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

  Although Paulie’s little body was growing stronger every day, the amount of oxygen getting to his blood was declining. The doctors warned us this would happen. But still, our hearts jumped every time we heard one of those scary close-to-the-danger-zone alarms coming from his monitor and the nurses had to make a mad dash to his bedside to check things out.

  Also, by midweek, the doctors determined Paulie was working his fragile heart way too hard when he sucked milk from the baby bottle. Just a few days before his surgery, they decided it would be much safer to insert a feeding tube into his nose and run it directly to his stomach. Amy and I were a little traumatized by the change in the way Paulie was being fed, not to mention the fact that he had yet another tube going into his little body. But in a world where traumas were starting to stack on top of each other like bricks in a LEGOLAND skyscraper, we deferred to the doctors, knowing they were on top of the situation and aware of what Paulie needed.

  One more day till surgery—one more day.

  It was difficult to comprehend everything that had transpired over the past two weeks. Even though we believed Paulie was exactly where he needed to be hospitalwise and was receiving amazing care, the more we thought about the specifics of the operation, the more anxious we got.

  The surgery, we were told, would last anywhere from four to eight hours. We were also told Paulie’s heart would be completely stopped, and he would be kept alive during the surgery by a heart-lung machine. The idea that Paulie would be kept alive by a machine while a surgeon cut on his walnut-size heart and arteries no bigger than fishing line—well, let’s just say it focuses the mind.

  As tough as the past two weeks had been on the entire family, if things went our way during the surgery, Amy and I were hopeful that after a week or two recovering in the hospital we might be able to take Paulie home. We counted our blessings knowing that was a very real possibility. Unfortunately, that was not the case for many of the families we met at Children’s that week.

  Our new friend Maggie and her family had been living this kind of drama not for two weeks like us, or even two months. They had been doing this for nine straight months. They had been on pins and needles for months in the CICU waiting room hoping and praying that Maggie’s long string of surgeries would soon end and they would finally be able to take her home.

  Whenever I had the opportunity to talk with Maggie’s parents, I was always impressed by their forbearance, stamina, and pure love for their little girl. I knew what Amy and I were feeling about Paulie’s upcoming surgery—hopefully his last. I couldn’t imagine what Maggie’s parents had been going through over the past nine months. Watching them day after day in the CICU and around the hospital, I truly believed the only way they could possibly be getting through this ordeal was by the grace of God. I decided that if God’s grace and sustenance had carried Maggie’s parents through nine surgeries in nine months, surely the Lord must have enough of a supply to take care of the Baier family for one more day.

  We knew the overriding question about Paulie’s surgery was whether Dr. Jonas would be able to perform a complete, one-time fix, or whether Paulie would need additional surgeries down the road. The unknown had to do with whether there was enough room in Paulie’s chest cavity to do a “patch” using his own arteries, or whether Dr. Jonas would have to sew in a connector called a homograph—essentially, a temporary work-around that would need to be replaced within a few years.

  The connector—a donated aorta from another newborn—would eventually need to be replaced because it wouldn’t be able to grow along with the rest of Paulie’s body. In fact, if Dr. Jonas had to go the route of using a donated aorta, we were probably looking at three to four additional open-heart surgeries throughout Paulie’s childhood. We, of course, were hoping and praying for the one-time fix, but we really had no idea how realistic that scenario was.

  Despite the anxiety Amy and I felt as the final hours clicked down, we were both pretty excited about finally being able to meet Dr. Jonas in person. By now we were convinced that not only was he the man who was going to save our son’s life, he was going to give Paulie a decent shot at a future. Back in town after being away for two weeks, Dr. Jonas was backed up with surgeries from the minute he walked in the door. Wednesday, one day before the surgery, was the first real opportunity we had to sit down with him and discuss specifics about Paulie’s heart.

  We were told Dr. Jonas had been fully briefed on Paulie’s case while he was overseas via e-mail communication with members of Children’s cardiology team. Knowing the extreme complexities of Paulie’s heart, Dr. Jonas wanted a few extra days after he got back so he could consult with the echocardiographers and determine the best way to approach the surgery before he sat down and talked to us about specifics.

  Getting on Dr. Jonas’s schedule, for babies or parents, is a bit of a tricky proposition. Because he is one of the best pediatric heart surgeons in the world, parents from all over the globe bring their babies and young children to him year-round so he can work his miracles on their deformed or wrongly wired hearts. Families from the Middle East, Europe, Asia, and of course all over the United States regularly travel to Children’s National Medical Center specifically because it is where Dr. Jonas and his team are based.

  Performing approximately 350 highly complex heart surgeries each year, Dr. Jonas often does two, sometimes three surgeries a day, including heart transplants. With international travel schedules, family accommodations required, and the intricacies of transporting sick babies with very fragile hearts, many of those surgeries need to be scheduled months in advance so the myriad of logistical details can be worked out.

  However, despite his always-packed surgery calendar, Children’s, thankfully, builds in open spaces on Dr. Jonas’s schedule so newborns like Paulie can undergo emergency procedures without totally disrupting the plans of all those other families who are continually cycling in for their children’s long-scheduled operations.

  Given his hectic, nonstop schedule, Amy and I didn’t expect to have more than a few minutes with Dr. Jonas. As he had already performed two surgeries that day, one in the morning and one in the afternoon, our meeting was scheduled to take place in his office after he was done operating for the day.

  Since Paulie had five separate complex congenital issues, Dr. Jonas needed to meet with us to go over the details of not only how he was going to approach the overall operation but also how he planned to sequence the various procedures he needed to perform. We had been forewarned that he also needed to talk to us about the risks associated with performing surgery on such a small structure as Paulie’s heart, not to mention the complexities created by a heart with multiple abnormalities.

  Because of his stellar reputation, all the stories we had heard, and the long buildup to finally meeting him, Amy and I half expected to find ourselves walking down a long, ornate Wizard of Oz hallway leading to a massive space-age–looking office with a floor-to-ceiling video wall, three-dimensional holographic heart models floating in the air, and a clear glass tube transporter reserved for superhero surgeons who need to appear in the OR at a moment’s notice.

  In reality, once we arrived at Dr. Jonas’s fairly normal-looking and normal-size office, we were escorted to a nondescript conference room nearby with a table, eight chairs, and a white erasable board with green drawings on it. No high-tech monitors. No holographic heart models. No funky high-speed transporter. Just two very nervous parents sitting at a conference table looking at a white erasable board with green drawings that made no sense at all.

  Entering the room, Dr. Jonas smiled and asked, “How are you both holding up?”

  Dr. Jonas was tan, fit, and had a distinguished head of silvery gray hair and a hybrid Australian/Boston accent, with maybe a little something else thrown in just to confuse people. More Australian than Bostonian, I decided, but he definitely had a northeast cadence when he spoke, I thought. Soft-spoken and calm, Dr. Jonas didn’t seem rushed in the least. His demeanor was disa
rmingly engaging and pleasant.

  Having been with him for less than ninety seconds, I started to understand how this Miracle Surgeon who performed some of the world’s most complicated surgeries wound up on everyone’s Best lists. Dr. Jonas exudes an easy, informal, approachable confidence with zero drama. In talking with him, I quickly got the impression he had Paulie’s heart figured out and couldn’t wait to get in there to see it and fix it. Although he didn’t say these exact words, everything about his demeanor and spirit calmly and quietly whispered, “No worries, mate.”

  With two complicated, lifesaving surgeries already checked off on his to-do list that day, if someone had poked their head into the conference room to tell him he had to do two more, including a transplant, I got the idea Dr. Jonas would have smiled and said, “No problem. Be right there.” Dr. Jonas has a unique calming quality that is extraordinary, given not only his line of work but also the fact that he must often sit across conference tables from totally stressed-out parents worried sick about their children. Within two or three minutes, Amy and I were completely at ease, and a huge load had been lifted from our shoulders.

  We obviously knew open-heart surgery on a baby is not a walk in the park for the baby or the surgeon, superhero or not. The more Dr. Jonas spoke, I got the sense that, as complex as Paulie’s case was, everything was under control and he would get the job done despite any challenges that might present themselves once he started operating.

  Drawing a picture of Paulie’s heart on a piece of paper, Dr. Jonas explained that he had met with the rest of the cardiac team and had mapped out the broad strokes of how he was going to proceed. He said he wouldn’t have the complete picture until he actually got in there and saw for himself. The night before he performs surgery, Dr. Jonas said he typically spends the evening drawing out exactly what he is going to do the next day, then runs that scenario over and over in his mind as if he were watching a movie. His mind continues rehearsing the operation all night long while he is literally sleeping on it, he said.

  Getting to the key question of the one-time fix, Dr. Jonas told us he would not have an answer until he got in there and saw how much room there was in Paulie’s chest cavity. Even though the pictures from the echocardiogram team were 100 percent accurate, Dr. Jonas said they were still only two-dimensional, and the one-time-fix comes down to a matter of millimeters one way or the other.

  Perfect in his presentation and demeanor, Dr. Jonas exuded hope and confidence. Unfortunately, as we expected, he soon segued into the obligatory talk about legalities and percentages regarding what could go wrong during the operation. I just as quickly segued into a dual case of lump in throat and pit in stomach disease. I could see Amy was similarly afflicted.

  Dr. Jonas explained that, though rare, there was a chance Paulie’s heart would not start again once he came off the heart-lung machine. He said there was also a chance Paulie could develop excessive bleeding during the surgery or possibly pick up an infection, both of which could prove to be fatal.

  Each one of the fatality scenarios Dr. Jonas mentioned had a specific percentage attached to it. And while most of the percentages didn’t rise above a 1 or 2 percent risk factor, to my mind there seemed to be about five hundred separate things that could possibly go wrong. My English and Political Science major’s mind was working overtime trying to keep up with all the math. But being somewhat of a big-picture guy and someone who is always looking to simplify and sum up, I finally settled on the idea that even with all the risk factors associated with such a complicated operation, without surgery Paulie had zero chance for survival. Focusing on that part of the equation trumped most of the fears I had about any of the what-could-go-wrong percentages.

  After finishing the obligatory risks and percentages part of the consultation, Dr. Jonas, still with his calm Australian demeanor, smiled and softly said, “Look. I don’t believe any of those things are going to happen. Make no mistake about it, this is a very complex case, and I can’t tell you exactly how I am going to do everything until I get in there. But if all goes the way I think it will, Paulie will be on the road to recovery tomorrow afternoon with a fixed and working heart.”

  That’s all I needed to hear. I immediately signed the consent forms, stood up, and shook Dr. Jonas’s hand—very softly. In tears, Amy gave Dr. Jonas a big hug. I thought, “Honey, don’t squeeze him too hard. And please watch out for those hands!” It was a very emotional moment for both of us. Seriously, if Paulie got through this surgery and Dr. Jonas was successful in putting him on the road to recovery, I would come back and give him a big Baier hug of my own.

  Immediately after we met with Dr. Jonas, Amy and I walked back to the CICU to check on Paulie. Before long, I slipped out to my communications command post in the waiting room so I could update all our prayer warriors about the big day tomorrow and make sure everyone knew we needed them suited up and on the field by 7:30 a.m.

  July 11, 2007, 6:34 PM, Wednesday

  Subject: A patient little patient

  Thank you all for your continued e-mails of encouragement, your thoughts, and your prayers. We’re finally about to embark on the scariest part of this journey so far—the surgery itself and then the recovery. Our little Paul (who is now 12 days old) is scheduled to go into surgery early Thursday morning.

  Right now, the surgeons believe they will be able to try what is called a complete repair, which would mean only one surgery. Obviously, there are a number of things that could change once the surgery begins, but one surgery fixing the defects and blockages in and around his heart is what we have been hoping and praying for so we can start our little guy on the road to recovery.

  Paul’s been a little fighter from the beginning, and it has been a real blessing to be able to hold him and show him love in these days ahead of surgery. While he’s managed to grow and to get stronger, Amy had to stop breast-feeding him and then had to stop feeding him by the bottle since it was producing too much stress for his heart, which happens to be working extra hard to pump blood to and from the lungs in the WRONG way. It’s amazing that his body taught itself to adapt to his defects that quickly. So Paul has been on a feeding tube for the past few days. He’s still getting Mom’s breast milk, but it’s being fed into his stomach every four hours.

  We’ve spent 12 to 15-hour days at Children’s National Medical Center in D.C. in the Cardiac Intensive Care Unit. The doctors and nurses are top notch, extremely impressive and extremely caring. Every patient is “one of their children.” We could not be in better hands. When we are not at the hospital, we have backup. What we have come to call the Grandma Brigade has reported for duty. We call Grandma Baier and Grandma Hills a brigade because that sounds more official. They have been holding Paul, singing to him, telling him stories, and showering him with affection. We’ve also had uncles and aunts streaming in as well. Every day ends with me turning to Amy and giving her a high five, saying, “We’re one day closer to getting Paulie home!”

  This is the final update e-mail I will send prior to surgery. I don’t mean to bombard you with e-mails, but a number of you have asked for more updates, so I thought I would send another. This one comes with one more request to please keep Paul in your thoughts and prayers—especially early Thursday morning. Depending on how everything goes, the surgery could take anywhere from four to eight hours. We’re told the next 48 to 72 hours after surgery are critical and will determine how his body is reacting to the procedure. Hopefully, by next week we’ll have some good news to share.

  Paul is the best thing that has ever happened to us. And we can’t wait to get him home!

  Thank you again for your support.

  Bret and Amy

  * * *

  Not much sleep during the night. Amy and I awoke at about 5:00 a.m. and decided to head into the hospital early. Dr. Jonas told us the anesthesiology team would come around 7:30 a.m., and his part would begin about an hour later, after Paulie was fully anesthetized and properly positioned on the operating
table. The rest of the Baier-Hills family was going to be at Children’s during the surgery, and later in the morning Father Kevin O’Brien from our local parish was going to come in and hold a prayer service for us in the hospital chapel.

  Arriving at Paulie’s bedside in the CICU around 6:30 a.m., before long the anesthesiologist, Dr. Songyos Valairucha—Dr. V, as everyone called him—came in and introduced himself. An extremely affable guy, I’m sure Dr. V could see we were stressed beyond belief. He, like Dr. Jonas, had a very calm demeanor and was very pleasant and reassuring. Dr. V explained exactly what was going to happen to Paulie to get him ready for the surgery.

  Like Dr. Jonas, Dr. Valairucha had his own list of things that could go wrong: might slip into a coma and not wake up, could stop breathing during surgery and die, could suffer lasting brain damage, could have negative reaction to anesthesia, or any number of other fine-print complications.

  As with Dr. Jonas, after we had been given all the information about the risks associated with putting Paulie under for such a long and complicated surgery, we had to sign another round of consent forms. Lots of scary scenarios raced through my mind. Thankfully, I was constantly returning to my self-styled mantra: the biggest risk for Paulie is to not take a risk and deny him the chance to get beyond all this.

  As they prepared to take Paulie away, I could see that Amy was tensing up. I turned to her and said, “Time to turn him over now—to the doctors and to the big Guy upstairs.” Amy nodded. Dr. V said he would take good care of Paulie. And he repeated what everyone had been telling us all week: “Paulie will be in good hands. Dr. Jonas is great!”