Resources for new parents
of premature babies

This resource guide is part of the Preemie-L mentoring program where experienced parents provide one to one support for new parents of premature babies.

If you have recently had a premature baby and would like one to one support for a while, please contact Raquel Schnitzer

General information

Neonatal Intensive care Unit (NICU)

Breastfeeding

Preemie shopping

NICU medical problems

Social and psychological support

Post discharge

Multiples

Premature fathers

Real-Life Preemie Stories

Subsequent pregnancy

U.S. Government Assistance

Pregnancy complications

General information
Emory Pediatrics
Information on Preemies and Developmental Issues
http://www.emory.edu/PEDS/NEONATOLOGY/DCP/

Dr. Guan Koh
Outcomes for Premature Infants by Gestation
http://www.geocities.com/Heartland/Acres/2077/table.html

Meriter Hospital, Department of Neonatology
For Parents of Preemies: Commonly Asked Questions
http://www2.medsch.wisc.edu/childrenshosp/parents_of_preemies/index.html

Dr Doug Derleth
An Introduction to Extremely Premature Babies: an information sheet for parents
http://members.aol.com/DDerleth/extreme.html

Neonatology on the Web
http://www.neonatology.org/

Neonatal Intensive care Unit (NICU)

T-Bone's Survival Tips for New Preemie Parents

http://members.aol.com/KBone91/firstvisit.html

http://members.aol.com/KBone91/touch.html

http://members.aol.com/KBone91/leaving.html

http://members.aol.com/KBone91/yourself.html

http://members.aol.com/KBone91/questions.html

The new language
Abbreviations common to prematurity
http://www.preemie-l.org/abbreviations2.html

Medications
Commonly Used Medications Used in Neonatology
http://www.neonatology.org/ref/meds/index.html >

Developmental care

Developmental care - Considerations for Touch and Massage in the Neonatal Intensive Care Unit

http://www.preemie-l.org/massage.html

Babies today going home alone: decoding your preemie's signals

http://babiestoday.com/resources/articles/preemisignals.htm

A library of abstracts for articles which support the developmental care of preterm infants

http://www.childmed.com/library/library_frameset2.html

Kangarooing our little miracles

http://www.geocities.com/Heartland/Village/6554/index.html

Breastfeeding

T-Bone's Survival Tips for New Preemie Parents

http://members.aol.com/KBone91/pumping.html

http://members.aol.com/KBone91/pumping2.html

http://members.aol.com/KBone91/pumping3.html

Pumping Moms Information Exchange
http://www.pumpingmoms.org

Breastfeeding your premature baby
http://www.preemie-l.org/bfaq.html

Harbor UCLA
Drugs in Pregnancy and Lactation
http://www.perinatology.com/exposures/druglist.htm

Parentsplace.com
Breastmilk Storage
http://www.parentsplace.com/expert/lactation/basics/qa/0,3459,15330,00.html

Preemie shopping
The Preemie Store and more
http://www.preemie.com/

For a Special Baby Preemie Clothes
http://www.preemie-clothes.com/

Children's Medical Ventures
Products for Premature Infants (including the Wee-Pee pacifiers used in many NICU's)
http://www.childmed.com/

NICU medical problems
Overview of NICU Medical Problems

Neonatal Diseases and Abnormalities

http://www.mic.ki.se/Diseases/c16.html

Defect Syndrome/Specific Sites

http://tchin.org/ilinks/families/c_families.htm#F02

Artrial Septal Defects (ASD)

Atrial Septal Defects: Surgical And Transcathether Management

http://tchin.org/resources/resorm/c_art_14.htm

Bronchopulmonary Dysplasia(BPD)

The BPD Page

http://www.geocities.com/HotSprings/Spa/8100/bpd.html

Bronchopulmonary Dysplasia (BPD)

http://www.cheo.on.ca/bpd/index.html

Feeding Tubes

http://members.iinet.net.au/~scarffam/serve/cache/1.html

Hydrocephalus

Hydrocephalus mailing list and information

http://www.hydroassoc.org

Hydrocephalus FAQ

http://www.asbah.demon.co.uk/whatishyd.html

Intraventricular Hemorrhage (IVH)

Intraventricular Hemorrhage

http://www2.medsch.wisc.edu/childrenshosp/parents_of_preemies/ivh.html

IVH/PVH Management and Prophylaxis

http://www.neonatology.org/syllabus/ivh.management.html

Infections

Perinatal Bacterial & Fungal Infections

http://www.pedid.uthscsa.edu/095.htm

Epidemiology and Clinical Aspects of Unusual Fungal Nosocomial Infections

http://www.nfid.org/publications/clinicalupdates/fungal/noso.html

Necrotizing Enterocolitis

What is NEC?

http://www2.medsch.wisc.edu/childrenshosp/parents_of_preemies/nec.html

Necrotizing Enterocolitis

http://www.apsna.com/Resources/Articles/kasson.htm

Periventricular Leukomalacia (PVL)

What is Periventricular Leukomalacia (PVL)?

http://www2.medsch.wisc.edu/childrenshosp/parents_of_preemies/pvl.html

http://www.computer-connection.net/~reenie/index.htm

http://www.geocities.com/Heartland/Hollow/1188/PVL.htm

Reflux -- GERD

Reflux Information

http://www.reflux.org/

Information re: Reflux/Medication/Testing

http://www.geocities.com/HotSprings/Villa/2193/index.html

Retinopathy of Prematurity (ROP)

http://www.konnections.com/eyedoc/ropstart.html

Preventing Blindness in Premature Infants

http://www.rdcbraille.com/pbpb.html

Seizures

Epilepsy in Young Children

http://www.geocities.com/HotSprings/1000/index.html

Initial management of new onset seizures, to treat or not to treat?

http://www.seizures.net/articles_epilepsy/new_onset.html

Tracheostomy

Aaron's Tracheostomy Page

http://www.tracheostomy.com

Vision Impairment

http://www.blindbabies.org/factsheet_cvi.htm

Social and psychological support
Michael Hynan
Helping Parents Cope With A High-Risk Birth: Terror, Grief, Impotence, and Anger
http://www.uwm.edu/People/hynan/MINNAEP.html

Preemie-L FAQs

When your baby is premature: advice for new parents

http://www.preemie-l.org/advice2.html

So, someone you know has had a premature baby? Advice for friends and family of anyone who has had a premature baby

http://www.preemie-l.org/advice.html

Mara Tesler Stein, Psy.D
Coping with premature birth: an emotional journey
http://www.preemieparentsupport.com

Postnatal Depression

Postnatal Depression Sites

http://home.columbus.rr.com/ppd/ppdsites.html

Loss of a baby

Mother's in Sympathy & Support (MISS)

http://www.misschildren.org/

My Parents Are Survivors

http://www.moms-dads.com/index.html

Loss of a twin or multiple

http://www.geocities.com/Heartland/Hollow/1188/TwinLoss.htm

Post discharge
After the NICU: advice for when you finally bring baby home
http://home.san.rr.com/gtbangs/advice.htm

Comeunity
Support for the long-term impacts of prematurity
http://www.comeunity.com/premature/index.html

Cerebral Palsy

Information/support for families living with cerebral palsy

http://www.geocities.com/~kasmom/

Cerebral Palsy

http://www.comeunity.com/disability/cerebral_palsy/index.html

Constipation

Chronic Constipation

http://www.med.virginia.edu/cmc/tutorials/constipation/

Feeding issues

A resource page, listserve and bulleting board for feeding issues in babies and young children (includes premature baby weight chart)

http://members.aol.com/_ht_a/Lmwill262/index.html

Working with infants & children with feeding, swallowing, oral-motor & pre-speech problems

http://www.new-vis.com/

Growth

Will my Preemie "Catch-Up"?

http://www.comeunity.com/premature/child/growth/catchup.html

Hearing impairment

Frequently Asked Questions

http://www.johntracyclinic.org/gallery.htm

Using sign language with hearing impaired/speech delayed children

http://www.sign2me.net/

Respiratory problems

ABC's of Infant Resuscitation

http://www.tremethick.org/abcs.htm

Information on RSV

http://www.rsvinfo.com/

Scars

Scars of the NICU

http://www.comeunity.com/premature/scars.html

Sensory Integration

http://www.sinetwork.org/

Speech

Research on the Impact of Prematurity on Speech and Language of Children

http://www.comeunity.com/premature/research/research-speech.html

Sleeping

http://www.pediatrics.wisc.edu/childrenshosp/parents_of_preemies/faq4.html

Teeth

Dental Problems Related to Prematurity

http://www.comeunity.com/premature/child/dental-maroney.html

Multiples
Parentsplace.com
Having Twins: When they are Premature
http://www.parentsplace.com/family/multiples/gen/0,3375,11537,00.html

Amy Tracy
Parenting More Than One Preemie
http://www.preemieparents.com/articles/earlyarrival.htm

Premature Fathers
Yahoo Club for Dads of Premature Infants
http://clubs.yahoo.com/clubs/dadsofprematureinfants

Real-Life Preemie Stories
Preemie web ring
http://members.aol.com/liznick1/preemiering.htm

Subsequent pregnancy

pppg-subscribe@egroups.com

http://www.spals.com/

U.S. Government Assistance

http://www.c-c-d.org/index.htm

http://www.ssa.gov/

Pregnancy complications
High-Risk Pregnancies

Support for Women Experiencing a High-Risk Pregnancy

http://www.sidelines.org/

Bedrest

Amy Tracey's Bedrest Support site

www.pregnancybedrest.com

Group Beta Strep

http://www.gentlebirth.org/archives/gbs.html

HELLP Syndrome

http://members.aol.com/hellp1995/index.html

http://members.home.net/anderpander/birthstories.html

Incompetent Cervix

Incompetent Cervix and Pregnancy

http://www.geocities.com/incompetentcervix/index.html

Intra Uterine Growth Retardation (IUGR)
http://www.dartmouth.edu/~obgyn/mfm/PatientEd/IUGR.html Placenta Previa

Club Previa

http://members.aol.com/nofoolkc/index.htm

Pre-Eclampsia

The Pre-Eclampsia Site

http://www.pre-eclampsia.co.uk

Premature Rupture of Membranes (PROM)

Inkan's PROM Page

http://www.kanalen.org/prom/

Pre Term Labor

Preventing Pre Term Labor

http://www.noah-health.org/english/pregnancy/march_of_dimes/birth/preterm2.html

Am I in Labor?

http://my.webmd.com/content/dmk/dmk_article_3961212

Twin to Twin Transfusion Syndrome

http://www.tttsfoundation.org/

Copyright 2000 Anne Casey/Raquel Schnitzer

Links from other internet sites must include acknowlegement of the authors and of Preemie-L

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Resources for new parents of premature babies

Resources for new parents
of premature babies