When the NICU Journey Never Seems to End

Leaving the hospital without your preemie is hard enough. Facing an uncertain future is doubly hard. Many of us are told that we shouldn’t expect to bring our preemies home until they’ve reached their due dates. Some of us are pleasantly surprised to bring our babies home before that ballpark discharge day. But other parents of preemies find that the NICU journey lasts much longer than they or anyone else could have anticipated it would. In a few cases it’s obvious from the start that a preemie will have a longer-than-average NICU stay but many preemies remain hospitalized well beyond their due dates unexpectedly.

Whether you’re planning for a long NICU stay or not, it’s really difficult to cope with the realities of having a baby in the NICU for longer than a few weeks or months. Not only are you dealing with daily ups and downs your preemie is facing; you’re also dealing with a bunch of practical issues, too. The commute to and from the NICU. Planning visits around other obligations. Returning to work. Caring for older children. Keeping house. And then there’s the potential financial drain. The parking garage, meals on the go, and other expenses can add up!

The potential for burn out is high when your preemie’s NICU stay is longer than average. Here’s how to avoid it:

• Remember that your preemie is being well cared for and this isn’t a race. They’re exactly where they need to be at this moment. Don’t give in to frustration, but instead look at your preemie being in the NICU as a positive thing. Your homecoming day will come soon enough!
• Practice reasonable self care. Chances are you’re not going to take up meditation or yoga any time soon. Caring for yourself when your preemie is in the NICU means doing things like remembering to eat, prioritizing sleep, and accepting help from others when it’s offered.
• Think of quality time, not the quantity of time. Having to go back to work while your preemie is still in the hospital can be traumatic because you feel like you should spend every waking moment at their side. Do what you can to make the time you can spend in the NICU feel special. Read your favorite books to your preemie. Tell them about your day while you practice kangaroo care. Let your preemie’s care team know when you can be there so they include you in feeds, etc.
• Get to know your fellow NICU parents. You’ll feel less discouraged seeing other preemies go home before yours if you care for those families and can celebrate their homecomings along with them.
• Ask the NICU if you can bring in a swing, a bouncy seat, and a Boppy pillow. Older, less fragile preemies who still need the support of the NICU may be awake and alert, and they can benefit from sitting more upright so they can visually explore and interact with the world around them.
• Talk to your preemie’s care team about what kind of enrichment they’re getting. It can feel like time stands still for babies in the NICU but you may be surprised to learn that your preemie is getting occupational therapy, music therapy, massage, and other enriching experiences when you’re not there. And if you find out they’re not, it doesn’t hurt to ask what’s available or what you can do yourself.
• Consider taking a day or even a weekend off. The NICU journey is traumatic for parents and you need time to heal and recover, too. The idea of going away overnight or even out to dinner can seem terrifying. But talk to your preemie’s nurses about it – they will likely offer many reassurances that taking a day off is not just okay, but healthy for parents.
• Pace yourself. Your first impulse as a parent is probably to spend every single moment at the NICU by your preemie’s side but remember, you’ll need energy for your baby’s homecoming, too. Find ways to make your daily routine more efficient, like pumping breast milk in the car on the way to the hospital or commuting to the NICU when traffic is light or prepping dinners for the whole week on Sunday night.
• Ask for help! There’s no shame in asking a good friend or a relative to cut your grass or tidy up your house once a month or to pick up groceries now and then. People will offer to help but won’t know what you need. Tell them!

As much as you want to get the heck out of the NICU and have your preemie at home, you may discover much later into your prematurity journey that you miss some things about the NICU – whether it’s the extra hands or the nurses and doctors who cared for your family. For now, simply love your preemie and be there for them as much as you can while also taking care of yourself so when your homecoming day does come you have the energy and strength you will need to care for your preemie at home.