If you haven't started there
already, you may want to start with our "Recommended
First Stops" in addition to the following
(some are duplicates)
General Resources
Preemie Parenting,
described as "a place created for parents and loved ones of premature
infants, and women experiencing a high risk or complicated pregnancy."
This site features an excellent collection of links, articles, chat, and
other resources
A Primer on Preemies, an overview on Preemies from KidsHealth.org For Parents
PreemieParents.com,
self described as "A reading room to help you parent your
preemie." The site features information on the book "Your
Premature Baby and Child: Helpful Answers and Advice for
Parents." It also includes links and articles of interest to
parents of preemies
Premature-Infant.com, A page written by Dianne
Maroney, a neonatal intensive care nurse for over 17 years and co-author of "Your Premature Baby and Child: Helpful Answers and Advice for Parents" (Berkley, 1999)
Helen Harrison's Observations on Prematurity, A page featuring various "Discussions by Helen Harrison, author of The Premature Baby Book, on the prematurity support internet mailing lists: Preemie-L and Preemie-child." (Comeunity)
Premature Baby Information,
An informal site created by a Neonatologist. Includes papers on Minimizing Pain in
the NICU, ROP (Retinopathy of Prematurity), an RSV (respiratory syncytial
virus) FAQ, and information on Extreme prematurity
Newborns in Need, Inc. - A Charity For Babies,
self described as a Web site about "newborn and premature sick and needy babies and
how we can help them when they can't help themselves."
The Preemie Page,
a part of the Motherstuff
meta-index of mother-knowledge on the internet
The Alexis
Foundation is a non-profit foundation that provides support, educational and
informational services for parents and families of prematurely born infants and children
Updated link: Mary Searcy's
Preterm Labor Resources is a nice
companion to the previously mentioned
Preemie
Resources page. Both are posted in association with the
Preemie-L Discussion Group
Family Village's Preemie Links
& Information
Medical or Related Organizations
The
NICU Website at Baystate Medical Center, from the site "The
NICU staff congratulates you on the birth of your baby! We know that having
a baby admitted to the NICU is very stressful and upsetting to you and your
family. We want to help you with as much support and knowledge as
possible."
For Parents
of Preemies: Introduction, an excellent resource put together by medical professionals
as a Web resource
Center for the Study of Children, Inside you
will find information on NICU design standards, research concerning the effects of the
environment on medically fragile children (particularly premature infants), innovative
pre-medical education and child advocacy issues. (Described from the first page of the
site.)
Neonatal Network, self described as dedicated
to providing current information about newborns to the nurses who care for them.
Neonatology on the Web, a "don't
miss" medical site with lots of resources of interest to medical professionals and
parents
Journal of Neonatal Nursing
from the site "JNN is the official journal of the UK Neonatal Nurses
Association. You can browse through abstracts of published articles and
access the full text of one article in each issue free of charge."
Michael T Hynan's Home Page - both an
academic site, and a father's preemie site
Special Topics
DEVELOPMENTAL
CARE For Our Little Miracles, from the site: "Developmental Care,
also known as Family-Centered Care, is used in NICUs across the country to
reduce the stress of the NICU experience on premature babies.
Developmental Care is one of the most important tools in the NICU to make
the baby's stay the best it can be. Hospitals that practice Developmental
Care have seen their babies bottle feed sooner, gain weight quicker and be
discharged sooner."
KANGAROO CARE For Our
Little Miracles, Information on skin to skin contact in the NICU -- which is popularly
known as Kangaroo Care
Support Groups
Preemie-L
Discussion Group Home Page, A mailing list/forum primarily for
parents with children born six weeks or more before due
date, and family and friends
Preemie-L
Discussion Forum (Yahoo! Group)
Preemie World
Web Ring, "Preemie World, dedicated to Issy B, was created with the hope
that people will use it to explore, express and expand their
knowledge and experience with preemie babies"
All About Babies
is "a community of parents who love their babies." Includes preemie
links and other resources
Yahoo Groups: Feeding,
To provide support to parents of infants and young
children with feeding disorders related to disability or
premature birth
Allcrafts4charity ONElist Email discussion, From the ONElist description "This list is to promote sewing, crocheting, knitting, quilting and other fabric arts for the good of charity. We will have free patterns, free advice and area hospitals in need of your hand made donations. We will mostly specialize in helping premature infants and will also periodically deal with the issue of infant demise and creating bereavement articles for them."
All4Preemies ONElist Email discussion, From the ONElist description "This list is for parents or caregivers of preemies to discuss their concerns and share tips for taking care of these special little ones. We will discuss clothing needs and special ways to make these little ones grow. We are here for support, to give and receive"
Preemies ORG - NET Support Site
-- from the site: "Preemies.Org was established to help
parents of premature infants find other parents using various Internet resources
such as the PreemiesChat room. It's very comforting to find so many parents
and professionals on the Internet who know how difficult it is to have a
baby in the NICU."
Yahoo!
Club: Dad's of Premature Infants, The founders message reads: "I
would like to use this club for dads of premature infants to communicate,
discuss topics and most of all if needed support each other."
Yahoo! Clubs - preemieschat,
check this out -- a preemie club, chat and message board at Yahoo! for parents
of preemies!
Preemie Partners,
this Dallas/Ft. Worth area group is self described as "a
support group offering education, understanding and
companionship to parents of premature and/or medically
fragile infants and children"
The
Preemie Ring was created in order to link web pages written
about premature babies and related premature infant sites. This site is
a proud participant (see our
home page)
ISCU Parent-to-Parent, of Evanston
Women's Hospital, is an independent non-profit organization that serves as a means of
support and information for families of infants who were in or currently are in the Infant
Special Care Unit (ISCU)
Condition Specific
RSV Prevention Information Center,
from the site "The goal of this web site is to provide useful information
for parents and pediatricians that will help identify and protect high-risk
infants from RSV disease."
G-tube
Mailing List FAQ-O-Matic, Gtube is an unmoderated discussion and support group for
family, caregivers and others who are working with people of all ages who
have, have had, or are about to have, a feeding gastrostomy (g-tube)
Children
With Feeding Tubes, includes information from New Visions on tube feeding
- which is typically necessary for preemies
ROPARD, Web site for The Association for
Retinopathy of Prematurity and Related Diseases
CHEO Bronchopulmonary Dysplasia
(BPD), provided for the information of parents of children with Bronchopulmonary Dysplasia
(BPD).
New Visions @ new-vis.com, provides continuing
education and therapy services to professionals and parents working with infants and
children with feeding, swallowing, oral-motor, and pre-speech problems. (description is
from the Web site)
Placenta Previa - Visit Club Previa
to get the Low Down on Placenta Previa!, includes preemie stories.
Neonatal Diseases and Abnormalities
(Non MeSH), If you are looking for specialized information --Check This Out! It
includes, an extensive list of links, mostly medical--but some non-medical, worth
exploring
Aaron's Tracheostomy Page, a guide to
home care for a child with a tracheostomy "The Internets Leading Tracheostomy
Resource"
HealthAtoZ - The Search Engine for
Health and Medicine, self described, "this site has been developed
by health care professionals. It includes a directory of more than 50,000
professionally-reviewed Internet resources, supportive online communities,
and the HealthAtoZ Calendar."
Articles
Article:
The Healing
Powers of Music: How Parents Can Use it to Help Preterm Infants and Themselves
Article:
Despite
Disadvantages, Small Babies Make Happy Adults - Social, Emotional Outlook for
These Children 'Excellent,' Study Finds
Article:
Decoding
Your Preemie’s Signals by Amy Tracy at the site
Babies
Today
The Cochrane Neonatal
Collaborative Review Group, An interesting collection of medical research
articles/summaries
Pediatrics -- Table of
Contents (August 1998, 102, (2)), includes articles such as "Kangaroo Mother Care
and the Bonding Hypothesis", "Decline in Sepsis-associated Neonatal and Infant
Deaths in the United States, 1979 Through 1994" and "Decline in
Sepsis-associated Neonatal and Infant Deaths in the United States, 1979 Through
1994"
New Treatment For
Premature Labor, An important advance in the prevention of premature delivery is
reported by Dr. Robert Sawdy, London, U.K., and colleagues in a Research Letter (article)
Breast feeding
may cut health risk for 'preemies' an article written October 6, 1994
Surfactant for Preemies
- Looks like the 1990 press release for Exosurf Neonatal, with a description of how this
wonderful drug/treatment works. I, for one, will be forever grateful for its creation
Christian
Research Institute, anti-abortion article which discusses, among other things, the
similarity in gestational age between some aborted babies and the earliest of preemies.
(Provided as an informational piece, politics, etc. aside.)
Products (Commercial Links)
Preemie
Dolls, Custom Handmade Cloth Preemie Dolls -- jointed and weighted -- made
to your baby's actual measurements and weight
Little
Hero, a site with various resources links, and a product for preemie
parents, the "Treasured Memories - NICU
Baby Record Book" described as "the most comprehensive baby record
book for premature and sick infants, in a deluxe, padded three-ring
binder."
Breastfeeding Solutions from Medela Inc.,
a leading manufacturer of professional-quality breastfeeding products
kidABILITY, From the
site (commercial link): "We are a unique store, dedicated to making the
lives of disabled children and their families as normal as possible by providing
the items that are so crucial to those in need."
Ordering Preemie
Books Online, Most of us have heard of Amazon.com for ordering books.
Amazon has a program that pays commissions to sites that provide a link. This
link takes you to a site that is using those rebates to provide direct web
site support for children and parents for either adoption or disabilities
caused by premature birth
The NICU Series, self described
as providing "unique communication materials designed specifically for
use in hospitals, including NICU graduation certificates, parent keepsakes,
caregiver cards, isolette tags, etc. plus preemie and multiples birth announcements."
(A commercial link)
The Preemie Purple Heart, I don't know how
I missed this link! The Preemie Purple Heart pin is popular item among Preemie-L
moms. Technically, this is a commercial link. (added 6/13/98)
Home Page for Tiny Bundles, Preemie Clothing,
newborn clothes,Online preemie catalog
Children's Medical Ventures, Inc. was formed by
a cooperative of premier Children's Hospitals to help improve the health and well being of
children through innovative products, educational programs and consulting services. The company develops and markets neonatal and
pediatric products. (Commercial Link)
Prematurely Yours, "A Baby Book
Created Exclusively for the Preemature Infant" (Commercial Link) We have not
seen a copy, but the concept is very cool (page shots are available at the site).
Could be a great gift idea, or something personal to buy for your baby. If anyone
has purchased or seen this item, let me know
The Preemie Store and More - A commercial site,
but also has preemie resources that are worth a look
VORT Corporation, Neonatal Parent Resources,
a commercial site with books of interest for parents and professionals
working with preemies
Other
NANN, the homepage of the National
Association of Neonatal Nurses whose mission is to support and promote
neonatal nursing
ParentsPlace.Com Home Page.
This place has been around so long and so much to offer, I can't believe it sat here with
such a plain link. Visit Parents Place for an amazing amount of resources on all
areas of parenting--including some resources specific to preemies. A first rate
site
AnAngelRN's Home Page, This
page is by Judy who lives in Northern California, and works in the NICU of a local
hospital. Lots of links, and more stuff to come! I have high expectations for
this page
