Hailey's Hope Foundation

Supporting Families in the NICU

APPS AND BOOKS

APPS

MyPreemie  (available for iPhone and iPad; $4.99 on iTunes)

A great resource for families of premature babies in the NICU.  This app comes from the same team (two mothers of premature babies and a neonatologist) who wrote the highly praised book Preemies: The Essential Guide for Parent of Premature Babies.  Its features include A Pocket Guide to Preemies, A Remember to Ask List, A Remember to Do List, A Diary, A Trackers section, and a Treasured Mementos section.

Learn more about the MyPreemie App on iTunes at https://itunes.apple.com/us/app/mypreemie/id620128292?mt=8


BOOKS

From Hope To JoyFrom Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds (August 2013)

By Jennifer Degl (Teacher and former NICU parent)

Jennifer Degl brings her readers on an emotional roller coaster: from the decision to get pregnant despite warnings from her doctors—and nearly dying four times during her pregnancy—to the birth of her daughter, Joy, seventeen weeks early, and this tiny baby’s fight to survive.  The Degl family’s journey sheds light on the many challenges families face  with a life-threatening pregnancy and birth, the hospitalization of an extremely premature newborn in the NICU, and the struggle to maintain normalcy for siblings at home.  It is a riveting story to which many NICU parents can relate, especially parents of micropreemies.

Available on Amazon.com®:  http://www.amazon.com/From-Hope-Joy-Determination-Preemies/dp/061584443X

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Preemies Essential Guide 2nd editionPreemies – Second Edition: The Essential Guide for Parents of Premature Babies (November 2010)

By Dana Wechsler Linden, Emma Trenti Paroli (two moms of preemies) and Mia Wechsler Doron, M.D. (neonatologist)

A great parent reference resource, which has been updated from their 2000 edition to reflect advances in neonatology.  Authors Dana Wechsler Linden and Emma Trenti Paroli are parents who have “been there.” Together with neonatologist Mia Wechsler Doron, M.D., they answer the dozens of questions that parents will have at every stage—from high-risk pregnancy through preemie hospitalization, to homecoming and the preschool years.

Available on Amazon.com®:  http://www.amazon.com/Preemies-Edition-Essential-Parents-Premature-ebook/dp/B00APJ7KXG

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Living MiraclesLiving Miracles:  Stories of Hope from Parents of Premature Babies (April 2000)

By Kimberly A. Powell and Kim Wilson (Editors) and foreword by Jeffrey Thompson, M.D.

Twenty-two engrossing stories of babies born prematurely, written by their parents.  In painstaking and heartfelt detail, these parents share their fears, their joys, the stories of where they turned for help, their tips, and most importantly, their triumphs.

Available on Amazon.com®:  http://www.amazon.com/Living-Miracles-Stories-Parents-Premature/dp/0312245505

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For Those Who Hold The Littlest HandsFor Those Who Hold the Littlest Hands

By Kirsti A. Dyer (Physician, Health Educator, Professor, Author and former NICU mom)

Information and support for parents of babies in the NICU.  Please visit Dr. Dyer’s website to download this FREE ebook.

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GENERAL RESOURCES

Text4Baby

Free text messages on topics such as prenatal care, baby health, parenting and more — support throughout your pregnancy and your baby’s first year.

Learn more about Text4Baby at https://text4baby.org/.


Lotsa Helping Hands

An online database of volunteer opportunities for when you need help or you want to provide help to someone in need in your community.  This is a great resource to help out families in the NICU — you can coordinate volunteers for meal deliveries, car rides for siblings and more.

Learn more about Lotsa Helping Hands at http://www.lotsahelpinghands.com/.


CarePages

Free patient blogs that connect friends and family during a health challenge.  A great resource for NICU parents who want to keep family and friends updated on their baby’s progress without having to make multiple telephone calls.

Learn more about CarePages at https://www.carepages.com/.


Preemie Babies 101

PreemieBabies101 is Hand to Hold’s parent blog inspired by the many diverse experiences that are common to parents who have a preemie and spent time in the NICU, have a special needs child or have experienced a loss.

Learn more about Preemie Babies 101 at http://www.preemiebabies101.com/.


Hydrocephalus Association

The Hydrocephalus Association provides support, education and advocacy for people whose lives have been touched by hydrocephalus and the professionals who work with them.

Learn more about the Hydrocephalus Association at http://www.hydroassoc.org/.


Preeclampsia Foundation – Preeclampsia and HELLP Syndrome

A great resource of information and support for people whose lives have been affected by HELLP Syndrome, preeclampsia and eclampsia– mothers, babies, fathers and their families.

Learn more about the Preeclampsia Foundation at http://www.preeclampsia.org/.


Preemie Milestones

Not all babies grow and develop at the same rate, especially premature babies.  Helpful information on preemie milestones can be found on HealthyChildren.org at http://www.healthychildren.org/English/ages-stages/baby/preemie/pages/Preemie-Milestones.aspx  and  on Babycenter.com at http://www.babycenter.com/404_when-will-my-premature-baby-reach-development-milestones_10304028.bc.

51itc1bhrFL._SY300_Newborn Intensive Care:  Third Edition: What Every Parent Needs to Know (October 2009)

By American Academy of Pediatrics (Author) and Jeanette Zaichkin, RN, MN, NNP-BC (Editor-in-Chief)

Significantly revised and updated, the new third edition of the best-selling Newborn Intensive Care: What Every Parent Needs to Know is a great resource for any parent with a premature infant.  The book covers everything from how to overcome barriers to NICU parenting to how to prepare for and nurture your NICU graduate at home.

Available on Amazon.com®:  http://www.amazon.com/Newborn-Intensive-Care-Parent-Zaichkin/dp/1581103077/ref=sr_1_1?s=books&ie=UTF8&qid=1382553949&sr=1-1&keywords=Newborn+Intensive+Care

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MEDICAL RESOURCES

The Lahav Lab at Brigham and Women’s Hospital (Boston, MA)

The Lahav Lab is dedicated to performing clinical research to help improve the quality of life of infants and young children. Their work is focused on developing ways to optimize brain development and long-term outcomes of extremely premature infants in the NICU. They develop innovative bedside solutions with the hope of making significant impacts on perinatal and neonatal care.  Hailey’s Hope Foundation is proud to help fund clinical research at The Lahav Lab.

Learn more about The Lahav Lab at http://lahav-lab.bwh.harvard.edu/.


RSV (Respiratory Syncytial Virus)

RSV is a contagious viral disease that may infect a person’s lungs and breathing passages.  In premature infants, severe RSV disease can lead to serious lung infection and hospitalization.

Learn more about RSV at https://www.rsvprotection.com/.


Synagis

Though not a vaccine, Synagis [si-nah-jis] is an FDA-approved prescription injection of antibodies that is given monthly to help protect high-risk infants, including preemies, from severe RSV disease throughout the RSV season.

Learn more about Synagis at https://www.synagis.com/.


WebMD: Preemies Directory

WebMD.com offers comprehensive coverage about how premature infants are cared for, what complications may arise, what to expect later in life, and more.

Learn more about WebMD at http://www.webmd.com/parenting/baby/premature-infants-preemies-directory.


HealthyChildren.org (by the American Academy of Pediatrics)

A parenting website backed by over 60,000 American Academy of Pediatrics member physicians offering up-to-the-minute health advice for parents and caregivers.

Learn more about HealthyChildren.org at http://www.healthychildren.org/english/Pages/default.aspx.


Today’s moms embrace age-old concept of Kangaroo Care for newborns

Dr. Lin-Lin Remenar, a pediatrician with Crystal Run Healthcare in Wallkill, New York, knows personally and professionally the benefits of kangaroo care.  It benefitted her daughter born at 32 weeks gestation.  Read the full article at http://www.recordonline.com/apps/pbcs.dll/article?AID=/20110525/HEALTH/105250307.

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