The Premie Experience: A Note By This Blog Author

Monday, February 29, 2016

A Note By This Blog Author

As I continue to overhaul much (most, actually) of the online-writing (blogs/accounts) that I've done on a casual/free-time basis, I'm finding that the last pages that seem to be getting my attention are blogs that I set up with a focus on a single subject/theme. This is one of those blogs.

This blog, in particular, is in need of some major changes because, with limited free time (which is what my online writing has been), I haven't had the time to work on the "resources" part of the site. As a result (and at least for now), there's more "ancient history" (my own experience) than there should be in order to offer better balance between "resources" and "personal experiences". For now, I've left things "as is".

Not Getting to Hold the Baby

My baby was born on Tuesday, and I spent Tuesday evening and much of Wednesday, with no idea about when I'd be able to hold him. Finally, my doctor came in and commented on the fact that I hadn't yet been able to hold the baby. He said, 'We'll arrange for you to be able to hold him tomorrow.' And so, it was on Thursday that I was finally able to scrub up and suit up, and hold my tiny son. It occurs to me to mention that it kind of felt like getting a gift in November, marked, 'Don't open until Christmas', but it was far lonelier a feeling than that. As it happens, my son was born in early November but had not been due until around Christmas.

Mothers of Premies May Feel They've Betrayed Their Baby

When I got to hold my tiny baby briefly, before he would be placed in an incubator, the fierce screaming he had done from the moment he was born suddenly stopped. Part of me assumed that this tiny creature felt that my voice and arms were enough to reassure him. Still, all I could think about was how my very first act as his mother had involved my apparent inability to let him stay where he was until he was more ready to be born. I knew his premature birth was not my fault, and yet I couldn't help but feel I had betrayed him.

The Things Moms May Not Talk About Much

Each year 467,201 babies are born prematurely in the United States, according to the American Pregnancy Association.

The world is full of people who were born prematurely without serious or long-term consequences, but with premature birth comes a higher risk of serious and/or long-term consequences, including infant death. While the world may be full of people who were born premature without serious consequences, it also has more than its share of heartbroken parents for whom the outcome of pre-term labor was not a successful one.

It was 27 years ago that I experienced, first-hand, the scare of premature delivery. Happily, my son was a healthy premie, who suffered no serious consequences of having been born too early. Hindsight has given me that reassurance. As all parents of premies know, however, there is no benefit of hindsight when a tiny premie remains under special care at the hospital. Neither is there the benefit of hindsight during those first two years; when, even while understanding that premies may not develop at the same rate as full-term babies, parents can have that tense awareness that some developmental or medical problem could reveal itself.

Premature delivery with serious, negative, consequences brings a complicated set of issues for parents and their pre-term babies. With 27 years of hindsight, I've discovered that even pre-term deliveries with wonderful outcomes bring their own set of issues. With benefit of that hindsight, I now realize that even in the case of a pre-term delivery without serious problems the "premie experience" can come in two phases - a "primary" phase, which comes immediately after delivery and continues until time has resolved existing issues; and a "secondary" phase, which might best be described as the long-term, emotional, consequences of having give birth prematurely.

When I was mired in the concerns, worries, and fears associated with having a premature baby it felt as I was "wrapped in a bubble of premature-baby issues". When the two years following his delivery revealed that my little son had only health issues associated with early arrival, and when it became clear that his developmental milestones were reached with the "average" range (with some even showing up early); it felt, to me, as if the "bubble" had fallen away. "He and I," I thought, "are past the premature delivery."

Over the years, like most mothers, I've often been quick to tell the story of my son's premature delivery; but every mother has a birth story of one kind or another. Any time I've ever told (or written) the story, I've always noted that it had been a story with a happy ending. While I suppose it's true that "regular" birth stories end with the delivery of the baby, and "premie" birth stories end once the scare and worries of the early delivery have subsided (which can be months or years after delivery); all good birth stories do come to an end.

That's why when, not long ago, ABC's, "Nightline", aired a program on neonatal intensive care units, I was surprised to discover the degree to which I was "transported" back to my own premie delivery experience. Suddenly flooded not just with empathy for the parents in the piece, but with emotions that were once my own and that I thought had long ago disintegrated; I realized that even when that "bubble" falls away, parents of premies can be left with "tucked-away" and "proven-unnecessary", the experience of having had a premature baby remained with me in ways I had not realized.

The world is full of happy birth stories that are also premie birth stories, but there is a kind of isolation in having delivered a premature baby. That isolation can result from the realities of delivery and the time following it. It can come from having worries that most other parents don't have. It can even come from having a healthy premie and not quite fitting into either the "NICU parents" category or the "full-term parents" category.

This site is intended to address the matter of premature delivery in a way that attempts to help reduce the sense of isolation for (particularly) parents of premature babies.

I'd like to end this introduction by offering to the parents of new premies something that I noticed didn't seem to come often enough for me, and that is words of congratulations that are not weighed down by the too-often somber concerns and tones associated with the birth of a premature baby. So, if your baby has recently arrived long ahead of schedule - Congratulations on the birth of your tiny, beautiful, baby.

THROUGH THE GLASS, OFF TO THE SIDE

My tiny, sweet, little son was born at just past 34 weeks. Fortunately, he was said to be a "healthy premie", so he was able to be kept at the smaller, suburban, hospital in which he was born, rather than be transferred to a NIC unit at a larger Boston hospital.

At the hospital where he was born, there were two nursery sections for newborns - the "main" nursery, and a smaller, off-to-the-side, darker, section; where all babies spent their first 24 hours in an incubator, and where my son would remain until the day before I would eventually bring him home.

Before I was released from the hospital, and before I was allowed to hold my baby, I would, of course, stand at the glass in front of the "special" section of the nursery, looking in at my tiny son. My husband didn't happen to be there one afternoon, as visitors began to crowd the hall by the "regular" nursery glass, in order to see the new babies of friends and relatives. In the crowd there were also parents. Everyone was naturally excited and delighted to be seeing (or showing off) the new babies. There they all were - over at that big, right-hand-side, window - seeming so completely happy and unburdened by worries. There I was - at the smaller, left-hand-side, window - standing alone and trying to see "some sign of something ok" in my tiny baby. A round, yellow-plastic, "face" toy was in my baby's incubator. He wore a pastel green, knit, hat that framed his tiny, red, U-shaped, face as he slept. I was happy for the people at the other glass. I just wished I could be one of them.

Suddenly, a young woman came scooting over to take a look into other smaller nursery. It was as if she had noticed me and thought she may have missed some new babies that were in that part of the nursery. She quickly scooted next to me, took a peek in, and head right back to the bustling group of people. Without any effort to lower her voice, she cavalierly said, "Go look at that little, sick, baby over there." Nobody else came to look at my baby, and I resisted the urge to tell her, "He's not sick. He's healthy. He's just premature." I didn't care what she thought, but neither did I particularly like her cavalier, ignorant, remark and demeanor.

So there I stood, off to the side, longing to see my baby in the "main" nursery, while knowing he was neither sick nor like any of the other babies there. This was the beginning of a long string of such experiences, which showed me how being the mother of a premie can so often meaning feeling just a little "off to the side".

My Premie Story

With the last couple of years the program, Nightline, had a series on babies in the neonatal intensive care unit. At least one was a premie, and as I sat in my living room all by myself, I found myself in tears as I watched the angst of the young mother and father who - although they did get to hold their baby - mostly watched their baby through the walls of the incubator.

My baby, too, was born prematurely, but he was born a healthy premie at 34 weeks. It surprised me that I seemed to be so able to empathize with these parents whose babies were much smaller and sicker than mine had been. What also surprised me, though, was the fact that almost two and half decades after watching my premie boy through the incubator the feelings of the experience still remained close enough to the surface to make me cry just by seeing the way the parents in the Nightline program tentatively reached their hand in to touch their baby and to see the way they had seemed to have become resigned to the idea that they woke up one day and found themselves the worried parents of a tiny creature they couldn't yet quite get to know very well.

I recalled how, as I went into the hospital in premature labor, I had had to develop an almost callous indifference to whether or not I'd leave with a living baby. I actually had a "I'll believe it when I see it" attitude; but, more significantly, I actually had just a hint of an "Its too late at this point" attitude as well. It was preparation. It was what you do when you know you're baby is coming too soon. This was my first delivery, so I already had the difficulty believing I'd actually end up with a baby that comes with a first delivery. It was also, however, my second pregnancy; so I was far more used to a pregnancy that doesn't end in a living baby than I was with bringing home a bundle of joy.

On the cold, crisp, blue-skied, November day I was well aware of feeling that I had failed my baby, and when he was born - alive and kicking and screaming, much to my surprise - my first feeling was sorrow that I had failed to be able to keep him where he was just long enough so he could enter this world as a full-term baby. As I watched the labor room nurses scurry around to do what had to be done for this 4-lb baby that had arrived in only an hour and a half and almost before the doctor had time to show up, it was as if my only awareness was that in this moment of what looked like panic the only thing I could think of was how my first act as his mother was one at which I failed.

As I said, he was a healthy premie. Still, he was kept in the hospital because he couldn't drink very well. He was also losing weight because he was so small he would use up calories he needed just trying to drink. The nurses would gavage feed him and then try bottle-feeding again. He was losing weight consistently, and I was starting to be so afraid that he would just lose weight and lose weight and "vanish" (in my emotional thinking ). My husband and I would go feed a couple of times a day. Scrubbing up before putting on the pale yellow gowns and hats was something which which we became quite familiar. A couple of times a day when I was not there I'd call and ask for the latest weight the nurses got. Just as he was about to dip to his lowest weight he gained just the tiniest amount, but that was the beginning of his consistent weight gaining.

He was 4 lbs 8 oz when I got to bring him home one day after he was removed from the incubator. I filled out a few forms that the hospital would give the state because the state was following up on how many premies develop deafness or other problems, and I dressed my tiny boy in clothes that were way too big for him, packed up the special premie diapers and premie mini-bottles the hospital gave me and brought him home. The neighbors weren't peaking out the curtains that day. They did that the day I had come home from the hospital after having him, carrying only flowers.

I stuffed the fear that had become so much a part of me in the back of my mind and went on to enjoy life with my beautiful, baby, boy almost as every other mother does. Still, though, I watched for his reaching of milestones with a little more awareness than mothers with full-term babies tend to. There were a few more infection crises in the Winter, and there was the fact that he remained too small for the baby equipment for which his age had made him developmentally ready. My little boy reached most of his milestones early, and he was good and ready to begin kindergarten at four years old - and do really well there.

Nonetheless, all these years later there are still times when the fear and loneliness of having a premie sometimes leaks back into my mind - the loneliness of not holding my baby for more than a day or so after he was born, the loneliness of shopping for baby equipment while he was still in the hospital and while I still had the hospital bracelet on my wrist, the loneliness of returning home from the hospital without the baby, and the fear and longing that the parents of premie's constantly experience as they watch from much-to-great a distance through the incubator walls. Because worrying about whether he'd grow normally was something so frightening I didn't even talk about it, there was also the loneliness of waiting for each milestone and not putting into words the thing that made me hope he'd reach each milestone on time.

Three years later I gave birth to my beautiful little 5 lbs 13 oz girl at 37 weeks after she threatened to be born even earlier than he had been. The doctor celebrated the 37-week delivery as if it were a victory, and I got to hold my baby and change her and bring her home with me when I went. My neighbor sat in her window as we drove up, and I got out with my arms full of baby and pink blankets and pink balloons and flowers; and I finally knew what it felt like to do having-a-baby the way everybody else does it (or the way it feels everybody else does it when you've had a premie).

When I brought her home I finally knew what it was like to not have the fear and the isolation that can come with delivering a premie. but I think once I had experienced what I had missed the first time I almost grieved a little all over again because I realized what I did not and would never have when it came to delivery of my earlier baby. What makes me think of all the circumstances surrounding my daughter's birth is seeing young women expecting their babies or bringing them home or buying things for them. Whenever I see a bunch of pink balloons I think of when she was born. What transports me back to the time surrounding my son's birth is seeing news programs covering worried parents who wait in waiting rooms and reach their fingers in to touch a hand so tiny you can't believe its human.

My son has always been a tremendous, tremendous, joy to his father and me. He's grown to be such a fine and handsome young man; and I don't mean to imply that he's ever brought anything but joy. Still, when times happen like the night I was watching Nightline and the tears began to flow in a way I never would have imagined it makes me realize that delivering a premature baby has a legacy that lasts long after the child has graduated college. I think maybe that when it was all happening to me I didn't allow myself to cry for myself because I was only thinking of my baby. Maybe it took me that two decades to finally let myself cry for me.

The Premie Experience

INTRODUCTION

USEFUL LINKS

MAYO CLINIC

THE MARCH OF DIMES

Prematurity.Org

AMERICAN PREGNANCY ASSOCIATION

KIDS HEALTH

A Cute Collection of Clothes for Premies

Talk and Listen to Other Mothers

Monday, February 29, 2016

A Note By This Blog Author