She was forced into the world prematurely amidst a sea of turbulence--our little angel, Daddy's Little Princess. Given only a minimal chance for survival, Jonna made it her job to teach the world what survival really meant. From a little girl smaller than my hand came the greatest lessons in life. Stubbornly hanging on when the doctors said she couldn't, Jonna taught us all the power of inner strength and how to locate it ourselves. Her example continues to inspire as she beat the odds stacked against her one miraculous moment at a time.
Through the words of her father, Jonna makes her story known. Too young to speak for herself, too young to understand how important she really is, Jonna's miraculous journey is transcribed by a witness to her accomplishments, bringing hope to others in similar situations. From the heartfelt words of her brightest Knight in Shining Armor, this little angel earns her wings on earth as she delivers salvation and hope to parents of preemies worldwide.
Submit Your Story Share your story with us at www.BlessedWithTragedy.com for the next release in the “Blessed With” Series. Dedication T his book is for Jonna Lil, her mother, and my parents. All of them have shaped my life in some way to make all of this possi- ble. This life of mine is now for all to know the Power Within. I know as an only child, I took longer to have a grandchild than my parents would have liked. While the one I gave them had a little tougher start than most, I hope they see the job I have done with her and are very happy that if it was to happen this way, I was tough enough to tackle the task. Mom and Dad, thanks for being there. Sorry for the delay. Thank you to Taco Bell. Your ninety-nine-cent burritos kept us there for our daughter. Our family motto: “You gotta do what you gotta do.” My wife is one of the strongest people I know, besides Jonna. She must know that I would have been incapable of this journey without that strength. She was inspired by our child’s strength to find her own. You have to admire that. She will never know how much Jonna and I appreciate her. v I have to tell you, sometimes I typed these pages with tears streaming down my cheeks. When I think now of how Mom sacri- ficed and forged on, it forced a few out. Love can’t be enough in these situations. It takes strength, power, and pride. Mom has all of that. Our family now has all of that, too. We take on challenges. We do not back down. We hold our beliefs dear and we prove them to ourselves every day. What we have done was a success. We have the proof. We have the daughter, the love, the strength to continue on. vi Blessed with TRAGEDY Preemie Fact F ewer than 57 percent of low-birth-weight preterm infants, those below 1,000 grams, survive. Jonna was 801 grams. Of those who do not survive, 91 percent live less than two weeks. Many survivors have neurological defects, cerebral palsy, or other learning disabilities. Many infants on a respirator suffer from retinal issues that cause blindness. Immature systems, such as the lungs and digestive systems, are not prepared to act outside the womb. Chronic lung disease appears in 30 percent of these infants. Only about one-third of low-birth-weight babies have a normal IQ by the age of two. Girls tend to be unusually strong. vii Contents Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .xi PART ONE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1 Prelude . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3 Chapter One: Try It—You’ll Like It . . . . . . . . . . . . . . . . . . . .7 Chapter Two: Halloooo Down There! . . . . . . . . . . . . . . . . .17 Chapter Three: Room 3, Bed 8 . . . . . . . . . . . . . . . . . . . . . .27 PART TWO . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .31 Chapter Four: The History of the World–Okay, 130 Days . . .33 Chapter Five: Hot August Nights . . . . . . . . . . . . . . . . . . . . .45 Chapter Six: Should I Just Be Watching Football? . . . . . . . . .89 Chapter Seven: October Surprise . . . . . . . . . . . . . . . . . . . .117 Chapter Eight: November Purple Rain . . . . . . . . . . . . . . .135 Chapter Nine: December Blessings . . . . . . . . . . . . . . . . . .149 Afterword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .163 About the Author . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .169 ix Foreword M any stories start at the beginning. The beginning is not where Jonna’s journey begins. There is a fine line between the beginning and the place where she begins her story. It is related, but not the same. It is a line of blurred paths, each travel- ing down the same road, yet following a different path. Jonna’s story is not one that no one has ever experienced before, but it is nevertheless unique. The story has been told by infants who came before Jonna to other parents who found themselves in similar situations as they watched their newborn fight to live. It is a story that has been ignored by those who have been told the tale in the past and will be missed by those who will hear the tale in the future. I didn’t miss the profound message my daughter gave to me as she told me her story, showed me the truth in it, and led me along a journey only an angel would have dared take. She fought on the celestial battlefield of life for her right to continue to teach me and her mother—along with the rest of the world—and she won. xi My name is Jack, and I never thought I’d write this book, though I knew I would write. I had dreamed of it often throughout my life. The thought of writing books that would lead others to success filled my fantasies. I knew I’d see the results sitting on a bookshelf one day, but the time for those hadn’t come yet. I also always thought that I’d know when the time had arrived. In my wildest imagination, I never thought that the time would come with the birth of my daughter or that her fight for survival would be my topic. In fact, I had never dreamed of anything but a perfect childbirth when I thought of having children and raising a family—when the time was right, of course. Over ten years ago, I began buying DVDs for my children— my unborn children. The carefully chosen movies sat in their cellophane waiting, along with me, for the perfect time to start a family. I wanted everything to be in place and without a single flaw before taking that big step toward fatherhood. I dreamed of telling my future children about everything, mold- ing their minds without ever inflicting the slightest bit of hardship upon them. For my children, I dreamed of a life free of trauma, stress, worry, and doubt. I dreamed for them the lives of perfection in every moment of their yet-to-be-created existence. My first child would be a son, of course. I imagined the two of us cheering the Steelers on to victory during the greatest Super Bowl ever known to man. In the summers, I would teach him to bat better than Honus Wagner as we played catch in the park under an approving, smiling sun. The roars of the clouds would serve as our audience, cheering him on with me striking out under his perfectly pitched balls of lightning. My son would be the cham- pion, I the wind that helped him to fly. xii Blessed with TRAGEDY My son and I would have high seas adventures and climb trees on the deserted island in our backyard while my wife laughed at our antics through the kitchen window. She’d holler out to scold us as we dug a “well” beside the tree for water on our island and be filled with pride as our little man learned to use a shovel to refill the hole when we were done playing. I would teach my son the art of carpentry as we built a tree house together high in the shady branches of the oak tree in our yard. He’d learn to swing the mighty hammer and drive the nail in clean and true with the strength of his hands. Our masterpiece in architecture would be the envy of the neighborhood and the best of the world’s secret clubhouses. Culinary arts would not escape the list of things to pass on to my son as I taught him the secrets of the perfect pancake. His results would be so light and fluffy that the very act of flipping the golden brown breakfast treat would cause the pancake to float effortlessly in the air. His mother would be filled with pride and envy at her son’s prowess. She would claim that she couldn’t make another pancake in her life and secretly hope that her little boy would deliver a stack to her bedroom to be enjoyed with sticky syrup on special occasions. When my son had grown old enough to know the early wisdom of life through our time spent together, I would have my daughter. She would be the princess of every fairytale, the laughter of the rain- bows, and Daddy’s little tomboy. Her job would be to fill the room with light upon entering, and she would do it without even trying. My daughter would look up to her big brother with a wondrous expression of awe reserved for big brothers. He would be her hero, her role model, and her protector if anyone dared bully his little Foreword xiii sister, the princess. Her big brother would even assist me as I taught his sister the fine art of changing her oil. Together, my children would learn appreciation for times past and for the truly memorable periods and people of history. The Rat Pack would be at the top of the music list, as would the melodious sounds of the blues and the beauty of the artistic world. As I had grown up an only child with my cousins serving as my “sisters,” I could see no other way my own family to begin. A big sister was out of the question. My daughter would need a big brother, a protector, as I had been to my cousins. I found no way for my plan to not go according to the ideal image in my head and no reason to worry, since I would time it for perfection. At no time did I entertain the idea as coming out differently in the end or worry that there’d be any hitches along my path. I planned it, and it would be so. I was wrong. My plans were changed. We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting on us. —Joseph Campbell (1904–1987) xiv Blessed with TRAGEDY Part One Prelude If today were half as good as tomorrow is supposed to be, it would probably be twice as good as yesterday was. —Norman Augustine (1935–) Learn from yesterday, live for today, hope for tomorrow. —Albert Einstein (1879–1955) I have always been a man obsessed with knowledge. The more I learned, the more I wanted to learn. As a child, I found the ency- clopedia a great source of entertaining reading material and poured over its contents to sear the words into my mind. It seemed to me that the more I learned, the more I realized how very little I knew. 3 I became compelled to fill the gap between knowledge and igno- rance by absorbing everything in print I could lay my hands on. Until my daughter’s birth, however, I didn’t know that I could read so much, learn so much, and still miss some pretty huge hunks of knowledge that had been offered to me and refused. I read many tales similar to my own, but I never saw what the passages in them really meant or what they were saying. I only thought, Amazing! and moved on. I missed the message until I found myself living it. As is the way of the universe, I was forced to take a different approach when I discovered the destiny that called to me through the tiniest of angels, my daughter. I began searching for every possi- ble answer, stories of others who had walked in my shoes, and even old wives’ tales that held a shred of hope for what I faced, along with my wife and our very premature baby, who weighed a mere 801 grams (1.7 pounds) upon her arrival. I shadowed doctors, tormented nurses, and even sought insight from the heavens above while trying to find the information that would guide me through the nightmare that engulfed me. I need- n’t have looked beyond the miracle we had named Jonna Lil. She held all the answers in her tiny spirit, and she willingly shared all that she knew. In my imagination, the process of creating a child and bringing it into the world fit with every other new parent’s expectations of the anticipated event. The beauty of pregnancy, the joy of baby showers, and the glowing image of a proud father showing off his new baby while holding both his wife and his child in his arms gleamed brighter than the prospect of sleepless nights and endless hours of worry over the safety of a new child. I only saw the pass- ing out of cigars and the hearty congratulations of family and friends. I imagined nothing out of the normal realm of all who 4 Blessed with TRAGEDY decide that a bundle of joy wrapped in pink or blue is the perfect addition to their family. Like all expectant parents, I thought only of passing the big test and of who the baby would look like, me or my wife. A son would be the spitting image of me, while a daughter would have tenfold the beauty of her mother. I knew my son or daughter would have the perfect number of fingers and toes, so I never really felt any trepidation about having done a good job. How was I to know that the “test” parents fretted over wasn’t the number of tiny fingers and toes but the very right to live outside the womb when things went terribly wrong? How was I supposed to protect and help my child when she had so many odds stacked against her from the beginning, when she alone had to fight the battle and I could only watch? How was I supposed to know she would arrive months early in order to save both her mother and herself? I know that many will read this book just as I once read other stories similar to my own. I am hoping my audience has more sense than I had at that time. If I had truly read the stories and learned what they were really saying, it would have saved me a great deal of heartache and worry. In fact, I wish I could make this required reading. I urge you to help me to spread the messages that came from my little miracle, to learn from the smallest of teachers as I have, and to go forward with more purpose and understanding than when you began reading this book. Share it with your friends, family, and strangers. Help me spread the lessons that Jonna was brought to earth to teach us. We can succeed in all that we do, and Jonna can show us how. Jack Hatfield, aka Daddy Prelude 5 Chapter One: Try It—You’ll Like It A fter years of family teasing, friends cajoling, and my trying to decide if this were really the right time, my wife and I finally made the decision to join the rest of the world in creating a family of our own. I knew I wanted children and would have children, but until the moment that I gave in and admitted that now was the time I’d been waiting for, I hadn’t done it. The time wasn’t exactly perfect—not in the sense that I wanted for my children. Still, perfec- tion as I saw it was gleaned from the not-so-distant future. Feeling that the time to begin and the time for perfection were in alignment with the stars, in addition to my dream of teaching my child to be wondrously happy, I entered the arena of those trying to become parents with a boundless love and tenderness in my heart. We tried for a month. No results indicating that a new life, a new soul would soon emerge in the miracle of birth were forth- coming. This didn’t alarm us very much. We’d had a great time trying, and we were closer to each other in our relationship than 7 we had been, a phenomenon I didn’t think was possible, as my marriage was already strong. We did resolve to try even harder for the next month and to pay attention to indicators the experts said meant a better chance of conception. The second month, we diligently followed every method known to the scientific world. We watched temperatures, varied our times of attempts, and ate foods thought to increase our chances. If it was written, and I could find it, we tried it. Much to our disappointment, the first threads of worry emerged. We weren’t pregnant yet. Thinking there might be some medical reason we couldn’t see that would explain the problem, we began to delve into reasons why. My wife and I were pronounced pregnant. We were going to be parents, and our concerns about the delay in becom- ing pregnant fled. With the most important aspect of starting a family behind us, we began the new-parent strategy dance that all who are expecting experience. After the coming of our blessed event was successfully confirmed in January 2004, we began to prepare for our new addi- tion with a fervor that could rival the creation of the heavens. Ours was an infectious hymn, and her parents as well as mine joined the fray. Even aunts and uncles to be were not left behind in our celebration. As topics of conversation turned to the number of moist wipes needed and the best diapers for the angel on its way, I began to worry about the DVDs I had purchased over the years and what toys my son should have to play with upon arriving. I believed that everything would follow my plan and had not yet realized that plans made in one’s youth seldom play out the way they were written. 8 Blessed with TRAGEDY With that in mind and my adoration research, I added to the collection of suitable movies to make my son’s life perfect. I began a collection of the best available toys, which were guaranteed to make my dreams come true with their profound effects upon my soon-to-arrive son. Mobiles, rattles, and baby gyms multiplied. If it were rated top in its category by manufacturers and experts alike, then my child was to have it. My wife and I chose the crib—a perfect bed for our perfect child. We also invested in a matching bassinet, changing table, dressers, and chest of drawers, plus teething rings, pacifiers (ortho- dontist endorsed, of course), wipes, lotions, baby shampoo, and more. Oh my, we need moist towelettes—wait, I have some of those already. We thought of and discussed the purchase of a toddler bed and a suitable bedroom suite for childhood as well, but our parents, who had already done this same new-parent dance when we were born, convinced us that these items could and should be purchased later, with the input of our coming child. February’s doctor’s visit went without a hitch. We passed his entire test successfully. My wife and I confirmed that her diet had consisted of only the best and that she’d refrained from eating those things she may have been craving but didn’t offer much in nutrition, like glass, sand, and wood. She took vitamins on sched- ule and was getting plenty of rest. We were going by the book on this pregnancy, taking no risks, and enjoying the anticipation of an event eight months away. I, impatient for my son to arrive, began to talk to him. I sang songs and discussed everything I saw and heard in vivid detail. I spoke to him on subjects such as shopping, finance, and what he could expect upon his arrival. I described his room, asked his opin- ion on items he may want, and wondered where I was going to find Try It—You’ll Like It. 9 the Winnie the Pooh teething ring he requested. It didn’t matter to me that my son hadn’t answered when I inquired if he would like one; I took his silence as an indication of his approval. I couldn’t understand, when we went for our sixty-day visit in March, why we didn’t have a baby yet. I had everything, includ- ing the preferred teether, waiting and ready. The doctor gave some excuse that the baby wasn’t due until October 4, 2004, and that we still had a bit of time left before the blessed event. He assured me that this was the normal way of things during pregnancy and that just because we were ready didn’t mean the baby was. I couldn’t help but form a mental picture of my checking the temperature to find out if the baby was really done or not. My mother, in her helpful manner, begged to buy any baby items we may have forgotten, but there was nothing. With little else to do, she began to inquire about baby showers and requested more than one report on my wife’s health. This, I know, is what mothers do, but I have never been a patient man. My last nerve was stretched to its limit. I felt that the baby should be ready upon my schedule. Later, I would be reminded of this as my mind raced with adages from the past in a whirlwind, such as “be careful what you wish for” and “patience is a virtue.” For now, I felt entitled to my feelings since I was, after all, an expectant father. I didn’t get to feel the baby as my wife did, and I wanted to have the same kind of contact with him that she did. I’m sure other expectant fathers take a spin on the same rollercoaster ride, or at least that is what I’ve chosen to believe. My shortness in response to simple ques- tions from family and friends was only the result of the stress I felt as I battled to be more patient. For several more visits, everything appeared to be progressing normally. There were no indications that even the slightest snag 10 Blessed with TRAGEDY waited around the corner—until the blood glucose test. It didn’t alarm us, since the results only indicated there was a problem with my wife having sugar. She’d cut back or eliminate it altogether, I was sure. Besides, the doctor assured us that this again was a common side effect of pregnancy and wouldn’t be a big deal at all. My wife and I have always been health conscious, so the sugar bit was a walk in the park. After all, we had already eliminated household cleaners, glass, nails, and other such items. Sugar was easy. I enjoyed cooking, so I continued my duties of house chef and began to prepare anything that fit the bill of perfect health. Even when she couldn’t eat, I spent time cooking for her, just in case. May saw the next snag, a cousin of the first snag, arrive. Her blood pressure was elevated. This time, the doctor didn’t say this was normal and nothing to worry about. Instead, he explained that my wife couldn’t be stressed or do any strenuous activities. He wanted to monitor her blood pressure closely. Since my wife had been training to be a nurse and worked in the doctor’s office that we now visited prior to pregnancy, the doctor decided that she could monitor it herself and report her findings to him. During the time before our next doctor’s visit, my wife’s blood pressure went up and down without warning. She felt fine, however, so neither she nor I worried too much over the ever- changing numbers of the blood pressure cuff. While we watched her blood pressure perform tricks of an unknown nature, she rested, stayed relaxed, and tried to remain stress-free. At the following visit with the doctor, the couple of snags we had run into began to grow and become potentially big problems. Her doctor decided that although he didn’t think we should be concerned, he wanted to have my wife see the doctors at the high- risk clinic just to be on the safe side. As expected, this pronounce- Try It—You’ll Like It. 11 ment created the worry and fear that he assured us was not neces- sary. No pregnant woman was sent to the high-risk clinic for having a perfect pregnancy. Everyone knew that. We justified this fear as a reasonable request because of the higher blood pressure. We assured ourselves that it didn’t—could- n’t—mean we were going to have any problems at all beyond the small glitches we had already encountered. Besides, as I have already mentioned, I have an insatiable thirst for knowledge. I thought perhaps the high-risk clinic could give me an even better understanding of how to take care of my wife while she carried the most precious gift she could give me inside of her womb. The appointment was set for a week and a half down the road. We were getting nearer to realizing every expectant parent’s worst fears; we just didn’t know it. There weren’t any blaring horns warn- ing of impending danger or signs that pointed anything out to us along the way. There was only the sudden and explosive set of events that would change our lives forever. The high-risk clinic was more medical and not as laid back in atmosphere as our regular doctor’s office. It had a surgical, sterile appearance, and there was no doubt that the reason we were here was due to problems. All of a sudden, a light bulb went on above our heads. It shone a harsh light on the carefully laid out justifi- cations we had made as the full impact of where we were and why we were there sank in. It became obvious to me that this was not the place you were supposed to be if you were experiencing a normal pregnancy. It seemed more suited for birthing, if that could be stated, as the clinical appearance left little to be desired. The high-risk clinic seemed to me a place that one goes only for proce- dures of either an emergency status or for pregnancies that indeed were very off course from the normal prenatal bliss. 12 Blessed with TRAGEDY Things went from bad to worse. Upon taking my wife’s blood pressure, they decided she should have blood work—not later, but at that very moment. Following this bout of sudden waves upon the sea and hours of waiting for what it all meant, my wife was declared to be in the beginning stages of preeclampsia. Preeclampsia is a condition, usually in the third trimester, characterized by abrupt hypertension, large amounts of protein into the urine, and massive swelling. The only cure is induction of labor and separation of mother and child. The final bomb settled when she and I were informed that she no longer needed to see her doctor. The high- risk clinic would handle all things pregnancy with her from here. My wife was put on medication for the beginning stages of preeclampsia, and we were told that she would need to be seen weekly. This little bombshell should have prepared us for more battles to come, but we thought that things would begin to calm down considerably, even after the recent news. When we returned for our second visit, we encountered a warzone that wouldn’t end until our child battled alone for her very life. My wife’s condition hadn’t improved. Instead, it had rapidly gotten worse. As a result, my wife was admitted into the hospital for the duration of the pregnancy, which would turn out to be much shorter than expected. It was July. The baby wasn’t due until October. The idea of being in the hospital that long seemed to me ridiculously over- cautious. I wondered briefly what damage sitting at the hospital for this length of time would do to parts of my anatomy. While this may seem a cold and callous thought, consider that with the pronouncement at the high-risk clinic, the immediate admittance to the hospital of my wife, and the crushing weight of the realiza- tion that we were in serious trouble with our pregnancy, I was Try It—You’ll Like It. 13 walking around in a shocked fog. Things were happening too fast, in the wrong order, and as far away from any of my dreams and plans as they could go. Over the next four days, my wife began to look as if she were an inflatable doll that someone had inflated too much. Her swelling increased to a degree that was horrific and fascinating all at the same time. Fascinating due to the fact that even her hands disap- peared, and horrifying because of the implications it meant for our child and my wife in terms of survival. My sense of humor at this time wanted me to start speaking in Huttese, yet even that was being displaced in a sea of rapidly filling dark waters. The swelling consumed her body in such a fashion that I wondered at its ability to grow still worse. We could do nothing to stop it. It was invinci- ble in its attack on my wife and child. The cause was evident: my wife’s body was rejecting the child growing inside of her. Unfortunately, options were limited in such situations. Removing the baby early became the mantra of the doctors as our particular situation became more severe. If the baby wasn’t removed early, then the rate of mortality for both mother and child increased each day we waited. If we removed the baby early, mother would definitely survive, but the baby may not. It would come down to how strong the baby was and how badly our child wanted to live. During this time, when every parent wants to protect their child, born or not, I spoke to everyone, read everything, and made a complete pest of myself. I chased doctors down in the hall, caught them during their breaks if they took them where I could see them, and was even known to corner them in elevators. My pursuit of knowledge was relentless. I knew I had a great deal to lose, and I tried tirelessly to sway the odds in my favor. I didn’t want to lose 14 Blessed with TRAGEDY my wife, I didn’t want to lose my child, and I certainly didn’t wish to lose them both. My wife and I shared every morsel of information that could be shared as we faced the most difficult situation known to parents. We had no choice but to endanger our child in order to have our child. My wife and I found ourselves in a catch 22: no matter our decision, the outcome would be heart-wrenching. Besides tracking down doctors in the most curious of places, I also spent hours of researching possible solutions on my own. I never wanted the weight of guilt that this sort of decision could bring if anything went wrong, but I knew instinctively that I would be subjected to it no matter how well I researched the options. In the end, it would not matter the process that I had participated in. Only the results of that decision would have any importance at all. I wasn’t then, nor am I now, nor before this all started, God, but I was helping to play that part in my own child’s life, in my wife’s life, and in my life. The weight of the world rested on my shoulders, and I had no way to avoid playing my part, whether I wanted to or not. I found some comfort in the knowledge that premature births and births following more unconventional means had vastly improved over the years. Statistically, if we had been having our baby even fifteen years ago, there would have been almost no chance for survival in our situation. With the advancements in technology, at least our baby stood a chance, even at the gestational age that we’d reached. Still, I couldn’t help but worry about the outcome, and I couldn’t avoid making the only decision that could give both my wife and baby a chance. It was the lack of a guaran- teed outcome that nagged at me like an old hen when collecting her eggs. It was the magnitude of the decision itself, no matter how necessary, which caused my very core to shake in fear. Try It—You’ll Like It. 15 I thought of other premature babies that had survived over time. Einstein was one. Perhaps my baby would follow in his footsteps. I wondered what great gift my child had to offer the world, for there had to be a purpose to the madness that my wife and I were engulfed in during this time. I never realized just how great that gift would be and how effortlessly my child would offer it to the world. Finally, I was ready to face the doctors and tell them what I must, and to challenge my own destiny. I had made the deci- sion. It was time. This time, like all times, is a very good one, if we but know what to do with it. —Ralph Waldo Emerson (1803–1882) The strongest principle of growth lies in human choice. —George Eliot (1819–1880) 16 Blessed with TRAGEDY Chapter Two: Halloooo Down There! E ven as I announced our decision to the doctor, with as much understanding of the consequences as could be known, I couldn’t help but wonder if technology would ever be able to fully replace what nature had spent all of time perfecting. I was sure that, one day, the idea of technology completely filling in any gaps or glitches that nature encountered would be possible. My only regret resided in the desire to have that ability now, because it was my child who needed it so desperately. Time does not change us. It just unfolds us. —Max Frisch (1911–1991) 17 My wife’s labor was induced the following day. It was decided that the July 10 would be the day my child would begin the fight for more hours with every breath. Monitors were placed around my wife’s belly in an effort to fully monitor the baby’s actions and its state of health. Signs of distress in both my wife and my child were watched closely. We had abandoned the safety of time present in a normal pregnancy and were entering an area that would place both mother and baby in danger in order to save them. How strange it seemed that in order to save my child’s life and that of my wife, the doctors had to place both of them in even more danger. I spent many hours during this phase of the process talking to my child, assuring the baby that things would be alright, and knowing that I couldn’t make good on the promises I uttered. I held my wife’s hand and rubbed her arms, tried to reassure her that nothing would go wrong, and felt pangs of guilt. I had no power to ensure that nothing would go wrong. Because my wife had been placed on a diet of ice chips during the induction of labor, I turned the television on, and we pretended that she was eating the most delicious foods. Cooking shows took on a new meaning, as they helped us both to relax as much as possible. But stress of what was coming grew every instant. Life’s problems wouldn’t be called “hurdles” if there wasn’t a way to get over them. —Anonymous 18 Blessed with TRAGEDY We spent those hours trying to give each other hope and create a sense of normalcy that neither of us felt. We both knew that without hope, we would lose the battle before the first infantry ever left the barracks. Hope is a waking dream. —Aristotle (389–322 BC) Our sleep was interrupted by seemingly surreal beeps from machinery. As my wife moved in her sleep, the belts from the monitors would slip, setting off alarms when the baby became undetectable. Little did we realize that we were only getting an ominous peek at the types of machinery that were to come. There are still nights in which my sleep is haunted by those warning beeps, and I must go into my daughter’s room to check on her. I still have to reassure myself that my child is really okay. The inducement of labor failed. Our baby couldn’t push herself out, and my wife didn’t dilate enough to allow our baby to exit. To top it off, our child wasn’t developed enough to have the strength and resiliency of full gestational births. My wife did get some relief from the pain due to the epidural, but our child did not want to be born yet. Even the baby seemed to know that the condition in which she was entering the world was less than ideal. Caesarian became the next option. There was not enough time to allow our baby to be born in a more natural birth. Manual dila- Halloooo Down There! 19 tion of the cervix was attempted, but my wife’s water was acci- dently broken in the process. Instead of being able to be properly prepped for the surgical birth, my wife’s status moved to “emer- gency,” and surgery had to begin immediately. The shock of the water breaking and our child’s premature status caused all the monitors to lose track of the baby. Time was up. There were no more seconds to wonder if we were making the right decision. It simply had to be done. Now. It was in this moment that I made a strange observation. I was completely panicked and not sure of what was happening exactly, but time seemed to become two things at once. The clock ticked both slow and fast as I stood there trying to make sense of what the doctors were saying and fearing for my baby and my wife as they searched for the baby’s heartbeat. Only when the faintest of heart- beats was once again picked up did time seem to come together again. When it did, there was a whir of activity as doctors raced to make sure that heartbeat continued and grew stronger. As if things weren’t chaotic enough, the power began to flicker. We were in the midst of a storm, both inside that hospital room and outside the hospital’s sterile walls. This delayed our emergency, because some surgical equipment could not be used without steady power. I thought hospitals had generators for just such occasions as power outages; why weren’t they using those? The delay took another hour and a half. I had to be ready and in scrubs at the precise moment that the doctors were finally ready for the baby, and I had been up for four days. I couldn’t help but feel that adrenaline must have a limit, so I sent an SOS out to my family and friends. I needed an energy drink. A friend of ours brought me a four-pack, and I downed three of them without breathing. I needed the energy to continue on, although I now suspect that I would have been fine on pure adrenaline. 20 Blessed with TRAGEDY I have always felt that my daughter fought to remain in the womb, and therefore I refer to her birth as a “ripping from the womb.” It is more my own perception of the cruelty fate dealt her and the difficult path that she had to follow because of it and not insensitivity. It’s similar to what happens when one blames God for something that cannot be changed and was always meant to be. I have often wondered why she had to walk the path of prema- turity, why she had to face the potential problems, and why my plans for such perfect childbirth were crushed by a destiny I still don’t understand completely. Still, I do appreciate the efforts of everyone involved and am so thankful that my daughter did beat the odds when they were stacked so high against her. A Restricted View Halloooo Down There! 21 My wife and I were sectioned off in a cubicle after being prepped for surgery. I found that I was not nearly as fond of the color blue as I once thought. We were blanketed off in blue, which marked the sterile areas we weren’t to touch or breathe upon because that could cause contamination and harm our baby. My wife had only a local anesthetic, meaning they could not put her completely to sleep. She had had an epidural as well. At one point during the surgery, doctors had to relieve her pain when she began to be able to feel what they were doing. They said pressure was normal to feel, but pain was not. Thankfully, they corrected the pain. I gently coached my wife and hoped that our baby would under- stand she had to survive. Even though we didn’t have a traditional birth, my wife looked to me for encouragement, and I needed to feel I could do something other than ask “Why?” and “What is going on?” in turn. Surgery took place that night, and at 10:58 p.m., my daughter entered the world when she should have still been in the safety of her womb. She knew that she needed more time, but preeclamp- sia did not agree. Finally, I asked if I could look over the blue curtain to see a glimpse of the child I already loved beyond reason. My eyes reached the top of the curtain as the main surgeon took over for the intern and flung a blue, Smurf-like creature onto the table. She wasn’t breathing. Only a small movement of her right big toe indicated that she was alive, and I sank like lead back into my seat next to my wife’s head. I murmured that I saw her foot move but couldn’t muster much else. It was now that the full implications of our decision began to hit home. My daughter must have known that both of us needed a boost of confidence. She gave one weak cry before silence fell again. We 22 Blessed with TRAGEDY would not hear her cry again for a very long time. Still, that one cry was enough. It gave us hope, and we needed that hope more than we had ever needed anything in life before that moment. Her hematoma from the pushing and her length as long as an infant hospital band Halloooo Down There! 23 The doctors pushed a tube into my daughter. She couldn’t breathe on her own and was rapidly losing oxygen. We only got to have a peek at her, with the breathing apparatus, as she lay in my cousin’s arms (she happened to be one of the nurses in the surgical room) before I was escorted out of the surgical unit. I had no idea if my wife was alright or if my child was alright. I only had the one cry to report and the one movement she made with her foot. I hadn’t envisioned this scene in my dreams about what my wife and I would be doing right after birth. However, it was the scene I got to experience. I was relegated to being a scared, waiting rela- tive, trying to figure out the positives in the turbulent seas that encompassed my family. For my wife and I, there would be no passing the baby around to eager relatives. No laughter as my daughter cried to be fed by her mother rang through the rooms. I was only told that I could see my daughter in a couple hours and my wife in about an hour. Until then, I did the only thing I could do to make the time pass as quickly as possible: I slept. Forty-five minutes later, I woke up. I was taken to see my groggy wife. I listened more than she could to what the doctors were saying. My wife could deliver another child vaginally if we chose to have another. She had been stitched up nicely and was not experiencing any complications. My daughter, however, was another story. We were told that our daughter had been moved to the neo- natal intensive care unit—NICU—upstairs. The baby doctors had taken over her care, and the surgeons we were talking to could only tell us that as far as they knew, things were going well there. My wife and I both finally slept as we waited for the call that would tell us we could finally see our daughter. 24 Blessed with TRAGEDY I know myself now, and I feel within me A peace above all earthly dignities, A still and quiet conscience. —Henry VIII, William Shakespeare (1564–1616) Halloooo Down There! 25 Chapter Three: Room 3, Bed 8 S eeing your child in NICU is not the same as visiting the hospi- tal nursery. It’s more educational, as the unit is so private compared to the rest of the hospital. There are rules and regula- tions that have to be followed that don’t exist in the maternity wing’s nursery. Parents and grandparents are the only ones allowed to see the baby, and all visitors must be scrubbed and sterile before entering the unit. Visitors must listen to the nurse at all times and refrain from doing anything that might upset the babies. Another big difference is that NICU sort of looks like a high school science lab on frog dissection day. It isn’t that I thought, or do think now, that those babies—including my own—were amphib- ians, but the positioning required to keep all of the special tubes and monitors in place created that look. I found out quickly, as I am sure every parent in the terrifying world of the NICU does, that humor is a must. Laughing and finding humor in all that is around you can make the difference between keeping and losing hope. 27 The shield for her troubles: my hand What hit me about my daughter was that, minus the wires and medical gadgets connected to her, she still looked as if she were in a womb. Her eyes and head were covered. Her skin was pale, and she had the look of a fragile china doll. Her tiny hand was only the size of my thumb. Although my wife and I had already named her Jonna, I still called her Baby. I spoke my first words to her. “Baby, it’s Daddy. I’m going to take care of you. I’ll do everything in my power to make sure nothing ever happens to you again. You just have to be strong enough to help me get you home. You are going to be okay.” Jonna’s small hand seemed to squeeze my finger, and I began to let myself believe that she understood me and that she would fight. It was the first true ray of hope and relief I had felt. I cherished that feeling, that bond with Jonna, as I walked away from her isolette. All of the medical marvels that surrounded her disap- 28 Blessed with TRAGEDY peared, and I saw only my beautiful, baby girl. I knew only that I was, at long last, a father. Tears came to my eyes, and I took up arms to help her survive, accepting the challenge that had been thrust upon me. I would be her knight in shining armor. I would do whatever it took to make it alright for her. First Touch, Last Time I Ride Alone Children are the hands by which we take hold of heaven. —Henry Ward Beecher (1813–1887) Room 3, Bed 8 29 Part Two Chapter Four: The History of the World— Okay, 130 Days W hat follows is the exact, day-to-day account that I wrote in an online blog for the rest of our family, as only parents and grandparents could visit the NICU. The rest of the world looked to me to give them their daily dose of Jonna Lil. It started as a favor and grew into a phenomenon. It was a daily addiction for some. I would get email from people I have never met if I missed an update. “How could you?” People had a routine for reading the blog: some with morning coffee, some after dinner, and some in groups at lunch at the office. I decided to leave the blog just as it was when I wrote it. I never took the time during those long months to consult with a diction- ary, a thesaurus, or a grammatical guide to the English language. I wrote when my heart told me to, when I needed to, and with all of the fears intact. Each moment with Jonna was precious, as it still is, and I wanted only to be with her. She needed me more than 33 she will ever need me again. Therefore, some of the blogs may not have full sentences, but all of the blogs are the raw account of watching Jonna fight for her right to survive and of her triumphs in battle. Each tribulation she experienced was a mountain on her road to survival. I’m so glad I watched. Jonna taught me more than I can ever teach her in her entire lifetime. She gave me more than just the miracle of fatherhood. She gave me the secret to succeeding even when nothing seems to be going right. She taught me to persevere, to chase the rainbow of hope instead of standing under the storm clouds without an umbrella. Jonna taught me to live as I have never lived before. I just want to say to every one of you: Thank you. Sincerely, thank you. Your prayers and hope helped like you will never know. I can never explain how. I can never show you. I can only give you thanks. There is more to the story, in that I hope I can show you a way to succeed as Jonna showed me. Welcome to our story. I used many colorful analogies to try to simplify the challenges that we would face, and many of those challenges occurred at the same time. This was not an attempt to belittle the challenges, but was just a way to put some analogy to the enormous issues that sat at her feet. Despite every one of them having a potentially night- marish ending, she decided within herself to get to the best outcome that she muster. You want to talk about a hero—she is mine. I look at her today, as her frustration rises with something that she does not know how to do yet, and I just want to get inside her bra
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