This
book does not try to tell you how you should feel or what you must do.
Rather, it strives to describe and affirm the wide range of experiences
and emotional reactions that can follow a pregnancy crisis and premature
delivery, and to offer strategies for coping with the hospitalization,
homecoming, and parenting of your premature baby and child. With factual
information and the words and insights of other parents, you can establish
realistic expectations for yourself. You can also gain reassurance that
you are not crazy; you are not the only one who feels betrayed, terrified,
or guilty. You are not the only one to be wary of the tiny creature in
the incubator, to wait and worry for the arrival of each new milestone,
or to compare your child to both fellow premature babies and his or her
full-term peers. This book is meant to help you through your experiences,
at the same time encouraging you to do what you need
to survive this journey. Whether your baby was born recently or long ago;
extremely or moderately early; spent days, weeks, or months in the hospital,
you will find yourself reflected in these pages. Whatever your child’s
outcome, you will find support.
We also encourage you to use
this book as a source of information to share with others as you see fit. Certain
sections may offer suggestions you’d like your friends to have or insights
you’d like to share with your family’s health care providers. You
can also photocopy the appendices for those who are interested.
And even if your partner isn’t
the type to read this kind of book, try offering selected sections or chapters
that are particularly relevant. Having this direction and focus can make reading
more appealing and manageable, even to those who don’t usually turn to
books for support.
You may find yourself wondering about the parents whose quotes are used in
this book. Quotes were collected over a period of six years. Parents were recruited
through newsletters and word of mouth, and their interviews were videotaped.
Other parents discovered our online questionnaire in their Internet searches,
wrote their stories down, and sent them to us. Still more parents were participants
on the leading Internet parent support group "Preemie-L" at www.preemie-l.org.
Because information for this
book was gathered from many different parts of the world through e-mail, colloquial
terms appear in some of the quotes. However, we standardized the various terms
for NICU and incubator for consistency. For some parents, English was not their
mother tongue, so you may notice some slightly atypical phrasing, which we kept
in the interest of retaining their unique voices.
Some quotes were written and
others were spoken, so you may detect a variation in tone. All quotes were transcribed
from videotaped interviews, written questionnaires, and Internet correspondence,
with minimal grammatical editing for clarity. Some parents contributed over extended
periods of time, so if you detect any inconsistencies in certain parents, it’s
because their words offer different perspectives according to different points
in their journey. All parents were quoted with their explicit consent.
You may wonder about the situational
details surrounding these parents and their premature babies, or you may want
to know more about what happened to them down the road. You may want to measure
your circumstances, outcomes, and reactions against theirs. But each family’s
situation is so unique that even if you knew all those details, making comparisons
with another family’s journey, as tempting as they are to make, can interfere
with your appreciation of your own unique
journey. Thus, this book does not dwell on situational details, which vary widely.
Though you may hope to find yourself or your child in those details-such as specific
pregnancy complications, a baby born at the same gestational age as yours, length
of hospital stay, or developmental outcome-where you will actually find yourself
is in the emotional nuances of other parents’ experiences. This common
ground is also where you will find kinship with other parents and truly know
that you are not alone. And so, when you wish you knew "the rest of the
story," keep in mind that you already know about the most important parts
of their journeys-the emotional, wrenching, life-enriching, deeply meaningful
parts, many of which may resonate for you. And what matters most "down the
road" is that these parents are continuing on their journeys, and they’ve
survived. Just as you will.
