11 tips from the frontline – NICU parents share

At the recent NICU picnic, parents of graduates took time out of the celebrations to share their advice for fellow parents whose babies are in the Neonatal ICU. Our deepest gratitude to the families who shared their strategies. Every family and every child is unique, but we hope you find some help within their suggestions.

1. Be there as much as you can

We heard this sentiment over and over again. Birgit had three older children at home when her daughter was born 5 weeks early and with a serious medical condition that required an extensive NICU stay. She emphasized the importance of being there as much as possible. “Even when part of life gets put on hold in the big picture of things it’s not noticed.” Birgit shared regarding the difficulty of being away from her three other children while looking after her daughter in the NICU. The older children don’t remember that time away, but for their NICU baby it was a lifetime. “Call at night. We called every night at 11pm. The TMC for Children NICU nurses told us we could call the NICU anytime to check in, and we did.”

Along the same lines, while you may not be able to hold your child, touch your baby as much as possible, Teresa, mom of a now 3.5year old Sophie, stated. Stephanie and Jesse, parents to Phoebe, Samuel, Madeline, and Nathan, encouraged presence, but also urged parents to take time to sleep and to recuperate so that you can truly be there for your children.

2. Be an educated, informed advocate for your child

Again, this point was stressed by several parents. If your child has a specific diagnosis, find out about it. Identify reputable sources for information and be familiar with the terms and suggested therapies that your child might be undergoing. Ready yourself to ask questions of your child’s doctors and nurses. It is important to ask questions and be educated about your child’s medical situation, but know that the doctors and nurses are trained specialists, and have treated many babies in similar situations. You are part of your child’s healthcare team, so don’t be afraid or ashamed to ask questions in a respectful manner.

3. Have a go-to-person

Identify a friend or family member who can be a point person for others to connect with rather than contacting you. Family and friends will want to know what is going on, but you may well not have the energy to spend on repeatedly explaining what is going on, or listening to home-made diagnosis of any results.  Someone who can understand the medical terminology, explain it, but also control the flow of information and not divulge more than you want to be shared, can be a huge asset. Stephanie expanded on this idea suggesting that sometimes it was useful for the parents to focus on maybe just a few of the measures dependent on the child’s diagnosis and not get overwhelmed with all the whirs and whoops and bells of the equipment.

4. Don’t be upset by small setbacks, but celebrate the milestones.

They’re not the same milestones you expected to be celebrating, but celebrate the first time  your child is in an open crib rather than an isolette, or when your child breathes unassisted. Angel stressed this point, adding that as she created her daughter’s baby book she noticed that the events that were particularly important in their journey were not part of the typical baby book, sodon’t be bound by the norm.

5. Take photographs of your child

They may not be the images you wanted to take, and there maybe times when you don’t want to look at them, but several parents mentioned the importance of having documented this time in their child’s life. Stephanie particularly encouraged photographs,especially when a child might not survive. Of her triplets, Nathan did not survive and the photographs taken by the photographer associated with Now I Lay Me Down to Sleep are particularly precious. 

6. Indulge in a little frivolity

As friends cradled their newborns, fussed over their clothes and their nursery decor, Stephanie was tending to her children amid wires and bleeping lights in a sterile environment. It is not a reality any of us imagine for those first tender days (or weeks, or months) with our newborns, and a number of moms noted that the stark difference impacts the sense of parenthood,  leading to a questioning of their role, ‘Am I really a mom?’ Stephanie suggests bringing a little of that frivolity into your child’s hospital space if appropriate. Whether it is decorating around their isolette, or making personalized clothes. She noted that many preemie clothes didn’t have gaps appropriate for a child who has leads attached to their body. Cutting open and hemming the side of one piece from just below the arm pit to just above the base hemline allowed her to dress her children while providing easy access for the medical professionals.

This might be a little bit of frivolity, but it is hardly frivolous. Decoration of the area around isolettes, creation of attractive clothing helps to busy the mind, to focus on practical aspects of parenting- shelter and clothing that are within your control.

This must be done within what is safe and appropriate for the child and other families and patients. Check with your nurses for guidance. Which brings us to number 7.

7. Get to know the nurses

This dedicated staff represent a highly trained and specialized group of medical professionals. One parent, a physician at another location, noted that he was awed by the NICU staff. “They are the BEST.” The nurses are one of the best resources you have available to you.

8. Get to know your NICU neighbors

At the picnic, old NICU neighbors sat next to each other watching their children, once seemingly fragile infants, giggle, roll, toddle and chatter. As one parent shared, “It helps to know you’re not alone. There are others going through this roller coaster ride.”

9. Ask for help

It’s hard to ask for help, but your family and friends will want to help. They may not know how to help, most of us don’t. Perhaps direct them to this earlier TMC for Children post on how families and friends can help families who find themselves in the NICU.
10. Draw upon your resources

For Kelly and Jason, whose son and daughter spent considerable time in the NICU, the resources were friends, family and fellow church members. You may find that the community offers resources that can help during this time. The unit has a full time social worker that may be able to help.

11.  Be happy for those who graduate

For those families who experience long stays in the NICU, each graduation of a fellow NICU patient, other than their own, might seem a little bittersweet -excited for the families of the graduates, but wishing it was their time. Parents Kelly and Jason encourage those who are still waiting to be discharged saying, “It gets better…you will get out.” Teresa, mom to Sophie, now 3.5years, encouraged parents to not lose hope.

We also have information from the NICU addressing frequently asked questions here