. Wanting that first trip home from the hospital to be absolutely perfect, Amy even went to the local fire station to make sure the car seat was properly installed. Riding through the streets of Washington next to that car seat without Paulie in it really got to her.

  After we got home, Amy took a hot shower. Still crying, and with the water rushing against her head, Amy told me it was almost as if she could hear Paulie crying all the way back at Children’s National Medical Center. We held each other very close that night, both of us sobbing at various times. It’s funny how that would happen. When Amy was having a particularly rough moment, I somehow seemed to have just enough in my emotional tank to comfort her. And when I started to hit bottom, Amy had something for me: a hug, a pat on the back, or just the right word of encouragement to preempt any impending spell of darkness that was trying to descend.

  Despite feeling heartbroken about being back home without our son, whenever Amy was breast pumping, even with tears in her eyes, I could still see a glimmer of that old Amy Hills Baier spirit trying to shine through. Amy had read several articles about breast milk and how wonderful all the natural nutrients were for new babies. Now that Paulie was in a fight for his life, Amy had her game face on and she was on the job.

  By keeping up with pumping, freezing the milk, and storing it, Amy was committed to doing everything in her power to get Paulie as strong as she possibly could. We really didn’t know specifics yet about what he was facing surgically, but Amy was totally convinced if she was faithful with her breast pumping every four hours, she would be having a direct impact on Paulie’s chances for survival.

  Apart from all the natural nutrients and vitamins she would be supplying Paulie, on a whole other level it gave Amy something specific she could do, a project to help her stay positive and not succumb to any dark moments brought on by worrying about the unknown. Amy is extremely organized, and I noticed she had already marked the refrigerator calendar with her round-the-clock “feeding times” for Paulie. She also cleared out an entire section of the freezer and prelabeled several empty plastic milk pouches with dates and times for pumping. Every four hours, no matter how tired or stressed, Amy would be up and pumping milk.

  The nurses at Children’s assured me they had pumping equipment and a small private room there in the CICU whenever Amy needed to use it. Even though she was probably going to spend most of her days and nights at Children’s, Amy would be able to keep up with her project—her new life mission, really—to get Paulie as healthy as possible and ready for his surgery.

  Throughout Amy’s pregnancy, and even more so when we got closer to her delivery date, all my buddies with children were constantly busting me out about how my life was going to drastically change once I became a dad. They razzed me about how I would be joining them in the Sleep Deprivation Club. Soon, they told me, I would be living the life of a zombie and waking up all hours of the night to change diapers, heat bottles, and rock my little guy back to sleep—all while I was completely dead on my feet.

  After a night of complete sleeplessness, they assured me, I would stumble into work the next day totally exhausted but exhilarated and amazed at how productive I could still be on the job. In a perverse way, I was really looking forward to joining that club. I wanted in and I wanted all the merit badges. It was a rite of passage.

  Although my friends had unique stories about the births of their own children, to a man they all warned me: “Don’t leave the hospital any earlier than you have to; you’ll be home soon enough—then you won’t be getting any sleep at all!” Here I was; I wanted to stay another night with Paulie at Sibley, but because of his transfer to Children’s, Amy and I were forced to come home earlier than we wanted.

  In a sense, I had been awarded my membership badge in the Sleep Deprivation Club with an asterisk. Now I wasn’t getting any sleep because Paulie wasn’t home with us. It was ironic. I wanted all the worst-case scenarios my new baby would assuredly bless me with: screaming in the middle of the night, changing nasty diapers, cleaning up vomit. I wanted it all.

  But there were no dirty diapers, no cries in the middle of the night. No 3:30 a.m. negotiations with Amy over whose turn it was to get up and deal with a screaming baby. Instead, I was lying in bed wide awake, listening to my sobbing wife down the hall, and worried sick about my one-day-old son who was hooked up to wires and tubes in a strange hospital across town.

  With Amy done with her breast pumping and back down for a few minutes’ sleep before we had to get up and go to Children’s, I quietly slipped out of bed and made my way into the kitchen. It was early on Sunday morning, and I went out front to grab the Washington Post. As I reached for the paper I could see headlines about a jeep rigged with explosives slamming into Glasgow Airport, a new universal health care bill going into effect in Massachusetts, the role of Independents in the 2008 presidential race, and an article about former president Bill Clinton joining his wife, Hillary, for their first joint campaign appearance in Iowa.

  I was normally up to my eyeballs with news 24/7, but as I unfolded the paper it occurred to me that from the moment we drove to Sibley Thursday night until now, I had pretty much checked out from everything else going on in the world. Aliens could have landed on the National Mall to deliver a galaxy-tested interstellar plan for balancing the budget and I wouldn’t have known a thing about it unless one of the nurses happened to mention it to me in passing on my way to the hospital cafeteria.

  The Washington news clock starts anew each week with the Sunday morning news and public affairs shows—Fox News Sunday, NBC’s Meet the Press, ABC’s This Week, Face the Nation on CBS, CNN’s State of the Union, and C-SPAN’s Washington Journal. I had been so out of it newswise I had no idea who the guests were on my own network’s Sunday show, let alone any of the others.

  Even though I was clueless about what news stories had transpired over the past two and half days, to be perfectly candid I wasn’t totally unplugged. For better or worse, I still had my Blackberry with me the entire time I wa
s at Sibley and Children’s. For a while there, before the wave of smartphones hit the shores of D.C., it seemed as if everyone in town working in politics or the news business had a Blackberry—or, as they were jokingly called because of their addictive nature, a Crackberry.

  So while I was on the job checking Paul’s monitor readings at Children’s the night before, like Amy, I had come up with my own special project. Feeling powerless in my efforts to help my son, the only thing I could think to do was scroll through the names in my Blackberry contact list to see if I knew someone—anyone—who might know something about Children’s, its cardiology department, pediatric heart disease, or anything else that might help me get a better grip on things.

  I was already thinking, as any parent would, if Paulie’s case was as serious as Dr. Martin said, I wanted him in the best pediatric heart hospital in the country. Through several e-mail exchanges with one friend, I found out he knew a doctor at Children’s who might be willing to talk to me. This doctor knew the inner workings of Children’s cardiology department and told my friend that Dr. Martin was the real deal—“nobody better,” he said.

  In the meantime, I received several e-mail responses from friends who had been working on a Best Hospital project for me. The notes I received all seemed to repeat the same three hospitals as being among the best in the country for complex cases like Paulie’s: Children’s Hospital in Philadelphia, Children’s Hospital in Boston, and Children’s National Medical Center here in Washington, where Paul currently was.

  One friend told me Children’s in Washington had one of the best, if not the best, pediatric heart surgeons in the world for extremely complicated cases such as Paulie’s: Dr. Richard Jonas. I am sure Dr. Martin mentioned Dr. Jonas to us at Sibley, but I was so discombobulated by everything we were being hit with at the time, I was having an extremely difficult time holding on to information.

  After I got back home from the hospital late Saturday night, I received a call from the doctor who worked at Children’s. He told me Dr. Jonas used to be at Children’s Hospital in Boston and had been recruited to D.C. just a few years before. He said when Dr. Jonas was still in Boston, Children’s sent their trickiest heart cases to him up there. He was that good and that well respected. It was apparently quite a coup for Children’s National Medical Center when they were able to recruit Richard Jonas to join their cardiology department.

  As with any news story I ever covered, it was a luxury to have someone on the inside to bounce things off of. Happy to have this doctor as a source right there at Children’s, I asked him if I could stay in touch over the next several days as I received more detailed information about Paulie’s situation. “Sometimes I get the feeling you doctors hold back and don’t always share exactly what is on your minds, especially when asked specific questions about how things might turn out,” I said. My new doctor-friend-source assured me I could call him anytime if I was getting frustrated and felt my questions about Paulie’s case weren’t being answered.

  Before we knew Paulie had any medical issues, I’d sent out an e-mail to family and friends announcing the new addition to our family. Over the past two days, I’d received several notes of congratulations, encouragement, and welcome into the Holy Order of the First-Time Parent. Now, as word started getting out that Paulie was in trouble, I received a whole new wave of notes from concerned family members and friends asking what they could do to help.

  To a person, they all said they would be praying for Paulie, Amy, and me and thinking good, positive thoughts. While Amy was sleeping for a few minutes before we headed out the door, I hopped on my laptop and wrote a group message so my family, friends, and colleagues at Fox would have a better idea about what was going on:

  July 1, 2007, 6:56 AM, Sunday

  Subject: Not as we expected…

  Thank you all for your kind words and good wishes after the last e-mail. Now we’d like to ask you for something else—your prayers. After almost a full day with Paul and after he got a completely clean bill of health, Paul started having a hard time breathing. After multiple tests, doctors told us he has congenital heart disease that requires emergency surgery.

  There are basically a few things wrong with his heart and the major arteries around it that need to be fixed. Fortunately, doctors caught it in time and he has been transferred to Children’s National Medical Center, one of the best hospitals in the world for this kind of treatment. Paul is in the Cardiac Intensive Care Unit and will have to have surgery in the next day or so.

  It’s a tough time, but we are a family of fighters, and we know he’s going to pull through. We would really love it if everyone could say a prayer for our little guy—we really believe that can work. We know he can be a modern-day medical miracle. This isn’t what we expected, but it’s what we are dealing with. Thank you all for your support through this difficult time.

  Bret and Amy

  Once Amy woke up, she reminded me that her father wanted us to join him, J.P., and Amy’s mother for breakfast at their hotel before we all drove together to Children’s. Amy might have been my wife, but she was still Big Paul’s little girl, and he wanted to make sure she started off the day—and what surely was going to be a very difficult week—well fed.

  Paul Hills is your classic get-it-done, no-obstacle-too-big, world-changing type A personality kind of guy, and one of the most successful businessmen I have ever met. No doubt feeling every bit as powerless about Paulie’s situation as I did, Big Paul probably thought if he could at least get us all together and fed he was doing something practical to help us get focused and ready for our meeting with Dr. Martin and his team later in the morning.

  Amy and I had only been married for two and a half years, but by now I think I had her quirks, mannerisms, and idiosyncrasies pretty much nailed. All through breakfast, I could see she was about to jump out of her skin, she wanted to be with Paulie so badly. It wasn’t long before Amy started instructing each of us to hurry up and finish eating so we could get out the door and on the road to Children’s. Amy simply had to get to her son.

  The second we got our visitor passes at Children’s, Amy was off and running for the CICU and Paul. It wasn’t as though she was nervous or even crying at that point. It was more basic—more physiological—than that. Amy was simply going to burst if she didn’t get to Paulie. Other than mothers who have carried a baby, I doubt any of us can really understand what she must have been feeling at that moment after being separated from her newborn son for the past twelve hours.

  When we arrived at the nurses’ station at the CICU, we were told only two people could be at Paulie’s bedside at a time. Amy and I went in while the rest of the family camped in the small waiting room just outside. Amy let out a sigh of relief when she saw Paulie. Immediately, her entire countenance lightened as if someone had clicked a switch inside her. She was a completely different person; Amy Hills Baier was back.

  The way they had Paul hooked up to the monitors and breathing tube, Amy wasn’t able to hold him, so she had to settle for rubbing his skin and talking to him. Despite not being able to snuggle with him like she really wanted to, Amy seemed to find a measure of peace just being with Paulie. I could sense her stress level begin to drop the instant she started stroking his soft skin and nuzzling her face against his. It was something to see. Paulie was the extreme critical care patient, but if I didn’t know better, I would say he was having some sort of healing effect on Amy.

  Along with storing up breast milk, Amy was also convinced Paulie would do much better in the hospital the more he was spoken to and physically touched—talking to him, singing to him, stroking his hand, and holding him in the chair next to his bed whenever we could figure out how to get those wires and tubes sorted out.

  I believed the same things about therapeutic touching, talking, and singing to Paulie as Amy did, but she seemed to know it all so instinctively, deeply, and with fervor. It was as if Amy had been training for this role her entire life. In fact, with her family
already in town, my mother coming, and more brothers and a sister-in-law on the way, Amy was already concocting a plan whereby Paulie would have a family member with him—“loving on him,” as she put it—pretty much around the clock. Since the two grandmothers, Barbara “Barbie” Hills and my mother, Pat Baier, would surely be performing the heaviest lifting, Amy had already started working up schedules for what quickly became known as the Grandma Brigade.

  While Amy was continuing to love on Paulie as much as she could through the wires, having already appointed myself a member of the official medical team the night before, I checked in with the other staff to see about Paulie’s overnight numbers. Before long, Dr. Martin came into the CICU, reintroduced himself to Amy and me, and asked if we could meet with him and a few members of his cardiology team in a side conference room. Amy immediately ordered me to go to the waiting room to get her mother and father so the next shift of family love could clock in at Paulie’s bedside while we were in our meeting.

  With Dr. Martin was another cardiologist, Dr. Deneen Heath, and Dr. David Stockwell, who headed up the CICU. As it turned out, Dr. Stockwell was my secret source from the previous night’s phone call. In many ways I felt like I had an ace in the hole—someone I could talk to off the record and on the side if I needed help cutting through the medical jargon and hospital legalese.

  By now, I was fully aware Dr. Martin wasn’t just a random doctor who had responded to the page from the Sibley nurses yesterday afternoon. He was chief of cardiology at Children’s and codirector of Children’s Heart Institute, and by the way everyone on the floor was treating him I could clearly see he was the man. With his calm demeanor and very caring tone, as Dr. Martin began to speak I felt a tinge of guilt for spending so much time checking him out on the Web and with my investigative team of D.C. friends.