The Miracles of Our Lives

NICU reunion time rolled around again, but this is the year the experience finally struck a raw nerve. This was our third such biannual event: I'd have thought the emotions would have faded some by now. Yet, as I was asked to sign the "graduate's" name, and I had to sign in twice, the tears welled up in my eyes and I felt a familiar lump in my throat. Maybe it was that overwhelming sense of relief that it really was over and all turned out relatively well for us, or the knowledge that not everyone's story turned out as happy as ours. It could have been a result of the next door neighbor's sudden inquiries about premature babies, after one of the children at her babysitter's suddenly had a one pound baby sister and hysterical parents. It also was possible, that as a federal employee, I was still reeling from the repercussions from the bombing in Oklahoma City on April 19, which delivered an undeniable reminder of my own mortality coupled with the great emotional burden knowing that some of those children killed and orphaned were just like mine, or could just have easily have been mine. But, I really feel it was a combination of all of these things welling up, coupled with the warm, wonderful feeling that accompanies seeing some of the staff that helped us through our first and then second "preemie" experiences. Whatever it was, I'm glad that we have the opportunity to give thanks to those who deserve it, and a special time to stop and reflect on just what "miracles" we have been allowed to experience in our lives.

Billy, our oldest "miracle", was supposed to have been born on Labor Day in 1990. He chose Memorial Day instead. At 26 weeks gestation, he weighed just one ounce more than two pounds. He had no lungs to speak of, and since we had no warning signs that this could happen, no one had time to prepare physically or emotionally for his arrival. It was the perfect pregnancy that didn't end so perfectly for no apparent reason. He was born just four hours after the membranes unexpectedly ruptured: four hours which lasted an eternity while we were living them. Now they kind of fuzz up in the entirety of the feeling associated with the moment that the little purple guy came into our world. One moment he was there, tiny flailing arms and legs, with his kitten like squeak, only moments later to be whisked away in a flurry of activity to a plastic box that would become his home for the next eleven weeks.

I was released from the hospital on the second day after his birth, and had two weeks to recover before returning to work. Small babies take less physical recovery time than their larger counterparts, so I was told. I spent hours on end with him those first two weeks: talking to him, holding his fragile little hands, listening to all the bells and whistles signifying that he was in some sort of distress, even nudging him to start his breathing again when he forgot to do it on his own. His Dad was a nervous wreck around him. He loved his son, of that I had no doubt, but how he could express this love was a mystery to him. Billy's whole body could have fit in one of his hands, and his skin was so transparent and thin that the lightest touch could irritate him to the point where he would set off all of the monitors connected to him.

I began to feel as though I was forcing Bill to spend his evenings at the hospital, but as much as I could not bring myself to leave, he could not bring himself to go. And, when he did go, it seemed like he no more than got there than he was ready to leave. He couldn't watch our son struggling to stay alive, and I died a little each time we had to leave him there. Although I couldn't imagine how, it got even worse after I went back to work. Go to work, breast pump in tow, deliver what little milk I could extract during the day to the hospital, spend some time with my son, go home and struggle through another night, several of which were nearly sleepless for me. When I couldn't be there in person, I called. It was a grueling schedule, but I was a woman possessed with the love of my child. I would have done anything for him. I was so totally consumed by the feelings that I must not have been much of a wife to my husband, but we somehow managed to support each other. When I was having a bad day, which was more often than not, Bill's sense of humor and strength got me through. When he was having a not so wonderful day, I managed to muster what strength I had to bolster his spirits. It was a very difficult time for all of us, physically and emotionally.

Then in the 4th week, when I couldn't even produce enough milk to feed our son's tiny little body, I was devastated emotionally--once again, I had failed as a mother. I had failed my son. It was at this point that I really hit an emotional bottom. I just couldn't give up when my husband started questioning the need to put myself through such emotional torture. Bill never really understood why I insisted on putting myself through the ordeal in the first place, and saw how I was struggling to produce even a little milk for our son. After all, that was what formula was for. I just couldn't explain that this seemed to be the only normal thing that I could do to for Billy, since I had failed so miserably at everything else. However, after a whole weekend basically spent like a cow on the milking machine with no results, I resigned myself to the fact that I just could not continue like this for the sake of all concerned.

The only real consolation I got for this set back was a night 3 weeks later when Bill convinced the nurses that I should get to hold my baby for the first time. Never having been allowed to actually hold my child was probably the hardest thing I had to deal with emotionally--I understood the reasons why, but it didn't make the situation easier. I was grieving for the loss of a potential new life and fighting a particularly nasty bout of post partum depression. I cried a river of tears when no one except my husband and I could understand (sometimes even he didn't understand). I was ashamed of my failure as a mother-I was responsible, somehow, for all my child was going through, and no one could console my grief and disbelief. I couldn't be enough, do enough, or begin to live up to my own expectations of motherhood. I guess the nurses hadn't realized that I had never held him before, or they didn't seem to care when Bill had mentioned it a couple of times before this. This tiny little "doll" that I had been playing with behind glass walls finally became my son, a real human being, when placed in my longing arms. And, some of the guilt and self-inflicted devastation melted away in that single moment.

I had also learned, first hand, about the preemie alphabet (a is for apnea and b is for bardycardia, c is for cerebral palsy...) and shear panic. This is not how motherhood is supposed to be, I kept thinking. Yet, I was a mother, and this is how it was for me. There was no joy in watching this fragile little body day after day, first with his little eye shades velcroed to his tennis ball sized head to protect his eyes from the lights that were turning his little jaundiced body to a brownish-pink hue. Between the "shades" and that respirator tube taped to his top lip, along with all its paraphernalia and implications, there wasn't much face to look at. The monitor patches covered most of the remaining parts of his naked little body, and IV needles and their trappings covered the other available places. He was a pitiful sight to those who didn't know him or love him as we did. We were even approached by someone seeking consent to have his pictures taken in an effort to train some of the specialists about the care of such a tiny being. Nothing ever came of the offer, but it only served as a reminder to me of how little and helpless he was.

Billy taught us a few things, too--to have faith in the God who gave him to us, faith in the doctors and nurses who watched over him, and faith in his abilities to adapt. Billy was a fighter; he was a survivor; but, and most of all, he was mine. To hear his father talk about the experience now, that purple, tiny, fuzzy little guy with the kitten-like squeak was the most beautiful baby in the world. And, he was, if only to us--we could see the child beneath the equipment, we could love him despite the fear and apprehension. And the emotional walls we tried to build to prepare and protect ourselves for what we felt, but never voiced, the "inevitable" outcome would be, melted away with the first time he wrapped those tiny fingers around our huge index fingers. It felt like a reassurance that there was hope beyond all odds--his reassurance to us that he wouldn't give up as long as we didn't give up on him. And that first smile we got while holding him in our arms made us know that we were a family--his family.

We were lucky--not many set backs, not very long in the hospital compared to some of his roommates. He came home three weeks before his due date, weighing all of 5 pounds, after having a double hernia repair. He was so tiny to everyone--everyone except us, that is. Our small home seemed like a three ringed circus with all the comings and goings. Most of our invited visitors were concerned family and friends, but I'm sure that he was somewhat of a curiosity, even to them. Billy was home, and he was ours--ours alone, so we thought. Between just the weekly weigh ins and the normal well-baby doctor visits, the preemie follow-up clinics, the visits from the medical supply company supplying his oxygen and apnea monitors, we were far from alone with our precious little bundle, although there were times that we felt totally alone in a helpless sense.

I know there were lots of times that I felt totally alone--we had brought home 5 pounds of baby and 100 pounds of equipment and literature. His feedings were every three hours round the clock--that was 3 hours from the start of one feeding to the start of the next feeding. Sometimes, his 2 ounces of formula took over an hour to finish. Then, there was a whole series of medicines to give him on top of all of this. Of course, they couldn't be timed to correspond to his feedings. Then, there were the normal things, like bath time, that weren't normal either--he fit in the bathroom sink much too small for me to wash my hair in, with lots of room to spare. However, this slippery little body still was connected to the oxygen tank, and had to be reconnected to the monitor as soon as the fun was over. Bill was working, trying to keep things going. I got a reprieve on a couple of feedings in the evening when he was home, but for the most part, there was no rest and no breaks for a solid month.

Thanks to the fact that his hospital stay had detained him for so long, and the fact that I had used up all of the time off I could get without jeopardizing my job, I had to go back to work. I had to keep the health insurance in force, as we already were realizing that this was no normal child. Along with the abandonment emotions I was experiencing at having to leave this small bundle in someone else's care, I had other trials to face. The daycare experience, such as it was, was an experience and education for all concerned. Everyday, I hauled a portable oxygen tank to his strategically placed crib and strapped it to the inside of the back of the crib so that curious little fingers could not reach the valves and adjust the settings. Then, I had to hook up his apnea monitor and go through the test sequence, making sure that everything was functional. Finally, the last instructions, and last worried look of the day, as I left him in the hands of virtual strangers. I had nowhere else to turn, although I always had an uneasy feeling when the phone rang at my desk, and when I first entered the daycare in the evening to pick him up. "Beepin' Bill" became his nickname at the daycare, although the explanations as to what was going on when he set off the monitor seemed inadequate, at best. There were times when the explanation was clear--monitor pads do not work when they are stuck to pajamas instead of kids, or stuck on knees instead of under the arms. It was those days when there was no ready explanation that bothered me most. There was a constant fear that I was not doing the best I could for him, that I should be there for him every moment, not just when it was convenient for my working schedule. But, again, this was the reality of the situation, not the ideal. He was growing despite my concerns about the quality of daycare nurturing aspects, and we were paying the bills, the more urgent issue of the time.

Just when things were getting into some sort of routine lull, in October, Billy's head began to grow at an alarming rate, leading to more ultrasounds, more specialists, more appointments. We had traded the talk of spontaneous brain bleeds, ROP, or other "preemie" ailments for hydrocephalusis", the new crisis at hand. The little boy with the tennis ball sized head now had a head that was too large for him to hold up on his own if he had been attempting it at all. Even though the oxygen came off, along with the apnea monitor, and the ROP had resolved itself, by Thanksgiving, we felt the pressure and tension of another set back. However, by Christmas, his head growth had stopped its alarming rate, so we breathed a little easier, and enjoyed our first Christmas with our son.

This crisis behind us, in January 1991, his grandmother pointed out that one side of his face was growing much faster than the other. We were just too close and just to happy to even notice the changes that were taking place. And, while the reality of that was setting in, we all had to admit his development of motor skills was pretty sluggish. Lots of tests, lots of doctors, lots of time, two solid years of ear infections, and even more worry. This was followed by even more tests, time, doctors, and diagnoses we weren't prepared for. Cerebral palsy--a heart-wrenching word, with no explanation. I remember that day well-I went home with the news. Through the tears, I somehow choked out the words to my husband. All I could tell him was what I had been told, which was a label to us; a meaningless, merciless label. This child, who had already endured more than any of us adults could or would in a lifetime, had acquired a label that signified to us (the undereducated) a lifetime affliction. What a burden for such a small child to carry. What a sense of despair. Well, I guess God must have a sense of humor after all. Through some occupational and physical therapy sessions provided by the First Steps program after the insurance stopped paying, and a little more time, energy, and by now a healthy sense of skepticism, by the time he was two, Billy was again reassuring us that if we only had faith in him, he'd keep trying and succeeding. By the time he was three, he was pronounced "normal"-whatever the magical "normal" standard is measured by. I finally stopped grieving for the loss of what might have been, and the "If only I'd have...." mentality.

When Billy was nearly 2 1/2, we discovered that there would be another baby added to our little family. We were apprehensive, at best. What if we had another Billy? How could we have anything left for a second child? How could we love and sacrifice for a second baby like we had for the first, and with the first still needing all of this at the same time? We hoped and prayed for a girl-maybe a child of a different sex would separate the feelings and magically equalize our ability to love both. The first time I heard the heartbeat, I knew it was another boy, although my husband held on to his dream of a daughter until the 24 week ultrasound showed an appendage not associated with femaleness. This pregnancy was not so uneventful. I started spotting at eight weeks, and there was a real concern about possible miscarriage. Then, everything settled into a "watch and wait" mode, ending in a doctor's optimistic professional opinion that this would be a full term pregnancy. My healthy skepticism for "the norm" did not disappear. If I had learned nothing else, I learned that "normal" is defined on a sliding scale depending on who was trying to pinpoint it at a certain point in time.

I found myself measuring milestones in the second pregnancy- "When I was this far along with Billy, this is how things were." Right after the 24 week ultrasound, I was approached by Billy's occupational therapist to tell "our story" to a group of 30 medical students. The catch was an emotional one for me-it was scheduled for that 26 week milestone. Despite the doctor's optimistic outlook for a full term pregnancy this time, I held the knowledge that if I could make it to that point, I knew medical science could help make up for what I could not do on my own-I had prior experience with this. I normally am a private person and the fear of public speaking was ever-present. Yet, for the sake of all the future Billy's and their parents, I could not keep silent. I told those people all about the emotional effects of secrecy, of snap-judgements and wrong diagnoses, of not considering alternate forms of treatment (Billy's misshapen head and face were treated by a physical therapist's touch, not a complicated surgical procedure followed by several plastic surgeries to hide the scars.) I told them about how he was "Denver-tested" to death-the child got test-wise after the third time. He knew what it meant if someone strange came to the house with a bag of toys. He also knew exactly what toys should be in that bag, and what he wanted to play with. And, I told them, that as a parent, if I don't realize when enough was enough that they as professionals needed to know when it was time to back off and let mother nature take over. I explained my most frustrating thought-why should my child be expected to be "perfect" and do everything in accordance with a timetable contrived by another group of so called medical experts, when parents of "normal" children are always told not to worry-the child will do whatever when they are ready and not a moment before. We were just happy that he was alive, and that he could do anything--we weren't expecting "perfect". If nothing else, I am glad I took advantage of the opportunity to make them think about these things, if only for one fleeting moment.

Travis was due 10 days before Billy's third birthday, which should have been May 20, 1993. I really didn't savor the idea of having two birthdays so close together, but, not to worry--he chose April 5th, the 32nd week of gestation. A little over two hours after labor began, we had a whopping 4 pounds 12 ounce boy. He was nearly the size that Billy had been when he came home from the hospital--to us, he was a full sized baby. He spent 24 hours on a respirator, 24 hours on oxygen. I got to hold him on the third day. I actually got to try to breast feed him the third week. Although I couldn't produce enough milk to feed him, either, this time I didn't have the feelings of failure associated with my last experience, and resigned myself to the fact that the formula in the can was a good substitute. Billy never had the demand for the volume of milk Travis had to have to maintain his weight. Billy's first feedings were a little over a teaspoon in volume, still being measured in cc's when he came home--Travis' went right to the ounce measurements, needing up to 4 ounces per feeding by the third week.

Travis came home three weeks before his due date, just as Billy had. This time, though, we were glad to have the apnea monitor in tow--it was a reassurance that everything would be alright, not the hindrance we had felt it was the last time. This homecoming happened just a couple of weeks before Billy's second NICU reunion. We went, despite the warnings about taking Travis out in public so soon. After all, we were extremely proud of both our boys. Travis may not have been the 7-9 pound baby the doctor was predicting the week before he was born, but he's as close to perfect as I'm going to get.

Miraculously, the answers to our fearful questions became evident. How could we love him as much as our first son? Well, were we ever naive! First of all, he was nearly Billy's twin in looks, just three years younger. Second of all, he's got a spark and a determination that will set the world on fire, and a charm that is all his own. Last, but not least, he's our son, and how we ever thought that could be a hindrance alludes me now. Even if he had not been NICU graduate #2 for our family, he is a miracle in his own right. I don't want to short-change Travis' experience--the a's and b's were there, the worries were there. The milk supply wasn't there to meet his demands, either. But, this time, it wasn't my fault, and I knew it. I had done all I could do for him. I had been the best I could be. And, I had the confidence that I was a good mother after all. Travis was healthier and I was wiser. Travis hasn't been tested to death, like his brother--he is my "wait and see" child. I am more relaxed with his abilities and short-comings, and solaced by the fact he had not had to live through Billy's heart-wrenching, spirit-sapping experiences. And, I am experiencing a life and faith renewed in allowing him to develop at his own pace. The fact of the matter is, there is no comparison here, just total awe.

Billy will start third grade this fall. My bespectacled little angel, with a heart as big as all outdoors worn proudly on his sleeve, has an undeniable compassion for the problems of others. His ankle splints that he once needed for support, were tucked away from site by his never-ending parade of high-topped shoes. The glasses are a result of retinopathy which may have been a result of his premature birth, or may not have been. The ankle splints? Well, if this is his only flaw--flat feet and weak ankles--we're fortunate. His pre-school teachers told me that he could be the smartest kid in his class of 22 when he wanted to be. The important phrase to me was that "he could be". He's an active, imaginative, sensitive child--all boy, with an extra measure of nice.

Travis, who starts kindergarten this fall, has developed his own looks and personality--every inch his own person. All of the terrible two's Billy never went through, plus his own. Physically, he is fine, although the glasses and ankle splints may be right around the corner, and the continuous infections ended in tubes being put in his ears. He is extremely far-sighted, which he inherited from his Mom. He has a streak of goodness that shines like a beacon as soon as the stubborn clouds part. He has always been imaginative, though not overly communicative in his early years--the "Chinese" broke its way into English around the age of three and is still becoming more understandable every day. Who needs to talk when someone is giving you all you couldn't or didn't need to ask for on your own! He's got a spark for life and a charm to carry him through those times when his spark starts a flame at the wrong place or time. Precociousness is probably going to be his trademark, that is, if we feel compelled to put a label on him. Happy, healthy and five--what a wonderful combination!