Special Heart: A Journey of Faith, Hope, Courage and Love Page 16

  We kissed Paulie good-bye. Whispering in his little ear one final time, Amy said, “We’ll see you in a few hours, peanut.” I held Paulie’s little fingers in mine, and Amy kissed him one more time on the forehead. Then the doctors and nurses assisting Dr. Jonas rolled Paulie’s medical bassinet away and down the hall toward the hospital’s Joe Robert Surgical Center.

  A tough moment. Amy and I hugged each other, wiped away a few tears, and then decided to walk to what we now considered to be our own little chapel to pray, not far from the CICU waiting room. Amy and I had spent a lot of time in that chapel over the past twelve days, always seeming to find it empty whenever we needed it most.

  Before we left the CICU, one of the nurses handed me a pager that she said we should keep with us throughout the surgery. She told us we would receive pages at various stages of Paulie’s operation so we could have a sense of where Dr. Jonas was in the procedure in real time. She said we would receive a page when Paulie’s chest was opened, when he was put on the heart-lung machine, when he came off the heart-lung machine, and finally when the surgery was completed.

  Under any other circumstance I am sure I would have been extremely interested in all the gizmos they were using and pages they were planning to send. But being more Dad than reporter at that point, I wasn’t sure I wanted to know that much detail in real time. Moments in time that I interpreted less delicately as when they cut open his chest, when his heart stops beating, when his body is being run by a machine, when his heart starts beating again, and when they stitch him up. After my initial hesitation about taking the pager, I soon found myself looking down and checking it every thirty seconds to make sure it was working properly.

  Amy and I held hands as we made our way to the chapel. Trying to maintain some level of calm, I avoided looking at the clocks on the waiting room wall, knowing any second hand we saw would be marching toward the moment when Dr. Jonas would start cutting open Paulie’s chest. Soon we met up with the rest of the family and Father Kevin for a small service in the chapel. Nothing fancy, but we prayed for Dr. Jonas and his team, for Paulie, and for strength for the entire family. Father Kevin read a few verses from the Bible then gave us a blessing. Based on the e-mails I was receiving, Amy and I took great comfort knowing so many people were praying for Paulie that morning and would continue throughout the entire operation.

  After the chapel service we camped out in the waiting room area with an occasional trip to the cafeteria to get coffee, all the while looking at that hospital pager:

  —Chest opened

  —Now on heart-lung machine

  —Off heart-lung machine

  Minutes turned to hours, and eventually the hospital pager buzzed one final time:

  —Surgery completed—please meet Dr. Jonas in waiting room.

  July 12, 2007, 11:49 PM, Thursday

  Subject: The longest day

  After almost six hours of heart surgery today, our thirteen-day-old son Paul is recovering tonight and doing better than anyone expected him to be doing. Thank you all for your thoughts and prayers—we think they helped a great deal today.

  Paul started his surgery at 8:30 a.m. He then went on a heart-lung machine, which bypassed his own body’s control about an hour and a half later. Shortly after 1:30 p.m., he came off the bypass and was finished with surgery at almost 2:30 p.m.

  This was the longest, most stressful day of our lives.

  Dr. Richard Jonas, Paul’s surgeon—a world-renowned specialist in the field—came out of surgery and took Amy and me to a small conference room outside of the Operating Room. I could hear my heart beating loudly in my eardrums. Amy held her chest—trying to get her heart to stop beating as fast as it was. We didn’t say a word. We knew it would be hard to focus on every detail. But, we had been preparing all day for Dr. Jonas’s first few words to us.

  As Dr. Jonas closed the door of the small conference room, we both held our breath. Time stood still. It was a slow-motion movie as we watched him close the door and sit down at the table in front of us. I will always remember his first two sentences:

  “I believe the surgery went exceptionally well”—a first sentence that triggered a giant exhale from both of us. But that glorious sentence was followed by an ominous one. “This was as long and as complicated as any surgery we’ve done.”

  This from a surgeon who performs more than 350 heart surgeries a year and whose team is shuttled around the world to fix hearts on every continent.

  And the next sentence was equally tough to hear. Dr. Jonas said, “We couldn’t do the one-time fix. There simply wasn’t enough room in there. But Paul did very well.”

  So that means, beyond this fix, there will be more hurdles ahead, but the first real hurdle is the next 48 hours—that’s our real focus now. Paul is far from out of the woods tonight. The next two days will be critical to see how Paul’s body deals with the changes Dr. Jonas made to his heart.

  Paul’s chest is still open tonight, and it’s covered with a clear bandage through which you can actually SEE his heart beating. And that tiny walnut-size heart is beating. I must have stared at it for at least 30 minutes straight—fascinated and frightened but encouraged, thanking God that it’s still beating and for the medical miracle that has enabled Paul to be alive, yet deathly afraid that at any second that heart could stop beating. It’s mesmerizing, awe-inspiring, and terrifying all in one.

  There are a host of things that COULD happen, but right now our little guy is fighting hard and doing extremely well. Late tonight, Dr. Jonas stopped by the Cardiac Intensive Care Unit to check on Paul, almost seven hours after surgery. Right now, Paul’s heart is beating on its own without the use of heavy drugs or other means. ALL of his vital signs look good tonight. The same man who uttered those first two crucial sentences postsurgery—one that triggered an exhale, and another that triggered a gulp—gave us two more sentences tonight that triggered a determined smile:

  “Paul is doing better right now than ninety-nine percent of our patients following surgery—let alone a surgery of that length. He’s really looking strong now.”

  Dr. Jonas grew up in Australia but has lived in Boston for a long time so he has an interesting Australian/Bostonian accent that to me comes off as very calming and reassuring, yet he is always straightforward and to the point. Tonight, we got the point: Paul is doing very well! We have a long road ahead, but the first hurdle is behind us. And it was a big one. The fact that a surgeon can operate for seven hours on a walnut-size heart and fix at least five major problems, then put that heart on the road to recovery, boggles my mind. It also bolsters my faith in modern medicine and in God.

  After Paul went to surgery this morning, Father Kevin O’Brien from our parish, Holy Trinity in Georgetown, came to the hospital and led a prayer service in the hospital’s chapel for my family. It meant a great deal to us and really helped us get through what was an extremely tough day.

  I want to thank everyone who has been pulling for us, thinking of us and praying for us. It’s meant the world to our family. Paul is a fighter, and we’re gonna make it, one step at a time. We’re far from being in the clear, and we will likely have a rocky road ahead, but we feel blessed to be where we are and to have great friends and family standing behind us and supporting us.

  And tonight when we left the hospital I turned to Amy and gave her a teary-eyed high five, saying: “We are one day closer to bringing Paulie home!” And this was the longest one yet.

  I will share one other thing. As we have obviously been focused on Paulie, there are many other families in our situation or worse at Children’s National Medical Center. We have been fortunate enough to meet and talk with some of them. The strength and resilience of these families has been an inspiration to us. Many of their children have more than heart problems—they have liver, kidney, stomach, or other problems as well.

  We met one family whose nine-month-old daughter, Maggie, had been through nine surgeries in those nine months. The family has been at Ch
ildren’s pretty much nonstop since April. We spent a lot of time over the past twelve days “in the trenches” of the waiting room with them. We walked by Maggie’s bedside every day on the way to see Paul and we talked frequently with her family about Maggie’s many health issues and how they had fought them off one by one.

  Well, Maggie ended her battle last night—she died after her kidneys failed.

  We found out this morning when we arrived to an empty waiting room—a room that had been filled with anxious family members—pulling for Maggie and helping each other—staying overnight every night to be at her bedside. It was devastating news. We have been here only twelve days, but we now feel a part of the “Children’s family.” And that family has taken a big hit with Maggie’s death.

  Tonight after Paul’s surgery as we were standing next to his bassinet looking at his heart beat through his chest, a CICU nurse told me I had a phone call. I took it at a phone a few feet from Paul’s bed. It was Maggie’s mom. She wanted to check on Paul—to see how he did in surgery. I gave her an update and then passed on our condolences to her family. I told her we know Maggie is in a very peaceful place now. I told her that her family was a true inspiration to us as we begin this tough journey. A mother who had just lost her daughter hours before called us to check on our son after his heart surgery. The power, the grace, and the strength it took to make that call! We are truly humbled.

  The past twelve days have given us an amazing new perspective on life. Thank you all for being there for us. And may God bless Maggie’s family tonight.

  Sincerely,

  Bret and Amy

  Chapter Eight

  Miracles Do Happen

  It was just before 1:00 a.m. Friday, July 20, and I was about to jump out of my skin. Amy and I had been back from the hospital for more than two hours, but I was so excited about bringing Paulie home tomorrow—later today—I couldn’t even think about going to bed yet. Three weeks after he was diagnosed with life-threatening congenital heart defects, and just eight days after undergoing what Dr. Richard Jonas called one of the most complicated surgeries he has ever performed, we were finally going to bring Paulie home from the hospital.

  Although we didn’t get the “one-time fix” we were hoping and praying for, all the doctors were greatly encouraged about the results of Paulie’s surgery, and especially his rapid recovery. Not only was he ahead of schedule in hitting all the important postsurgery milestones required before he could be discharged, but the doctors said he was recovering faster than just about any baby they had ever seen following such a long and complicated heart operation. In fact, Paulie was out of the Cardiac Intensive Care Unit just four days after surgery and was now in a private room one floor above the CICU.

  Even though we knew he would need future open-heart surgeries and his world would be one of constant poking, prodding, catheterizations, angioplasties, hospital stays, checkups, blood samples, treadmill tests, and continual monitoring, Amy and I were humbled and thankful to God that Paulie’s life had been spared and that he had at least a shot at living a normal little boy’s life.

  The cardiologists at Children’s had already told us Paulie would need at least one catheterization or angioplasty in five or six months, followed by a second open-heart surgery sometime after that. But Amy and I were trying not to think about future operations or hospital stays just yet. Paulie had just fought his way through an incredibly complex, six-hour open-heart surgery with flying colors. Given the Baier family’s stress-o-rama of the past three weeks, Amy and I desperately needed a little time and space to celebrate getting through this first operation before we faced the reality of future ones.

  Once we got Paulie home, Amy and I pledged to do our best not to obsess about the unknowns and instead enjoy the known-known we had right here, right now. And what we had—or would have in about thirteen hours and twenty-seven minutes, depending on whether I got lost driving—was our son, Paul Francis Baier, home at last. That was all Amy and I wanted right now—nothing more.

  Even with all the question marks about Paulie’s future surgeries and hospital stays, the prospect of four or five months of nonhospital, uneventful normalcy seemed pretty wonderful to us. We were eagerly looking forward to picking up where we left off three weeks ago when the Three Baiers’ bonding process was interrupted at Sibley Hospital after we learned that our adorable and perfect baby boy didn’t have such a perfect heart.

  For me, the thought of now being able to snuggle with Paulie in our own home and on our own couch without tubes, wires, and the omnipresent beeps and buzzes of the CICU seemed like heaven come down to earth.

  While I was wide awake and bouncing off the walls of the condo with excited anticipation about the upcoming day, Amy, thankfully, had drifted off and was catching some sleep. Physically and emotionally drained, she had to get up in just a few hours for her middle-of-the-night breast pumping. I was amazed at how disciplined she had been in keeping up with that, especially given the nonstop emotional roller-coaster ride of the past three weeks. Whether she was here at the condo or over at Children’s, every four hours Amy was pumping and freezing milk for Paulie.

  Typically, after we returned home from the hospital around 11:00 p.m. every night, Amy would sit in the rocker next to Paulie’s crib and pump before she went to bed. After a few hours’ sleep, she would be at it again around three in the morning. Hoping to squeeze in a few hours of sleep before the sun came up, Amy would wake up around 7:00 a.m. and pump once more before we headed out the door to Children’s for the day.

  Amy’s tenacity and faithfulness were really paying dividends. Even with his complicated heart and blood oxygen issues, by all indicators Paulie was growing like a weed. There was a huge upside for Amy, too. Despite the craziness and uncertainty of the past twenty-one days, those appointments every four hours turned out to be a welcome constant in her life, a comforting ritual that helped Amy maintain some semblance of normalcy—even serenity—in the midst of the storm.

  Because she was also pumping throughout the day at Children’s, there was never really any need for us to tap into our home freezer supply and take milk pouches into the hospital. After three straight weeks of Amy’s round-the-clock devotion to her motherly duties we had accumulated quite a supply. Our small freezer was packed to the roof with plastic milk pouches marked with the dates and times Amy had clocked in over the past three weeks. I had no idea how long breast milk would keep, but if Amy kept at this much longer we were going to have to buy a bigger freezer, open a dairy farm, or get some kind of auction going on eBay.

  During some of the toughest moments over the past three weeks, while Amy was breast pumping in Paulie’s room, I would hear her trying to hold back the sad tears of a mother pining for her child. That was all about to change. Just hours before Paulie would finally be home with us, I knew Amy’s upcoming shift in the rocker would be accompanied by a big smile.

  We were both doing a lot of smiling lately.

  Standing next to Paulie’s crib, I grinned as I imagined being in this identical spot tomorrow night at about this same time, holding a screaming baby and loving every blessed minute of it. No amount of kicking and screaming in the middle of the night could ever be as nerve-racking and deafening as the sounds of Paulie not being there with us over the past weeks. And with the record-setting decibel levels he seemed to be achieving lately at Children’s, we definitely were going to be able to give our neighbor Rob Jewell’s sound system a run for its money in the late-night music department. I wondered how long it would take for me—not to mention Rob—to stop loving every blessed minute of it.

  Trying to be as quiet as possible and not wake Amy, in a time-honored ritual known to all first-time parents, I nervously flitted around the condo babyproofing the place for probably the billionth time. You can’t be too careful about these things. You never know; three-week-old Paulie just might climb out of his crib, crawl into the living room, leap seven feet up to the chandelier, and start practicing his bab
y trapeze stunts. Better get the ladder out and check those ceiling bolts one more time to be safe.

  I knew the plastic set of golf clubs I put in the corner of the crib might not pass muster with the U.S. Consumer Product Safety Commission. But Paulie had just survived a hypercomplicated six-hour surgery that basically rebuilt his heart from scratch, not to mention three weeks in intensive care. In the grand scheme of things I didn’t think a three-ounce miniature plastic putter falling over on him presented too much of a challenge.

  Being in the room where we would soon be spending serious bonding time with our son, I decided to get Amy’s rocker warm and ready for her upcoming shift. One o’clock in the morning or not, I was so overflowing with gratitude and joy that this day had finally come that I couldn’t keep my excitement bottled up any longer. I grabbed my laptop and wrote a message of thanks to our family, friends, and colleagues who had been standing with us over the past weeks and gave them an update on the miracle child who by now was inspiring us all.

  July 20, 2007, 1:00 AM, Friday

  Subject: Miracles DO happen!

  Thank you all for your concern—the e-mails, letters, well wishes, thoughts, and most of all the prayers have been fantastic, and needless to say much APPRECIATED! I am sorry I haven’t written to update everyone on Paul’s recovery. Honestly, I have been trying not to jinx it or screw it up in some way by sending out an update before we are home with him.

  I have knocked on every piece of wood I pass by. But it’s time to share the good news. Paul’s doctors and nurses at Children’s National Medical Center have told us that Paulie is coming home Friday afternoon! One week and one day after what his surgeon called the “longest and most complex” heart surgery his team has done, Paul’s heart is working well—actually, it’s working extremely well.

  The doctors have been shaking their heads in disbelief about the speed and success of Paulie’s recovery. I feel nervous that I just typed that, but multiple doctors and nurses have told us the same thing. (I am knocking on this desk now. I know—it’s stupid.) But—come on! Just eight days after I stared, fascinated and terrified at the same time, into my son’s open chest through a clear bandage to watch his beating heart, he is coming home! Just him. No equipment, just seven-pound him and the best-looking chest scar we have ever seen.