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

  Thus, Children’s Hospital of the District of Columbia was incorporated on December 5, 1870, operating out of a rented row house not far from where the Metro Center train station now stands. With the ongoing mission to help children in need, Children’s arrived at its current location on Michigan Avenue in northwest Washington in 1977.

  One thing you notice when you enter the hospital for the first time is how bright and colorful the place is. The front desk is in a natural-light atrium area with several multicolored hot air balloons hanging aloft and suggesting complete freedom and dream-filled flight. After several days there, I have to admit I had more than one whimsical thought that one of those balloons might be untethered for Amy, Paulie, and me so we could fly away to our own problem-free Emerald City, wherever those places are hiding.

  Another thing you notice about Children’s is the amazing range of socioeconomic, ethnic, and cultural, diversity represented. Regardless of political or religious inclinations, world views, or any of the other categories that typically divide us, the bridge-building, unifying dialogue of the realm at Children’s is simply and purely what’s going on with your child and what’s the plan for getting them well.

  Since Amy was always by Paulie’s side, I spent a lot more time than she did wandering the halls of Children’s and camping in the small waiting room just outside the doors to the CICU. I had the wonderful opportunity to meet many other parents pulling the same kind of hallway-waiting room duty I was: waiting for surgeries, consulting with doctors, sharing background stories, exchanging heartfelt words of encouragement, laughing together, sometimes crying together, and always—always—talking about the day we would finally be able to get out of there.

  On a fairly regular basis I had the opportunity to talk with a couple whose daughter, Maggie, had been in and out of Children’s over the better part of the past year. Now nine months old, Maggie had been through a staggering nine separate surgeries since she was born. By the way her parents talked about her, you just knew Maggie had some serious spunk.

  Whenever Amy would leave Paulie’s bedside to go to the private room where she would breast pump, she would walk right by Maggie’s bed and smile at her.

  It was heartbreaking to see other parents during our time at Children’s doing their best to be with their child as much as possible, but who because of jobs or distance couldn’t be there as much as they wanted. It forced me to count my blessings that I had a job with extremely supportive bosses, plenty of family members to help us, and lived less than five miles away.

  Dr. Richard Jonas was scheduled to return to D.C. on Monday, July 9, and Dr. Martin thought Paulie’s surgery would probably be scheduled a few days after that—probably Thursday, July 12. I knew the PGE1 Paulie was on was essential for sustaining him till his surgery, but I couldn’t get out of my mind the possibility that too much of the drug, over an extended period of time, could cause him to stop breathing.

  Assuming Paulie’s numbers didn’t drop into the danger zone, we were told that upon his return Dr. Jonas would be performing several easier surgeries before he got to Paulie’s. First hearing this, I was a little confused, but eventually it made complete sense. Because Paulie’s case was extremely complex, and given the fact that Dr. Jonas does two, sometimes three, highly complicated surgeries every day, he wanted the extra time to think through the best approach to take with Paulie.

  Once back in town, Dr. Jonas needed two to three days to prepare by looking at various images of Paulie’s heart, meeting with the sonographers, and consulting with the team of cardiologists who had been putting their heads together on the particular nuances and intricacies of Paulie’s case.

  The remainder of the week waiting for Dr. Jonas to return was a blur of activity as we performed all the rituals of going to Children’s every day. Starbucks run in the morning, relieving the early morning shift of the Grandma Brigade, Amy breast-pumping every four hours, breaks for food in the hospital cafeteria, checking Paulie’s monitor numbers, interacting with nurses and doctors, triple-checking Dr. Jonas’s schedule, late night trips home to Georgetown, Amy breast-pumping at the condo, middle-of-the-night phone calls to Children’s to check in with the overnight nursing shift, waking up, then repeating the process with our morning stop at Starbucks.

  During our drive every morning from our condo to Children’s, I would typically make a left turn on 16th Street not too far from the White House. Whenever I made that turn I would see the reflection of the White House in my rearview mirror. To be perfectly honest, I didn’t know if I should take that as a cruel reminder of how our lives had been completely turned upside down or a sign of hope that one day soon some normalcy might return and I could get back to work. In either case, given the seriousness of Paulie’s day-to-day battle and the upcoming surgery, every day when I made that turn I had my daily reality check that there are things much more important in this life than money in the bank account, careers, status, or where you happen to work.

  Every time we told folks at Children’s we were waiting for Dr. Jonas to return to perform Paulie’s open-heart surgery, their eyes always opened big and wide and they would brighten up as if you had just told them the Messiah was returning. It was eerie; no one had anything bad to say about the guy. By the reverence everyone showed when we spoke about him, when Dr. Jonas finally did return to town I half expected him to enter the city limits by walking across the Potomac.

  As nervous as we were approaching Paulie’s operation, with each day Amy and I also got more and more excited about finally being able to meet the man we were now convinced would be saving our son’s life. Personally, I didn’t care if Dr. Jonas walked across the Potomac, parachuted in with the Golden Knights, or got the one-dollar Bolt bus special out of New York City, as long as he got here soon.

  Friday, July 6, was a big day for us at Children’s: Paulie’s one-week birthday. Amy and I were extremely grateful to God for giving us our son and keeping him strong for the week. We were also incredibly thankful to our family and friends for their support through some very difficult days.

  July 6, 2007, 10:46 AM, Friday

  Subject: A thank-you—and an update

  First of all—thank you for all of your support and all of your prayers. We have really been uplifted knowing that so many people have been thinking about or praying for us. Here’s the update: Paul’s surgery is now tentatively set for Thursday morning, the 12th.

  One reason it has been pushed back is because he has been doing very well and is gaining strength—he’s stable, he’s eating, and we are holding him about as much as any baby can be held. The other reason is to give arguably the best surgeon in the world for this type of surgery, Dr. Richard Jonas, time to analyze things after being out of the country for 10 days.

  We feel we are in very good hands and feel very fortunate that we are able to hold Paul, talk to him, read to him, feed him, and show him love during this time. (When he’s with me, he learns a lot about golf.)

  Paul has a combination of things wrong with his heart—but the overall diagnosis is called double outlet right ventricle with transposition.

  Basically, that means that the two main arteries going to and coming from the heart are in only one side of his heart (the right side) AND in addition to that they are doing the wrong jobs. They’re switched, taking blood to the body or taking blood to the lungs. One of the arteries is bigger than the other because it was being used more, which also creates a problem. Also, he has a hole in his heart (which is how he’s moved blood around now)—as well as a blockage in his aorta that brings blood to his legs.

  It sounds overwhelming—I know—but Dr. Jonas has seen similar cases, and while it’s very complex, he has successfully completed this surgery before. Many families with children who have been through complex heart surgeries have emailed or called us to show us that more and more success stories are happening every day with how far this surgery has come.

  So we’re optimistic.

  While we feel ama
zingly blessed to be able to spend this time with Paul, it’s also been very tough to wait for surgery. As you can imagine, we have good days and bad days—the emotional roller-coaster is on a constant loop. But as the days go by we feel stronger (in large part because of the support from all of you!). Family members from all over the country have been coming in to meet Paul and help out. So we’re hanging in there.

  Paul was baptized in the hospital this week. Almost all of our family was there for an emotional ceremony in the Cardiac Intensive Care Unit. We know the week ahead is going to be very challenging—so we welcome any thoughts or prayers as we head into surgery on Thursday. We really have been comforted by them this past week.

  As a new father and a husband, I never knew that I could feel this much love for our little baby who is now going through so much so soon—and for my wife, who is showing amazing strength just days after giving birth.

  At 12:34 p.m. today, Paul will be one week old.

  Today, we are one day closer to bringing him home to us—and that’s how we have been approaching each day. We feel very blessed to have Paulie with us to begin with, and one day we’ll look at the scar on his chest and consider it the most beautiful thing in the world.

  Thank you again for your support.

  Bret and Amy

  As I hit the send button on the mail, I was thinking, hoping, and praying that next Friday I would be sending another message telling everyone Paulie had come through his open-heart operation with flying colors.

  “The assurance of things hoped for,” I thought. “The conviction of things unseen.”

  Chapter Seven

  Special Hands

  “Bret, this is President George Bush calling. I know you and Amy are standing by Paul’s side as you prepare for his surgery tomorrow. And I just wanted to let you know that I am praying that all goes well. Hang in there, buddy. Put your faith in the doctors, and I know you’ll put your faith in God.”

  I couldn’t believe I had just missed a personal phone call from the president of the United States and let it go directly to voice mail. Of course, I didn’t know it was the president calling when I decided not to take the call. Looking down at my phone, I knew it was probably an important Washington mover or shaker of one kind or another because all it said was 202, nothing else.

  But let’s face it, there are many important, not to mention self-important, people in D.C. That call could have been from just about anyone in town: a congressional press secretary trying to “clarify” remarks his boss shouldn’t have made in an e-mail that shouldn’t have been sent, or a political consultant wanting his senator client’s name mentioned in every VP short-list story Fox did between now and the 2032 presidential election. You get the picture.

  The exact moment my phone rang Amy and I were standing outside a small coffee shop at Children’s National Medical Center talking with truly one of the most important people in our lives, the head of the cardiology department and codirector of the hospital’s Heart Institute, Dr. Gerard Martin. Dr. Martin and his cardiology team had been taking care of Paulie for the past twelve days in the Children’s Cardiac Intensive Care Unit, and Amy and I couldn’t have been more grateful for their professionalism, spirit, kindness, and way of treating our son as if he were their own.

  So whenever I spotted Dr. Martin anywhere around the hospital and had an opportunity to talk with him face to face, it was a total and complete drop-everything-else code-red priority for me. All other conversations ceased. Sandwiches stopped being eaten. The Blackberry went away. And all incoming phone calls, presidential or otherwise, went directly to voice mail. For the record, if I had known exactly where on Pennsylvania Avenue that particular call originated, hospital VIP or not, I suspect I might have called an audible and amended the Martin Rule just once and taken the call.

  Ironically, even with the approaching operation, Dr. Martin and I were not in a deep discussion about the intricacies of the surgery, overnight monitor readings, or how long Paulie needed to stay in the hospital to recover. Nope. We were talking about—of all things—golf. Cardiology honcho or not, like just about every golfer I have ever known, Dr. Martin was regaling me about his love for and frustration with the sport at the exact same time. Apparently the good doctor was getting off the tee just fine, but his short irons were causing him a bit of a problem.

  It was great to have a lighter moment and not be pummeling Dr. Martin with the normal barrage of congenital heart defect questions I typically hit him with whenever I spotted him anywhere around the hospital, including the restrooms and parking garage.

  Knowing how much I love golf, and in a complete reversal of roles, Dr. Martin was now hitting me up with questions about proper ball position for shorter irons and how to hit a fairway bunker shot without chunking it. In a hopeful glimpse of some future normalcy, he and I were even talking about getting a game together on his home course after Paulie had recovered and was settled in back home.

  Apart from lighting up when she heard the words “Paulie,” “recovered,” “settled,” and “home” in the same sentence, it would be safe to say Amy was not into that coffee shop consultation as much as Dr. Martin and I were. Stressed out hospital mom or not—and perhaps with her own attempt at some blessed normalcy—Amy made no pretense about her complete disinterest in the entire conversation.

  It was a rare and much needed bit of stress-relieving hallway levity with the man to whom Amy and I were so indebted. But the fact remained: I had just missed a call from the president of the United States, the number-one newsmaker on the planet, commander in chief, and the guy I happened to get paid to cover. I knew White House press secretary Tony Snow or his number two, Dana Perino, probably made that call happen, so I made a mental note to thank them the next time I received an e-mail with their daily request for a Paulie update.

  Having never before received a phone call from the president of the United States, I was pretty clueless about the proper protocol for returning said call. I was fairly certain I probably couldn’t simply call the White House operators back and say, “Hey, guys. Sorry I missed the president. I was talking to a really important doctor friend of mine about chunking his short irons. I’m sure the president wanted me to call him right back. Can you put me through to the Oval Office?”

  To keep it somewhat in perspective, Amy and I had been conversing pretty much hourly with a much higher authority figure over the past twelve days. A conversation with the president—in the grand scheme of things—might not be that big a deal. But Democrat, Republican, or Independent, the president of the United States is still considered the leader of the free world, after all.

  On second thought, missing the president’s call might have been a complete blessing in disguise. Despite Amy’s dialed-in and in-the-zone single-minded devotion to tending to her son, she would certainly be grateful to add another name, presidential or otherwise, to the growing list of people who were praying for Paulie. And as long as my thick fingers could stay away from the delete button on my phone, I had all the physical proof I needed and wouldn’t have to spend the rest of the night trying to convince Amy I didn’t make the whole thing up.

  Apart from having ample forensic evidence in the court of Amy, I was glad to have the president’s words on tape for a different reason altogether. I had a vision of one day being able to play that message for Paulie when he was older and he might understand what all the fuss was about. Perhaps a bit of a fanciful dream, but one day when all this hospital drama had faded into distant memory, maybe I could use the audio on that tape as part of a This Is Your Life rehearsal dinner video at Paulie’s wedding somewhere around the year 2037.

  Maybe Paulie would one day have the opportunity to play the message for his own son or daughter and tell him or her about that time long ago when he had to spend a few days in the hospital for some long-forgotten medical procedure. Nice thoughts, but maybe I was getting a little ahead of myself.

  It was not 2037. It was Wednesday, July 11, 2007—j
ust one day before twelve-day-old Paulie would be going into the operating room for open-heart surgery at the hands of Dr. Richard Jonas. Amy and I would be meeting Dr. Jonas for the first time in about ten minutes. And despite our nervousness about the impending operation, we were both feeling somewhat upbeat as we made our way to his office not far from the CICU.

  Paulie had successfully made it twelve full days, hanging in there long enough for Dr. Jonas to get back into town. “What spunk and fight this kid has!” I thought. Granted, Paulie was receiving top-notch medical care at a great hospital. And all those prayers and good thoughts flooding in from family, friends—even complete strangers—were really making a difference. But deep down, I had the sense Paulie was doing the heaviest lifting of all. Sometimes it was impossible not to tear up as I looked at him lying there in that hospital bed, knowing the intense life-and-death battle he was waging. I prayed for the day when I would be able to talk to him, father to son, and let him know how proud I was of him and his fighting spirit.

  Amy and I were upbeat about reaching day number twelve for a very practical reason, too. Less than fifteen hours before the operation, even if Paulie took an unexpected turn for the worse in the coming overnight hours, Dr. Jonas was at least back in town and could jump into the OR and do the surgery if he had to. Sure, it might still be a scary, middle-of-the-night drama for all concerned, but the operation could be performed at Children’s and wouldn’t involve a 3:00 a.m. helicopter flight to Philadelphia, Boston, or anywhere else.

  Despite all the worst-case scenarios my mind was constantly mulling over, Amy and I had great expectation and hope that with tomorrow’s surgery we were going to take a giant leap forward in our goal to finally be able to take Paulie home. Unfortunately, our expectation and hope was constantly being tested and roped back in by the daily reminders that Paulie was still an intensive care patient with a very long way to go.