preemie-l Preemie Resources 5-27-96
MarAim@aol.com
Sat, 1 Jun 1996 21:37:12 -0400
RESOURCES FOR PARENTS OF PREEMIES
BOOKS AND PAMPHLETS:
The information given is all the publishing information that I have, if you
have more
information, please feel free to contact me. The descriptions are taken from
the backs of
the book, unless otherwise stated.
Books and other articles followed by BLB can be obtained from the Birth and
Life
Bookstore, 141 Commercial Street NE, Salem, OR 97301, customer service and
catalog
requests (503) 371-4445, orders (800) 443-9942, fax (503) 371-5395.
Books and other articles followed by CC can be obtained from Centering
Corporation,
1531 N Saddle Creek Road, Omaha, NE 68104, phone (402) 553-1200, fax (402)
553-0507.
"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 34th
Street SW,
Wyoming, MI 49509, MarAim@aol.com.