If you are the friend or family member of a NICU parent, you have probably found that it can be hard to know what to say during this difficult time. The following list of Do’s and Don’ts was created by parents of CHKD NICU graduates. We hope it helps you feel better able to support your friend or relative during his/her NICU journey. Parents, feel free to pass this blog along to your friends and family.

• Do say: “I left (dinner, snacks, flowers, a card) at your back door.”
• I really appreciated a friend who put together a schedule of availability to drive me to the NICU to see my baby in the weeks after my C-section when I couldn’t drive. It would also be helpful for a friend or family member to put together a schedule of meal deliveries.
• Appropriate gifts for new parents of a 2-pound baby are not clothes and toys. We could have used snacks, journals, restaurant cards (nearby the hospital).
• Do say: “I’m going to bring you lunch at the hospital/run errands for you/walk your dog/mow your lawn,” rather than “What can I do”? It’s hard to ask for help and/or know what you need.
• Do understand how much we appreciate your support.
• Do say: “I’m here, but I understand if you don’t want to talk right now.”
• Do give me a hug when I’m crying. Don’t just say “Everything will be fine.”
• Do say “She is beautiful!” Every new parent wants compliments.
• Do take the time to read my CaringBridge updates.
• Don’t say “I wish you would have called me” or “I haven’t heard from you in so long.” Understand that conveying constant updates is overwhelming. NICU parents are tired, worried, and cannot handle meeting the emotional needs of their friends and family.
• Understand that if we hurt your feelings, we don’t mean to. We are in survival mode.
• Don’t complain about how big or uncomfortable you are in your third trimester if I’m around. Also, if we were due around the same time, try to understand if I don’t seem excited about your baby shower.
• Don’t say, “At least you don’t have a baby waking you up at night.” I would give anything to have a baby at home waking me up, rather than pumping in the middle of the night alone in an empty nursery.
• Don’t ask “Do you have to go there every day?” Yes. This is my baby. In a Neonatal Intensive Care Unit.
• Don’t say “At least you get a baby longer.”
• Don’t say “I know exactly how you feel.” Ever.
• Don’t say “I heard the terrible news. I’m so sorry.” It broke my heart to have someone describe my daughter’s arrival that way.
• Don’t say “You’ll be back in a bikini in no time/Look how quickly you lost the baby weight/I wish I looked as good as you after I had my baby.” Any comments about my weight really upset me because they just emphasized that I was unable to carry my daughter to term.
• Don’t stop asking about my baby just because I had one good report to give; the NICU is a roller coaster. She is not fine just because she had one good day.
• I am not necessarily fine just because I’m smiling.
• Don’t imply that my baby chose to come early to meet me or see the world. I’m sure if given a choice, she would have chosen a warm belly over lights, noises, needles, tubes, etc.
• Don’t ask when he is coming home. When we know we will be sure to share the happy news.
• Don’t judge me after discharge if I want to stay home and protect my baby from germs. My baby is still medically fragile and we have to continue to make his health a priority.
• Don’t assume the journey is over just because she came home.

About Team NICU 101

CHKD is home to the region’s largest and most sophisticated neonatal intensive care unit, certified by the state as a subspecialty nursery. We provide intensive care for high-risk, critically-ill neonates and care for approximately 500 babies a year.