Family Centered Care
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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.
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
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)
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)
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).
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)
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
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)
Find ways to tell your baby’s story
The journal is only one option but is a good one to help you remember (Banks-Wallace, 1999)
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
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.
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)
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)
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!
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.
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).
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:
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.
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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.
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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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