Two of the best NICU support organizations in the country are Hand to Hold and Project NICU, both of which are founded & run by former NICU moms.
They serve NICU families throughout the country, and they're good friends to us here at Every Tiny Thing.
In fact, a portion of every purchase of our Every Tiny Thing products goes towards supporting these two incredible groups. Check them both out to see if either one seems like the right support for you!
HAND TO HOLD® helps families before, during, and after a NICU stay and infant loss by providing powerful resources for the whole family, and most importantly, one-on-one mentoring from someone who has been there.
Our resources include virtual support groups, trained peer mentors for one-on-one support, in-hospital programs, podcasts, articles and social communities. All were designed with the emotional, physical and social needs of the whole NICU family – including siblings and grandparents. Our caring professional, experienced team comprised of NICU graduate and bereaved parents are trained as certified Peer Support Specialists through the state of Texas. These Family Support Specialists use their personal and professional experiences to ensure all Hand to Hold programs and services work for our NICU families, at every step in the journey.
PROJECT NICU is dedicated to supporting families with children in the Neonatal Intensive Care Unit and the medical professionals who care for them.
Project NICU offers connection, support and community to all involved in the NICU Journey. From NICU Care Packages, Peer Support, Graduate Programming, events and more we are here for every step of the journey.
Led by NICU Parents, our programs are designed with first hand experience with support by NICU medical professionals on our advisory board to truly create an environment where families and NICU Teams can feel supported.
You are not alone.
Mental Health Resources
Something that's not talked about enough in most NICUs is the emotional toll it takes on parents. Whether your baby is likely to be in the NICU for 5 days or 5 months, you'll definitely have a tremendous amount of stress, worry, fear & uncertainty which is hard to cope with.
I believe that almost every NICU family should consider seeking mental health support to help process the experience. Here are a few great resources to help you get started with that process
NICU HEALING is an online therapeutic resource designed for families currently in the NICU, recently released from the hospital, or coping with the residual effects of the trauma they experienced in having a preterm or medically complex infant.
This site offers parents and family members access to free tips, educational materials and resources, as well as a brief (8 week), for-pay individual and couples therapy program designed to help parents to cope with the trauma, anxiety and depression that can be triggered by the NICU experience, heal the damage that this trauma can wreak on a partnership, and to understand, solidify and strengthen parents' attachment with their baby.
NICU Healing also offers an eight hour staff training for NICU staffs and peer mentor program staffs to integrate trauma-informed care into their programs.
OPEN PATH PSYCOTHERAPY COLLECTIVE is a non-profit nationwide network of mental health professionals dedicated to providing in-office and online mental health care—at a steeply reduced rate—to individuals, couples, children, and families in need.
In partnership with licensed mental health clinicians in private practice throughout the fifty states, Open Path Psychotherapy Collective provides middle and lower-income level individuals, couples, families, and children with access to affordable psychotherapy and mental health education services.
Helpful NICU Articles
Here are a few articles I've written and a few we've discovered which are helpful for NICU parents, friends & family. If you find other articles you believe I should include, please let us know!
A basic introduction to some of the ways you can help your friend or loved one who has a baby in the NICU.
One NICU mother's wisdom about the truths of this journey, as well as the misconceptions. A great read!
The trauma of the NICU is real, and many parents of babies going through this experience will benefit from finding a professional to talk with. Here, a NICU mom who is also a therapist walks you through the steps of finding a therapist.
Disability Benefits Center
Disability Benefits Center is an independent organization dedicated to helping people of all ages receive Social Security disability benefits and maintain eligibility once approved. All our resources and the assistance we provide are always free. We’ve published thousands of articles on Social Security benefits as well as answered tens of thousands of questions via our blog, email, or SSD hotline regarding the Social Security application and approval process.