Introduction
Do you know someone in your circle—a friend, a family member, or a colleague—navigating the challenges of having a newborn in the NICU? It’s a journey fraught with worry, uncertainty, and countless hurdles. As outsiders looking in, it’s natural to feel a sense of helplessness, unsure of how to offer meaningful support during such a trying time.
It’s important not to be taken aback if a NICU parent doesn’t respond or can’t offer specific ways you can assist. Here’s the thing, they are in survival mode. Understandably, they’re solely focused on their baby and getting through each day. Keep in mind that their newborn is in a daunting environment, and the necessity for intensive care likely caught them off guard, leaving them unprepared.
Having walked the path of a NICU parent myself, I fully understand the overwhelming nature of this experience. So sather than directly asking NICU parents what they might need, I’ll guide you through a plethora of incredible ideas designed to provide them with meaningful support. We’ll delve into both commonly suggested approaches and additional insights gleaned from my personal journey, as well as valuable suggestions shared by other NICU parents within our social media community.
So, whether you’re here seeking guidance on how to support a loved one in the NICU or simply looking to learn more about this challenging journey, you’re in the right place. Get ready to become empowered with knowledge, empathy, and actionable strategies to make a positive difference in the lives of NICU families.
Is your baby currently in the NICU? Was your baby born prematurely? Or is your term baby in the NICU for high jaundice levels, low blood sugars, or because they have some Respiratory Distress and need oxygen or additional support?
Are you wondering what in the heck is a small baby unit or kangaroo care? Why do NICUs use donor breast milk and what on earth does RDS, BPD, IVH, NEC, ETT, CPAP, HFNC, UVC, UAC, po, ng, NEC, ABG, CBG, CBC, and CMP stand for? Are you asking yourself how will we ever get through this, what questions should I even ask, and when will my baby come home?
If you are a NICU parent who is scared, nervous, unsure, and full of questions, then hit the subscribe button so you do not miss another show!
Welcome to the “Empowering NICU Parents Podcast” where we will answer ALL of these questions and SO MUCH more! Your host, Nicole Nyberg is a Neonatal Nurse Practitioner with years of NICU experience – but she also brings her unique perspective to this podcast as a mother of a 23-weeker.
Along with sharing answers to the NICU medical questions you have, Nicole addresses and supports you through the incredibly difficult emotional struggles that only a NICU parent can understand.
She provides you with knowledge plus tangible tips to guide, educate, empower, and support you through your baby’s NICU journey and once they are home. Tune in to hear from someone who knows exactly what you’re going through, another NICU Mama.
Check out all of our show notes and additional information at empoweringnicuparents.com
To start 2024 out, our first episode focuses on marijuana use, its impact on pregnancy, the growing fetus and the child’s future development, as well as the implications of its use during breastfeeding.
Who would have thought that in 2024, we would be living in a time where marijuana use is so prominent and that it would be legal in 24 states as of January of 2024?!?
But, nonetheless, here we are! Because marijuana has been legalized in so many states, there are now false evolving perceptions on its general safety as well as its implications on the developing fetus and infant who are exposed to it either in utero or through breastmilk. In general, the perception of harm from marijuana is decreasing while the potency of marijuana is scarily increasing. Marijuana is the most widely used illegal drug during pregnancy in the United States. And, its use in gaining speed amongst all adult age groups, in both sexes, and in pregnant women.
For our 56th episode, I reviewed the most up-to-date literature and will share the findings from several studies that reveal both short and long-term negative effects on the pregnant mother and developing fetus if used during pregnancy, and its future implications on the growing infant, child, and their transition into the teenage years, and as an adult after prenatal exposure. I will also point out the general concentration of marijuana in breast milk if used by a nursing mother, as well as how long it stays in the breast milk, and how it may impact the exposed infant.
This episode is packed full of useful information and will be ideal for any healthcare worker or for family members and friends who care about a pregnant woman or nursing mother who is currently using marijuana and want to ensure that she is fully educated on the implications of its use on her growing fetus or infant. And last, but actually, the most important, I encourage ALL women who are either considering becoming pregnant or who are currently pregnant and use marijuana on a regular basis, to listen.
Although marijuana use is so prevelant, it is so crucial that we fully understand its potential impact on the fetus and the child’s future development if used during pregnancy and while breastfeeding.
You will not want to miss this one!
Dr. Brown’s Medical: https://www.drbrownsmedical.com
Our NICU Roadmap: A Comprehensive NICU Journal: https://empoweringnicuparents.com/nicujournal/
NICU Mama Hats: https://empoweringnicuparents.com/hats/
NICU Milestone Cards: https://empoweringnicuparents.com/nicuproducts/
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Episode 56 Show Notes: https://empoweringnicuparents.com/episode56
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Episode Sponsors:
Dr. Brown’s Medical
Dr. Brown’s Medical strives to deliver valuable infant feeding products and programs to support parents and professionals in providing positive feeding experiences for the infants in their care. Traditional feeding products and practices in the NICU are inconsistent and can result in poor feeding outcomes.
Dr. Brown’s® unique Dr. Brown’s® Zero-Resistance™; nipples with reliable flow rates; and The Infant-Driven Feeding™ are evidence-based, standard-of-care practices that improve infant feeding outcomes.
The team at Dr. Brown’s Medical is available to provide support for you and your team to help achieve best practice results. They provide 4 free webinars every year on various infant feeding topics and offer continuing education hours for Nurses, Occupational Therapists, and Speech Language Pathologist.
To learn more or speak with the Dr. Brown’s Medical team, click HERE.
Our NICU Roadmap
Our NICU Roadmap is the only NICU journal parents will need. Our journal is a great resource for NICU parents with educational content, answers to many of their questions, a full glossary plus specific areas to document their baby’s progress each day while in the NICU. Our NICU Roadmap equips parents with questions to ask their baby’s care team each day as well as a designated place to keep track of their baby’s weight, lab values, respiratory settings, feedings, and the plan of care each day. Most importantly, Our NICU Roadmap guides parents and empowers them so they can confidently become and remain an active member of their baby’s care team.
Our NICU Roadmap is available for purchase on Amazon or contact us at empoweringnicuparents@yahoo.com to order in bulk at a discounted price for your hospital or organization.
Click HERE for additional information and images of Our NICU Roadmap.
Newborn Holiday Cards
Celebrate every one of your baby’s first holidays with these beautiful, unique holiday cards. There is a card for every major and minor holiday so you will not miss capturing the perfect photo opportunity during your baby’s first year!
Each uniquely designed card is 5 x 5 and will make the perfect photo prop as you celebrate all of your baby’s first holidays! The cards are downloadable, so you can get them right away!
NICU Milestone Cards
Capture every incredible moment your baby achieves while in the NICU with these colorful milestone cards.
Each set includes 26 bright, colorful, and unique downloadable milestone cards with a dedicated space for you to write the date your infant achieved each milestone.
Grab a photo with your baby and each milestone card. The photographs will be a great keepsake and with the date in the photo, you will never forget when your baby achieved each milestone.
Supporting NICU Families: Gift Ideas and Acts of Kindness
We hope you find this information insightful and valuable. Whether you’re here because you have a friend, family member, or loved one with a baby in the NICU, or perhaps you’re a NICU parent seeking ideas to share, you’re in the right place. Feel free to share this episode with your circle, especially those who are wondering, “How can we help?”
Although it’s challenging to provide an exact figure, according to Pineda et al. (2020), approximately 9–13% of infants face the need for admission to the neonatal intensive care unit (NICU) due to complex medical needs. Additionally, research by Kim et al. (2021) reveals a significant increase of 37% in NICU admission rates from 2008 to 2018, with this trend observed across all racial and ethnic groups. The statistics emphasize the reality that many babies require intensive care, which is overwhelming for parents and places them in unforeseen circumstances.
Moreover, it’s important to note that some mothers may have encountered pregnancy complications before or during delivery, necessitating additional care and monitoring. As a result, these mothers may remain hospitalized and are unable to go see their babies, adding further stress to an already challenging situation.
Additionally, some newborns may require specialized care that exceeds the capabilities of the birthing hospital which may place the infant in a NICU sometimes 50 to 100 miles away. This separation not only makes it difficult for parents to visit due to distance, but it also adds to the financial strain of travel and reduces the time they can spend at home with their other children. With the additional travel, it also reduces the amount of time parents have to manage household responsibilities such as taking their children to school and activities, preparing meals, and staying on top of laundry.
Moreover, the necessity for one or both parents to return to work shortly after delivery further complicates their ability to be with their infant in the NICU. For mothers recovering from cesarean sections, the inability to drive for the first two weeks post-delivery poses an additional hurdle for them to get to the NICU once they’re discharged. These logistical challenges significantly impact parental involvement in their newborn’s care during this critical time.
We faced many of the aforementioned challenges. Our son had to be transferred 54 miles away from the hospital where I gave birth. Due to my cesarean section, I was unable to be discharged quickly to be with him. Also, our home was over 50 miles from the NICU, and shortly after William’s birth, my husband had to return to work. Despite the odds stacked against us, we were fortunate to have amazing family and friends who stepped in to support us, and we will also be incredibly grateful for their help!
As I’ve mentioned before, the most impactful way to support a family is to follow your instincts and do whatever feels right to you. Avoid asking the family how you can help and definitely do not wait for them to request assistance. During a health crisis, parents often lack the energy to articulate their needs and may feel they can handle everything alone. They’re primarily focused on their sick baby. So, trust your intuition and offer your support without waiting for guidance from them.
Now, let’s explore some practical and creative ways you can support families with a child in the NICU.
Emotional Support
Offering emotional support to the entire family is incredibly valuable during this challenging time. Simply being there to listen without judgment is paramount. Many mothers may have experienced a traumatic delivery, and talking about it can be therapeutic. Additionally, having a baby in the NICU is also distressing. It’s crucial to attentively listen and validate their experiences without offering personal insights, advice, or comparing their situation to your own. Refrain from saying, “I know how you feel,” because every baby’s clinical condition and NICU journey are unique, even if you’ve had a baby in the NICU yourself.
If a parent seems guarded, it’s important to respect their boundaries and ask if they’re open to talking. Each parent processes the experience differently, so meeting them where they are is essential.
Let’s not forget about the fathers, who often feel overlooked. They may carry the protective role but are also likely hurting. Witnessing the events leading to delivery or seeing their baby in the NICU can be traumatic for them too. Moreover, they may have to juggle responsibilities outside the hospital, adding to their stress. Ensuring they feel supported is equally important.
Reach Out
Even if you’re unsure of what to say to a NICU parent, reaching out to let them know you’re thinking of them is crucial. While you may not always receive a response, your support will be deeply appreciated. Don’t hesitate to offer congratulations! Despite the unexpected nature of their journey, celebrating the arrival of their child is significant.
While we could dedicate an entire episode to what not to say to NICU parents, it is essential that you still offer support and let the family know that they’re in your thoughts. Consider either offering your time or selecting a thoughtful gift to send or give them. Here are some ideas to consider.
Help with Meals
As I mentioned earlier, NICU parents juggle between being at the NICU and home while trying to manage daily life. Any assistance with meal preparation is immensely beneficial. This could involve preparing meals for when they return home from the NICU, cooking for their other children at home, or bringing meals to the hospital for them to reheat while they’re in the NICU. Organizing a meal train with their other friends, family, neighbors, or their church community can also be incredibly helpful. With a meal train, contributors can decide whether to provide prepared meals, pizza delivery, gift cards, or deliveries to the hospital. It’s a significant relief for parents not to worry about food, especially at the end of a long day. Unfortunately, some NICUs still do not offer meal trays or cafeteria vouchers for parents, so buying food daily can become costly for the family.
Gift certificates to local restaurants near the NICU are invaluable in reducing stress and food expenses for the family. Additionally, a gift basket filled with healthy snacks is a thoughtful idea. Spending hours in the NICU can cause parents to forget to eat, which isn’t ideal, particularly for a nursing mother. Therefore, providing nutritious grab-and-go snacks like granola bars, trail mix, fresh fruit, and dried fruit can help sustain parents throughout the day.
Help with Transportation
As I mentioned, many NICU mothers aren’t able to drive for the first couple of weeks. If you’re nearby, offering to give them a ride to the NICU or home can be a huge help. You might also want to consider a gas gift card, as driving to and from the hospital can become quite expensive, especially with our gas prices lately. If the parents rely on public transportation, assisting with purchasing a prepaid ticket or offering cash can be beneficial. I recently discovered that Uber offers gift cards for transportation or Uber Eats, which could be a great option too!
Assist with Everyday Tasks
As mentioned earlier, NICU parents often lack the time and energy to keep up with household chores, making assistance with daily tasks incredibly valuable. Depending on your love language, this assistance can take various forms. It might involve cleaning their home, helping with laundry, stocking their refrigerator and pantry with groceries, or organizing a rotation of individuals to clean their home regularly.
Let’s not overlook their beloved pets. Consider temporarily fostering their pet at your home or assisting with pet care tasks such as dog walking, cleaning the litter box, and purchasing pet food. By doing so, you alleviate some of the burdens for the family.
Help with Siblings
While assisting with everyday tasks is crucial, providing support for the family’s other children deserves its own category of consideration. Many NICU parents express that one of their biggest stressors is managing their time between their children at home and their baby in the NICU. Knowing that someone is caring for and loving on their children at home brings them peace of mind and allows them to focus on their infant without feelings of guilt or worry.
It’s essential to help maintain the siblings’ routine at home, as their lives have also been flipped upside down by the NICU experience. You can offer to stay with the other children in their home or host them for a fun sleepover. Providing transportation to school, practices, games, or other activities can also greatly assist the parents. Establishing a carpool chain among the children’s friends or teammates can distribute the responsibility and ensure the parents feel supported.
Additionally, offering emotional support to the children at home is important. They miss their parents and crave a return to their normal routine. Providing them with extra love and attention or delivering special care packages can make them feel valued and supported during this challenging time.
Provide Thoughtful Gifts
When considering gifts for NICU parents, prioritize items that are practical and useful, as the parents are in survival mode and need support to manage their daily lives. As mentioned earlier, gift cards for gas, food, or general purchases are incredibly helpful.
NICU Journal
A NICU journal is another valuable gift for the family. These journals are tailored to specific milestones for the infant and offer support for the parents. During my own experience, I found a need for certain features in NICU journals that weren’t readily available, which led me to create our own NICU journal, Our NICU Roadmap. Our journal includes sections for documenting the baby’s milestones and progress throughout their NICU journey, along with educational resources covering common questions and NICU definitions. It also guides parents on important questions to ask the NICU team regarding amenities, rounding practices, and how the unit supports parental involvement with their baby.
What sets our journal apart is the detailed sections that encourage parental involvement, allowing them to document clinical progress, lab results, respiratory support, feedings, medication changes, and more each day. Click HERE to see some page excerpts from the journal.
Another thoughtful gift idea is a big, comfortable, and affordable button-down shirt for the mom or dad to use during kangaroo care. Hospital gowns, as you know ladies, are not the most flattering, so having a comfortable and practical alternative is appreciated. There are also specialized products and shirts available to support skin-to-skin care. A large blanket is also handy for covering up during extended stays in the NICU or for use during skin-to-skin care sessions.
For those inclined to craft, or even for those who aren’t, scent cloths are a touching gift idea. The sense of smell is one of the earliest senses to develop as it starts around 16 weeks gestation and is developed around 20 weeks. So even extremely premature infants will have the ability to smell. Using scent cloths is a touching gesture where the mother wears the cloth next to her skin for a day before placing it near or under the infant’s head, allowing them to smell their mother’s scent. I have to admit, I became a bit obsessed over this practice during William’s time in the NICU. It was one way I felt I could contribute during a time when I felt utterly helpless. I would swap out the flannel cloth under his head with the one from my bra and did this each morning. Annnndddd I have to admit that I would become unglued if he did not have it under his head when I arrived at the NICU. I sincerely apologize to William’s nurses who had to deal with me, but I truly believe it’s a wonderful gift idea, especially if the hospital doesn’t provide them.
Milestone Cards
Milestone cards are another wonderful gift option. Celebrating each achievement, no matter how small, is important for NICU parents to maintain positivity and focus on their infant’s progress. Unfortunately, these cards were not readily available when my son was in the NICU, so at Empowering NICU Parents, we created gender-neutral milestone cards with a talented designer. Knowing the myriad of small and significant milestones infants achieve during their time in the NICU, I compiled them into a comprehensive set of milestone cards, making them an ideal gift for NICU parents.
Consider putting together gift baskets containing these items along with healthy snacks, lactation-promoting cookies or brownies, and children’s books for parents to read to their infants. Click HERE for more information on our milestone cards and other products.
Be the Communication Liasion
As you’ve likely gathered, NICU parents are often overwhelmed with concern for their sick infant and the daily tasks they must manage. Having a designated person to provide updates every few days to share with specified family and friends can be incredibly helpful. Another option is to create a shared care page, with the parents’ approval, to keep everyone informed. This relieves the burden on parents from having to repeatedly relay information, which can be exhausting, particularly on difficult days for the baby.
Suggestions from Former NICU Parents
As I mentioned earlier, I reached out to my followers on various social media platforms to gather valuable insights, and here are some excellent suggestions they shared!
superdinkyuk
- Said that for her personally, it was when a friend did a backwards burglary on my house! She asked for my key to check something and dropped off shopping and a homemade cake 🍰 ❤️❤️❤️❤️
hellolittle.love
- She greatly appreciated those who helped take care of our 4 year old son at home while we were at the NICU with our twins. They filled in the gap for us when we couldn’t be with him and made him feel so loved and cared for 🤍
- My friend @lkodadek988 came to take notes for us during a very scary meeting with the care team. I will never forget it.
birthtraumastoriespodcast
- Their time. I was in a coma when my baby was in the NICU. We had many, many friends and family (and friends who are family) come and hold my baby. I absolutely cherish those photos!
mindfulhealingmama
- I had my baby during lockdown and on the day he came home some friends came to our house to decorate the front porch with balloons and a garland. It was the only in-person support we got during those few weeks together as a family of 3.
eatandsage
- My PTA got together and donated gift cards so I didn’t need to worry about food for my other kids.
mama_heidrich
- My parents watched our son for the entire time I was in the hospital and anytime we needed afterwards. My In-laws came over and clean our yard and front of our home for us. ❤️
emitch2012
- 3 of my best friends and their husbands flew up to the city I was at (had my preemie while on a work trip 2 states away from home) and took me out to a movie and dinner and then spent time with me rotating in to the nicu so I could take time away without any guilt. It will forever be the most selfless act of friendship I’ve ever experienced in our 39 years of friendship.
dallas_as_in_texas
- I had dinner every single night made either by my parents, my in laws, my parents friends or neighbors during our 90 day NICU stay. Also my SIL bought almost everything on our baby registry because we hadn’t had a shower yet.
We were overwhelmed by the incredible response from our NICU community! What I just shared is only a small portion of the responses were received. They shared some fantastic ideas on how friends and family members supported them during their NICU journey. Click below to see the complete list of amazing suggestions from former NICU parents.
Closing
In closing, it is evident that supporting families with a child in the NICU requires a thoughtful and comprehensive approach. From emotional support to practical assistance, every gesture, no matter how small, can make a significant difference in alleviating the burden on these parents during an incredibly challenging time.
Remember, NICU parents are navigating uncharted territory, often feeling overwhelmed with worry and uncertainty. While they may not always articulate their needs, your proactive support and understanding can offer immense comfort and relief.
Whether it’s providing a listening ear, organizing practical help with everyday tasks, or offering thoughtful gifts tailored to their needs, your efforts contribute to a network of support that surrounds these families with love and compassion.
Now that you have been empowered with practical insights and heartfelt gestures, you can become instrumental in lightening the load for NICU parents, allowing them to focus on what truly matters—nurturing and caring for their precious little one in the NICU.
References
Kim, Y., Ganduglia-Cazaban, C., Chan, W. et al. Trends in neonatal intensive care unit admissions by race/ethnicity in the United States, 2008–2018. Sci Rep 11, 23795 (2021). https://doi.org/10.1038/s41598-021-03183-1
Pineda, R., Kati Knudsen, Breault, C.C. et al. NICUs in the US: levels of acuity, number of beds, and relationships to population factors. J Perinatol 43, 796–805 (2023). https://doi.org/10.1038/s41372-023-01693-6
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