Special Heart: A Journey of Faith, Hope, Courage and Love Page 18
“Why are you still at the hospital?” I immediately asked.
“Don’t get scared,” Amy said, which, of course, instantly scared me to death.
“Paulie has to have surgery tomorrow,” Amy said.
“What!!?”
“Don’t get mad,” Amy said, “but Paulie has to have surgery on his stomach.”
I was completely dumbfounded by what I was hearing.
“We just can’t have surgery every other day,” I blurted out. “We were just in the hospital for twenty-one days. Surgery is not the answer for everything,” I yelled into the phone. My mind was racing. “This makes no sense at all! Paulie has heart issues—he doesn’t need surgery on his stomach! He’s just having a little trouble keeping his food down, for God’s sake. Those people at Children’s need to take a chill pill. The surgeons over there must walk around with scalpels in their holsters like gunslingers itching for a fight in the old west, just looking for people to operate on!”
Knowing I was in final preparations for Special Report, Amy tried to stay as calm as possible and keep me from going completely nuts, which, of course, I absolutely was. Wisely, she put Dr. Kurt Newman on the phone to fill me in on what was going on with Paulie’s stomach. Totally unrelated to his heart issues, Paulie had something Dr. Newman called a “pyloric stenosis” that could only be dealt with surgically. Paulie’s stomach was sort of kinked up with a spasm, which explained the projectiles speeding toward us like we were facing Roger Federer at the U.S. Open. Sitting at my desk in the Fox bureau, my eyes shot skyward as I muttered to no one in particular, “Can’t we just catch some kind of break here?”
I immediately asked Dr. Newman how the stomach surgery was going to affect Paulie’s heart. He assured me this was a completely separate issue and a quite common surgery that shouldn’t pose a problem for Paulie’s recovery from his open-heart operation. After I settled down a bit, I was thankful once again that they had diagnosed Paulie’s stomach issue there in the hospital and we wouldn’t be racing through the streets of D.C. headed to the ER in the middle of the night.
Dr. Newman said Paulie needed to stay overnight at Children’s, and the operation would be performed as soon as tomorrow. Just a few days in recovery, then he would be home, he promised. I considered asking Dr. Newman if he would put that in writing, but I didn’t want him to get the idea I was an erratic and crazed parent desperately at the end of my rope.
As it happened, Amy’s mom was in town, and suddenly it was like old home week at Children’s for the Baier family. All the same nurses were there, and they immediately sprang into action getting Amy diapers for Paulie and the breast pump all set up for her. Same intensive care unit. Same anesthesiologist. Hugs. Greetings. The Baiers were back! Soon I would be staring at those monitors, those same monitors at all hours of the night, I just knew it.
There is no way I could possibly increase the number of prayers I was already lofting heavenward for Paulie on a daily basis. The only thing I could figure was that I must have been slacking off in the wood-knocking department.
* * *
With one open-heart surgery, one stomach surgery, and one angioplasty behind him, seven-month-old Paulie was now scheduled to have his second angioplasty in late January of 2008. Catheterizations and angioplasties were complicated enough, but they are not as invasive as full-blown open-heart operations. I was not exactly clear what the doctors were doing when they went into Paulie’s arteries, but it had something to do with measuring the pressures in and around his heart.
The only analogy I could think of is when they send those hurricane hunter C-17s directly into a raging storm while it is still over the ocean to get the most accurate barometric pressure and wind speed readings possible so they know exactly what we are up against when hurricane Whoever finally comes ashore. In a sense, the doctors needed to fly directly into Paulie’s artery system to get firsthand, accurate readings so they would know precisely what was going on with his heart and give the doctors a better idea when he would need to have his next open heart-operation.
Seven months to the day he was born, Paulie was back at Children’s National Medical Center.
January 31, 2008, 5:41 PM, Friday
Subject: Paul’s prognosis
All of you asked for a report on what the doctor did today and what lies ahead for Paul. So here it is.
Today, Dr. Michael Slack went into Paulie’s heart with a catheter (through his femoral artery in his groin) and measured all of the pressures in various spots inside his heart and in the arteries around it, including the aorta, which was the focus of the last catheterization when Dr. Slack ballooned that to open it up in December.
Dr. Slack found that the aortic arch, which had closed significantly before, was almost as open as it was when he did the last balloon, meaning that the aorta held its shape and didn’t get smaller. Translation: the last angioplasty/balloon worked.
Paul’s pulmonary artery, however, has narrowed. It was narrow to begin with, and because of some scarring from the original surgery, it was even narrower today. That, added to the fact that the connector, also known as a homograph (the donor baby aorta that was used to connect Paul’s right ventricle to his pulmonary artery) is small to begin with. It was put in small so that it could fit behind tiny baby Paul’s chest—but now 19.5 lb. Paulie has a lot more room and a lot more blood pumping through his bigger body.
The original connector also had some scarring around it and therefore is narrowed at the T. Imagine a T intersection. The pulmonary artery is the street running east to west and the connector, or homograph, is the street running north to south that Ts into the pulmonary artery. Now imagine that the streets are all supposed to be two-lane streets but in Paul’s case—at that intersection—they squeeze to one lane, and even half of a lane. Cars (the blood) have a hard time getting through.
Okay, there’s one analogy. Hang with me here. Because there is a traffic jam at that intersection, the right ventricle of the heart has to work extra hard to pump the blood through that area to get it to the pulmonary artery and then out to the lungs for oxygen. Dr. Slack says the energy the right ventricle uses is like expending energy to suck a milk shake through a coffee straw—it takes a lot. But in the heart’s case, turn it around; the heart is pushing the blood milk shake through the coffee straw—which is Paul’s connector.
The normal pressure in the right ventricle should be at about 25–28% of the left ventricle. That’s normal. Paul’s was measured today at 115%. That’s bad. It means his right ventricle is working super hard and if left like that for an extended period of time it would fail.
Today, with the ballooning that Dr. Slack did (putting balloons in various arteries and even in the homograph and pumping them up to push back scar tissue and to widen the areas as much as possible), the pressure dropped to 60% in the right ventricle. Much better. But it won’t last long. As Paulie continues to grow, he will need a new connector—a four-lane street instead of a one- or two-lane street—into that T intersection (or a big McDonalds straw instead of the coffee straw, if you like that analogy better) to get that blood moving and to reduce the pressure in his right ventricle and on his heart overall.
In addition to that, today’s catheterization found something else: what’s called a pseudo aneurysm in his pulmonary artery. This happened because the pressure built up in his right ventricle—to pump that blood through the small space—then the lining of the pulmonary artery where the connector is attached (sewn in there by Dr. Jonas in the original surgery) became weak. And a bubble formed, bulging out of the artery itself like you would see with an inner tube that doesn’t hold its shape.
Now—there is NOT a realistic risk that the aneurysm will rupture. BUT it needs to be dealt with fairly soon in another surgery, the same surgery where the new connector will be sewn in. (In addition to the new connector, now Dr. Jonas will have to fix the aneurysm by repairing that part of the pulmonary artery.)
Watching the pressure will det
ermine when Paul needs to get the next surgery done. They want to wait as long as they can so that he can continue to grow and they can put the biggest possible connector in there. Ideally, they want to put in something that will take Paul to his early teenage years before he’d have to get an adult one put in.
So when the pressure reaches 100%, it’s time. Again, today it’s 60%. That could happen in one month. It could happen in five months. But it’s gonna happen before he’s one year old. And they’ll be able to monitor the pressure through the echocardiograms that Paulie has done at the cardiologist’s every week or two now.
The good part: he’s growing and he’s thriving, both cognitively and in all growth percentiles. Also good, that we’re in great hands at Children’s. Dr. Slack is really one of the best in his field of catheterizations. Also good. One could argue that it’s better to get this done while Paulie’s very young so that he doesn’t remember it when he has to do it when he’s 13 or 14.
The tough part: it’s been a string of tough things to have to go through with Paul early on in life. Nothing was tougher than the first surgery. The thought of having to go through another open-heart surgery with a little boy who knows his mom and dad and smiles all the time and who you hate to see upset in any way, shape, or form—and who has been through so much already—makes us sick to our stomachs, literally. But it’s what we have to do. And one day, we’ll look back on this time as a flash. But right now it seems very unfair. It will be very difficult—extremely—because, to be honest with you, this catheterization today was not easy. It is, however, the hand we’ve been dealt, and we think the guy upstairs has us covered.
That’s the long and the short of it. Doctors say that if all goes well, Paulie can live a long and almost completely normal life (minus the occasional cardiologist appointment). So—once we get through the next big surgery (in one to five months) there will likely be a few more catheterization lab appointments. But the idea is to get the catheterizations to about one every five years. And then ideally we’d have only one more surgery after that when he’s 13 or so.
That’s where we are. Thanks for all the support and love and prayers.
Love you all,
Bret and Amy
* * *
When he was almost eight months old, and with his rookie year stat sheet now filled up with two angioplasties, two surgeries, and another heart surgery scheduled in a few short months, Amy and I were completely amazed at how resilient—even strong—Paulie seemed to be. As inspiring as his resilience and warrior strength were to everyone who came in contact with him, that was also part of his problem.
Paulie was growing so fast, the donated aorta he had in his body couldn’t grow along with the rest of him. He would need the second heart operation so he could get a new homograph put in to keep up with his growing body. There are hopes that one day replacing those connectors might be done by going through the arteries just like an angioplasty, but for now, surgery through the chest wall is the only way the replacement can take place.
Watching Paulie through the winter months of 2007 and into 2008, I was amazed at everything he had endured before he ever reached his first birthday. At eight months old, our little fighter had certainly experienced enough trauma and excitement for a lifetime. If we could just get Paulie through the next heart surgery and to his first birthday and then to the place where we could have a solid four- to five-year stretch of catheterizations and angioplasties and no surgeries for a while, you would probably find me doing cartwheels out on the National Mall all the way from the Washington Monument to the Capitol.
* * *
“Sometimes the end comes like a thief in the night.”
Those words came from Sam Donaldson, and unfortunately, Sam was not unleashing a snarky metaphor at the president in the Rose Garden about a failed nomination or doomed piece of legislation on Capitol Hill. Sam was solemnly quoting from the Bible as his voice echoed throughout the auditorium of the Newseum just a few blocks from the United States Capitol.
Sam was onstage delivering one of many tributes to our friend and colleague John McWethy. One week earlier, Jack, just sixty years old, had died in a skiing accident in Colorado where he had recently retired with his wife, Laurie. I, along with everyone else gathered to pay respects, was extremely sad about the loss of our beloved colleague and friend who had been such a huge influence on so many of us in and out of the news business.
I had so many great memories of Jack: working as competitors side by side at the Pentagon, taking trips together to Afghanistan and Iraq, and, of course, our mutual love of golf. As I sat in that memorial service and heard all those tributes for my friend, my mind was racing with thoughts about life and death, the fragile line dividing the two, the brevity of it all, and being someone like Jack who made a real difference in this world, not only through the words he spoke but by the way he lived his life.
CBS News national security correspondent David Martin spoke about the day Jack retired and how he felt like the guy in the Paul Simon song who asks, “Who will be my role model now that my role model is gone?” That’s exactly how I felt. Jack not only set the standard for being a dogged, fearless reporter, he did it with integrity, class, and great humor. But beyond that, Jack figured out how to compete at the highest levels of the nation’s journalistic stage without becoming mean-spirited or taking shortcuts, all the while keeping his family life front and center. That is one serious accomplishment.
After the service I went up to Jack’s wife, Laurie, and told her about the great influence Jack had on me and specifically about the trench-coat sermon he delivered to me on that flight to Iraq just a few years before. When I recounted the story, Laurie said, “That’s exactly how Jack lived his life.”
Sam Donaldson’s quote about the end sometimes coming like a thief in the night really got me thinking. What a great example Jack had been, not only in journalism but in life itself. I wondered if I would ever come close to having the same kind of impact on people’s lives that Jack did. I left the Newseum that day with a new sense of urgency, not about my career in journalism but more fundamentally about the kind of person I wanted to be with whatever time the Lord gave me here on this earth.
Walking along Pennsylvania Avenue after the service and thinking about the example Jack had been for us all, I wondered what kind of example I was for people around me, for my wife and my son—especially for a son who was setting the bar extremely high in the area of courage and inspiration. While my career was firing on all cylinders and Amy was extremely supportive of all the time I was spending on the job, Jack’s trench coat at the door story was reverberating through my mind as I walked. Time is so precious, and unfortunately it can take something like a memorial service or a funeral to wake us up to that fact. I wasn’t wearing a coat that day, but when I got home later that evening I made a special point of hanging my day job up by the door as I walked in. Hugging my wife and son a little harder than normal, I reflected on all the challenges of the past eight months. Taking nothing for granted, I thanked God for every precious moment he had allowed us to share together and for the daily miracle of grace and strength he had given us to carry on.
Chapter Nine
To Whom Much Is Given
For those following presidential politics, 2008 was turning out to be one incredibly interesting news year.
After his campaign implosion the previous summer, then being written off as political roadkill by the pundits and prognosticators, Arizona senator John McCain fought his way to the front of the pack in the race for the GOP nomination. On the other side of the aisle, charismatic first-term senator Barack Obama of Illinois, with record crowds and seemingly bottomless coffers of campaign cash, was completely discombobulating former first lady and New York senator Hillary Clinton’s plans to capture the Democratic nomination. With home mortgages melting down from coast to coast, the financial crisis on Wall Street, and the U.S. economy teetering on the brink, no matter how the presidential race turn
ed out, 2008 promised to be a memorable year for news—one for the record books.
On the nonpresidential front, 2008 was turning out to be quite a memorable year for the Baier family, too. On April 29, Paulie was scheduled to return to Children’s National Medical Center for his second open-heart surgery, ten months to the day he was born. To keep up with Paulie’s growing body, Dr. Richard Jonas needed to go back in so he could swap the baby aorta he put in the previous July for a larger one. Despite all his time in the hospital, medical procedures, surgeries, and the general fragility of his heart and arteries, little Paulie was becoming quite a big boy these days, weighing in at almost twenty-three pounds.
In fact, Paulie’s rapid growth was the reason he needed the second operation so soon. During the previous summer’s first open-heart operation, Paulie’s tiny chest cavity pretty much dictated the size of the original homograph connector Dr. Jonas was able to graft in. Now that Paulie was growing so big so fast, that original connector was starting to leak and needed to be replaced with a larger one. There was, however, an upside to all of Paulie’s rapid growth. With the extra room in his chest cavity, Dr. Jonas might now be able to graft in a larger connector than he had originally anticipated.
Although it was a foregone conclusion that the first homograph would eventually fail and have to come out, without jeopardizing Paulie’s health the doctors wanted to hold off as long as possible before scheduling the surgery so they could put in the largest connector possible and create as much space on the calendar between this surgery and the next.
No matter what size homograph they would be able to fit in Paulie’s chest, there was no doubt he would still need to undergo several catheterizations and angioplasties over the next few years in order to keep his arteries open and flowing. Although angioplasties are not exactly a walk in the park, I would take a hundred of them over one open-heart surgery any day of the week. And by the way things seemed to be going for us, we might just hit that one hundred number before all was said and done.