September is a time to think about and bring awareness to NICU parents, babies in the NICU, and the medical teams that work so hard to care for these babies. The National Perinatal Association even breaks down this week of September to recognize and honor all of those involved in NICU care. You can check out their website to learn more. (For this week September 26 is NICU Remembrance Day, September 27 is NICU Giving Day, September 28 is NICU Staff Recognition Day, September 29 is Sibling Support Day, and September 30 Neonatal Intensive Care Awareness Day.)
Some of us may know someone with an experience in the NICU (Neonatal Intensive Care Unit). Our hearts are there for our friends, neighbors, or families, but we don’t always know what they are going through exactly or how to support them. In honor of September’s NICU Awareness, I reached out and asked a few parents some questions about their experiences in the NICU. Their answers are real and raw, and sometimes gut-wrenching. You can feel the emotions in their words. Their answers are their truths and hopefully we all better understand what these experiences are like and maybe even how to better support those we love if or when they are experiencing a NICU stay.
What surprised you as the most challenging part of having a child in the NICU?
“Recovering from birth and not having a comfortable place to be near my baby.”
“Being separated from your newborn. I felt it whether I was physically not in the room with her or even physically in the room with her. I just felt separated from her and as my first, it was the hardest thing feeling like I couldn’t just be with her after her birth which was all I wanted.”
“My baby being in the NICU was a shock to me. Both my husband and I are very healthy. I had a normal healthy pregnancy and my baby was full term. I just never thought that I would have a baby with complications. “
One of the most challenging things, to this day, is that I don’t feel like my baby and I ever got that snuggling, in our own world, feeling. I only got to hold him a few seconds after birth. I definitely had to grieve the loss of the birth/postpartum I thought I’d have.
What positives did you feel about the NICU and its staff?
“Their willingness to help me with breastfeeding/pumping. They went as far as to get all the supplies and try to make a private spot for me to pump near my baby to help stimulate milk production despite sharing a room with 5 other babies.”
“The nurses were amazing! They taught my husband and I so much about caring for a newborn (taking her temperature, giving her a bath, swaddling, etc.). Although our mom/baby nurses were great, the NICU nurses were so supportive and went about teaching us so many things about newborn care that I felt so much more prepared.”
“That they saved my child’s life. He’s a thriving toddler now and without a doubt it’s thanks to the doctors and nurses who took care of him. Also, the NICU staff was very supportive of our breastfeeding relationship. They also taught us how to care for a newborn. Sometimes my husband and I refer to our time there as “baby boot camp”. They taught us how to change diapers, breastfeed, bottle feed, and bathe the baby. Babies in the NICU are also on a very strict schedule and we just kept that schedule even when we got home. It helped us feel like we knew what we were doing.”
What did you feel was negative during your baby’s NICU experience?
“In retrospect the doctors and nurses were trying to help my baby. But due to all those post birth hormones and the fact that I was also very sick, I literally thought the doctors took my baby from me. It was very traumatic.”
” I wished there had been more private spaces at our hospital where I could have been more comfortable while holding our baby and recovering. Also, although I loved the nursing staff for the care they were providing and newborn care aspects, I felt it was lacking in support of breastfeeding.”
Driving away from the hospital without your baby was almost a physical pain for me, like I was leaving half of me there, and just a shell was heading home.
If you knew someone whose baby was getting admitted to the NICU what would be your best advice? Tips?
“To check in with them!!! To offer to bring them a meal if they are still at the hospital. And if they are home and their baby is in the hospital give them support. Even if they don’t come right out and ask, just a text is great. Even just popping over for some company to help keep their mind off things.”
“Tips- take lots of pictures because you don’t always know what the outcome could be.”
“Speak up for your needs and for your baby’s! Do not hesitate to advocate for your needs. I wish I would have asked for more comfortable areas to sit, I’m sure they would have been able to figure something out but I didn’t want to be a burden. I felt like I would have been able to be there more had I done that.”
I think it’s really cute how they call the babies “NICU graduates” when they leave the NICU.
What do you think the general public doesn’t understand about parents with babies in the NICU?
“That PTSD can occur after their stay. The beeping of the monitors, the urgency of the doctors, the critical decisions that can be life altering for your child/family. Even if parents end up leaving with a baby in their arms, their stay in the NICU changes them.”
“It’s not all premature babies who are in there – Evelyn was full-term and a large baby! I never even thought we’d have a baby in the NICU because she was full-term. But with jaundice that wasn’t going away as fast as it should have, it was definitely the place she needed to be.”
“That even if the baby is the NICU for something seemingly minor, to a new mom and her partner it’s life altering and the scariest! Unless you have been there it’s hard to understand, I think. But check in and don’t just assume everything is fine.”
What would have or did help you feel supported during your baby’s stay?
“Since we didn’t plan for the NICU we didn’t really pack or have anything for a long hospital stay. I ran out of clean clothes and toiletries. My mom had to bring us more clothes. Bringing us food, clothes, and coffee meant the world. Also just visiting so I could have someone to sit with meant the world.”
“The nurses helping me to order meals since I was a breastfeeding mother. Even though my baby was in no position to eat (sedated/ventilation) they helped get me breastfeeding supplies, helped me store my milk with my child’s name on it in the fridge and made sure I was getting enough to eat and drink.”
” A more private space to recover. The hospital did let us stay in our room one night longer (allowing us to have to leave her for just one night), but the hospital was full. I was so thankful that we could stay that first extra night, but it would have been so much better to have some space to be comfortable after I had been released. Also – (sorry for the TMI) – it was the worst to change pads in a hospital public bathroom. It was a little thing but on top of everything else it was just so hard!”
The care and love the nurses had for those babies. You could feel the support and care that the nurses had.
A big thank you to the parents who shared their stories here. Overwhelmingly we can feel how the medical staff is caring and how grateful these parents are to the team that supported their babies. You can also hear in their words how difficult it is as a parent to navigate it all.
Reach out to these people. So bring a new parent a coffee and offer a hug! High five a nurse and thank her for her work! Write that neonatal physician a note reminding them of how many families are grateful for all they do!
by Andrea Stainbrook