Parents’ Involvement and Role in the NICU

By Lori Ives-Baine, RN, MN, Toronto, Canada

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 dad 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.

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)
8. Find ways to tell your baby’s story
   1. The journal is only one option but is a good one to help you remember (Banks-Wallace, 1999)
   2. Find out if you can take photos in the NICU- some babies may be sensitive to flash photography, so you may not be able to use the flash but see what the rules are in your NICU
   3. Try scrapbooking if it might be helpful (Schwarz, Fatzinger et al, 2004), so that you can share your baby with others before they can visit.
   4. Find out if you can make a footprint of your baby early in their NICU stay, as they will grow and develop and you may forget how tiny they started off- this can go in their scrapbook or other memento place. If this is enjoyable, create more footprints at their big milestones- 1 month, 2 months, due date, etc.. (Schwarz, Fatzinger et al, 2004)
   5. Find out if you can have the old identification bands when they no longer fit- all of these items can help parents to remember size and development (Schwarz, Fatzinger et al, 2004)
   6. f. When your baby is stable enough, see if there are tiny clothes that might help him or her to get used to wearing them- can they be made or purchased? This is something you as a parent can do for your child, including washing them when dirty. When they get too small, into the memento box they go!
9. 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).
   1. If the NICU has daily bedside rounds that you can attend, try to be there for them- this is a great time to get the ‘big picture view’ of your baby.
      1. If you feel nervous about speaking out in rounds, maybe you can work with your social worker or nurse to gain that confidence as an advocate. They can assist you to be all that you can be (Carter, 2002).
   2. If you can’t be there, leave notes for the team to either ask your questions or express your thoughts.
   3. Make regular times to meet with the primary responsible doctor for your baby, and use that time wisely.
   4. Your nurse and nurse practitioner will be a regular part of your care team, so make sure you learn with them (Hurst, 2001a).
10. 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).
11. 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).

While all of this is going on, moms are going through body changes, hormonal changes and role changes- dads definitely have the role changes, and are adapting to this new life (Board, 2004; Carter, Mulder et al, 2005; ) including not sleeping well and less personal self care. If you become overwhelmed, get help for yourself, with your own primary practitioner and/or your team, so you can be ready to take complete responsibility for this new person in your life. Remember that it is okay to take care of yourself so that you can take care of your baby.

One way you can take care of yourself is to access your community resources, including family and friends, faith community and neighbors to help you to be with your baby when you can.

Ask people to assist with:

• food preparation
• taking other children to school and providing after-school care
• laundry and housekeeping
• letting people know you have a new baby in hospital
• transportation to and from the hospital
• assisting with any short term costs that may add up quickly
• any other tasks that another person can do for you

If you are able to give up these tasks, you can focus on what you need to do, whether it is producing breast milk for your baby, kangarooing them or, being there for meetings with the team.

References

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.

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