PREMATURITY & NICU
"In the NICU, time moves differently. Days are measured not in hours but in heartbeats, breaths, and milliliters of milk. Every small victory becomes a celebration, and every parent becomes a warrior."
- Cheri BergeronFor parents navigating the NICU journey with a premature baby, these resources provide essential medical information, emotional support, and practical guidance. The NICU experience can feel overwhelming, but you're not alone—these organizations and resources are here to help you advocate for your baby and care for yourself during this challenging time.
March of Dimes – Premature Birth & NICU Support
One of the most comprehensive public-facing sources on prematurity, NICU levels, and post-NICU care. Includes parent stories, developmental milestones, and advocacy efforts.
MedlinePlus – Premature Babies
Run by the U.S. National Library of Medicine, offering evidence-based summaries of medical risks, care needs, and common conditions affecting premature babies.
Stanford Medicine – NICU Handbook
A clinical guide that's surprisingly readable for non-medical parents. Great for understanding what happens medically behind the scenes in the NICU.
American Academy of Pediatrics – Preemie Care
Professional medical guidance from pediatricians with parent-friendly explanations of preemie development and care needs.
Hand to Hold
Peer-to-peer support for NICU and bereaved parents. Offers virtual support groups, podcasts, and counseling. Based in Austin, TX—great for regional families as well.
Graham's Foundation
Focused on empowering preemie parents. Offers care packages, mentoring, and curated information organized by baby's gestational age. Active in NICU awareness campaigns.
NICU Parent Network (NPN)
Collaborative community of NICU-focused organizations. Great for connecting with local resources and advocacy efforts.
Preemie Parent Alliance
Connects families with similar NICU experiences and provides resources for navigating insurance, developmental delays, and medical needs.
"Preemies: The Essential Guide for Parents of Premature Babies"
By Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron, MD. A comprehensive, compassionate, medically grounded guide for NICU parents.
"The NICU Rollercoaster"
By Ali Dunn. Written by a NICU mom and nurse, offering emotional support and understanding for parents navigating the NICU experience.
"Kangaroo Kisses"
By Elizabeth Kuebler-Ross. A poetic board book for parents practicing kangaroo care—beautiful for bonding moments in the NICU.
"Little Babies, Big Challenges"
By Marlene Ritchie. Practical advice for parents of premature babies, covering everything from NICU navigation to bringing baby home.
Hand to Hold Podcast
Interviews with NICU parents, medical professionals, and advocates. Covers topics from NICU survival to thriving after discharge.
Life After NICU
Helpful podcast for post-discharge parents dealing with ongoing medical needs, developmental delays, and family adjustment.
Peekaboo ICU Blog
Educational blog posts for parents navigating NICU care, written by medical professionals and experienced NICU parents.
NICU Awareness Month Resources
September is NICU Awareness Month. Many organizations create special content, awareness campaigns, and fundraising efforts during this time.
Ronald McDonald House Charities
Provides temporary housing for families whose children are receiving medical treatment. Essential for families traveling long distances for NICU care.
Social Security Disability for Preemies
Some premature babies qualify for SSI benefits. This can help cover medical expenses and therapy costs during the critical early years.
Hospital Social Workers
Most NICUs have social workers who can help navigate insurance, financial assistance programs, and community resources. Don't hesitate to ask for help.
Local Early Intervention Programs
State-funded programs that provide developmental services for babies and toddlers with delays. Contact your state's Early Intervention program for evaluation and services.
Postpartum Support International (PSI)
Offers support groups specifically for NICU parents dealing with anxiety, depression, and trauma related to their baby's medical journey.
NICU Parent Mental Health
Specialized therapy for NICU parents experiencing anxiety, depression, or PTSD. Look for therapists with perinatal and medical trauma experience.
Mindfulness and Meditation Apps
Apps like Headspace, Calm, and Insight Timer offer guided meditations specifically for parents in medical crisis situations.
Hospital Chaplains and Spiritual Care
Most hospitals have chaplains or spiritual care coordinators who can provide emotional support regardless of your religious background.