Parenting Your Premature Baby and Child: The Emotional Journey this question feed

asked by glassysurf on October 30, 2006 2:04 PM
The premature birth of your baby or babies is a medical crisis. But more than that, it is a family crisis. When your baby* is born too soon, you must face not only the medical aspects of prematurity but also the many emotional aspects of parenting your premature baby. During hospitalization, after homecoming, and perhaps throughout childhood, there are three overarching, emotionally intense challenges you face:

1) Coping with feelings, which includes moving through your grief, adjusting, and coming to terms with your baby's premature birth and its consequences

2) Developing your parental identity, which includes feeling connected to your baby, playing an indispensable role in the NICU, and becoming the kind of parent you want to be

3) Managing your relationships, which includes communicating with your partner, with other family members and friends, and with your baby's health care providers

This book addresses all these challenges, and more.

Indeed, this book rides on the crest of a new wave. In recent years, neonatology has become much more than medical technology. Along with providing state-of-the-art interventions, more and more NICUs are also providing developmentally supportive care to babies-and to their parents. Developmentally supportive care for a premature baby consists of close contact with the parents and being surrounded by the muted, gentle, nurturing conditions that mimic the womb. Developmentally supportive care for parents consists of honoring their need to get physically close and feel emotionally connected to their newborn and become confident in taking care of this baby. In other words, developmentally supportive care tries to give babies and parents what they've been promised.

Instead of banishing parents to waiting rooms or allowing them to merely look through a plate-glass window, modern NICU policy welcomes parents as integral members of their baby's NICU caregiving team and considers parental involvement paramount-good for the babies, good for the parents, good for the family. Indeed, when parents are given opportunities to be close to their baby and are encouraged and coached in caregiving, they can become attuned, responsive, and sure with their little one. When parents are informed about their baby's conditions and treatments, they can advocate for their baby's needs. When parents are supported emotionally, they can be more emotionally available to their baby. These positive, connective emotional experiences between parent and baby contribute to optimal infant development. This book reflects and accompanies the emerging respect for the developmental needs of the entire family and the spreading philosophy of family-centered care.

There are many good books that explain your premature baby's medical conditions, developmental diagnoses, treatments, and procedures, and that guide you in caregiving tasks. This book is different. It focuses on your experiences, feelings, and relationships around the delivery, hospitalization, homecoming, and long-term parenting of your premature baby and child. It provides suggestions and support for coping, adjusting, and finding your way. It focuses on how you can deal with the challenges you meet so you can revel in the pleasures of nurturing and cherishing your little one. With quotes from many parents, this book also strives to provide you with the comfort of knowing that your reactions make sense and that you're not alone.

While every family's journey is unique, you share many of the same hopes, fears, joys, sorrows, struggles, and triumphs with other parents of premature babies. It is our hope that you will find comfort, reassurance, support, and strength in these pages.

*Usually it is awkward to refer to both singleton and multiple babies in the same sentence by writing "baby or babies" or even "baby(ies) and "child(ren)." So most of the time, we just refer to "your baby" or "your child." If you gave birth to twins, triplets, or more, please know that whenever applicable to your situation, "your baby" or "child" means "your babies" or "children."

Organizing this book was very challenging. There is a time line to follow, but the three overarching themes of "coping with feelings," "developing your parental identity," and "managing your relationships" come up at every turn. At any point on your personal journey, you may feel emotionally overwhelmed, your growth and development as a parent and a person continues, and you will be dealing with your partner, your baby's health care providers, and others. Since books are naturally linear and don't take well to any other arrangements, we encourage you to weave your way through this book to match the nonlinear path your experience of having a preemie takes. Some sections may feel more appropriate than others at different times, depending on your unique situation, your personality, and where you are in your journey. Use the Table of Contents and the Index to find your currently pressing concerns.

As you weave your way through the book, you can also peek ahead into the future for preparation and reassurance, or review the past for validation, affirmation, and to make sense of where you've been and where you are. Take in whatever seems helpful and pass by whatever isn't. Return to the passages that are particularly comforting and try reading other parts later. It is not necessary to read this book through from start to finish. Even if you do read it cover to cover and then put it away, we encourage you to revisit this book from time to time. You'll notice that what you need will stand out every time, and what you need will always seem to be different. This book is meant to be your companion, and it will follow your lead.

If reading this book moves you to cry, try to accept this reaction. These are healing tears of grief and joy, courage and strength that mix with those of other parents. You are not alone.


Reviews

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Don't be daunted by the book's hefty size! This was without a doubt the most useful book of all that I referenced during our two months in the NICU. Other books explain all of the technology, procedures, etc., but this one covers the mental and emotional side of the NICU - handling the one-step-forward-two-steps-back preemie dance, grief at the premature birth experience, anxieties about care, worries for the future, feelings about separation and having others taking care of your child, and the hesitancy in parenting with so many barriers in the way. This book was invaulable during the hospital experience and has been such a help in the homecoming experience. Already I know that this will take us through the next few years, as it also covers topics regarding developmental issues and what to expect as our child grows. In addition to the advice in the book, there are quotes throughout from other preemie parents who have handled all of these issues. This was one book that didn't manage to have anything to scare us; rather it validated all of the feelings we've had. The health care professionals with whom we have shared this book were impressed and wanted their own copies! I can't recommend this book highly enough!
reviewed by ronmiller on November 24, 2006 9:47 AM

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... since this is the *definitive* book for people like me who've been through this life-changing experience. And as an avid reader who's already bought many other Preemie books, I sure don't say WOW lightly.

As other reviewers noted, I too wish I had come across this resource much much sooner. Our 30 week twins spent 8+ verrrrrry stressful weeks in the NICU. The months following their joyful homecoming was (and still is) constantly colored by awareness & vigilance re: issues related to their prematurity.

In particular, this book does a terrific job of validating & acknowledging a parent's feelings that only other families who've been through this journey are going to "get it". I felt like the book often like that song... somebody to lean on.
reviewed by perfectstorm on November 26, 2006 10:04 PM

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