NICU Families NW

NICU Parent Resources

Every NICU experience is different and no two babies are the same. While it might feel as though you're the only person coping with these challenges, there are many web-based resources that supplement the services and programs NICU Families Northwest offers. We encourage you to spend some time exploring the information and links below to help you feel better educated about what to expect, supported in your emotional needs, and empowered to be the best advocate for your child(ren).

Websites and Links to More Information

If you have any doubt about how valuable peer support is, please take a moment to read Hand to Hold’s Why You Need a Support Group. It accurately identifies many of the benefits of finding a safe space to process your NICU experience.

NICU Families Northwest We are an inclusive non-profit organization dedicated to providing practical, ongoing, social and emotional support to NICU families in the Portland Metro, and Vancouver, WA region.

Baby Blues Connection The mission of Baby Blues Connection is to provide support, information and resources to women and families coping with pregnancy and postpartum mood disorders and to the professionals who serve them.

Hand to Hold’s NICU Family ForumManaged by the Austin, Texas organization, Hand to Hold, the NICU Family Forum offers interactive peer support that allows NICU families to seek out advice and share inspiration directly with one another. (*Formerly, “Life After NICU”)

Micro Preemie Moms A group exclusively for Mothers, Fathers and Guardians of Micro Preemie children (babies born weighing approximately under 2 pounds and less than 27 weeks). This group is a place where parents of Micros can find support and help in caring for their children who were born much too early. 

NICU Support Group Heather Lodahl began this group as a connection for moms, dads or family members to post about their experience while in NICU or after the fact. Many of the members are located in or around Vancouver, WA.

Parents of Preemies/Premature Babies Heather Armstrong was looking for a group about preemies that would be supportive, and helpful, and not asking for money. When she couldn’t find one, she created this group! It has over 6000 members, who ask questions, and offer answers, and are very welcoming to new people. There are members from all over the world. 

Peek-a-boo ICU Providing information and support to parents of a preemie or baby in the NICU. Helping to bridge the gap between parents and nurses. Providing a forum for open and honest communication so together we can make the NICU journey as smooth and memorable as possible. 

Graham’s Foundation is an Ohio-based nonprofit committed to providing resources, information and support to help parents navigate the preemie journey from birth through childhood.  *Also on Facebook*

Hand to Hold is a an Austin, Texas-based nonprofit providing ongoing support, education and navigation resources to parents of NICU babies or who experienced a loss. They have a fantastic 15-part Audio Support Series (podcast) available for free on their site. *Also on Facebook*

The Little Giraffe Foundation is dedicated to funding neonatal research and supporting the patients and parents of the NICU.

National Perinatal Association is a multidisciplinary organization whose membership is comprised of healthcare providers, parents & caregivers, educators and service providers. Their shared purpose is to give voice to the needs of pregnant people, infants, their families and their healthcare providers so that collectively they can have the greatest positive impact on perinatal care in the United States.

Peekaboo ICU is a fantastic website dedicated to taking the focus off of the medical aspects of the NICU, and put effort into empowerment and education for families, celebration of the baby, their growth and development, and parenting in the neonatal intensive care.

The Tiny Footprints Project is a wonderful organization that matches affiliated photographers with families of infants living in the NICU to provide one complimentary lifestyle portrait session and one complimentary downloadable gallery with the digital images from the session. We love Tiny Footprints and all the work they do to help NICU families make memories from the start.

Parenting Your Premature Baby and Child: The Emotional Journey is a gigantic book guaranteed to intimidate any NICU parent, but it is an incredible resource and offers a wealth of real-life information and parent reflections. Authors Deborah Davis, Ph.D., and Mara Tesler Stein, Psy.D., have a more academic tone than the typical parenting guide, but the book is comprehensive in its approach to understanding all the ways in which having a premature baby impacts a parent and the family. It is a fantastic resource for professionals looking to better understand the complexities of a NICU experience, and if a parent reads only the quotes from other NICU parents, they are sure to find a abundance of insight and comfort. 

Empty Cradle, Broken Heart: Surviving the Death of Your Baby The heartache of miscarriage, stillbirth, or infant death affects thousands of U.S. families every year. Empty Cradle, Broken Heart offers reassurance to parents who struggle with anger, guilt, and despair during and after such a tragedy. In its third edition, Deborah Davis encourages grieving and strives to cover many different kinds of loss, including information on issues such as the death of one or more babies from a multiple birth, pregnancy interruption, and the questioning of aggressive medical intervention. There is also a special chapter for fathers as well as a chapter on “protective parenting” to help anxious parents enjoy their precious living children. 

Preemies – Second Edition: The Essential Guide for Parents of Premature Babies is a parents’ reference resource with information on medical care written in a warm, caring, and engaging voice. Authors Dana Wechsler Linden and Emma Trenti Paroli are parents who have “been there.” Together with neonatologist Mia Wechsler Doron, they answer the dozens of questions that parents may have at every stage—from high-risk pregnancy through preemie hospitalization, to homecoming and the preschool years—imparting a vast, detailed store of knowledge in clear language that all readers can understand.

The Premature Baby Book: Everything You Need to Know About Your Premature Baby from Birth to Age One Dr. Bill Sears and his nurse wife Martha Sears have long been considered pediatric experts and are authors of the Sears Parenting Library. They co-wrote this book on the essentials of premature births with their two oldest sons, Bob and Jim, who are pediatricians, and the result is a comprehensive, authoritative guide to understanding why babies are born prematurely, what the ramifications of such births are and what parents can do about it. 

Baby Blues Connection provides support, information and resources to women and families coping with pregnancy and postpartum mood disorders and to the professionals who serve them. BBC exists to support and educate all women and families at risk for postpartum and antepartum depression and anxiety. Parents in need can utilize their 24-hour warm line to connect with trained volunteers, email BBC for support, or meet in person with other local parents through mom-to-mom and dad-to-dad support groups made up of women and men who have been through perinatal depression and anxiety themselves. A current referral list of area specialists is available upon request.

Shades of Blue Project is dedicated to helping minority women who are suffering from postpartum depression and/or anxiety. For women before, during, and after child-birth, Shades of Blue offer advocacy, treatment and support in order to help restore them mentally, physically, and spiritually. *Also on Facebook*

Postpartum Support International provides direct peer support to families, train professionals, and provides a bridge to connect them. The purpose of the organization is to increase awareness among public and professional communities about the emotional changes that women experience during pregnancy and postpartum.

The Truth About Traumatic Birth specializing in support, understanding and tools for healing from birth trauma, birth grief and birth disappointment. Founders Debby Gould, mother, midwife, childbirth educator, & doula and Melissa Bruijn, mother of three, are passionate about offering real and relevant support for understanding and healing from traumatic birth.

My NICU Family is a free mental health resource for NICU parents after discharge. Founder Leanne Dorish is a trauma therapist in British Columbia and she helps NICU families turn trauma into love & light the journey can be as precious as it should be. *Also on Facebook* is a website with a companion app offering guided meditation, mindfulness training, and several white-noise settings to promote balance, sleep, and relaxation. The website offers stories meant to inspire and insights related to mindfulness practice.

Brief Encounters is a nonprofit, nonsectarian group for parents whose babies have died before, during, or after birth. Brief Encounters provides meetings in the greater Portland, Oregon area and local phone support. *Also on Facebook*

Love Surrounds exists to provide hope, encouragement, and support to individuals and families who have experienced pregnancy loss. Their online community for women and their families creates a space to be embraced by love, supported, and educated about pregnancy loss. *Also on Facebook*

The Colette Louise Tisdahl Foundation was created to help families who find themselves in financial need due to

  • Pregnancy complications, including hospital stays and bed rest
  • Premature birth/Child in NICU
  • Miscarriage or other pregnancy loss, stillbirth, or loss of an infant up to one year old

Depending on how a family qualifies, they may be eligible for financial aid for loss of income, childcare costs, transportation costs, breast pump rentals, as well as funeral costs and/or grief counseling. *Also on Facebook*

Through the Heart provides a supportive, welcoming community for anyone experiencing pregnancy loss or trying to support someone who is. They mail Comfort Kits nationwide to grieving parents and provide educational materials to better inform everyone on how to deal with loss. *Also on Facebook*

The Compassionate Friends provides comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family.

To The Grieving Parent is a touching open video letter to parents whose babies didn’t survive. Through its tender insight, it offers many helpful reminders for friends, family, and community members connected to grieving parents.

Pregnancy After Loss Support (PALS) is a community support resource for women experiencing the confusing and conflicting emotions of grief mixed with joy during the journey through pregnancy after loss.

Connected Forever is a Nebraska organization offering resources and information applicable to parents who’ve experienced premature birth or infant loss. *Also on Facebook*

M.E.N.D. (Mothers Enduring Neonatal Death) is a nationwide Christian organization that provides support services at no cost to families who’ve experienced the death of a baby through miscarriage, stillbirth, or infant death. *Also on Facebook*

Saul’s Light Foundation is a New Orleans-based nonprofit that provides support, education, and resources to NICU families and families that have experienced infant loss. *Also on Facebook*

Northwest Mothers Milk Bank is a not-for-profit donor milk bank in Portland, Oregon established in 2008. Their mission is based on the belief that every baby deserves access to human milk. They carry out this mission through the safe collection and distribution of human donor milk, education, advocacy, and research. *Also on Facebook*

La Leche League is an international organization with local chapters dedicated to helping mothers worldwide to breastfeed. They do this through mother-to-mother support, encouragement, information, and education. La Leche League promotes a better understanding of breastfeeding as an important element in the healthy development of the baby and mother. *Also on Facebook*

Kelly Mom provides evidence-based information on breastfeeding and parenting. Managed by a mother of three lovely children, and International Board Certified Lactation Consultant (IBCLC), Kelly Mom has a wide variety of helpful articles and resources. *Also on Facebook*

Patient+Family Care is a Bend, OR company partnering with organizations, hospital NICUs and frontline staff to help create the best possible outcome for every family in the NICU.  They also provide additional support directly to families by providing a parent support network and online classes which blend professional connections, education, support and peer to peer networking.  *Also on Facebook*

NICU Now Podcast was created by Texas-based, Hand to Hold and each episode is designed to help you understand and process your emotions, fears and questions related to your child’s NICU journey.

MyPreemie App was created by experts and parents through Graham’s Foundation, and is designed to inform, comfort, organize, and engage preemie families to promote parent well-being and engagement in the NICU and beyond.

Peekaboo ICU App is a tool made specifically for parents of preemies and is designed to inform, inspire, and engage parents as they navigate their way through the NICU. Peekaboo ICU PREEMIE offers parents an empowering and educational guide to prematurity, helping to reshape the preemie parent experience from day one.

The Colette Louise Tisdahl Foundation was created to help families who find themselves in financial need due to

  • Pregnancy complications, including hospital stays and bed rest
  • Premature birth/Child in NICU
  • Miscarriage or other pregnancy loss, stillbirth, or loss of an infant up to one year old

Depending on how a family qualifies, they may be eligible for financial aid for loss of income, childcare costs, transportation costs, breast pump rentals, as well as funeral costs and/or grief counseling. *Also on Facebook*

Lily’s Hope Foundation supports babies, children, and their families with unexpected and urgent needs due to premature birth. Lily’s Hope Families are in the middle of a medical crisis and referred to us by hospital case workers, hospital staff, and word of mouth. We work with each individual family to answer their specific needs by way of our Packages of Hope. *Also on Facebook*

Saul’s Light Foundation is a New Orleans-based nonprofit that provides support, education, and resources to NICU families and families that have experienced infant loss. *Also on Facebook*

The PPROM Foundation provides resources and support for those experiencing Preterm Premature Rupture of Membranes (PPROM) in pregnancy and beyond. Headquartered in Colorado. *Also on Facebook*

Special Kids Special Care is focused on helping parents access and utilize services that will support their families ability to not just survive, but to thrive. Headquartered in Colorado.

The Morgan Leary Vaughn Fund is a champion in research, public education, and advocacy for families whose infants are at risk or have developed Necrotizing Enterocolitis (NEC). *Also on Facebook*

Sister Friend Up is a small, grassroots community dedicated to supporting parents of medically fragile children (also infants in the NICU). *Also on Facebook*

Every Tiny Thing was founded by NICU nurse Trish Ringley. Based on her extensive experience with families (over 20 years), Trish has created a line of thoughtful, practical products that are loved by NICU parents. Every Tiny Thing carries a NICU journal, milestone cards, posters, and crib art. *Also on Facebook*

Realistic Self-Care Tips for NICU Parents

Self-care is absolutely essential for NICU parents, as their minds and bodies need rest and energy to face the experience of visiting and caring for their child in the hospital. In part because there are often immediate obstacles to traditional bonding, advice typically offered to parents of term babies often falls short on offering relief for these parents, and doesn't acknowledge the realities of a NICU stay.
The following is a short list of tried and true, realistic self-care tips that reflect sensitivity to a NICU parent's unique circumstances.

#1 Ask for help when you need it

You might not be comfortable asking for help, or maybe you worry that your request will be an inconvenience. It won’t be. In times of crisis, people in your immediate community are likely looking for ways to be helpful, and only need some direction from you to be as supportive as possible. Now is the time to make a list of tasks that can be handed off to friends and family. Accept any offers for help with meals, laundry, childcare, or driving. You are not imposing on anyone. People who ask to help genuinely want to help you, and people who don’t ask may not know what you need. You need to be able to focus on your baby, and learning to identify ways people can help you will free you to dedicate your time and energy where it’s needed most.

#2 Nourish your body

It’s important to drink water and eat regular meals or snacks so your body and mind have the fuel they need. Find your nearest cafe or cafeteria on site, and identify any easy places to grab food on the go between the hospital and home. Pack healthy snacks and a reusable water bottle in your daily hospital bag so you always have something to keep you from getting hungry or dehydrated. Take naps when you can. It’s not uncommon for parents to neglect themselves while their child is in the NICU but becoming overtired and overlooking your body’s basic needs will only make it harder to manage the stress and emotions you’re facing. You can’t pour from an empty cup. In order to take care of your baby, you need to take care of yourself first.

#3 Adjust your expectations

Let go of tasks that don’t need your immediate attention, and focus on small, achievable tasks that are essential or helpful. Unless it helps you manage your stress, it’s okay to bow out of social activities, events, or projects you committed to before your child was born. Many NICU parents are caught off-guard by their baby’s arrival, and feel additional pressure to finish the nursery or complete their registry. Be reasonable about your limitations and patient with yourself. Some things will create more emotional strain than completing the task is worth. Start with one task, and only add more once the first has become manageable. Celebrate your accomplishments.

#4 Get some fresh air

Take advantage of your baby’s sleeping hours to step outside the unit, or take a short walk around the hospital grounds. It’s hard to leave your baby for even a moment, we know— but prolonged isolation from the world-at-large can make your re-entry after discharge more challenging. Ask for a map of the hospital and visit any gardens or green spaces. Alternately, there may be a coffee shop or convenience store within walking distance of the hospital that offers you a nearby opportunity to grab a snack. Your body and soul need fresh air and movement to stay balanced, and even quick breaks from the bedside can be incredibly helpful.

#5 Find a space to share your feelings

Talking about what you’re dealing with won’t restore life to “normal,” but it’s hard to heal without facing what you’re feeling. Give yourself permission to process your emotions. Recording the questions you have for your baby’s care team is a good way to start reflecting on your experience, and creates a history of their NICU stay that will likely be a keepsake later. Don’t wait to begin until you’ve gone home. You’re living this now, and beginning to face the emotions connected to your baby’s hospitalization will help you, your baby, and your family heal.  Express your feelings in a journal, make a connection with a NICU peer in the unit to talk one-on-one, or join a web-based support group for real-time insight and feedback.

#6 Wear comfortable clothes

It might seem obvious, but try to remember that your baby doesn’t care if you’re still wearing maternity underwear or sweat pants. No one is judging you here. If you’re the type of person who feels more “normal” after a shower and a shave, don’t stop, but be kind to yourself if you need sleep more than the shower or a meal instead of the makeup. You’ll want to wear clothes that make skin-to-skin (or “kangaroo care”) easier, and a lightweight robe is a solid investment if you don’t have one to bring from home. Warm socks, slippers, and a sweatshirt are all good to have on hand if you’re spending a lot of time at the bedside. It doesn’t matter how you look— all that matters is that you are here with your baby.