INTERNET RESOURCES FOR PARENT

Premature Internet Resource for Parents

Parents of Premature Babies
This comprehensive website from the list owners and founders of Preemie-L mailing list, Anne Casey and Gary Hardy provides:
Archives and introductions of past Preemie-L email list messages
FAQS related to prematurity
Discussion forum and mailing list
An in-depth quarterly newsletter
Published papers Preemie-L conferences (1998, 1999, 2001)
Pointers to other preemie resources.

Prematurity
Allison & Rick Martin’s Prematurity website provides a wealth of support and information on the long term effects of prematurity for parents of children born premature. The only support site and list exclusively focused on school age children, Premature Child includes a large collection of articles by professionals and parents, resources and support forums on the special needs of prematurity.

Comeunity: Premature Baby Premature Child
Companion website on preemie babies and older preemies. Covers preemie parenting, preemie care and preemie stories. A great set of stories, articles, resources and indepth research to keep you occupied for hours in reading about preemies.

The Early Edition
The Preemie-l newsletter The Early Edition, edited by Tammy Bangs, was a collaborative publication which brought together a collection of wisdom and discussions from preemie parents and professionals. The Early Edition is an informative and moving consolidation of the experiences of parents of preemies packaged for distribution to your NICU, support groups, friends and family.

After the NICU
Tammy Bangs’ After the NICU website provides advice for when you finally bring home your baby, including feeding, visitors, oxygen, sleep, and medication. The advice is a collection of experiences from preemie-l parents who have “been there, done that.” A nice introduction to the homecoming preemie, along with a listing of references and other preemie websites.

Childrens Disabilities Information
A great resource for parents of preemies who might have special needs. This comprehensive website on children’s special needs, covers many of the long term impacts related to prematurity. Sensory integration, cerebral palsy, vision impairment, speech and language, attention deficit (ADHD, autism and more.

Small Wonders ~ A Preemie Place
Laura Williams’ Small Wonders ~ A Preemie Place provides an information on growth and feeding issues in premature babies. Her website includes information on feeding disorders, behavioral aspects of eating, and feeding tips, along with a terrific forum.

Preemie Resource Page
Mary Searcy’s Preemie Resource Page provides an exhaustive list of publications, organizations, websites, and other resources for parents of preemies. A great place to start on your quest for information on prematurity.

Coping with Premature Birth: An Emotional Journey
The experience of having a preemie (or multiple preemies) is overwhelming and life transforming. Mara Tesler Stein, Psy.D, a Clinical Psychologist and mother to premature twins, provides a number of articles for parents on the emotional journey of prematurity. Coping with Premature Birth: An Emotional Journey is an excellent resource for a warm and professional overview of the influence of prematurity on the family.

PrematureInfant.com
Dianne Maroney, a NICU nurse and the co-author of “Your Premature Baby and Child”, provides an array of helpful articles and advice for parents and nurses on parenting a premature child. If you have a premature baby or preschooler, take a moment to visit this website – you will be glad that you did.

PreemieParents.com
Amy Tracy, the co-author of “Your Premature Baby and Child,” provides a reading room on PreemieParents for parents of children born premature. Her informative articles include topics such as parenting your preemie, your preemie’s clues, mild developmental delays and retinopathy of prematurity (ROP).

Preemies.Org
Bill and Monica Stavig’s Preemies.Org was established to encourage parents of premature infants to talk with other parents using various Internet resources. Their online chat sessions give parents a chance to interact together.

Emory Pediatrics Developmental Continuity Program
A professional collection of articles for physicians, parents, and therapists involved with the care and development of children born prematurely is provided at this site by Dr. Sheena Carter and other members of the Emory Developmental Continuity Program, of Emory University. A great resource for those interested in long term issues of prematurity – from babies to older children.

Tommy’s CyberNursery Preemie Web
The King’s CyberNursery 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 photo gallery and check out this extensive set of resources.

Kangaroo Care
Krisanne provides inspiration for parents who wish to provide Kangaroo Care of their premature babies in the NICU. This site’s photographs, parent quotes, article links, and booklet on this special handling technique provide encouragement to parents around the world.

Preemie Info
Terry Tremethick’s active website Preemie Info is an moderated interactive display where parent view and submit stories, poems, photos and links to share with one another.

Preemie Web Ring
Rosanne Smith’s Preemie Ring is a collection of premature infant web sites. Go around the ring and visit sites of preemie parents all over the world.

Imagine
Rebecca Pittelko’ Imagines page a collection of personal anecdotes been posted on the preemie-L mailing list. This is a stirring set of quotes documenting the emotional response to parenting and giving birth to a baby born premature.

Premature Baby Information
Neonatologist Dr. Doug Derleth’s Premature Baby Information 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.

Preemie-l Photo Gallery
Melissa Armstrong’s Preemie-l Photo Gallery provides a wonderful collection of photographs of children of preemie-l members arranged by gestational age. A great visual testimonial for children born premature. Photo’s and links to personal websites are provided. The “Guardian Angels” page pays homage to the premature babies who did not survive.

Inkan’s Homepage
Ingrid Olsson Renfor’s Inkan’s Home Page provides information and resources about PROM (Premature Rupture of Membranes), an illustrated list of preemie stories by gestational age, and support services for Swedish parents of preemies.

Association Des Parents D’Enfants Prematures du Quebec (APEP)
An organization in Quebec, Canada, which provides support and information for families of infants born before 37 weeks gestation, and health professionals. Support list, brochures and website are provided in French.

Michael T Hynan’s Home Page
Michael Hynan conducts research on stress reactions in parents that have had their premature (or full-term high-risk) infant hospitalized in the NICU. His website provides text of talks on coping with high risk birth and the NICU.

The Coalition for Prematurity Awareness
Mary Searcy and Sandra Peters created this site for the Coalition for Prematurity Awareness to organize the promotion of awareness of the incidence of premature births in the United States, the preventable causes, and possible consequences. A part of the Elaine Sayers’

Alexis Foundation
Elaine Sayers’ Alexis Foundation provides articles from the prematurity conference 1999 and other resources.

Miracle Sam: VIP (Very Important Preemie)
Susan Warren’s web page Miracle Sam: Very Important Preemie contains the touching story of her son Sam, who was born with a number of premature complications and immunodefciency. Her website includes guidance on “Learning to Touch a Preemie,” lactation, caring for a central line, and instructions to make a custom cover for an isolette.

T-Bone’s Survival Tips for New Preemie Parents
Kerry Bone’s website T-Bone’s Survival Tips for New Preemie Parents provides suggestions to help parents, family and friends cope with the emotional side of the birth of a premature baby. Articles cover subjects such as asking questions, taking care of yourself, emotions, breast feeding, how your family and friends cope, holidays, disabilities and many more.

Amy’s HELLP Syndrome Page
Ami Logan’s HELLP Syndrome homepage provides inforamtion 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.

Preemie Mom’s Page
In the Preemie Mom’s Page Sandra Peters shares the life changing experience of the premature births of her two children. Her well written articles on parenting a child with cerebral palsy are compelling and informative. Articles from her newsletter,

Preemie Parent Connection,
cover topics such as assisting preemie dads and granddads, surviving a medical crises, and supporting the siblings of a special needs child, from a number of distinguished contributers.
Premature Baby Related Resources

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,
The Alexis Foundation
Preterm Labor Resources
Preemie Resources
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.”

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