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1. Preemie-L Website http://www.preemie-l.
org/ An invaluable place for parents to learn
more about the world ofpremature birth, with
transcripts of conference papers,articles
about feeding issues, answers to frequently
asked questions, and advice for the friends
and relatives of new preemie parents.
2. The Preemie-L Mailing
List - This is the
premier placefor the exchange of ideas and
information, frustration andsupport. The
Preemie-L mailing list is an e-mail support
group. Formed in February 1996, Preemie-L's subscribersnow
number close to 500.
Participants include primarily parents,
but also social workers, nurses, doctors,
psychologists, and authors interested in
the issues of prematurity and NICU practice.
A wide range of experience is represented
here. New preemie parents can write frankly
about their experiences in NICUs, and parents
of older preemies can share about the daily
issues they face. How to subscribe - send
an email to majordomo@lists.vicnet.net.au.
Leave the subject line blank,and type “subscribe
preemie-l” and your email address as thefirst
line. The Preemie-L list is a closed list, which
means that applications to subscribe must be
approved by the list owner. This will usually
happen within 24 hours of your sending a
subscribe message. You will then get a brief
message back welcoming you to the group.
How to subscribe to the Digest Version If you
would rather receive the digest version, rather
than messages sent one-at-a-time, send an
email tomajordomo@lists.vicnet.net.au.
Leave
the subject line blank, and type “subscribe
preemie-l-digest” and your email address as
the first line. The Early Edition http://home.vicnet.net.au/~earlyed/
is an on-line
newsletter containing excerpts from the
Preemie-l support group, plus articles by parents
and professionals. This newsletter can be printed
out and displayed in the NICU or given to parents.
3. PREEMIE TIMES - This
is an open discussion
list for posts that have to deal with preemies and
any other relevant subject in their lives
(or their parents lives). This list is less regulated
than preemie-l. Poems, stories, and links to
interesting sites are welcome. Subscription
instructions: Visit the onelist website at
http://www.onelist.com
and subscribe.
List owner: Ami
Logan, vader1@ix.netcom.com
Web page:
http://members.tripod.com/~AnderPander/home1.html
4. "Resources for
parents of preemies” - http://members.aol.com/MarAim/preemie.htm
This
is a comprehensive bibliography and resource list for preemie
parents, whether they're searching for
information on medical conditions or trying to locate
preemie diapers. Listings include general books and websites,
breastfeeding/pumping, children's books,
coping, kangaroo care, real life stories, newsletters, textbooks,
videos, organizations, and much more.
Originally organized by Mary Searcy, the parent of a preemie,
this on-line resource list may be printed
out from the address above, or requested from
The Alexis Foundation for Premature Infants
and Children, P.O. Box 1126, Birmingham,
MI 48012-1126. 1-877-ALEXIS-0 or 248-543-4169
(Detroit area). E-mail: MarAim@aol.com
or thealexisfoundation@prodigy.net.
thealexisfoundation@prodigy.net.
5. Preemie-Child Website
PREEMIE-CHILD
The place for support of often isolated parents
of older (school-age) children with medical problems, developmental
delays, or other issues.
www.prematurity.org
This site contains links to
mailing lists for families of children with disabilities
and special needs, useful articles, and more.
6. Preemie-Child Listserv
the premier place for
concerned parents of school aged preemies.
Subscription address:LISTSERV@MAELSTROM.ST>
JOHNS.EDU In the body of your email, send
the message SUBSCRIBE PREEMIE-CHILD
Your Full Name Digest:After receiving your
confirmation, send the command:
set preemie-child digest
7. "Kangaroo Care"
http://www.geocities.com/Heartland/Village/6554
/index.html Information on Kangarooing our little
miracles.
8. "The
Preemie Purple Heart Page" A site that
will give you courage and touch your heart. http://www.preemie-hearts.com/
9. "Small
Wonders~A Preemie Place" A place
where youcan find out about many preemie-related
issues
.
http://members.aol.com/_ht_a/Lmwill262/index.html
10. "Neonatology
on the Web" Created by Dr. Ray
Duncanthis is a site with neonatology-related literature,
resources, and neonatology jobs directory. You'll want
to use this site to gather important information for your
practice or your own preemie
. http://www.neonatology.org/
11. "NICU-WEB"
Created by the University of
Washington Academic Medical Center and The
Children's Hospital and Regional Medical Center,
this site gives extensive information on many
common diagnoses, procedures/interventions,
references and resources for the premature infant.
http://www.neonatology.org/
12.
"Emory Pediatrics Developmental Continuity
Program" A website that provides multidisciplinary
neurodevelopmental evaluation and intervention
services to infants and children identified as
"at-risk" for neurodevelopmental disabilities. http://www.emory.edu/PEDS/NEONATOLOGY/DCP/
13. "Michael
Hynan's Homepage" Dr. Hynan is a
parent of a preemie and a professor at the
University of Wisconsin-Milwaukee. He has
researched the emotional stress of
parenting a preemie and discusses his results on his homepage.
http://www.uwm.edu/~hynan/index.html
14. "T-Bone's
Survival Tips for New Preemie Parents"
Kerry Bone, a mother of a preemie herself, created this
fabulous website for preemie parents and their family
and friends.It includes helpful advice on everything
from how to touch your preemie to helping your
marriage
15. "American
Association for Premature Infants"
A national advocacy organization dedicated to the improvement
of health, development, and educational services for premature
infants, children, and their
families. http://www.aapi-online.org/
16. Tommy’s Cyber
Nursery Preemie Web
http://kingproductions.com The King's Cyber
Nursery is one of the longest standing preemie
sites on the Web and features an extensive listing of preemie,
baby and parenting links, as well as
interactive features.Read the guest book comments,
visit the photogallery and check out this extensive
set of resources.
17.
Premature Infant.com http://www.premature-
infant.com
Dianne Maroney, a NICU nurse and mother of a
daughter born premature, provides an array of
helpful articles and advice for parents and nurses
on parenting a premature child. Her website,
Premature Infant, also provides a series of quotes
(known as "Imagines") from parents and NICU
nurses. Dianne is the co-author of the practical and informative
book, "Your Premature Baby and Child".
18. Preemie Parents.com
http://www.preemieparents.com
Amy Tracy, the co-author of "Your Premature Baby
and Child," provides a reading room on Preemie
Parents for parents ofchildren born premature. Her informative
articles include topics such as
parenting your preemie, your preemie's clues,
mild developmental delays and retinopathy of
prematurity (ROP).Amy Tracy has also authored a
number of magazine articles on babies, children and prematurity
related issues.
19. Twin Enterprises
twinenterprises.com
Cerebral Palsy Resource
Center, in connection with the
CPParent Listserv, includes a detailed and informative
FAQ, dictionary, and list of resources. A number of
inspirational articles, poems and links for parents of
special needs children are also available.
20. Information and resources on HELLP
(Hemolysis, Elevated liver, Low platelet),
pre-eclampsia, and pregnancy induced
hypertension. http://members.aol.com/hellp1995/index.html
provides information and resources on HELLP
(Hemolysis, Elevated liver, Low platelet),
pre-eclampsia, and pregnancy induced
hypertension. In addition, the HELLP
website provides HELLP syndrome birth
stories, a message board and the
HELLP Syndrome WebRing.
21. Bill and Monica Stavig's
Preemies.Org
http://www.preemies.org
was established to
help parents of premature infants find other
parents using various Internet resources.
Preemie-chat and Preemies Chat Forum
give parents a chance to interact together.
22. Neonatologist Dr.
Doug Derleth's Premature
Baby Information
http://hometown.aol.com/dderleth/main.html
page provides expert information on issues
important issues for parents of premature
infants. His articles include such as Minimizing
Pain in the NICU, Retinopathy of Prematurity,
RSV FAQ, and Extreme Prematurity.
You must read this website if you have a
22-24 weeker!
23. PPPG POST PREEMIE
PREGNANCY GROUP is
the email discussion group about being pregnant again
after having a premature birth. A lot of moms who
previously had preemies at 22 to 34 weeks gestation
describe their subsequent pregnancies as
"I held my breath for 40 weeks".
But there is a lot of things that a mom in this
situation wish they could do and want to talk about so I
have set up a email list so that there is a place for discussion.
Subscription address: Go to pppg-subscribe@onelist.com
to sign up, or write to the list owner at
pppg-owner@onelist.com
and ask to be
subscribed List owner: Catherine Hewitt, pppgowner@onelist.com
Website: http://www.onelist.com/community/pppg
24. Jeff's life-http://members.tripod.com/jeffslife/HOME.HTM
On going essays by Jeff Stimpson,
father to Alex born weighing 1 lb. 5 ounces |
