Sadie's Purpose loves welcoming guest bloggers to our site. Whether they share stories from a parent perspective, a nursing perspective, or something else entirely, we believe it's important for our readers to see the NICU from all angles.
We are honored to present Payton Sy, an RN with a vast array of knowledge and experience, to share this wonderful post with us. Thank you, Payton!
“Other moms went home with a baby. I went home with a box,”
recalls Jasmine Paysinger, a nurse and former NICU parent living in Arizona. To this day, that memory box is one of her most prized possessions.
NICU parent trauma is an unforeseeable part of a baby’s discharge, regardless of the outcome. Whether parents return with a healthy baby, one with health challenges, or only a few keepsakes, they endured some of the most difficult moments of their life. These parents need hope. Although the wounds may linger, NICU parents can find pockets of peace through community support, education, and emotional validation.
At her 20-week ultrasound, Paysinger discovered that her son, Mason would have a frontal encephalocele. She knew this rare neurological birth defect would mean that Mason’s life would be limited physically and developmentally. After birth, Mason was intubated immediately and taken to the NICU. He was in the NICU for a month and was determined to not be a candidate for surgery. He passed away with his loving parents at his side, exactly a month after he was born.
After Mason’s death, Paysinger received donations, including the memory box she was able to fill with locks of his hair, his NICU blood pressure cuff, and hand and footprints. A generous donor gifted an unstuffed bear to their family during the NICU stay, as safety concerns prevent the NICU from allowing stuffed animals. Mason had the unstuffed bear at his crib for the duration of his stay. Now, his sister looks after the bear, and the bear is often featured in their family photos. With palpable gratitude, Paysinger said, “I can’t explain how much those items and donations mean to me. Sometimes they are the only keepsakes we have of our little ones.”
An anonymous mother of two babies with congenital abnormalities recounted how a sense of community helped her during her challenges, and how she paid it forward. She said,
“through the darkest times, what carried me was the gratitude and kindness we were extended. The best gift I received was a cooler full of my favorite drinks and snacks, and some fun books to pass the time. I later gave this gift to every friend or relative that had a similar experience.”
Many NICU parents acquaint themselves with other sets of parents throughout their baby’s hospital stay. They peek over at the next bed, which reveals another set of parents with the same fear in their eyes. Realizing that someone understands what they’re going through, they foster relationships with the other parents and become members of the same playgroup or lifelong friends.
The NICU brings a sense of uncertainty. Nurses can’t guarantee a specific outcome, but they can make more of the unknown, known. Some mothers with diagnosed complications remain on hospital bedrest for a portion of their pregnancy. Nurses familiarize these patients with the NICU, introduce them to the bed their baby will stay in, and the monitors and lines that will be used for their baby’s care.
Even when parents can’t prepare for their baby’s NICU stay, nurses take special consideration in educating the baby’s family. This includes continuous updates, emphasizing the improvements their baby has made. The nurses explain what orders the doctor has given, what happened during rounds, and how the parents can be included in the baby’s care. Involved parents are empowered and provided with a sense of control.
Shae Williams, a former labor and delivery nurse and NICU parent visited the NICU twice per day once she stabilized from a high-risk delivery due to HELLP syndrome (a condition arising from preeclampsia, which is characterized by high blood pressure). Williams spent many hours learning about her baby’s condition. The education and care she received from the staff are what lead her to eventually pursue nursing school. Her “NICU baby” is now 15 years old and doing well.
“At least it’s not worse! You should be grateful,” is one of the least affirming things for anyone to hear during a difficult time.
Regardless of the length or severity of a NICU stay, everyone carries their experiences with them. For a long time. The sight of plastic incubators and the rhythmic beeping alarms are just a portion of the sensory overload that parents endure during long days at the hospital.
Many NICU parents confide that the first time they smelled foamy hand sanitizer after their baby’s discharge, tears flowed as they were overpowered with memories. Parents need to know those lasting feelings of grief, anger, sadness, depression, or jealousy are all valid.
Paysinger met with perinatal and grief nurses to help her navigate her challenges starting at the time of that 20-week ultrasound, and 10 years after Mason’s passing, she still meets with them at scheduled intervals. The parents that receive healing words from friends and family after their experiences are more likely to cope with the trauma they’ve encountered.
Every Parent, Every Baby
Through grief, many NICU parents have found the strength to continue and even help others. Every NICU parent deserves to have community support, education, and validation to help them process their stories.
Sadie's Purpose is a registered 501(c)(3) nonprofit organization dedicated to supporting NICU families. Through donations, Sadie’s Purpose provides essentials and comfort items for parents that have to drop everything and spend long hours in the NICU, loving and supporting their child.
Everyone grieves for the parents that don’t take their baby home, but the ones that do need support as well.
“Everyone celebrates the preemies that make it home, but the ones who don’t make it should be honored, too,” Paysinger implored.
Let’s grieve and celebrate with them all.
Payton Sy is a registered nurse and the founder of paytonRNwriter.com. She has experience in some of the many angles of health care, including home health, hospital nursing, primary care, and insurance. She is dedicated to educating consumers about preventative care and health literacy.