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As parents, you are the guardian of your baby’s health. While it might feel overwhelming to learn this new language and figure out what is happening to your tiny baby, you will become an advocate and voice for your child, while in the NICU and as they grow up.
Moms and dads have unique roles in their tiny baby’s lives, and each of you may take on different roles. Talk to other parents about how they do it as a team. If you are a single parent, you may need to access others to help you to work through those roles.
While the work in each NICU is different, you are part of the “team” as your baby’s voice. How will you do that? The following tips will help you think about taking on this role.
The following tips from a NICU nurse have been collected and written by Lori Ives-Baine, RN, MN, Toronto, Canada.
1. Be there as much as you can- your baby knows your voice and it will be the one constant in their new life- filled with love and concern
2. If you are able, pump breast milk for your baby- it is ‘liquid gold’ and is often the best to help them grow and thrive (reference the nutrition page)
3. When your baby is stable enough, touch your baby- learn the best way to do this with the help of nurses and your team (reference to infant massage)
4. Tell your baby stories- these will assist with brain development and can both help your baby fall asleep or to stay awake when they are developing. The story doesn’t matter, it is hearing your voice and processing your words that will help (link to cues from behavior on site).
5. When your baby is stable enough, advocate to provide kangaroo care whenever possible- this is good for baby and for your bonding (Franck, Bernal et al, 2002)
6. Learn all you can about your baby’s condition, day-to-day, and write it down- using a journal will help you remember what has happened, and give you a record of their story
7. Realize that your baby’s story may have many ups and downs as a result of treatment and conditions that result from being premature as well as other reasons- try to weather those storms but rely on the team to help you and your baby through them. Find an outlet for the stressful times whether it is a parent group, friends, family or your baby’s caregiving team. Part of those ups and downs includes pain associated with procedures. Learn how to calm and support your baby through those experiences (Gale, Franck et al, 2004)
1. Find ways to tell your baby’s story
1. Make sure you keep an open line of communication with your team- your baby will benefit from you understanding and being able to share your perceptions of their condition. Ask questions, make sure you understand the answers and let the team know your feelings (Antle and Carlin, 1997; Hurst, 2002).
2. Learn all you can about the physical care your baby needs - then you know the best times to be there as they develop and can get your hands dirty (maybe literally) as soon as possible. This can include diaper changes, baths, mouth care, massage, and any other specific care needs you are able to participate in (Hurst, 2001).
3. Develop a plan and schedule with your team- this can identify when you are able to be there for feeds, meet with the team and take on your role as your baby’s parent and advocate.
Please remember that these plans and ideas may change as your baby develops and their clinical condition varies - be flexible but continue to be the advocate your baby needs. This will help you as your baby grows and gets ready to leave the NICU, whether it is for home or a transition unit (Cuttini, 2001).
The care of your baby is something shared by everyone in the NICU, including the doctors, the nurses, and not least of all, the parents. Mother and nurse, especially, will share a bond between them. The mother's instincts, the nurse's training, and the NICU's technology intertwine to create an environment optimal for the growth of your baby.
Neonatal nurse practitioners are extensively trained. The nurses in the NICU will spend the most hands-on time with your baby, so it is critical that mother and nurse work in concert with each other. NICU nurses have been extensively trained in:
This training ensures that your child is receiving the same high level of knowledgeable care at all times, regardless of whether the person on staff is a respiratory therapist, a clinical practitioner, or a bedside nurse.
As your premature baby matures into a fully grown infant, the torch of responsibility will be passed from nurse to mother, and true parenthood will begin. For now, however, rest assured that the nurses in this NICU facility are your partners in the delicate care of your baby, with only one clear goal in mind: helping your baby grow strong enough to go home.
Deb Discenza, founder of PreemieWorld, talks about when to ask the nurse for help in the NICU. She talks about her experiences and what she has learned from her time in the unit in hopes of helping and empowering parents in the NICU today.
Building trust in the NICU is key to helping that infant thrive, yet the push-pull of the parent-clinician relationship can set the tone for a long struggle. How do you as a professional start trust with a total stranger and one that you just met in what is likely some of the toughest moments of life? Not easy, but doable. Some tips:
As I stared at my daughter in her incubator, frozen in place by fear and worry and huge doubt about my place as a mother, I figured the medical team surrounding her knew her better than I did and knew better how to take care of her. Other than providing breastmilk, I was basically providing my child with the minimum of care. Heck, what did I know?
Apparently I knew more than I realized. My fears were well-founded but my brain knew way more as it turned out. My daughter and I were strongly connected from conception and her frustrated cries sent me into action without realizing it.
Kangaroo Care is the process of initiating skin-to-skin contact between you and your newborn. It has been well established that Kangaroo Care is one of the most important, nurturing gifts both mother and father can give to their baby.
Fathers: With a blanket draped over your baby's back, place him or her on your bare chest.
Mothers: Place the baby between your breasts.
This care has several benefits, including establishing an enduring bond between parent and child through touch and smell. The process can help regulate your baby's heart and breathing rates, increase weight, calm the baby, provide deeper sleep, and regulate his or her temperature. Read a research article about the positive effects of Kangeroo Care.
For some new parents, the thought of handling such a small baby may seem frightening. But starting with gentle contact through the Kangaroo Care method will allow parents to become increasingly comfortable with handling their newborn before it's time to leave the hospital. Then, the real journey begins.
Some NICU facilities place restrictions on when in your baby's growing process - and for how long - it is deemed safe for mother and father to participate in unrestricted Kangaroo Care. Your doctor should let you know if your child has matured to the point where Kangaroo Care is allowed. If you're not sure, ask.
If you feel unsure of yourself and your role in the NICU, ask your NICU nurses and other staff what you can do to help your child. Just being there is your main role. Some parents visit their baby on a regular basis while others prefer to stay for longer periods of time. It is important for you to find the right balance based on other factors in your life including other children, work, or family needs.
Jennifer Degl, author of From Hope to Joy, and Deb Discenza, founder of PreemieWorld, talk about their own personal emotional experiences in the NICU from the moment they met their premature babies to discharge day.
Dr. Taeun Chang, Neonatal and Fetal Neurologist from Children's National, explains what neonatal neurology is. Her goal with this talk is to better orientate you, the parent, so you can better understand your baby's brain injury. What should you be asking the neurologist? Where is your baby's brain injury and how much injury is there? For more on the newborn brain and neurocritical care go the therapy and practice section.
Antle, B. J. and K. Carlin (1997). "Enhancing patient participation in team decision making." Humane Health Care International 13(1): 32-5.
Carter, B. S. (2002). "How can we say to neonatal intensive care unit parents amid crisis, "you are not alone"?" Pediatrics 110(6): 1245.
Board, R. (2004). "Father stress during a child's critical care hospitalization." Journal of Pediatric Health Care 18(5): 244-9.
Banks-Wallace, J. (1999). "Story telling as a tool for providing holistic care to women." MCN, American Journal of Maternal Child Nursing 24(1): 20-4.
Carter, J. D., R. T. Mulder, et al. (2005). "Infants in a neonatal intensive care unit: parental response.[see comment]." Archives of Disease in Childhood Fetal & Neonatal Edition 90(2): F109-13.
Cuttini, M. (2001). "Neonatal intensive care and parental participation in decision making.[comment]." Archives of Disease in Childhood Fetal & Neonatal Edition 84(1): F78.
Franck, L. S., H. Bernal, et al. (2002). "Infant holding policies and practices in neonatal units." Neonatal Network - Journal of Neonatal Nursing 21(2): 13-20.
Gale, G., L. S. Franck, et al. (2004). "Parents' perceptions of their infant's pain experience in the NICU." International Journal of Nursing Studies 41(1): 51-8.
Hurst, I. (2001). "Mothers' strategies to meet their needs in the newborn intensive care nursery." Journal of Perinatal & Neonatal Nursing 15(2): 65-82.
Hurst, I. (2001a). "Vigilant watching over: mothers' actions to safeguard their premature babies in the newborn intensive care nursery." Journal of Perinatal & Neonatal Nursing 15(3): 39-57.
Hurst, I. (2002). "Providing information to parents of extremely premature newborns.[comment]." JAMA 287(1): 41-2; author reply 42-3.
Schwarz, B., C. Fatzinger, et al. (2004). "Rush SpecialKare Keepsakes." MCN, American Journal of Maternal Child Nursing 29(6): 354-61; quiz 362-3.