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.
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.
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.
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).
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.
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.
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.
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.
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’
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
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
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
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 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.)
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
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
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!
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)
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.”
- 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.)
- 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
- 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
- Top Ten Resources for Preemie ParentsPrepared by Amy E. Tracy(Last updated 11/00)1. Parents of Premature Babies, Inc. (Preemie-L)www.preemie-L.orgA nonprofit foundation supporting families with children born six weeks or more before their due date; includes e-mail list.2. American Association for Premature Infants (AAPI)P.O. Box 46371Cincinnati, OH 45246(513) 956-4331www.aapi-online.orgAn organization dedicated to improving the quality of health and developmental and educational services for preemies and their families.3. The Alexis FoundationP.O. Box 1126Birmingham, MI 48012(248) 543-4169 or (877) ALEXIS-O (zero)http://pages.prodigy.net/thealexisf…THEALEXIS1.htmlAssists parents, healthcare professionals, and the public in providing care for preemies.4. Newborns in Need, Inc.P.O. Box 385Houston, MO 65483(417) 967-9441www.newbornsinneed.orgMakes and donates baby gowns, blankets, and other baby items for preemies and newborns.5. Premature
- Childwww.comeunity.com/prematureSupport for the long-term effects of prematurity; includes e-mail list.6. For Parents of Preemies: Answers to Commonly Asked Questionshttp://www.pediatrics.wisc.edu/chil…nts_of_preemiesAn overview of preemies and preemie care by a neonatologist.7. The Preemie Parent Connection2668 State Highway 812DeKalb Junction, NY 13630www.northnet.org/preemieparentconnectionA newsletter for families raising preemies.8. Coalition for Prematurity AwarenessP.O. Box 9667Wyoming, MI 49509(616) 534-9146www.preemieawarenss.orgA coalition promoting the awareness of the incidence of premature births, the preventable causes, and the possible consequences.9. Preemies.orgwww.preemies.orgEstablished to help parents of preemies locate each other using various Internet resources.10. Preemie Parentswww.preemieparents.comA reading room to help you parent your preemie
- The Premie WebRing
- Preemie-L Discussion Group and Information Resource
- American Family Physician – Information on NewbornsAmerican Palate-Craniofacial
- Association and Cleft Palate FoundationBabyCenter.Com Brachial Plexus/Erb’s Palsy
- Association Breastfeeding.Com Canadian Parents On-LineCentre d’information, de prévention et d’accompagnement de la prématurité [French] Child Transport for
- Childbirth.OrgCystic Fibrosis Resource — CF-WebCystic Fibrosis FoundationDansk Praematur Forening [Denmark] –>
- Erb’s Palsy/Brachial Plexus Association Fetal Alcohol and Drug Unit, U. of WashingtonFor Parents of Premies, U. of WisconsinGenetic Alliance (formerly Alliance of Genetic Support Groups)Group B Strep OrganizationGrowth Charts – What Do They Mean?HealthFinderInteractive Pregnancy CalendarKidsHealth.Org Parent Page KidSource On-Line — NewbornLa Leche League International,
- Breastfeeding Information ResourceLissencephaly Network Inc.March of Dimes – Prematurity Mercy Medical AirliftMultiple Gestation Information Site [Spanish] National Down Syndrome SocietyNational Patient Air Transport HelplineNewbornScreening.Com NICHD Publications (Free) ParenthoodWeb Parents of Premies, U. of WisconsinPediatric Patient Topics for Parents Pediatric Surgery for Parents (Inguinal Hernia and Hypertrophic Pyloric Stenosis) Piccino Piccio (Tiny Tots) [Italian] Pregnancy.Org “by parents for parents” Premature Infants, Family Village (Parent Care Inc.)Primer on Premies from FamilyDoctor.Org SIDS Network Home PageSOFT – Support Organization for Trisomy 18, 13, and Related DisordersSpanish Resources for the NICUTracheo-Esophageal Fistula Support OrganizationTu Pediatra (Spanish) Virtual Children’s Hospital Vroeggeboorte.NL [Dutch information about premature infants for parents] What to Look for in a Neonatal Intensive Care Unit Williams Syndrome Foundation
CLINIC FOR CHILDREN
JL Taman Bendungan Asahan 5 Jakarta Indonesia 102010
phone : 62(021) 70081995 – 5703646
Clinical and Editor in Chief :
DR WIDODO JUDARWANTO
email : email@example.com
Copyright © 2009, Clinic For Children Information Education Network. All rights reserved.