There's something special about going home. We all know the feeling. There's home where our house is and home where we came from and it is often our hearts that link the two. Some of us still live in the town we were born in, others of us have long since left but still carry that town, in our hearts, like a love letter. I was born in Pittsburgh, moved with my family to California shortly thereafter, went home to visit only twice in my childhood, once while in college and a final time when my grandmother died. But if you ask me where I run when I need to feel safe? No question about it. The answer is Pittsburgh. With Anthony's slow development, with the very real chance that he could be handicapped or worse, I needed to go home. I needed to draw on the energies of family and family love and, I won't lie, as odd as it may sound to you, I needed to visit my grandfather or, more importantly, his grave.
When you are born with a number next to your name you either take it as a novelty or you take it seriously. When I was growing up my grandparents often made the trip to visit my Dad and I (my parents had by then divorced) and my Grandpap became a very powerful influence in my young mind. He was quiet but jovial, loving and encouraging. It was often hard to understand him with his thick Italian accent but we formed a very tight bond. I knew immediately that this man expected me to carry myself a certain way, behave a certain way, and to honor our shared name of Anthony in the life I would lead. Grandpap and I touched lives briefly, only a half dozen times or so in all before he passed but it was the very same brevity in these visits that made them so powerful. It was as if the lessons and advice he had time to give his other grandchildren over many years had to be distilled and concentrated for me. I ate it up and, I'm sure, romanticized a lot of it, but it worked. When my own Anthony was born his name and the roman numeral that followed were a given the second he popped out. Many times next to that incubator in the NICU and Huntington Hospital, all alone, terrified, I felt my grandfather's teachings ringing in my ears and, I am positive, his ghost at my side.
After unpacking at my cousin Celeste's home and visiting for a few days it was obvious to many that Anthony had issues. His eye was one thing but even now, at eighteen months, he wasn't crawling at all. His legs were very stiff and when he moved he dragged them across the floor with his upper torso. I have a large Italian family. Many cousins and aunts, many mom's, and they knew something was wrong. I caught many a loving but worried glance in their eyes. After a bit I asked to go to my Grandpap's grave, not realizing how rare and hard this was for the vast majority of my family to do. Even then, more than a decade after his death, no one could fully accept that he was gone. It hurt too much. Such was the weight of his memory in all of their lives. My cousin Patty Ann finally agreed, almost in tears, to take us.
The next day at the cemetery under the shade of a tree I set my son down on my Grandpap's grave. He sat and stared at the birds and the big blue sky while I prayed for miracles and interventions. We placed flowers there. Anthony played with them. My cousin cried, my wife cried. I did not. Instead I talked to my Grandpap in a silent whisper. "This child has our name now. I have passed it on. Help him, or find someone in heaven who can." Silly? To some reading this yes, to others perhaps not. In my heart? No doubt. I had gone to the Big Guy in my life and asked him to go speak to the Biggest Guy of all. When we left the wind was at our backs and I took note.
The next day Anthony crawled for the first time, across the carpet in my cousin's front room, right next to her piano. It was amazing. It was a miracle. He scooted, then he scooted some more and his legs bent enough to get him going and then there was no stopping him.
Friday, April 1, 2011
Thursday, March 31, 2011
18 Months
The first eighteen months of our son's life were a series of big moments and big decisions. We brought home our son without an apnea monitor or any of the other equipment we had detested in the hospital but now wished we had at home. Having been there in person many a night when the nurses literally had to shake my son to get him to wake up and start breathing again, those first few nights home should have been nearly sleepless. Instead I can remember my wife and I being so exhausted that we passed out each night in spite of our fears, our son's bassinet right next to our bed. I'm a little ashamed to admit that but having a premmie can remind you like few things on this earth that you are very, very human.
Like an angel from God my mother-in-law still hovered, each night. She's gone now. She passed away when Anthony was five. But as a grandmother she was unparalleled. She saw her own daughter weak and in pain, barely home alive in many ways, and she saw the same in her new grandson. As for me, to be honest, I think the expiration date on "useful" in her book hit right around the time we brought Anthony home. I was a man. Not a bad word but not really the first word that comes to a woman's mind when a newborn arrives on the scene. For me the danger had passed. My wife and child were home. It was time to get back to the "providing" part of my job description and so I did.
Anthony grew, slowly at first, but then more each week. Though he would always be on the small end of the growth scale in those early years he at least attained and maintained a healthy weight. His eye refused to stop turning in and he was slow to reach his developmental milestones and deep down we knew what this could all mean but we were too shell shocked those first eighteen months to find the energy to speculate. Some of the brightest medical minds around us were only willing to hazard guesses so who were we to try and predict the future. Still...the words lingered there, just outside the touch of our conscious minds: autism, mental retardation, brain damaged. When Anthony began to smile and interact with us in the smallest ways we would break out in celebrations worthy of a celebrity. His first word was "light", which was the thing that most fascinated him during bottle feedings (the light on the ceiling fan overhead). Then came "ball" (that thing Daddy kept bouncing across the floor to him), followed by his first real communication of what he was feeling from his physical environment "windeeeeeee" (it was, after all, a windy day). He was late sitting up. Very late crawling. But his mind? His mind seemed fine. I still have on videotape the very first time he said his full name: Antnee FeAgioli. The tape stops with me cheering in the background but I didn't dare turn the camera on myself; I was crying tears of pure joy.
He had eye surgery, which was gut wrenching, but he (and we) got through it. After that challenge I realized it was time to take him home to Pittsburgh. He was the family namesake. Anthony the IV. My family had waited long enough, with bated breath, each week for updates. My Aunts and Uncles, my cousins...it was time they meet our little fighter. So home we went.
Like an angel from God my mother-in-law still hovered, each night. She's gone now. She passed away when Anthony was five. But as a grandmother she was unparalleled. She saw her own daughter weak and in pain, barely home alive in many ways, and she saw the same in her new grandson. As for me, to be honest, I think the expiration date on "useful" in her book hit right around the time we brought Anthony home. I was a man. Not a bad word but not really the first word that comes to a woman's mind when a newborn arrives on the scene. For me the danger had passed. My wife and child were home. It was time to get back to the "providing" part of my job description and so I did.
Anthony grew, slowly at first, but then more each week. Though he would always be on the small end of the growth scale in those early years he at least attained and maintained a healthy weight. His eye refused to stop turning in and he was slow to reach his developmental milestones and deep down we knew what this could all mean but we were too shell shocked those first eighteen months to find the energy to speculate. Some of the brightest medical minds around us were only willing to hazard guesses so who were we to try and predict the future. Still...the words lingered there, just outside the touch of our conscious minds: autism, mental retardation, brain damaged. When Anthony began to smile and interact with us in the smallest ways we would break out in celebrations worthy of a celebrity. His first word was "light", which was the thing that most fascinated him during bottle feedings (the light on the ceiling fan overhead). Then came "ball" (that thing Daddy kept bouncing across the floor to him), followed by his first real communication of what he was feeling from his physical environment "windeeeeeee" (it was, after all, a windy day). He was late sitting up. Very late crawling. But his mind? His mind seemed fine. I still have on videotape the very first time he said his full name: Antnee FeAgioli. The tape stops with me cheering in the background but I didn't dare turn the camera on myself; I was crying tears of pure joy.
He had eye surgery, which was gut wrenching, but he (and we) got through it. After that challenge I realized it was time to take him home to Pittsburgh. He was the family namesake. Anthony the IV. My family had waited long enough, with bated breath, each week for updates. My Aunts and Uncles, my cousins...it was time they meet our little fighter. So home we went.
Sunday, November 11, 2007
8 Weeks
Anthony was born at 29 weeks of age. He weighed in at just over 3 lbs. I distinctly recall the first time I was allowed to see him. He was in the NICU by then, safe in his incubator. But I remember thinking immediately that he looked very much like a small bird, and I was terrified. I didn't show it. Stiff upper lip and all that. But on the inside I was torn by my joy at being a father, hedged as it was against the very real chance my son could die before I even held him. I remember thinking that if I reached into the incubator port hole to touch him that I might hurt him, and right about then is when I touched his hand and one of the most amazing moments of my life occurred.
His little hand grabbed my thumb and held tight. It was as if he was saying, from the start, not to give up on him. I never have since.
That was the first day of what would be an eight week adventure. There would be feeding problems and sleep apnea, fear of brain bleeds and a whole host of other issues that the doctors were obliged to warn us were a possibility. The NICU is not a place of promises. As an outsider it is hard at first, becoming inoculated to all the medical terminology is difficult enough without also getting a crash course in the emotional neutrality that I guess a career in medicine requires. But you learn to not begrudge them the distance they need to do their jobs properly, even if the patient in question is your own child.
My wife remained at the original hospital where the birth had taken place. The insurance company would not approve her transfer to the new hospital, nor take responsibility for any charges that would take place if we forced a transfer. Amazingly enough, they had deemed the notion of my nearly crippled wife being with her twenty-nine week old preemie as not being "medically necessary". The actuaries that make such decisions either must no have mothers, or are childless, because no matter how many decimal points you carry to justify such a policy, there is simply no mathematical reasoning to substitute for human decency. So my wife and son remained separated for three weeks, until my wife was discharged. Until then we brought photos of baby Anthony to her hospital room to help her produce breast milk, which we then transported in iced zip lock bags across town to the NICU.
My mother-in-law practically moved into our home then, and we struck a sort of silent deal. She would watch over her baby, and I would watch over mine. We also agreed that she would cook a lot, and I would eat what she cooked. I still have the extra ten pounds to prove it. We actually rotated between hospitals throughout the day, three times. No one would be left without company for long, be it Maxime in her desperate solitude or Anthony in his desperate situation.
And so it went until my wife was discharged. She, of course, demanded to be taken to Anthony immediately, even if she could barely move or get into or out of a wheelchair. By then it was apparent that the very same fibroids that had cramped Anthony's development were now making it nearly impossible for her uterus to heal from the c-sections. But when she finally was wheeled up next to Anthony there was no mistaking the magic of the moment. The nurses removed him from the incubator and placed him in her arms, and Anthony slept peacefully as his mother wept silently.
Anthony slowly progressed. There were no brain bleeds and he was weened of oxygen slowly. His bouts with sleep apnea were pervasive for almost a month, but finally his brain learned to keep those lungs pumping, even in the depths of his sleep. He had one eye that was turned in, the early signs of strabismus. Beyond that, it seemed that he was fine.
Finally, eight weeks after his birth, Anthony came home. We placed him in his car seat on the front porch of our house and snapped a photo.
It was as if he had summited Everest.
His little hand grabbed my thumb and held tight. It was as if he was saying, from the start, not to give up on him. I never have since.
That was the first day of what would be an eight week adventure. There would be feeding problems and sleep apnea, fear of brain bleeds and a whole host of other issues that the doctors were obliged to warn us were a possibility. The NICU is not a place of promises. As an outsider it is hard at first, becoming inoculated to all the medical terminology is difficult enough without also getting a crash course in the emotional neutrality that I guess a career in medicine requires. But you learn to not begrudge them the distance they need to do their jobs properly, even if the patient in question is your own child.
My wife remained at the original hospital where the birth had taken place. The insurance company would not approve her transfer to the new hospital, nor take responsibility for any charges that would take place if we forced a transfer. Amazingly enough, they had deemed the notion of my nearly crippled wife being with her twenty-nine week old preemie as not being "medically necessary". The actuaries that make such decisions either must no have mothers, or are childless, because no matter how many decimal points you carry to justify such a policy, there is simply no mathematical reasoning to substitute for human decency. So my wife and son remained separated for three weeks, until my wife was discharged. Until then we brought photos of baby Anthony to her hospital room to help her produce breast milk, which we then transported in iced zip lock bags across town to the NICU.
My mother-in-law practically moved into our home then, and we struck a sort of silent deal. She would watch over her baby, and I would watch over mine. We also agreed that she would cook a lot, and I would eat what she cooked. I still have the extra ten pounds to prove it. We actually rotated between hospitals throughout the day, three times. No one would be left without company for long, be it Maxime in her desperate solitude or Anthony in his desperate situation.
And so it went until my wife was discharged. She, of course, demanded to be taken to Anthony immediately, even if she could barely move or get into or out of a wheelchair. By then it was apparent that the very same fibroids that had cramped Anthony's development were now making it nearly impossible for her uterus to heal from the c-sections. But when she finally was wheeled up next to Anthony there was no mistaking the magic of the moment. The nurses removed him from the incubator and placed him in her arms, and Anthony slept peacefully as his mother wept silently.
Anthony slowly progressed. There were no brain bleeds and he was weened of oxygen slowly. His bouts with sleep apnea were pervasive for almost a month, but finally his brain learned to keep those lungs pumping, even in the depths of his sleep. He had one eye that was turned in, the early signs of strabismus. Beyond that, it seemed that he was fine.
Finally, eight weeks after his birth, Anthony came home. We placed him in his car seat on the front porch of our house and snapped a photo.
It was as if he had summited Everest.
Monday, October 29, 2007
When Anthony Was Born (cont.)
I remember my mother-in-law that night, in perpetual motion; pacing and praying. Back and forth, up and down the hall just outside the delivery room. Pacing. Praying. Not just any old praying though. No. This was the very definition of fervent prayer; intense at just above a whisper, a focused dialogue with a God she was determined to engage, here in this place, where the lives of both her baby and her grand baby were hanging in the balance. My mother-in-law passed away last year. The church overflowed with many kind people who came to her funeral and shared memories of her. An entry from her journal was read aloud, from the day she learned that her cancer was terminal, and it was a strong testimony to her faith. But to me the greatest memory of Carol will be of that night, in that darkest hour, in a strong sort of agony, talking to God.
Whatever she did, it worked. That our doctor was able to make it to the hospital before Anthony came out was the first miracle. Maxime's labor simply stopped, this despite the fact that all the nurses were sure the baby was coming "any second". Time simply froze for both mother and child. Heart rates stayed normal, everyone caught their breath and when the doc arrived and the crash unit was called in....still, time froze. It did not seem possible, to anyone, save for a woman just outside the room who simply would not stop pacing.
The c-section began when the crash unit arrived. At this point it was discovered that our baby was, as the doctor described it, "inside of a loofah sponge". We knew my wife had fibroid tumors. We did not know she had over a hundred of them, from the size of grapes to the size of plums. That our child had managed 29 weeks in there was the second miracle of the night. But things then took a turn for the worse as, try as she might, forceps and all, the doctor just could not get our baby free from that loofah sponge. Having cut horizontally for the first c-section, she now made a second incision, almost in a panic, this time vertically, directly across the uterus. The room was not silent. Trained professionals as they were, they knew they were in a race against time. Mild curse words were muttered beneath their breaths. The crash unit waited in the background led by, I would later find out, one of the foremost doctors in the field of premature babies, a slight man with a beard and soft eyes. But this was not his game. Yet. This was my wife's OBGYN's game, and she was struggling. At some point it became now or never. I saw it in her eyes. My son still has the forceps scar on the side of his stomach to prove it. She went in and she grabbed hold and she pulled for dear life, and out came a little doll that was limp as could be, a mass of human flesh that was whisked so quickly to the crash team unit that I barely caught a glimpse.
If not for the click and whir of some of the machinery around us I would have been positive that I had been struck deaf at that moment. Nobody was talking. Not a sound. Then my wife began to cry and ask if the baby was OK. She was begging for an answer, and no one would give it. I was there but I wasn't, I was holding her hand but I wasn't. I had drifted to some far off place where I could handle what was or was not to come, that place named "This Isn't Really Happening". I heard the crash team struggling, I heard orders being given and instruments being banged about.
Good things come in three's, they say. Miracles rarely so. One in a lifetime is usually sufficient. But when you have an angel in the hallway rattling the gates of heaven for help, miracles can come in three's too.
Our third miracle was one that never should have happened, and that would by its very nature make it a miracle. It was the wayward cry of a newborn baby, loud and sharp, the likes of which is rare in a 29 week old who should not have lungs that are developed enough to do the deed. With that cry the room erupted with sighs and cheers of relief and I will never forget....no, I think it will be one of my final memories when I die...the words of that crash team doctor as he held our baby up to us.
"You have son. It's a boy."
In the hallway a mother-in-law stopped pacing as a daddy did his touchdown dance in the delivery room, and a little baby boy confirmed with all the strength his little body could muster in those first cries that prayers are never in vain, and that God is always listening.
Whatever she did, it worked. That our doctor was able to make it to the hospital before Anthony came out was the first miracle. Maxime's labor simply stopped, this despite the fact that all the nurses were sure the baby was coming "any second". Time simply froze for both mother and child. Heart rates stayed normal, everyone caught their breath and when the doc arrived and the crash unit was called in....still, time froze. It did not seem possible, to anyone, save for a woman just outside the room who simply would not stop pacing.
The c-section began when the crash unit arrived. At this point it was discovered that our baby was, as the doctor described it, "inside of a loofah sponge". We knew my wife had fibroid tumors. We did not know she had over a hundred of them, from the size of grapes to the size of plums. That our child had managed 29 weeks in there was the second miracle of the night. But things then took a turn for the worse as, try as she might, forceps and all, the doctor just could not get our baby free from that loofah sponge. Having cut horizontally for the first c-section, she now made a second incision, almost in a panic, this time vertically, directly across the uterus. The room was not silent. Trained professionals as they were, they knew they were in a race against time. Mild curse words were muttered beneath their breaths. The crash unit waited in the background led by, I would later find out, one of the foremost doctors in the field of premature babies, a slight man with a beard and soft eyes. But this was not his game. Yet. This was my wife's OBGYN's game, and she was struggling. At some point it became now or never. I saw it in her eyes. My son still has the forceps scar on the side of his stomach to prove it. She went in and she grabbed hold and she pulled for dear life, and out came a little doll that was limp as could be, a mass of human flesh that was whisked so quickly to the crash team unit that I barely caught a glimpse.
If not for the click and whir of some of the machinery around us I would have been positive that I had been struck deaf at that moment. Nobody was talking. Not a sound. Then my wife began to cry and ask if the baby was OK. She was begging for an answer, and no one would give it. I was there but I wasn't, I was holding her hand but I wasn't. I had drifted to some far off place where I could handle what was or was not to come, that place named "This Isn't Really Happening". I heard the crash team struggling, I heard orders being given and instruments being banged about.
Good things come in three's, they say. Miracles rarely so. One in a lifetime is usually sufficient. But when you have an angel in the hallway rattling the gates of heaven for help, miracles can come in three's too.
Our third miracle was one that never should have happened, and that would by its very nature make it a miracle. It was the wayward cry of a newborn baby, loud and sharp, the likes of which is rare in a 29 week old who should not have lungs that are developed enough to do the deed. With that cry the room erupted with sighs and cheers of relief and I will never forget....no, I think it will be one of my final memories when I die...the words of that crash team doctor as he held our baby up to us.
"You have son. It's a boy."
In the hallway a mother-in-law stopped pacing as a daddy did his touchdown dance in the delivery room, and a little baby boy confirmed with all the strength his little body could muster in those first cries that prayers are never in vain, and that God is always listening.
Saturday, October 27, 2007
When Anthony Was Born...
You can prepare for a lot of things in life. A premature baby is not one of them. It happens, and for everyone who goes through it the experience is a bit different, but often the same. First comes panic, then fear...and then an odd sense of calm as the shock sets in. For my wife and I it was a barely orchestrated chaos that included ominous words like "footling breach" and "minimal time" and "NICU crash unit". We had minutes to learn a new language, assess how our lives were now completely out of our control and to pray for our child, this tiny life that had somehow arrived eleven weeks early.
Before long there was a whirlwind of doctors and nurses and this was very odd, because it was a small hospital, and it was 3am. Maybe it was because I was a man and the world to me is often viewed through a business-like prism, but that was when I first became frightened. I mean, this was just a birth, right? Yeah my wife was going to need an emergency c-section but those happen all the time, right? Yeah my son was coming early but that happens all the time too, right? So why all the labor hours (no pun intended) over my wife? Why all these extra people, clocking all this extra time (overtime no doubt), and why was her doctor being called from home straight out of bed at 3am? This was Los Angeles. There were plenty of doctors on staff right here. And I had the oddest thought, one word really: liability.
It was a cynical thought but I felt in my gut that the simple act of scrambling to get my wife's own doctor there at such an odd hour was sudden proof that everyone in the room felt that this was all going to go terribly wrong, and no one wanted the responsibility. So we waited, and when the doc finally arrived she rolled up her sleeves, looked at all the paperwork and then looked at my wife....then she calmly asked the head nurse to call over to Huntington Memorial Hospital in Pasadena. We would "need the NICU crash unit". The baby might have to go by helicopter or ambulance "once it was born". I froze. Up until now, in all of our appointments with her, our doc had always called our baby "him or her" or "he or she".
You know, like at the end of the sonogram when everyone wants to keep it a secret, the doctors say "he or she" is doing quite well or "the baby, him or her, is moving". Now my child had become an "it". And therein was born my second cynical thought of the night: our doctor was already getting some emotional distance from the baby, our baby, should "it" die.
And so we waited, for whatever forces in the universe, human or otherwise, that were going to take their places this night, on this stage, of what was now beginning to appear less like a play, and more like a tragedy.
Before long there was a whirlwind of doctors and nurses and this was very odd, because it was a small hospital, and it was 3am. Maybe it was because I was a man and the world to me is often viewed through a business-like prism, but that was when I first became frightened. I mean, this was just a birth, right? Yeah my wife was going to need an emergency c-section but those happen all the time, right? Yeah my son was coming early but that happens all the time too, right? So why all the labor hours (no pun intended) over my wife? Why all these extra people, clocking all this extra time (overtime no doubt), and why was her doctor being called from home straight out of bed at 3am? This was Los Angeles. There were plenty of doctors on staff right here. And I had the oddest thought, one word really: liability.
It was a cynical thought but I felt in my gut that the simple act of scrambling to get my wife's own doctor there at such an odd hour was sudden proof that everyone in the room felt that this was all going to go terribly wrong, and no one wanted the responsibility. So we waited, and when the doc finally arrived she rolled up her sleeves, looked at all the paperwork and then looked at my wife....then she calmly asked the head nurse to call over to Huntington Memorial Hospital in Pasadena. We would "need the NICU crash unit". The baby might have to go by helicopter or ambulance "once it was born". I froze. Up until now, in all of our appointments with her, our doc had always called our baby "him or her" or "he or she".
You know, like at the end of the sonogram when everyone wants to keep it a secret, the doctors say "he or she" is doing quite well or "the baby, him or her, is moving". Now my child had become an "it". And therein was born my second cynical thought of the night: our doctor was already getting some emotional distance from the baby, our baby, should "it" die.
And so we waited, for whatever forces in the universe, human or otherwise, that were going to take their places this night, on this stage, of what was now beginning to appear less like a play, and more like a tragedy.
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