Resources

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“You are braver than you believe, stronger than you think, and loved more than you’ll ever know.”
—A.A. Milne

NICU General Information

NICU Parent Information

Free Apps for your phone:

  • Peekaboo ICU Preemie
  • My NICU Baby by March of Dimes
  • My Preemie by the Grahams Foundation
  • CaringBridge www.caringbridge.org (use this tool to update family and friends by establishing your own site in an easy, accessible, private way). Post updates for your friends and family members.
  • Today’s Parent, My Family app, a storybook-making tool to capture your baby’s moments.
  • Hatch Baby tracks feedings, diaper changes, and sleep patterns.

Podcasts:

Phone Numbers:

  • National Suicide Prevention Lifeline (800-273-8255)
  • NJ Department of Health, Family Health Line (800-328-3838) for expectant and new moms
  • NJ Department of Health, Early Intervention System Referral Line (888-653-4463)
  • Mom2Mom (877-914-6662) support line for moms of special needs children
  • SPAN Parent Advocacy Network (800-654-SPAN) literature, books and support for parents with special healthcare needs
  • NJ Department of Human Services, NJ Children’s Relief Fund (800-335-FUND) when medical bills are too big to handle, family must reside in New Jersey a minimum of three months
  • Helpline, dial 211 to inquire about all kinds of services available. https://www.211.org/

Parent Books:

  • For Those Who Hold the Littlest Hands: Information and Support for Parents of Babies in the NICU by Kristi A. Dyer
  • Breast Feeding Your Premature Baby by Gwen Gotsch
  • Preemies: The Essential Guide for Parents of Premature Babies Second Edition by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron, M.D.
  • Kangaroo Care: The Best You Can Do To Help Your Preterm Infant by Susan M. Ludington-Hoe, Ph.D. with Susan K. Golant
  • The Preemie Parents’ Companion: The Essential Guide to Caring for Your Premature Baby in the Hospital, at Home, and Through the first Years by Susan L. Madden, M.S.; forward by William Sears, M.D.
  • The Premature Baby Book: Everything You Need to Know about Your Premature Baby from Birth to Age One by James Sears, Martha Sears, Robert Sears and William Sears
  • Newborn Intensive Care: What Every Parent Needs to Know edited by American Academy of Pediatrics Third Edition, edited by Jeanette Zaichkin

Websites:

Books for Moms:

  • Loving Myself Again: Self-Care A-Z After a NICU Stay by Leanne Rose Dorish

Bedrest Resources for Moms:

Resources for Dads:

Adult Bereavement - Prenatal and Perinatal Loss

“I never knew emptiness could weigh so much, she said. I can barely hold it.”

– Kai Skye

For Dads:

Adult Bereavement Books

  • Good Grief: A Companion For Every Loss by Granger E. Westberg
  • Coping with Grief, 4th ed., by Dianne and Mal McKissock
  • Stuck for Words:  What to Say to Someone Who is Grieving by Doris Zagdanski
  • Grieving The Child I Never Knew: A Devotional for Comfort in the Loss of Your Unborn or Newly Born Child by Kathe Wunnenberg
  • Life After Stillbirth: Your New 'Normal' by Sarah Smith
  • To Mourn A Child: Jewish Responses to Neonatal Death and Childhood Death by Jeffrey Saks and Joel Wolowelsky

For Dads:

  • Men Have Miscarriages Too by Ann Zamudio
  • Noah’s Rainbow, A Father’s Emotional Journey from The Death of His Son to the Birth of His Daughter, 2nd edition, by David Fleming
  • Grieving Dads: To the Brink and Back by Kelly Farley and David DiCola
  • Grieving Dads https://grievingdads.com/

Children’s Bereavement Books

  • When Dinosaurs Die by L.K. and M. Brown (ages 3-6)
  • The Next Place by W. Hanson (ages 3-6)
  • Gentle Willow by J. Mills (ages 3-6)
  • The Invisible String by Patrice Karst (ages 4-8)
  • Invisible Story Workbook by Patrice Karst (ages 4-8)
  • Bluebird by Bob Staake
  • Michael Rosen’s Sad Book by Michael Rosen
  • We Were Gonna Have a Baby But We Had an Angel Instead by Pat Schwiebert
  • Thumpy’s Story by Nancy Dodge
  • Remembering Our Baby by Patty Keough
  • Always My Twin by Valerie Samuels and Najah Clemmons
  • Molly’s Rosebush by Janice Cohn
  • Where's Jess? by Marvin Johnson
  • Someone Came Before You by Pat Schwiebert

NICU Siblings and Preemies

Children’s Preemie-Related Books:

  • Rosie and Tortoise by Margaret Wild (ages 4-8)
  • The Moment You Were Born: A Story for You and Your Premature Baby by Sandra M. Lane, M.A. and Brenda Miles, Ph.D.
  • Watching Bradley Grow by Elizabeth Murphy-Melas (ages 4-8)
  • Evan Early by Rebecca Hogue Wojahn (ages 4-8)
  • Prince Preemie by Jewel Kats (ages 4-8)
  • My Baby Sister is a Preemie by Diana Amadeo (ages 4-8)
  • That's When I'm Happy by Beth Shoshan (ages 2-6)
  • Katie’s Premature Brother by Elizabeth Hawkins-Walsh (ages 9-12)
  • No Bigger Than My Teddy Bear by Valerie Pankow (ages 3-7)
  • The Kissing Hand by Audrey Penn (about separation during NICU visits (ages 3-7)
  • Famous Preemies by A.P. Male
  • Am I Still a Sister? By Alicia M. Sims
  • Something Happened by Cathy Blanford
  • Go Preemies! Inspirational Stories of the World's Most Famous Preemies by A. P. Male https://www.gopreemies.com
  • I was a Preemie Just Like You https://www.metwobooks.com/i-was-a-preemie-just-like-you.html
  • Our New Baby Needs Special Help by Gail Klayman (ages 4-8)
  • Come Home Soon Baby Brother (Coloring Book) by Debi Iarussi (ages 2-6)
  • Supreemie: Kylo’s Journey Through the NICU by Nico Shanel
  • My Brother Needs an Operation by Anna Marie Jaworski (ages 4-8)
  • What About Me?: When Brothers and Sisters Get Sick by Allan Peterkin (ages 4-8)
  • My Brother is a Premie: A Children’s Guide to the NICU Experience by Abraham R. Chuzzlewit (ages 3-9)
  • Waiting for Baby Joe by Pat Lowery Collins (ages 4-8)

Books for Children About Maternal Bedrest:

  • Stuck In: The Pregnancy Bed Rest Picture Book for Kids and Moms by Jennifer Degl
  • Mommy Has to Stay in Bed by Annette Rivlin-Gutman (ages 4-8)
  • And Mommy’s On Her Side by Heidi Travis (ages 4-8)
  • Bedrest Mommy by Jennifer Christensen (ages 3-8)

Grandparents and Other Loved Ones
(Both NICU and Bereavement Resources)

Books:

  • Forgotten Tears: A Grandmother’s Journey Through Grief by Nina Bennett
  • A Grandparent’s Sorrow by Pat Schwiebert

Videos:

These NICU survivor videos may contain content that is difficult to review.  Please protect yourself and view with caution.

These are NICU bereavement videos, view with caution

Related Research and Professional Articles

For Professionals

Special thanks to NICU Healing for this reference list of scholarly articles and books http://www.nicuhealing.com/

Attachment/Bonding:

  • Coppola, G. & Cassibba, R. (2010). Mothers' social behaviours in the NICU during newborns' hospitalization: an observational approach. Journal of Reproductive and Infant Psychology, 28(2), 200-211.
  • Gonzalez-Serrano, F., Lasa, A., Hernanz, M., Tapia, X., Torres, M., Castro, C., & Ibanez, B. (2012). Maternal attachment representations and the development of very low birth weight premature infants at two years of age. Infant Mental Health Journal, 33(5), 477-488.
  • Hoffenkamp, H., Tooten, A., Hall, R., Croon, M., Braeken, J., Winkel, F.W., Vingerhoets, A. & van Bakel, H. (2012). The Impact of Premature Childbirth on Parental Bonding. Evolutionary Psychology, 10(3), 542-561.
  • Nicolaou, M., Rosewell, R., Marlow, N., & Glazebrook, C. (2009). Mothers' experiences of interacting with their premature infants. Journal of Reproductive and Infant Psychology, 27(2), 182-194.
  • Udry-Jorgensen, L., Pierrehumbert, B., Borghini, A., Habersaat, S., Forcada-Guex, M., Ansermet, F., Muller-Nix, C. (2011). Quality of attachment, perinatal risk, and mother-infant interaction in a high-risk premature sample. Infant Mental Health Journal 32(3), 305-318.

Kangaroo Care:

  • Feldman, R., Eidelman, A., Sirota, L., & Weller, A. (2002). Comparison of skin-to-skin (kangaroo) and traditional care: parenting outcomes and preterm infant development. Pediatrics, 110(1), 16-26.
  • Reynolds, L.C, Duncan, M.M., Smith, G.C., Mathur, A., Neil, J., Inder, T. & Pineda, R.G. (2013). Parental presence and holding in the neonatal intensive care unit and associations with early neurobehavior. Journal of Perinatology, 33(8), 636-641.
  • Tallandini, M.A., & Scalembra, C. (2006). Kangaroo mother care and mother-premature infant dyadic interaction. Infant Mental Health Journal, 27(3), 251-275.

Post-Partum Depression and Anxiety:

  • Gambina, I., Solderra, G., Benevento, B., Trivellato, P., Visentin, S., Cavallin, F., Trevisanuto, D. & Zanardo, V. (2011). Postpartum psychosocial distress and late preterm delivery. Journal of Reproductive and Infant Psychology, 29(5), 472-479.
  • Garel, M., Dardennes, M., & Blondel, B. (2006). Mothers' psychological distress one year after very preterm childbirth. Results of the epipage qualitative study. Child: care, health and development, 33(2). 137-143.
  • Goutadier, N., Lopez, A., Sejourne, N. Denis, A., & Chabrol, H. (2011). Premature birth: subjective and psychological experiences in the first weeks following childbirth, a mixed-methods study. Journal of Reproductive and Infant Psychology, 29(4), 364-373.
  • Jenewein, J., Moergeli, H., Fauchere, J.-C., Bucher, H.U., Kraemer, B., Wittmann, L., Schnyder, U., & Buchi, S. (2008). Parents' mental health after the birth of an extremely preterm child: A comparison between bereaved and non-bereaved parents, Journal of Psychosomatic Obstetrics and Gynecology, 29(1), 53-60.
  • Letourneau, N.L., Dennis, C.L., Benzies, K., Duffet-Leger, L., Stewart, M., Tryphonopoulos, P.D., Este, D., & Watson, W. (2012). Postpartum depression is a family affair: addressing the impact on mothers, fathers, and children. Issues in Mental Health Nursing, 33, 445-457.
  • Madu, S., Roos, J. (2006). Depression among mothers with preterm infants and their stress-coping strategies. Social Behavior and Personality, 34(7), 877-890.
  • Nagata, M., Nagai, Y., Sobajima, H., Ando, T., & Honjo, S. (2004). Depression in the early postpartum period and attachment to children in mothers of NICU infants. Infant and Child Development, 13, 93-100.
  • O'Brien, M., Asay, J. H., & McCluskey-Fawcett, K. (1999). Family functioning and maternal depression following premature birth. Journal of Reproductive and Infant Psychology, 17(2), 175-188.
  • Preyde, M. & Dingwall, T. (2009). Stress and coping in parents of medically at-risk infants: the need for social work support. Canadian Social Work, 25-40.
  • Pritchard, M., Colditz, P., Cartwright, D., Gray, P., Tudehope, D. & Beller, E. (2012). Six-week postnatal depression predicts parenting stress profiles in mothers of preterm children. Journal of Reproductive and Infant Psychology, 30(3), 303-311.

Trauma and Stress:

  • Bradley, R. & Slade, P. (2011). A review of mental health problems in fathers following the birth of a child, Journal of Reproductive and Infant Psychology, 29(1), 19-42.
  • Bryant, R.A., Friedman, M., Spiegel, D., Ursano, R. & Strain, J. (2010). A review of acute stress disorder in DSM-5, Depression and Anxiety, 0, 1-16.
  • Busse, M., Stromgren, K., Thorngate, L., & Thomas, K. (2013). Parents' responses to stress in the neonatal intensive care unit, Critical Care Nurse 33, 52-59.
  • Dudek-Shriber, L. (2004). Parent stress in the neonatal intensive care unit and the influence of parent and infant characteristics. American Journal of Occupational Therapy, 58, 509-520.
  • Howe, T.H., Sheu, C.F., Wang, T.N., & Hsu, Y.W. (2014). Parenting stress in families with very low birth weight preterm infants in early infancy. Research in Developmental Disabilities, http://dx.doi.org/10.1016/j.ridd.2014.02.015.
  • Jotzo, M. & Poets, C. (2005). Helping parents cope with the trauma of premature birth: an evaluation of a trauma-preventive psychological intervention. Pediatrics, 115(4), 915-919.
  • Kendall-Tackett, K. (2009). Traumatic stress symptoms in parents of premature infants. Trauma Psychology Newsletter, 16-18.
  • Nicholls, K. & Ayers, S. (2007). Childbirth-related post-traumatic stress disorder in couples: A qualitative study, British Journal of Health Psychology, 12, 491-509.
  • Pierrehumbert, B., Nicole, A., Muller-Nix, C., Forcada-Guex, M. & Ansermat, F. (2003). Parental post-traumatic reactions after premature birth: implications for sleeping and eating problems in the infant. Arch Dis Child Fetal Neonatal, 88, 400-404.

Treatment Reviews:

  • Brecht, C. , Shaw, R., St. John, N., & McCue Horwitz, S. (2012). Effectiveness of therapeutic and behavioral interventions for parents of low-birth-weight premature infants: A review. Infant Mental Health Journal, 33(6), 651-665.

Post-traumatic Growth:

  • Barr, P. (2011). Post-traumatic growth in parents of infants hospitalized in a neonatal intensive care unit. Journal of Loss and Trauma, 16, 117-134.
  • Calhoun, L. & Tedeschi, R. (2004). The foundations of post-traumatic growth: New considerations, Psychological Inquiry, 15(1), 93-102.
  • Joseph, S., Murphy, D. & Regel, S. (2012). An affective-cognitive processing model of post-traumatic growth. Clinical Psychology and Psychotherapy, 19, 316-325.
  • Levine, L.J., Schmidt, S., Kang, H. & Tinti, Cl (2012). Remembering the silver lining: Reappraisal and positive bias in memory for emotion, Cognition and Emotion, 26(5), 871-884.
  • Linley, P. & Joseph, S. (2011). Meaning in life and post-traumatic growth. Journal of Loss and Trauma: International Perspectives on Stress & Coping, 16(2), 150-159.
  • Schuttler, D. & Boals, A. (2011). The path to post-traumatic growth versus posttraumatic stress disorder: Contributions of event centrality and coping. Journal of Loss and Trauma, 16, 180-194.
  • Siegel, D. (2001). Toward an interpersonal neurobiology of the developing mind: Attachment relationships, "mindsight," and neural integration, Infant Mental Health Journal, 22(2), 67-94.
  • Spielman V. & Taubman-Ben Ari, O. (2009). Parental self-efficacy and stress-related growth in the transition to parenthood: A comparison between parents of pre and full-term babies, Health & Social Work, 34(3), 201-212.
  • Taubman-Ben Ari, O., Findler, L., & Kuint, J. (2010). Personal growth in the wake of stress: the case of mothers of preterm twins, The Journal of Psychology, 144(2), 185-204.
  • Tedeschi, R. & Calhoun, L. (2004). Post-traumatic growth: Conceptual foundations and empirical evidence, Psychological Inquiry, 15(1), 1-18.

The following organizations provide workshops and webinars for a fee and for free, with and without CEUs, in person and online.

  • Partnership for Maternal and Child Health of Northern New Jersey https://partnershipmch.org/, Providing Compassionate Support: Grief and Perinatal Loss (webinar) https://www.youtube.com/watch?v=FHn4z0F6pd4
  • The Seleni Institute https://www.seleni.org
  • Rutgers University. Perinatal Mental Health Certification Program was created in 2018 (PMH-C). It includes 14 hours of perinatal mood and anxiety courses, six hours of live or interactive online training, and successful completion of an exam. CEUs are required to keep certification active.
  • Postpartum Support International, Portland, Oregon www.postpartum.net

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