Guide to the NICU

 Originally published by Lisa Treleaven on Nov. 17, 2014 on her blog Yes, This I Know.

If our sweet girl June had been born on her actual due date last year, she would be turning 1 tomorrow. Instead, she celebrated her first birthday on Oct. 10. She was born five-and-a-half weeks early due to concerns about the affects her tachycardia was having on her heart in utero; the doctors needed to deliver her to start treating her heart condition directly. It was a rough road. She spent two-and-a-half months in the neonatal intensive care unit (NICU) before she was able to come home with us. Now, one year and five-and-a-half weeks later, with our beautiful daughter still happy and safe with us at home, we are able to reflect on those first months.

Currently, 1 in 9 babies in the U.S. is born prematurely. Chances are, you already know someone whose child, grandchild, niece or nephew was born pre-term. Premature birth is a complex, often unexpected, and overwhelming experience that is unique to each family who experiences it. Family and friends often wonder how to best support the new parents in this journey. The ideas and links below may be helpful if someone you love is navigating a NICU journey.

Feel free to follow your instincts and select, adapt or ignore any of the ideas below. Some suggestions are a better fit for certain families than others. Your knowledge of, and concern for, the family are your best guides when deciding how to offer your support. I’d love to hear any suggestions you would add!

Ask the family how you can help. They may have a specific need in mind. If not, then:

Offer to help in a specific way and allow the family to accept or decline. The family may not be able to anticipate and request help for their many needs during this overwhelming time, so offering to help in a specific way can be a welcome relief for the family. Be sure to communicate your intention to the family and obtain their approval so they can plan accordingly.

Connect the family with resources you know of (with permission from both parties), such as other families who have had a child in the NICU, who have experience with the hospital they are at, or who have a child with the same medical conditions. Families who have experienced medical crises are often compassionate and eager to help families in similar positions.

Help with transportation. Hospital parking can be expensive, so many families seek alternatives to parking on-site. Offer to drive your loved one to the hospital, to shuttle between the hospital and a local parking facility, provide public transportation passes, give them gas station gift cards or contribute money toward parking fees.

Deliver forgotten essentials. More often than not, when I settled in at the hospital for a few days’ stay with no car nearby, I discovered I forgot something. Comb, phone charger, deodorant, change of socks, jacket …

Or provide a handy item your loved one might not think of like ear plugs to block out hospital noise, headphones, a tablet to watch movies or shows, thick hand cream to ease skin that is raw from hand washing, extra pocket hand sanitizers or surface wipes, and pens so the use of germy, publicly-shared pens can be avoided.

Provide snack items that will fit in a purse and do not require refrigeration, such as cookies, crackers, bananas, apples, trail mix, chips, granola bars, soft drinks, water, candy, etc. Ask the family if they have access to a communal kitchen with a refrigerator, and if they’d like any groceries to store there.

Care for older children while parents visit the NICU. Remember the NICU experience is a confusing, emotional time for the children in the family too. Caring, individual attention from loved ones can help siblings of children in the NICU cope with this experience.

Provide travel activities for older children. NICU parents will often travel with older children during this busy season, and sometimes bring children to the hospital with them. Activities that are easily portable, entertaining and are not messy can be very helpful such as toddler busy bags (see Pinterest for ideas), coloring books – especially helpful with “magic” paper/clear markers that won’t mark on other surfaces, books, toy cars, and electronics for movies and games.

Care for pets so parents have the freedom to be at the hospital for extended periods of time.

Run household errands such as shopping, mail pick up or delivery, car maintenance, bill payment, dry cleaning or banking.

Help around the house such as with grocery planning, cooking, arranging meal delivery, mowing the lawn, watering plants and cleaning.

Visit the hospital with the family’s permission. Perhaps bring a meal, be an empathetic listener over coffee, or if you are allowed, sit at the bedside so the child’s parent can take a break or a nap. Be sensitive to the fact that the family’s desire for company and conversation will vary widely and change often. Always ask permission and follow the family’s lead without judgment in regard to planning a visit.

Pray for the family if prayer is part of your spiritual practice. Share their prayer requests with your faith communities. Let the family know you are praying for them and/or share meaningful quotes or verses that come to mind. When we were in the NICU, we were particularly encouraged when several people sent us the same verse independently of each other.

Send encouraging messages via notes, cards and emails. Some hospitals allow families to tape cards around the NICU bed space, and some do not. Note that flowers and balloons will not be allowed inside the NICU, and the family will most likely not have anywhere to store a bouquet while at the hospital. It is best to forego these items, or to send them to the family’s home, rather than the hospital.

Baby gifts that can be used in the NICU vary between hospitals and from patient to patient. Some children cannot wear any clothes or have any toys, cards or crib mobiles in the NICU, so be sure to ask the family before providing a gift. If clothes are allowed, items that have metal snaps down the entire chest and metal snaps at the crotch and down both legs with open feet (not footies) are usually best so that each part of the body can be accessed quickly and individually, and wires can pass through clothing layers easily. Snug socks are often used to keep the pulse oximeter secure on the foot. Hats, if allowed, are useful for regulating body temperature. Note that Velcro should usually be avoided, because it is a terrible mess if it comes into contact with gauze and other medical supplies. There are exceptions to all of these guidelines though and the family should get specifics for their child from the NICU. Bear in mind that clothing restrictions may get more permissive or stricter as the medical situation changes.

Monetary needs vary widely between NICU families. Ask the family what monetary support would be helpful, if any, including gathering gas, grocery, hotel, food or entertainment gift cards, setting up a GoFundMe or similar donation website, or directing donations to the family’s hospital billing accounts. Also consider helping the family connect with local nonprofits like Ronald McDonald House, Christmas giving campaigns or other services for which they may be eligible.

For a more information, see the Women and Infants’ page on Supporting NICU parents and the March of Dimes’ page on Grandparents and the NICU.