Preemie Resources 5-27-96

Compiled by Mary Searcy MarAim@aol.com
Updates are posted to the Preemie-L mailing list, and the most recent version can be obtained from http://www.vicnet.net.au/~garyh/premres.htm
A related document of interest by the same compiler is the Preterm Labor Resources listing

RESOURCES FOR PARENTS OF PREEMIES

BOOKS AND PAMPHLETS:

"The Premature Baby Book" by Helen Harrison, St. Martin's Press, NY, 1983.

"The Premature Baby Book" is the result of seven years of intense research into medical literature and of interviews with neonatologists, intensive care nurses, social workers, therapists, and hundreds of parents of prematures. From her research and personal experience, Helen Harrison knows exactly what parents want and need to know to deal with the emotional, medical and practical issues facing them after the birth of a premature baby. BLB.

"Your Premature Baby" by Frank P. Manginello, MD and Theresa Foy DiGeronimo MEd., Wiley, NY, 1991.

Usually kept in the dark by busy doctors and hospital staff, "preemie" parents often have nothing better to go on than hearsay and superstition. They feel powerless and become filled with unnecessary fears and anxieties. Now, "Your Premature Baby" arms you with all the up-to-date information you need to weather the often frightening and costly ordeal of birthing and caring for a premature baby. BLB.

"Kangaroo Care" by Susan M. Ludington-Hoe, Ph.D. with Susan K. Golant, Bantam Books, NY, 1993.

If you have just given birth to a preemie infant, you and your baby both face special challenges. Parents long to help their baby but often feel isolated and frightened by hospital procedures.
Now there is wonderful news for both babies and parents. Kangaroo Care, a technique pioneered in leading neonatal centers worldwide, gives you a unique role: a special way of holding your infant that provides crucial health benefts - including shorter hospital stays. Based on ground-breaking research, "Kangaroo Care" is a step-by-step guide to bringing these benefits to your baby - even if your neonatal unit does not yet have a Kangaroo Care program. BLB.

"Born Too Soon, The Story of Emily, Our Premature Baby", by Elizabeth Mehren, Doubleday, NY, NY, 1991.

Less than six months into a long-awaited pregnancy, Elizabeth Mehren was flying across the country when her water broke. She managed to make it home to a hospital in New York, where doctors told her the baby was too small to survive the birth process. But with a hearty cry, a golden haired girl named Emily was born. She weighed just one pound, eleven ounces.
Emily became one of 275,000 premature babies born each year in this country. Her birth plunged Mehren and her husband, fellow journalist Fox Butterfield, into a strange world of very tiny babies housed in clear plastic boxes and kept alive by high-tech medicine. Miracles occurred daily; tragedy, too. For six weeks, Mehren could not even hold her daughter. But with her hand through a porthole in Emily's isolette, she could feel her daughters's powerful grip. This simple act-a small hand clutched around her mother's finger-was their only form of mother-daughter contact.
Nurses deemed Emily "the fighter," one of the many nicknames they had for the children, whose personalities ran the gamut from "whiner" to "coquette." The babies' arents were just as diverse, for prematurity knows no bounds of race, religion, or income. Mehren writes openly of how anxiety about Emily tested her marriage. She describes how some doctors, possessing more technological expertise than sensitivity, added frustration to an already tense situation. But caring nurses, other parents, and friends and family helped ease the strain.
"Born too Soon" is a story of learning to deal with life's unexpected trials. Mostly, it is the story of one tiny child's large message, that courage can come in small packages.

"The Pain of Premature Parents: A Psychological Guide to Coping" by Michael Hynan, Ph.D, University Press of America, Lanhan, MD, 1987.

(From the preface) This book was written to help parents adjust to the crises caused by having a premature baby. When my son was born prematurely there were no books on prematurity for parents. As I attempted to understand what was happening to my family, I read through books and journals on obstetrics and neonatology. Later I devoured the books written for premature parents. Scattered in these books were descriptions of the emotional difficulties premsture parents face. I was amazed to find that many of those descriptions fit my experiences and those of many premature parents I have talked with.
It is no secret that parents of premature or high-risk infants need emotional support in coping. The emergence of parent groups throughout the USA and international organizations like Parent Care attest to this grass roots movement. This book carries on the tradition of parents helping parents.
I have combined my background as a clinical psychologist with my experience of being a premature parent in writing this book. I describe the common difficulties of prematurity and how these problems affected my family and many others. I also give advice about how you can adjust to your situation.

“Dear Zoe” by Max DePree, HarperCollins, San Francisco, 1996.

(Not from book jacket) This is a book of the letters from a grandfather to his preemie granddaughter, born 16 weeks early, weighing 1 pound, 7 ounces, 11 inches long. According to Barnes & Noble on 4-30-96, this has not yet been released for mass distribution.

"Baby Hands and Baby Feet -- Poems and Drawings from the Nursery," by Nancy J. Kennedy and David Pegher, NICU-Ink, 1995. Can be obtained from NICU-Ink, 1304 Southpoint Blvd, Suite 280, Petaluma, CA 94954-6895, phone (707) 762-2646.

(Not from book jacket) David is an elementary school teacher. While an undergrad at Carnegie Mellon Univ, he took an art in society class. A requirement was that he incorporate art into a non-traditional setting. He decided that he wanted to be a babyholder for a NICU. All the Pittsburgh NICUs turned him down, except for Transistional Infant Care, a step-down hospital in Pitttsburgh. He began to sketch the babies for parents, and was eventually named Artist in Residence.

"When Pregnanct Isn't Perfect" by Laurie Rich.

Like most women, Laurie Rich expected her pregnancy to be perfect. Instead, she had ten major, painful and debilitating complications that kept her bedridden for seven months, ending with a five-week hospital stay and her premature delivery by cesarian section. During this time, Laurie searched in vain for a book that would tell her what was happening to her and why. That is why she decided to write the book she wished she had read while she was pregnant. The result is this invaluable guide, packed with comprehensive information and reassurance for the many women who, like Laurie, develop such conditions as: hypertension, toxemia, preeclamsia, and eclampsia; intrauterine growth retardation syndrome; placenta previa, prenatal abruption, and other causes of bleeding during pregnancy; threatened miscarriage and “incompetent cervix”; preterm labor and delivery.

There is also a wealth of advice on coping with such problems as multiple pregnancy and cesarian delivery and a special chapter for fathers - who are too often negleted when complications arise. Filled with both help and hope, this information-packed book is essential reading for all expectant mothers. BLB.

“Breastfeeding Your Premature Baby” by Walker and Driscoll.

(From BLB catalog) Specific guidelines for nursing a premature baby. BLB.

“Breastfeeding Premature Babies” from Le Leche League’s Lactation Consultant Department. BLB.

“Nursing Your Premature Baby” by Childbirth Graphics. BLB.

“Breastfeeding Your Premature Baby” by Le Leche League. BLB.

“Early Beginnings: Development in Children Born Preterm” by MacArthur and Dezoete. 1992.

In the United States alone, more than 250,000 families each year have the experience of a preterm birth. Today, though some six percent of births are classified as preterm, the outlook for these children is better than ever before. Parents can do much to help. This book answers the questions many parents ask, and guides them in caring for their child. It has been written to assist the parents and families of these special children. It describes how children may develop, from the earliest days to school-age and beyond. Several case studies, written by parents, have also been included. The final chapter gives a brief introduction to some of the research that has been done in the field of preterm birth, and there is a reading list for those who want to explore further. BLB.

“In Time and With Love” by Marilyn Segal. Revised 1988.

(From BLB catalog) Caring for the special needs baby. All aspects of care for preterm and handicapped children in their first three years. BLB.

“Special Beginnings” (From BLB catalog)

For parents with an infant in intensive care. BLB.

“Baby Talk” by Dale Hatcher and Kathy Lehman.

(From Centering Corporation catalog) Discusses states, listening to baby’s body language. Invaluable to NICU parents. CC.

“Daddy: NICU”

(From Centering Corporation catalog) When a group of dads said they needed a book, we asked them to talk into a tape for us. This is what they said. It feels as if you are actually having a strong cup of coffee with these men. CC.

“Loving and Letting Go” by Deborah Davis, Ph.D.

(From Centering Corporation catalog) For those parents who decide to turn away from aggressive medical intervention for their critically ill newborns. “If reading this book moves you to cry, try to accept this reaction. These are healing tears of grief. They are also tears of health and strength theat merge with those of other bereaved parents. You are not alone.” Here’s an elegant book that says sometimes the truly heroic measure is to let nature take its course. Deborah covers Triumphs and Traps of Modern Medicine, Facing the Decision, Dilemmas of Withdrawing Artificial Support, After Baby Dies, and much more. There’s a super section on dealing with painful comments. For example, when you hear, “Miracles happen to those who have enough faith,” Debbie suggests: “Well, then, it’s too bad you weren’t more involved.” The final, gentle chapter is entitled “Letting Go With Love.” And that’s what this most supportive book is all about. CC.

“Special Beginnings”

(From Centering Corporation catalog) Talks about feelings, staff, and the roller coaster of the special care experience. CC.

"Born Early" by Dr. Mary Ellen Every, Little, Brown and Company, 1982.

"Understanding My Signals" by Brenda Hussey (now Hussey-Gardner)

These have been recommended to me by several people, however, according to Barnes and Noble, they are no longer available.

BABY BOOKS:

“My NICU Baby Book”

(From Centering Corporation catalog) Since you can’t go to a store and buy a baby book that measures blood gases or records the date your baby goes off the respirator, we wrote one with a lot of good consultation. It also has charts measuring baby’s growth, lots of places to write out questions, journal feelings, record numbers you need to know, charts for feeding and any surgeries and test that come along. CC.

BOOKS FOR CHILDREN:

“Katie’s Premature Brother”

(From Centering Corporation catalog) For siblings of NICU babies, this shares fears, worries of preschoolers and older children. Can be a coloring book, too. BLB,CC. “No Bigger Than My Teddy Bear”

(From Centering Corporation catalog) For sisters and brothers of a healthy preemie. Done in gentle pastels, we have a good look at machines and what happens in the NICU. BLB, CC.

ORGANIZATIONS

Parent Care, Inc.
9041 Colgate Street
Indianapolis, IN 46268-1210
317-872-9913

Parent Care, Inc. is a not-for-profit, international organization dedicated to improving the newborn intensive care experience and future for babies, families and caregivers.

Tiny Treasures
c/o Sara Matzoll-Phillips
1272 Ironwood Lane #1
Eagan, MN 55123
Tiny Treasures is an organization dedicated to providing support and information to parents having experienced a premature or high risk birth.

ONLINE/INTERNET RESOURCES

PREEMIE-L on majordomo@vicnet.net.au

The PREEMIE-L open mailing list is primarily for parents with children born six weeks or more before due date. Having a premature baby can be a scary and lonely business. We hope that through this list parents of preemies can offer each other support and the benefits of a wide range of experiences. Members of the group are interested in exchanging information and opinions on a range of issues. For example, one member wants to chat about "developmental delays, the developmental tests and my opinions about them, feeding issues, how other preemies are dealing with the outside world. And lots more."

To subscribe to this group, email to majordomo@vicnet.net.au. Leave the subject line blank, and put: subscribe preemie-l youremailaddress as the first line. (Of course, put in your own email address instead of youremailaddress). You should get a brief message back welcoming you to the group. If you have any problems, email the owner.

Note - the name of the group is preemie-l (l as in lizard not 1 as in numeral one).

If you have anything (introduction, comments, questions, etc.) that you wish to distribute to all members of the preemie-l group, send it as e-mail to preemie-l@vicnet.net.au.

There is a homepage for the mailing list at http://www.vicnet.net.au/~garyh/preemie.htm. We encourage subscribers to send an introductory message, so we all know one another and where we are coming from. You can see the list of families already on preemie-l at http://www.vicnet.net.au/~garyh/famil.htm. Owner: Gary Hardy <garyh@vicnet.net.au>

For Parents of Preemies, Answers to Commonly Asked Questions

http://www.medsch.wisc.edu/childrenshosp/parents_of_preemies/index.html

Breastfeeding FAQ: contact Justine Diamond at jdiamond@nic.com.

Often, you can find other parents of preemies on the newsgroups misc.kids and misc.kids.pregnancy

On America Online, you can usually find preemie folders under Keyword: PIN, parent-to-parent and Keyword TNPC.

FINANCIAL HELP

In the U.S., you may qualify for financial help from your local Township Trustee, WIC and Medicaid, especially if time off from work due to pregnancy complications has significantly changed your finalcial status, and depending on the gestational age or weight of your baby. Also, look into the Katie Beckett Waiver, a federal waiver named for a little girl who’s family made too much to qualify for government aid but who’s insurance was not sufficient to cover her unusually high medical bills. The waiver is for families who do not qualify for Medicaid or SSI due to family income above the maximum usually allowed for these benefits.


If you have any resources that you would like to add to this list, or any corrections or problems with the list, please contact me. Also, please contact me if you would like to receive updated versions of this list. I would be happy to send copies of updates out either by email or traditional mail.

Thank you.

Mary Searcy, 1118 34thStreet SW,
Wyoming, MI 49509, MarAim@aol.com.


Return to Preemie-L Home Page || Preterm Labor Resources