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Important Links

This is a growing list of important links about prematurity, high risk pregnancy, and bereavement.

March of Dimes — a key player in preventing premature birth and promoting healthy pregnancy — provides support and financial assistance to families with critically-ill newborns in the NICU.

Preemie Info/NICU Info

Baby First — educational resources and support to caregivers and parents of premature infants
Bliss — UK-based site for babies born too soon, too small, too sick
Bub Born Early — an Austrialia-based site with some good info and links on the NICU and preemies, plus a NICU baby book
First Candle — working to eliminate stillbirth, SIDS and SUID through research, education and advocacy; 24-hour crisis line for families suffering infant loss
Growth Charts — What do they mean?
Hand to Hold — Fragile Babies, Strong Support
Isabel’s Gift — support for parents with sick children on the NICU — List of links and resources for preemie families
Mothers of Supertwins — supporting multiple birth families
Onsite Neonatal Partners — medical professionals bringing NICU care to community hospitals
Neonatology on the Web
NICU Music Therapy
NICU Parent Support Site — resources for NICU parents, included a free eBook guide
NICU Parenting: The Emotional Journey — a website for parents of preemies and preemie caregivers written by two PhD psychologists
NICUniversity — an educational resource for the neonatal community
PDA — a .pdf about the patent duct
Peek a Boo ICU — a resource site for NICU parents run by a NICU nurse
Preemie Babies 101
PreemieCare — education, support and resources for preemie families
The Preemie Baby — Help, Understanding and Guidance for the NICU Parent
Preemie Dads Blog — Support and resources for fathers of preemies on the NICU and beyond
Preemie-L — Parents of Premature Infants, Inc.
The Preemie Project
Preemies Today — National Preemie Families Support Network
Preemie Voices — an organization tracking and advocating about legislative issues facing preemies. Good list of resources, and an important way to stay informed
Preemie World — created to help bridge the gap between parent and professional in the NICU, at home and beyond
Premature Babies — on MedlinePlus — a NICU nurse and preemie mom wrote a book on raising parents; this great site is full of resources and relevant links — Premature Baby, Premature Child; resources.
Tommy’s Preemie Web — the Facebook Page and Website of a preemie who’s family has been sharing online since 1995
What to Look for in a Neonatal Care Unit — really good information, but don’t know how it would get to someone before they need it


Better Bedrest — n outreach programs for at-risk preganancies —  offers online bed rest and high-risk pregnancy support
group available 24 hours per day.

KidsHealth — Pregnancy and Newborn Center; searchable with good info on preemies
Mamas on Bedrest & Beyond — resources for surviving bedrest and transitioning to parenthood — support and education by parents for parents and those wanting to become parents
Sidelines — National High Risk Pregnancy Support Group


A Chance to Grow — documentary directed by a NICU nurse following three NICU families; aired on the Discovery Channel
Little Man — a documentary by Nicole Conn about her preemie son Nicholas
Love Comes Early — video series produced by Pampers covering the preemie journey of baby Addyson

Ways to Communicate/Arrange Support

Bureau for Children with Medical Handicaps — (State of Ohio) links families of children with special healthcare needs to a network of quality providers and helps families obtain payment for the services their children need.
Care Pages — free patient blogs that connect friends and family during a health challenge
CaringBridge — an excellent, easy resources for keeping friends and family up-to-date on NICU progress, as well as for arranging much needed support during and after the NICU

Bereavement and Loss

Bereavement Services/Resolve Through Sharing — resource for professionals and families
Compassionate Friends — Grief Support After the Death of a Child
Faces of Loss, Faces of Hope — putting a face on miscarriage, stillbirth and infant loss
First Candle — 24-hour crisis line staffed by grief counselors and other bereavement resources
Healing Hearts: Baby Loss Comfort
National Sudden Infant/Child Death & Pregnancy Loss — Resource Center
Share Pregnancy & Infant Loss Support

Birth Stories and Preemie Blogs

Aleigh and Isaac — a story about another preemie named Ike
In the Beginning — the story of micropreemie twins Corinne & Kaitlyn
Katie’s Story — read from the bottom post up
Mackenzie’s Story — a NICU nurse’s own preemie birth story
Parenting the Tiniest of Miracles — finding joy in life with a micropreemie
Reflections of a Preemie Dad — by Brian Wagnon
The Handhold *or* When everything changed — on at 6512 and Growing
Twintrospectives — the blog of a mom with three preemie boys, including one set of preemie twins

Products/Services for Preemies & Their Families

Graham’s Foundation — care packages with practical & emotional support for NICU families, as well as other wonderful resources
It’s a Preemie Thing — mostly preemie clothes, some gifts & other products
Perfectly Preemie — preemie clothes, plus a blog called Preemie Tidbits
Philips Children’s Medical Ventures — education services and developmentally supportive products for premature babies, healthy newborns and hospitalized infants; includes a parent store, as well as resources, such as an online growth chart, glossary and links.
Pictures of Hope — professional photographers who provide complimentary photography for parents with babies in the NICU
Project Sweet Pea — care packages for families with babies on the NICU

Professional Organizations

The Academy of Neonatal Nursing
American Academy of Pediatrics
The Association of Retinopathy of Prematurity and Related Diseases
Association of SIDS and Infant Mortality Programs
Council of International Neonatal Nurses
Maternal and Child Health Bureau
National Association of Neonatal Nurses
National Association of Perinatal Social Workers
National Center for Education in Maternal and Child Health
National Institute of Child Health and Human Development
National Perinatal Association
Neonatal Resuscitation Program
Preeclampsia Foundation
Section on Perinatal Pediatrics

2 Comments leave one →
  1. February 18, 2011 10:27 pm

    From one parent of preemie twins to another. Your site is inspirational!
    Wonderful resources too. I will continue to follow their progress.
    Dana Cox

    • February 19, 2011 3:06 pm

      Thank you, Dana. Did you or do you belong to a twins group. Mine saved my life. Moms of twins need to stick together. Best wishes to you and yoru family.

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