My birth plan got a drastic makeover in the last few weeks of my pregnancy when I learned that my baby boy had multiple heart defects and would likely require open-heart surgery during his first week of life. Instead of taking him home shortly after his birth to cuddle and nurse him and introduce him to his big sister, we were told he’d spend at least two weeks living in the neonatal intensive care unit (NICU), hooked up to a nest of wires amid the cacophony of beeping machines. I was crushed and terrified. Fortunately, when my little guy arrived his prognosis was better than doctors had expected. He didn’t need immediate surgery after all and spent only a week in the NICU — nothing compared to the long weeks and months that some families endure. Read on for expert tips on how to cope if your baby has to spend time in intensive care.
Do your research. If your doctor has privileges at multiple hospitals, and there’s a chance your baby may require intensive care (say, you’re having twins or you have a history of preterm deliveries), check out the facilities at each hospital’s NICU before you decide where to give birth. Not all NICUs are alike, and you want to make sure that the one your baby spends time in is well-equipped for her needs and yours, says Liza Gene Cooper, director of Family-Centered Care and Family Engagement at the March of Dimes. To learn about a NICU’s policies, call and ask questions such as “Can parents spend time with their babies 24/7?” and “Are older siblings allowed to visit?” Then schedule a tour.
Prepare to feel a range of emotions. Once your baby is born, the mix of emotions that you’ll experience, including elation that he’s finally here and anxiety over his health problems, can be overwhelming. Many well-meaning friends and relatives will urge you to stay positive and be strong, but it’s okay to feel sad and even to feel jealous of moms whose babies are born without complications. “You may also go through a mourning period for what your vision of bringing your baby home was going to be,” says Janna Wrench of Greenfield, WI, whose twins spent 69 and 112 days, respectively, in the NICU after arriving three months early last fall.
Build a support network. It can be difficult to connect with friends and family who have never had a sick baby, so try to surround yourself with people who can relate. Your hospital may have a special group for parents with babies in the NICU. “If not, ask them to organize a pizza night or an informal group for parents to meet each other over refreshments,” Cooper says. “If you prefer to connect one on one, gently approach another parent in a family lounge or waiting for an elevator.” Or join an online community such as the March of Dimes” shareyourstory.org.
Start bonding right away. You can form a powerful connection with your child even though she’s in an incubator. Ask to change her diaper and give her a bath whenever possible. Read your favorite children’s books to her; a 2011 study in the Journal of Developmental & Behavioral Pediatrics found that parents who read to their infants in the NICU felt closer to their babies and were more likely to continue the storytime tradition after going home. And while time in the NICU isn’t something any parent wants, it’s still an important moment in your baby’s life. “Bring a camera and take pictures of everything,” says Sarah Date of Woonsocket, RI, whose daughters both spent time in the NICU. “This is part of your child’s story.”
Get to know your baby’s doctors. The best way to stay on top of my son’s changing health status — and to get all my questions answered — was to be by his bedside for morning rounds. It can be a little intimidating to see eight doctors swarm into the room, spitting out indecipherable numbers and medical jargon, but it’s also reassuring to know that your child is in expert hands. Don’t be afraid to ask the doc to explain things in lay-friendly terms or even draw you a picture. If you can’t be there in person, find out when the nurses change shifts and call a half hour in advance, Date recommends. That way, you’ll get the scoop straight from the nurse who spent the day with your baby instead of the one who just took the report.
Take care of yourself. You’ll want to spend as much time as possible with your baby in the NICU, but you need to stay healthy so that you’re able to care for him. Get as much sleep as possible, and exercise to help manage stress. Pack healthy snacks (such as fruit, granola bars, and packets of oatmeal) that you can eat on the go without having to rely on the hospital cafeteria, and ask the nurses for the best dining options within the hospital and nearby.
Prepare to breastfeed. Most NICU babies receive their nutrients through a tube at first, so you may have to delay breastfeeding—but you can start building up your milk supply right after your baby is born, if you wish to nurse later on. Practicing kangaroo care (snuggling your baby skin to skin) and pumping at your baby’s bedside can help. When you can’t be with your baby, smelling his pajamas or listening to a recording of his cries can help with letdown. A recent study published in Advances in Neonatal Care showed that NICU mothers who pumped while listening to a guided relaxation recording and looking at their baby’s photos were able to get double or triple the amount of milk as were the moms in the control group.
Help older siblings cope. Explain to your other children why their new sibling must stay in the hospital. Carve out time each day to spend with them so they don’t get lost in the shuffle. And don’t forget to seek out support resources for them too. Our hospital’s child-life specialist gave my 3-year-old daughter a tour of the NICU (including the all-important toy/book cart), a real hospital mask and other goodies for her play doctor kit, and a book that explained why our baby’s heart needed fixing.
Accept help from others. Websites like mealtrain.com and lotsahelpinghands.com can help organize the efforts of friends and family members. Don’t be shy about asking for other favors beyond meals, whether it’s a sleepover for an older sibling or help with a few loads of laundry. If you’ve had a C-section, keep in mind that you won’t be able to drive for awhile, so you’ll need rides to and from the hospital.
Feel free to set boundaries. The NICU will have its own visitation rules, but don’t be afraid to set your own more stringent standards. Do you feel comfortable with anyone other than you or your spouse holding the baby? It’s okay to say no, even to grandparents. Once you leave the hospital, don’t feel bad about limiting visitors at home and reminding everyone (especially children) not to touch your baby’s hands or feet.
Create a home away from home. If it’s not against hospital policy, put family photos on or around your little one’s incubator, bring in a small lovey or colorful swaddling blanket, and dress your baby in those cute outfits from your baby shower (snap-up pajamas work best around all those wires). “The monitors, beeps, and bells are hard to ignore, but try to,” Date says. Even better: Ask if you can turn off the noisy bedside screens, as nurses also monitor babies at a central location. Although it might not be the nursery you imagined for your newborn, remember that it’s only temporary. And when it’s finally time to bring out the car seat and put on your little one’s going-home outfit, the homecoming will be that much sweeter.