The experience of parenting a premature infant in the NICU is often overwhelming. Although the health of our baby(s) is our greatest concern, in the day to day life in the NICU, it is the little things that medical professionals do that make a difference. Preemie parents from all over the world came together (via www.preemie-l.org) to create a list for nurses and doctors that will help them understand the intricate needs and desires of parents and families. Please feel free to print this list and give it to anyone who may benefit from it.
Do: Ask me what I like to be called. I may or may not want to be called “mom.” I would like to be called by my first name.
Do: Send me a Polaroid of my baby when I can’t get out of bed because I have had a C-section.
Do: When referring to my baby, please don’t call him “your baby” (as if he is your baby) or “the baby.” He is your patient, but he is my baby. The best possible way to refer to my baby is by calling him by his first name.
Do: Give me a tour of the nursery soon after I arrive so I know where the pumping room is, where to store breast milk, the lounge, bathroom, etc. (Remember if I am groggy or having a difficult time coping, I might need a second tour later.)
Do: Make a cute nametag for my baby’s bed.
Do: If you are the nurse caring for my baby, acknowledge me when I come in the room so I know who you are.
Do: Tell us when I can speak with the doctor.
Do: Promote attachment between parents and their babies. Show me that you are confident I will not cause my child any harm.
Do: Tell me how to read stress cues so I know the best time to touch my baby and when to stop.
Do: Show me how to do things that I can do to help care for my baby.
Do: Realize that once I am able to do some kind of activity for my baby, it is really stressful to have a staff member decline my doing it because they are unable to help.
Do: Acknowledge when we do things correctly, praise us, thank us!
Do: Tell me how to touch my baby in a developmental and soothing way.
Do: Allow me to hold my baby as early as possible-it is the best part of being a parent.
Do: Help me to do Kangaroo Care as early as possible. Please check on me during this time to make sure I am okay.
Do: Encourage us to make a tape to leave in the isolette; singing, talking, or telling stories for my baby. Tell me what I can do to decorate my baby’s bed.
Do: Create an environment for my baby that seems healing and supportive (ie. No harsh lights or minimal noise, but cluster care when possible).
Do: Put up a big sign that says, “SHHHH…BABIES ARE SLEEPING!!!!”
Do: Quietly set things down on the isolette—remember the sound inside is much louder!
Do: Take pictures (with a Polaroid or with a disposable camera I have left for you) of our babies when we’re not there, or when we’re cuddling or spending time with our babies. We may not think to get our cameras out at those special moments, and we may be missing some big ones when we can’t be there.
Do: Talk to my child and explain that you are about to touch them.
Do: If you find it necessary to shave my baby’s head for an IV, please save a lock of hair from the “haircut.”
Do: Provide support without judging.
Do: Realize that every parent is different and responds differently. Find out how we want to deal with things.
Do: Understand that parents, like our children, will have “crisis days” and they may not coincide with the status of my baby.
Do: Work to build genuine connections with parents. Even when there is nothing concrete or specific that you can do, your presence, attention, and compassion bring strength and comfort.
Do: Help parent of preemies build a community by removing obstacles preventing families from finding comfort in the experiences of others. Do what you can to create an environment in which parents can talk and support one another.
Do: Provide honest information and clear explanations. Please allow us to ask questions.
Do: Let us know when tests are being done on our babies (even if it means a quick call to home) and explain what they’re for-in parent’s terms. (Also let us know if any scheduled tests/procedures have been cancelled and why.)
Do: Let us know that we are allowed to read our baby’s chart.
Do: Give us access to as much information as possible. Have a parent library with current books, videos, and a list of websites available. We would love to be able to buy books right there in the hospital-please encourage your gift shop to stock a supply of books and resources that we may purchase to help us through this process.
Do: Give us complete information that is significant to future possible outcomes (concerning all drugs, procedures and alternatives that we can choose from).
Do: Realize that the truth is always easier for us to deal with in the long run. If a bleak prognosis can be expected, that prognosis won’t be any easier if it comes as a complete and total shock later on.
Do: Respect parents enough to allow them to feel all their jumbled emotions without running away or minimizing what they feel.
Do: Talk with us about other things than our baby to help us pass the time and get our minds off things (maybe even ask us about the birth or things unrelated to our baby). It’s nice to be treated as a friend.
Do: Support us if we are unable to breast-feed/express milk and must use formula for whatever reason.
Do: Refer me to a lactation specialist if I am having trouble lactating or feeling uncomfortable with pumping milk or breast-feeding.
Do: Please respect my efforts in pumping my breast milk and breast feeding my baby. Thaw only what breast milk is necessary for each feeding-it is a precious commodity! Please say only encouraging remarks about my breast-feeding efforts.
Do: Do ask me if I would like to have a screen put up when I am trying to nurse my baby, as it is a very exposing experience with these tiny babies. Please check in with me often when I’m behind the screen, especially when the alarms are going off.
Do: Make sure to let me know when my supply of breast milk is running low so I can make sure to bring some in.
Do: Dress my baby in her own clothes whenever possible.
Do: Find out our schedules so we can be there for feedings, baths, and maybe even a quick holding during weights and isolette changes.
Do: Encourage me to write notes to be left on my child’s bed that share my special knowledge of my child with the staff.
Do: Give credence to a parent’s intuition about their child. If I tell you, “Something is wrong”, act on that information as if it were true.
Do: Congratulate us on our baby’s milestones! (Diapers finally taped on, larger diapers, changing to a new type of bed, going to a lower oxygen setting, getting off the vent/CPAP, wearing clothes, learning to suck/swallow, being held, etc.)
Do: If you have not cared for my baby before, please read the chart carefully and note what times I usually come by.
Do: Put graduate pictures of former patients in the waiting room.
Do: Laugh with us.
Do: Cry with us.
Do: Treat us like real parents.
Don’t: Call me “Mom.” Please ask me what I would prefer to be called.
Don’t: Move the baby without telling me ahead of time, or at least meeting me at the door.
Don’t: Tell me how I should be feeling or that I “need to be patient.”
Don’t: Dismiss or diminish my concerns. I am not used to seeing my baby have bradycardias or color changes.
Don’t: Assume that I don’t care for or love my baby if I don’t touch him. I may be very scared or overwhelmed.
Don’t: Tell me my baby had a bradycardia because I was touching him, feeding him, or doing something wrong.
Don’t: Please never treat me as if I am stupid. All of the medical terms and information are very difficult to understand and comprehend at times, especially since I am probably feeling a tremendous amount of stress.
Don’t: Write harsh judgements about me in the nurse’s notes, unless the information you are recording is known to you without question from both observation and communication.
Don’t: Assume anything about me or my family if we are unable to visit regularly. My family may be very loving and supportive, but cannot come to the NICU for other reasons.
Don’t: Sound annoyed or make insensitive comments when I call to check on my baby. The phone is sometimes my only connection to my precious baby.
Don’t: Do the tasks that I have already been doing (bath, diapers, feedings, etc.) if you know I am on the way to the nursery. It takes away what little parenting I can do.
Don’t: Act as if breast-feeding is not crucial for my baby. There is enough scientific evidence of its importance to preemies that it should be encouraged to breastfeed. However, if I am unable to produce milk, please do not make me feel inadequate by comparing me to all the other mothers who have no problem with lactating.
Don’t: Talk loudly or keep the lights on unnecessarily.
Don’t: Please be careful to not share information about a baby with the wrong person. Please check and double check that you have the correct information with the correct parent.
Don’t: Talk about a baby in a negative way when the parents are gone. It is morally wrong, very unprofessional, and may also hurt other parent’s feelings (wondering what they say about my baby when I am not here).
Don’t: Try to instill your personal views (philosophies, religion, or ethics) on us. Allow us the same freedom to choose and have our views, as you were allowed to choose and have yours. (This includes miracles happening in the NICU.)
Don’t: Be afraid of my emotions, or of your own.
Don’t: Let me travel this difficult journey alone.
Edited by: Dianne Maroney