The NICU experience can leave parents feeling incredibly isolated and alone. We want NICU Parents to know that they are not alone in their journey. The frustrations, anger, jealousy, fear, and uncertainty that parents experience are common feelings for most NICU Parents.
~Nicole Nyberg, Empowering NICU Parents
I am excited to share my interview with Nicole from Empowering NICU Parents. The work they are doing is amazing and much needed! Make sure to connect and support on Facebook, Instagram, Podcast, and Website.
Tell us your story and how Empowering NICU Parents began.
I always knew that I wanted to be a nurse, specifically to care for babies. I was a NICU nurse for 12 years before I became a Neonatal Nurse Practitioner in 2013. Shortly after I graduated, my husband and I got married and quickly became pregnant since we were anxious to start our family. My first trimester sailed along beautifully, but right at 15 weeks and the beginning of my second trimester, I had to be admitted for contractions and preterm labor. My complications continued and ultimately I had 5 admissions to the hospital for bleeding and preterm labor. While I was an inpatient, they had to perform an emergency cesarean section due to fetal heart decelerations and a suspected placental abruption. Our son, William Russell Nyberg was delivered at just 23 4/7 weeks.
He was transferred to a Level III NICU and his NICU journey began. With the medical knowledge and experience on my side, I knew what to expect, questions to ask, and how to care for our extremely premature son, but on the flip side, I also knew all of the potential complications William was at risk to endure, including the possibility of never making it home. I was terrified and felt utterly helpless. Even though it was a world I knew so well, seeing my son endure painful procedures and fight for his life, was incredibly difficult. William’s time in the NICU was a time of complete turmoil full of peaks and valleys. It was difficult mentally, financially, and put a lot of strain our my relationships and marriage. Despite a few set-backs, William did very well overall and after spending 91 days in the NICU, we were able to bring him home on oxygen. William continued to thrive and defy many of the odds placed against him. He is currently a happy, healthy, funny, strong-willed, kind, and smart First Grader.
After our personal experience, our organization, Empowering NICU Parents was created to ease the NICU journey for other NICU Parents. We bring awareness to family-centered care, plus support and educate parents on the importance of parental involvement and empowerment.
What kind of impact do you hope that your organization can have?
Our goal at Empowering NICU Parents is to support, educate and empower NICU Parents. We hope to lessen the stress during the NICU journey for parents by providing support and educational content through our website, our Empowering NICU Parents Podcast, and with our products.
The NICU experience can leave parents feeling incredibly isolated and alone. We want NICU Parents to know that they are not alone in their journey. The frustrations, anger, jealousy, fear, and uncertainty that parents experience are common feelings for most NICU Parents. We share stories and support from other NICU families, to offer hope and a sense of community because no one understands the NICU journey unless they have traveled down the road themselves.
We hope that through the support and education we provide, NICU Parents will be better equipped with knowledge so they feel more empowered to become an active member of their baby’s care team. Parental involvement and engagement has been shown to improve the long-term developmental outcomes in infants. We want parents to be involved in the care of their infant, do daily skin-to-skin care when possible, to confidently ask questions, and to be involved in the daily decision-making process for their baby. Parents should not only be active members of their baby’s care team, but the most integral members.
NICU Parents often feel that their parental role has been stripped from them which can prevent proper parental-child attachment. We want to encourage parents to become and remain actively engaged in their baby’s daily progress so they begin to feel confident in caring for them. Parents should be given the opportunity to learn their infant’s behavioral cues and care for their NICU infant from admission through discharge. The more parents are involved with their baby while they are in the NICU, the more comfortable they will become which increases bonding and ultimately improves long-term outcomes for the baby and family unit as a whole. We want to educate parents so they know that their daily involvement can positively impact the long-term outcomes for their baby and family.
What is the biggest concern facing NICU parents today?
I feel that today, and in the last year and a half, the biggest challenge for NICU Parents has been the very restrictive visiting policies throughout the NICUs worldwide due to the COVID-19 virus. After speaking with several different parents, they have all reiterated how difficult it has been to endure the NICU journey with minimal or no support. Several NICUs have only allowed one parent in at a time, at times just a single parent for the full 24 hours, whereas other NICUs were reported to only allow one parent throughout the entire NICU stay.
Amongst all of the stress, trauma, good times, and difficult times, parents have had to sit next to their baby’s isolette completely alone without any support through it all. Other parents report that it was so difficult to not have the ability to share their baby’s “firsts” with their spouse or significant other like giving their baby the first bath, or the first time they held their baby skin-to-skin, or fed their baby. Some parents reported that their time in the NICU was also limited to just an hour or two each day. Parents have also had to helplessly endure the ever-changing rules and restrictions based on the number of local cases per each NICU’s discretion.
Additionally, although parents were willing to do it, if for any reason they were a close contact or had COVID themselves, they reported it was so difficult to be away from their NICU babies for days. Parents also said it was so heartbreaking that their older children were unable to come into the NICU to ever see or visit their sibling. Grandparents, aunts, uncles, and friends have also not been able to see their baby or offer support while they are in the NICU.
Tell us about your podcast and NICU journal.
I created the Empowering NICU Parents Podcast early in 2021 as a resource for NICU Parents. The podcast features educational topics for parents on diagnoses, care practices and treatments common to the NICU. We have several episodes that focus on parental well-being and mental health to support NICU Parents as well. Several guest speakers have joined our episodes as well including mental health professionals, occupational therapists, and former NICU mothers to offer a wide range of topics suitable for all NICU Parents. I wanted to provide a feasible way to offer support, education, and empowerment to all NICU Parents.
My vision for Our NICU Roadmap, our newly released NICU journal, stemmed from the lack of a comprehensive NICU journal being available when William was in the NICU. I wanted to develop a journal that not only would be a great resource for parents, but that also served as a place for parents to document their baby’s progress each day while in the NICU.
As a Neonatal Nurse Practitioner, I knew the questions to ask, but during our personal NICU journey, I felt that there was not an appropriate place to document all of the information I wanted to remember each day. With my professional education and experience coupled with my personal experience as NICU mother, I knew the details that were essential for a NICU Journal.
We included specific areas to document the birth stats, delivery details, weekly measurements, eye exam and HUS results. Within our journal are 4 months worth of blank calendars to document on, and a daily log for all of the pertinent updates each day up to 90 days including daily weights, lab results, respiratory settings, feedings, who cared for the baby each day, and a place for parents to write down their questions and the plan for the day. The daily log is meant to prompt parents with questions and topics to ask the care team about each day during daily rounds so they can be actively involved. It will also help parents see the day-to-day changes and the growth their baby has experienced throughout their NICU journey.
A full journal section is included in the back so parents can journal which helps them to de-stress, heal, organize their thoughts, and gain perspective. Following along with the daily log and journaling helps parents to create order when their world most likely feels like total chaos. Our NICU Roadmap provides parents with everything they will need plus the finite details they have not even thought of yet! We hope to guide parents with our journal and ease their NICU journey from admission to discharge. As parents look back on their infant’s progress, they will be amazed by their little one and all of their achievements. The journal also serves as a great keepsake that will allow parents to share their baby’s story with them for years to come!
Please share anything else you would like to include such as sales or coupon codes, advice, etc.
We genuinely hope that the resources we have developed will help parents through their baby’s NICU journey. I encourage all NICU Parents to listen to our Empowering NICU Parents Podcast for support and education during their baby’s NICU stay. If you are a member of the NICU care team, please consider sharing our website, podcast and journal with parents.
Our NICU Roadmap is available for purchase on Amazon. For additional details, images of our journal pages, or for the direct link to purchase, head to https://empoweringnicuparents.com/nicujournal/ We are also offering a significant discounted rate for anyone interested in a bulk purchase of Our NICU Roadmap, just contact us through our email firstname.lastname@example.org to proceed.
We appreciate your support, so for anyone interested in purchasing a copy of Our NICU Roadmap, we are offering a discount of 30% off each journal! Contact us and mention that you read about us through this article.