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This site is created to help new preemie moms (and Dads).  We hope to offer guidance, hope, and advice at a time of fear and uncertainty.  My son, Noah, was born at 26 weeks weighing just 2lbs 1oz.  He spent 11 weeks in the NICU.  He is now a happy, healthy three year old!  If you have any information to add to this site please feel free contact me .


Advice:


- Get a few primary nurses (nurses assigned to your baby whenever they are working).
-Ask questions as many times as you need to so that you understand what is happening with your baby.
- Be an advocate for your baby.  If something doesn't seem right, speak up.
- Take every day one at a time.  There will be good and bad days, that's why it's called the NICU rollercoaster.
- Take lots of pictures.  Take weekly pictures next to a marker, stuffed toy, etc to measure growth.
- Keep a journal or calendar, refer back to the good days often.
- Celebrate little milestones.
- Ask what you can do to help your baby.  Once they are stable you can often change diapers, take temps, etc.
- Rest and take the time you need to take care of yourself.
- Attend NICU support groups if available.
- Ask for help from others if you need it.
- Start a blog to keep friends and family members updated, and to give yourself something to look back on when your baby is older.
-
Don't watch the monitors, watch your child.  It helps you to enjoy your baby more.


Links:

Terms used in the NICU :
http://www.umassmemorial.org/MedicalCenterIP.cfm?id=3409

Breastfeeding and Pumping -
 www.kellymom.com


Preemie Message Board:
 
http://community.thebump.com/cs/ks/forums/4236745/ShowForum.aspx

A comprehensive Web site that provides information for parents after the NICU:

http://www.pediatrics.emory.edu/neonatology/dpc/


Articles and resources empowering parents of children with disabilities and special needs: http://www.childrensdisabilities.info/

Information and support regarding reflux
:
 
http://www.reflux.org

  Information and resources regarding retinopathy of prematurity (ROP):
http://www.ropard.org/

Letter explaining RSV to friends and family:
http://www.preemiecare.org/rsvletter.pdf 

Informative preemie blog :
www.preemieparenting.blogspot.com

Guide for gross and fine motor skills and development games:
http://www.earlychildhood.msstate.edu/motoractivities/infant-toddler.pdf

Isabell's Gift, a non-profit organization dedicated to supporting families with children in the NICU:
http://www.isabelsgift.com/

Preemie baby book template to commemorate your child's time in the NICU:
http://www.earlyarrivalinc.com/index.html

Request "Please Wash Your Hands Before Touching Mine" stroller sign:
http://www.synagis.com/rsv-protection.aspx



  Books:

Early days

Preemies: The Guide for Parents of Premature Babies
by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron M.D. (2000)


Neonatal intensive care: what every parent needs to know
by Jeanette Zaichkin (1996)

Handbook of neonatal intensive care
by Gerald Merenstein, M.D. and Sandra L. Gardner (ed.) (1997)

Baby E.R. : The heroic doctors and nurses who perform medicine's tiniest miracles
by Edward Hume (November 2000)

Kangaroo care: the best you can do to help your preterm infant
by Susan M. Ludington-Hoe and Susan K. Golant (1993)

Emotions and psychology

Early passage: a journal for parents of preemies
by Priscilla Hernandez Hacker and Carolyn Ringo (September 2001)
 

Parenting your premature baby and child : the emotional journey
by Deborah Davis and Mara T. Stein, Fulcrum. (May 2004)

Parents of premature infants: their emotional world
by Norma Tracey et al. Whurr Publishers (July 2000)

Learning to love: the developing relationships between mother, father and baby during the first year
by Lorraine Rose, ACER Press (October 2000)

Before their time: lessons in living from those born too soon
by Daniel Taylor and Ronald R. Hoekstra (August 2000)

Empty cradle, broken heart: surviving the death of your baby
by Deborah L. Davis (November 1999)

The fate of early memories: developmental science and the retention of childhood experiences
by Mark L. How (1999)

Development of premature babies

The development of infants born at risk
by Deborah L.Reich, Jill Nagy and Joseph F. Holmes

Developmental and Behavioral Characteristics of Preterm Infants
by Lynn B. Hadley, Deborah West, Alison Turner, Sue Santangelo (September 1999)

Breastfeeding

Breastfeeding your premature baby
by Gwen Gotsch (March 1999)

Mothering multiples: breastfeeding and caring for twins or more
by Karen Kerkhoff Gromada (July 1999)

Breastfeeding the infant with special needs
by Donna Dowling (June 1997)

 

Stories by parents

Coming to term: a father's story of birth, loss, and survival
by William Woodwell (September 2001)

Laurel's primer for parents of micro-preemies
by Laurence J. Gist (January 2000)

Living miracles: stories of hope from parents of premature babies
by Kimberley A. Powell and Kim Wilson (April 2000)

The peace of God - a mother's journal of God's grace for her and her family during a high-risk pregnancy and the premature birth of their daughter
by Sara J. Groenheide (November 2000)

You are not alone - 20 stories of hope, heroism, heartache and healing told by the parents of children treated in the NICU
by Sabra Albritton et al.(eds.) (September 1998)


The preemie parents' companion : the essential guide to caring for your premature baby in the hospital, at home, and through the first years
by Susan L. Madden (September 2000)

Caring for your premature baby : a complete resource for parents
by Alan H. Klein and Jill Alison Ganon (October 1998)

In time and with love : caring for the special needs baby
by Marilyn Segal, 2nd ed. (January 2001)

Sleeping

Healthy sleep habit, happy child
by Marc Weissbluth (April 1999)

Sleep better! A guide to improving sleep for children with special needs
by Vincent Mark Durand (November 1997)

Communication and speech development

Early language development in full term and premature infants
by Paula Menyuk, Jacqueline W. Libergott and Martin C. Schultz (March 1995)
 

How to talk to your baby: a guide to maximising your child's language and learning skills
by Dorothy P. Dougherty (September 1999)

The new language of toys : teaching communication skills to children with special needs: a guide for parents and teachers
by Joan E. Heller Miller and Sue Schwartz (April 1996)

Baby signs : how to talk with your baby before your baby can talk
by Linda Acredolo and Susan Goodwyn (April 1996)

Long-term medical problems

Children with cerebral palsy : a parents' guide
by Elaine Geralis (September 1998)

Hydrocephalus : a guide for patients, families and friends
by Chuck Toporek and Kellie Robinson (February 1999)

ADHD in the young child : driven to re-direction : a book for parents and teachers
by Cathy L. Reimers and Bruce A. Brunger (1999)

Behavioral intervention for young children with autism : a manual for parents and professionals
by Catherine Maurice (ed.) (December 1996)

Pediatric tracheostomy home care guide
by Cynthia M. Bissell (April 2000)

That's my child : strategies for parents of children with disabilities
by Lizanne Capper (April 1996)

Living with a brother or sister with special needs : a book for sibs
by Patricia Vadasy and Donald Joseph Meyer (November 1996)

Clothing
*Each NICU has different requirements about when babies can be dressed.  Please check with your NICU before buying micro-preemie clothes.
Wal-mart
Babies R Us
http://www.preemie.com/Micro-Preemie_c_3.html
http://www.babylinq.com/micropreemieclothes.aspx
http://www.nurtureplace.com/baby-clothes/start.cgi/preemie-clothes/micropreemie.html?nps=,s,ns
http://www.jacquispreemiepride.com/Merchant2/merchant.mvc
http://www.preemiesrus.com/catalog/index.php
http://www.ittybittybundles.com/items/micro-preemie~1-3-lb-/list.htm
http://www.preemieproud.com/
http://www.avababys.com/servlet/StoreFront
http://www.littlesproutcollection.com/collections.asp
ETC.

Formula

www.neosureoffer.com

Provides coupons for Similac NeoSure (formula for preemies)

www.bulkforcheap.com

www.800diapers.com

NeoSure sold at Wal-Mart, Babies R Us and CVS

 
 

Preemie Diapers

Pamper Swaddler in preemie size sold at Babies R Us




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