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Resources

 

 

Resources for Parents

Medication Delivery Devices

  • OxyPhone® – A nebulizer machine that delivers medication through the mouth piece of the machine, while simultaneously playing music through the earpiece to increase the ease at which children receive medication.
  • Tummy Tunnels™ – Provides a fashionable solution for dressing a child with a feeding tube.

Orthotics and Specialty Wear

  • Hatchback Footwear – Designs shoes to help with children’s fine motor development and alignment, and provide comfort for children who need them.
  • Preemie Store – Carries various clothing, wombmates, shoes, and other attire for preemies.

Home Care

  • Continuum Pediatric Nursing – A pediatric home care agency that uses RNs and LPNs to take care of medically fragile children in the home setting for long term care and visits.  Patients’ ages range from birth to 21. Patient population has some sort of technological equipment connected to their care.
  • Nurse-Family Partnership – Provides low-income, first time moms with care and support they need for a healthy pregnancy, care for their children, and a better life.

Respite Care

Child Care

Speech and Writing Aids

  • Baby Builders – An exercise program that teaches parents how to be proactive in their infant’s development with educational live stream videos or DVDs available through their online store.
  • Handwriting without Tears - A curriculum designed to make handwriting less frustrating for children.
  • Soothie Pacifier – A pacifier that comes in numerous sizes and colors for infants and children.
  • Speech Buddies – A set of revolutionary tools to help children overcome speech difficulties.
  • Therapy Shoppe – An online shop with sensory products, educational toys, and other tools parents and health professionals can use to improve the motor development, speech, and handwriting for children.
  • Two Little-Hands – Offers active learning resources to help children develop a larger vocabulary and learn to communicate before they even learn to speak.

Online Support

  • Caring Bridge – Offers a free personalized website to people facing a serious medical condition or hospitalization, undergoing medical treatment, or recovering from a significant accident.
  • EduTriplets.com – A site for families of NICU babies and the medical professionals who care for them to participate in podcasts, forums, and much more.
  • Mamas on Bed Rest and Beyond – Provides links to preemie parent resources in addition to other resources for mothers experiencing a high risk pregnancy.
  • MicroPreemies - Provides information about feeding, community, and support groups available online and specific to the western US.
  • Mike & Ollie: 24 Weekers Who Beat the Odds – A supportive blog for parents of preemies.
  • MOST (Mothers of Supertwins) – A national support group for parents and expectant parents of triplets, quadruplets, quintuplets, sextuplets, and more.
  • Papas of Preemies – A blog created in efforts to raise awareness about prematurity and all things encompassing life in/after NICU. The blog welcomes anyone to share stories and insight, especially dads.
  • Pebbles of Hope - A nonprofit organization serving parents of premature babies in under-served areas.
  • PreemieCare – Aims to support families of infants born preterm through education, support, and resources.
  • Preemie Help - Provides educational information, community networks, solutions and a preemie store.
  • Preemie Parenting – Offers hope, inspiration, support, and resources for parents and loved ones of premature infants, and women experiencing a high risk or complicated pregnancy.
  • Peekaboo ICU Preemie App - The free app is a tool made specifically for parents of preemies. Designed to inform, inspire, and engage parents as they navigate their way through the NICU.  
  • Hope for HIE - Promotes support, awareness and education for families of children diagnosed with Hypoxic Ischemic Encephalopathy. 

Direct Support

  • The Cord Blood Center - provides families with relevant information on cord blood, banking options and emerging research.
  • Eli’s Hope – Serves Chicago-area NICU families to meet both practical and spiritual needs.
  • Families Blossoming – Provides direct and virtual professional coaching, transformative emotional support and other related services to preemie and special needs parents, post-NICU and/or post-diagnosis, to help them reach a point of clarity, hope, direction and empowerment throughout their parenting journey. Also supports preemie and special needs professionals, hospitals, organizations and agencies, via a number of joint partnership working collaborations, workshops and seminars, so they are better equipped and able to effectively support the families they serve.
  • Fragile Beginnings Preemie Parent Alliance – Committed to improving the lives of preemie parents throughout New England by providing direct support services, educational materials, and connections to community resources.
  • Graham’s Foundation - Supports parents of preemies by providing care packages during their preemie’s journey in the NICU to their transition home, along with many other resources.
  • Hand to Hold – Matches seasoned parents of preemies with parents in need of support, as well as provides ongoing support, education and navigation resources to parents.
  • Holding Tiny Hands Foundation – Works to improve the outcomes of micropreemies and chronically ill infants by addressing the parent’s need through an established support system of parents who share similar experiences.
  • Infant Massage of USA – Promotes nurturing touch through training, education, and research so babies, parents, and caregivers are loved, valued, and respected.
  • NICU Helping Hands – Provides comprehensive support programs and resources to parents of premature infants not only during their stay in the NICU, but during and after their transition home in Dallas/Fort Worth, Texas.
  • Preemie Parents Foundation – Provides tools, support, and educational resources for parents and caregivers of preemies.
  • Preemies Today - Advocates the needs of families experiencing the traumatic event of premature birth by providing education, support, resources (national and specific to the DC metropolitan area), and a sense of community throughout childhood.
  • Special Kids, Special Care – Provides health support services for parents through online- and at-home services and family support grants.
  • Team Grayson - Dedicated to raising awareness and support for research of necrotizing enterocolitis.
  • Texas Parent to Parent – Provides a variety of resources, education and training to parents, family members, professionals, and others who share an interest in improving lives of children with a disability, chronic illness, or special health care need.
  • The Tiny Miracles Foundation – Dedicated to helping families with premature infants in and around Fairfield County, Connecticut.
  • Zoe Rose Memorial Foundation – Supports families of micropreemies through education, outreach, and one-on-one parent support.
  • Connected Forever - Supports families who have experienced prematurity through resources, education, and emotional support.
  • Pacify - A service that allows parents to make video calls to International Board Certified Lactation Consultants, as well as pediatric nutritionists and registered nurses. Pacify's network of clinicians is available on-demand, 24/7.

Books and Other Educational Materials

  • Going Home: A Parent’s Checklist – A helpful tool for parents to prepare for their baby’s homecoming.
  • PreemieWorld - Seeks to bridge the gap between parents and professionals in the NICU, at home, and beyond the clinic with books, videos, and other products.
  • Zero to Three - Provides parents, professionals, and policymakers with knowledge and know-how to nurture early development.
  • Rich and Creamy for Our Preemie - a coloring book that supports and educates NICU families and explains the role of human milk in the NICU.

Financial Assistance

  • Aubrey Rose Organization – Helps families caring for children with life threatening illnesses, with the focus being on family unity. They strive to lift families from life’s complexities during this difficult time by providing emotional and financial support.
  • Caiden’s Hope Foundation – A nonprofit NICU-family support organization serving Texas and California that seeks to alleviate the unexpected financial burdens of travel and hotel stays for families whose infants have necessary, extended, non-elective clinic or hospital stays.
  • Medicaid – Medicaid pays for a full set of services for children, including preventive care, immunizations, screening and treatment of health conditions, doctor and hospital visits, and vision and dental care.
  • NeedyMeds - Maintains a website of free information on programs that help people who cannot afford medications and healthcare costs.
  • RSV Prevention and Synagis® Payment Assistance – Assists qualified commercially insured Synagis® (palivizumab) patients with their Synagis® copays. The MedImmune Assistance Program is administered as part of the Synagis® Reimbursement Hotline and can be reached by calling 1-877-778-9010.
  • Skyler’s Gift Foundation - Raises funds to support families in need of financial assistance for mortuary and burial costs, as well as grief counseling and support groups for moms and dads and siblings of premature babies. Skyler’s Gift also supports ongoing research to prevent premature births and deaths and raise awareness of and provide education on this very personal issue.
  • State Children’s Health Insurance Program (SCHIP) – SCHIP provides free or low-cost health coverage to assist with paying for a range of services, including regular check-ups, immunizations, hospital care, dental care, and lab and x-ray services.
  • United Healthcare Children’s Foundation – Dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan.

Advocacy

  • Family Voices - Provides families with tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on healthcare.
  • Healthy Child Care America Safe Sleep Campaign – Aims to promote the health and safety of infants in child care settings by providing education and outreach to childcare providers and parents around sleep recommendations.
  • Institute for Patient- and Family-Centered Care – Provides leadership to advance the understanding and practice of patient-and family-centered care in hospitals and other health care settings.
  • National Perinatal Association – Dedicated to the promotion of health care and public policy to ensure the optimal health and long-term development for mothers, infants, and children.
  • NEC Society: The NEC Society is a national collaborative nonprofit bringing together clinicians, researchers and family advocates in an effort to reduce the incidence of necrotizing enterocolitis in fragile infants.
  • PreemieVoices - Provides insight into the premature world, and local and national connections for those interested in learning more about the NICU world.

National Networks

  • March of Dimes – Provides information around pregnancy, birth defects, prematurity, and research around these designated fields.
  • Maternal and Child Health Bureau – Provides leadership, in partnership with key stakeholders, to improve the physical and mental health, safety, and wellbeing of the maternal and child health population.
  • National Dissemination Center for Children with Disabilities – Provides information and resources for toddlers and children with disabilities.
  • National Healthy Mothers, Healthy Babies Coalition – A leader and resource in maternal and child health, reaching an estimated 10 million health care professionals, parents, and policymakers.
  • Preemie Parent Alliance – A conglomerate of organizations that provide support to parents of preemies. PPA is committed to supporting the growth and development of its members to help improve the quality and effectiveness of the services they provide.
  • Consumer Dangers - Provides a comprehensive free resource for the public to learn more about defective children's devices such as baby strollers, high chairs, and drop side cribs that can potentially cause harm and even death.
  • The Gift of Life - Provides resources for families of preemies.
  • PostpartumDepression.org - offers information about PPD and support resources.

If you have a resource you would like to be included on this page, please contact NCfIH at info@infanthealth.org

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Resources for Professionals

 Advocacy and Awareness

  • NEC Society: The NEC Society is a national collaborative nonprofit bringing together clinicians, researchers and family advocates in an effort to reduce the incidence of necrotizing enterocolitis in fragile infants.
  • Premature Infant Advocacy Toolkit – This toolkit provides information, guidance and resources designed to help parents become knowledgeable and skilled advocates for premature infants.
  • Resources for Prematurity Awareness Month – November is Prematurity Awareness Month. The March of Dimes has a number of activities throughout the month.

Discharge and Transitioning

  • Baby Steps to Home – This standardized, evidence-based discharge pathway created by the National Association of Neonatal Nurses contains downloadable documents for professional education as well as easy-to-understand handouts that nurses can share with parents prior to their baby’s discharge.
  • Transitioning Newborns from the NICU to the Home Toolkit – This toolkit from the Agency for Healthcare Research and Quality provides resources to hospitals that wish to improve the safety at which newborns are transitioned home from the neonatal intensive care unit (NICU).
  • Pediatric Respiratory Emergencies Algorithm - This guide from the ACLS Training Center is for pediatric respiratory emergencies.

Parents and Families

  • Family Teaching Toolbox – This toolbox is a compendium of articles for families taken from various issues of Advances in Neonatal Care, the journal of the National Association of Neonatal Nurses.
  • NICU Resource Library – This resource library from Hand to Hold provides NICUs access to tools to assist in the education and support of parents during their stay and in preparation for discharge. Materials are available in English and Spanish and can be customized and co-branded for your hospital.

Practice Guidelines

 News and Research

  • Global Action Report on Preterm Birth – This report produced by the March of Dimes provides the first-ever national, regional and global estimates of preterm birth and shows the extent to which preterm birth is on the rise in most countries, and is now the second leading cause of death globally for children under five, after pneumonia.
  • MedPage Today® – MedPageToday®, powered by Everyday Health Inc., is a trusted and reliable source for clinical and policy coverage that directly affects the lives and practices of health care professionals.
  • Pediatrics® Digest – Pediatrics® Digest is a free weekly offering of article summaries from Pediatrics packaged and delivered in a number of formats.
  • Perinatal Pediatrics – American Academy of Pediatrics – This website for neonatologists, pediatricians who work with premature infants, fellowship trainees, and families, features a wealth of resources and information, with separate webpages for neonatologists, pediatricians, trainees, and families.

Professional Membership Organizations

Federal Networks

  • National Institute of Child Health and Human Development (NICHD) – The NICHD was initially founded to realize a vision: to support the world’s best minds in investigating human development throughout the entire life process, focusing on understanding developmental disabilities, including intellectual and developmental disabilities (IDDs), and illuminating important events that occur during pregnancy.
  • NICHD Neonatal Research Network – The NICHD Neonatal Research Network is committed to researching ways to improve the health of low birth weight and premature infants.

 National Networks

Regional Networks

WESTERN STATES

  • California Premature Infant Health Network Coalition – Brings together a broad array of groups, individuals, and professionals interested in prematurity in the state of California, focusing on preconception health, prenatal care, NICU stay, discharges in the hospitals, transitional care, and long-term care.

MIDWESTERN STATES

  • Everthrive Illinois – Brings together physicians, hospitals, and community health organizations to increase the quality of healthcare for premature infants and their families in Illinois.
  • Minnesota Prematurity Coalition – Brings together community and health organizations, faith-based groups, healthcare providers, and parents to increase quality healthcare access and awareness around premature infant health issues.

SOUTHERN STATES

EASTERN STATES

  • Mothers and Babies Perinatal Network of South Central New York – Strives to make positive change in health outcomes for women, infants and families.
  • New York State Premature Infant Health Network – An initiative of the Association of Perinatal Networks of New York that seeks to develop a statewide network that will increase quality healthcare access and awareness around premature infant issues in New York State.
  • North Carolina Healthy Start Foundation – A nationally recognized private, nonprofit organization dedicated to reducing infant death and illness and to improving the health of women and young children in North Carolina.
  • Pennsylvania Preemie Network – Assesses the unique issues premature infants and their families face, including continuity of care, access to care, and available resources by raising awareness, delivering education, and promoting collaboration among stakeholders in Pennsylvania.

If you have a resource you would like to be included on this page, please contact NCfIH at info@infanthealth.org.

Events and Observances

June 2017

If you have an event you would like to be featured on this page, please contact NCfIH at info@infanthealth.org.