Advice for New Parents with a Baby in the NICU

The holidays are a stressful time for many, but especially for those with a baby in the NICU. The Neonatal Intensive Care Unit, or NICU for short, is a special floor in hospitals specifically for babies battling congenital disorders, birth complications, breathing or feeding difficulties, or other trauma. It can be overwhelming and intimidating for new parents, and even experienced parents. I asked some NICU survivor parents to pass on some advice and share their experiences so that those with a baby in the NICU this Christmas season do not feel so alone.

“PTSD is real. Give yourself lots of grace! You are experiencing things that you will need time to process.”

— Sarah, mother of Ada - 30 days in the NICU

“It’s been a long time, but the one thing that sticks out in my mind is that when Riley was finally moved out of the NICU, they didn’t let me know. So when I arrived at the hospital, her little incubator was empty and I panicked. I recommend asking to receive regular updates when you’re not actually at the hospital.”

— Tina, mother of Riley - 9 days in the NICU

“When you like a nurse, and feel comfortable with them, ask for them to be a Primary nurse! It will help you sleep - and feel more comfortable and safe - when you can’t be there with your baby. Take it day-by-day. When we found out about Sloan’s diagnosis, we received some great advice from a social worker at the NICU to stop “planning” and “thinking ahead” and to just focus on grieving and holding Sloan’s hand for a week, while the experts take care of her medical stuff. That acute grieving process helped us gain strength again, because suddenly there came a day when we were strong enough to talk to the Medicaid office about Sloan’s future, to contact the school for the DeafBlind, and to ultimately take Sloan home and be ready to manage not only the “typical” new baby stuff, but all the medical needs on top of that.”

— Kari, mother of Sloan - 51 days in the NICU

“Take an active role in your child’s care - the more present and hands-on you are, the more likely you are to establish trust and cooperation with your team, especially if you’ll be there for a while.”

— Jess, mother of Lily - 256 days in the NICU

“It’s so hard. Don’t be afraid to try and be as much of a part of the process as you can (doing baths, etc.).”

— Stephanie, mother of Jaxon - 40 days in the NICU

“My biggest tip, and I’m sure other moms would agree, is to not be afraid to speak up. To advocate for your baby. Even though they are doctors and nurses, there are plenty of times when you know your baby better than they do.”

— Heather, mother of Jameson - 70 days in the NICU

“Take it one day at a time, make sure to take care of yourself and be kind to yourself! The guilt is real when trying to balance going to the NICU and going back home. Try to stay positive. The doctors told us Eddie would be in the NICU for months, because he had a feeding tube and oxygen. Don’t lose hope or the faith and take little wins! Also, let people bring you food - it helped so much!”

— Liz, mother of Edward - 15 days in the NICU

“Take advantage of all the extra help. It’s so nice while you’re trying to get through such a tough time.”

— Taylor, mother of Olive - 60 days in the NICU

“Allow yourself time to step away. I know it’s the last thing you want to do. I have been there. You don’t want to leave them ever, but you are going to need to to give yourself a chance to breathe. The NICU is exhausting. Especially seeing your child in that state. When I finally accepted that it was okay to give myself a break, even for five minutes, the NICU days became easier. You will need rest. You will need time to catch your breath. Give that to yourself. Your baby is in safe hands and you need to be too!”

— Theresa, mother of Owen - 11 days in the NICU

“I have two things. One, keep a notebook to write down things the doctors say, questions you have and info from your nurses. Include anecdotes about your baby, too. Remind yourself how he liked having his head rubbed or loved the pacifier. Two, give yourself permission to take a walk, get some sleep, and eat a hot meal. You need to take care of yourself to have the strength to deal with the weight and worry of hospital life.”

— Heather, mother of Judah

I do not take lightly that these mothers entrust me to share their stories in such a public way. I am beyond grateful for the opportunity to share these journeys and I pray that even just one life is made easier by their words. To those of you spending or expecting to spend time in the hospital this Christmas, my prayers are with you. I hope you remember that you are never alone and there is an incredible army of parents that would be more than willing to hold you up when the weight becomes too much.