When your baby ends up in the NICU, the world can feel like it’s been turned up-side-down. All your normal daily routines are disrupted and set aside. Nothing outside these unit doors seems to matter as much as the life and death battle that is going on inside. But soon you realize that life is going on out there, and there are still things you need to take care of. Your job is to figure out how to find a balance between your desire to be with your baby in the NICU and the responsibilities you still have at home and work.
Finding a balance between NICU and home is hard, but you are not alone. We talked to families who have been there, and here’s how they dealt with this dilemma.
Let People Help You
People want to help, but they often don’t know what to do. There are not going to be many times in your life when you will need the help as much as you need it now. So when people come to you and say, “Please let me know if there’s anything I can do,” take them up on their offers. Ask them to walk your dog, cook a meal, pick up your groceries or take your spot in the carpool. Asking for help is hard, but learning how to accept help will make things a lot easier.
Simplify Your Finances and Your Life
A NICU stay can have a real impact on your finances. You may need to take time away from work. Not to mention the hidden costs of a NICU stay: gas to and from the hospital, parking permits, food. Then there’s the question of how much your baby’s care is going to cost you. Know that there are resources available to help you and your family. If you need help navigating insurance – or the lack of it – there are people who can assist you. Start with your NICU social worker.
In addition to all the new costs, you still have to manage everyday household expenses. Consider getting direct deposit for your paychecks. Set up automatic payments on your utilities, car payments and other regular bills. Load up the children’s lunch account at school. And if you can, keep your gas tank full and some cash handy. Being prepared will lower your stress level.
Remind yourself that this is a temporary situation. Until then, be patient with yourself.
“It’s okay to just to do the essentials, especially when your child is in the NICU,” says Blaine Carr, PhD, licensed psychologist and father of a 35-weeker. “Focus on the things that really matter – regular meals, keeping a roof over your family’s head, finding time to sleep and rest, the travel schedule to the NICU, breast milk pumping, and communicating with friends and family. You have plenty on your plate – so be gentle with yourself. Don’t let dishes in the sink or a late charge on a credit card bill add to the worry. Keep your perspective on the things and the people in your life that need your attention at this moment. Other things can wait.”
Choose a Spokesperson
While your friends and loved ones want updates, it is nearly impossible to keep everyone informed on your own. It can be physically and emotionally exhausting to share the same news over and over again – especially when there has been a setback.
Pick someone you trust to become the family spokesperson. Keep them informed and ask them to take charge of updating everyone else. Many families find it useful to start a blog, create a webpage, or even start a private Facebook group. Hand to Hold likes CareFlash because besides allowing you to share news and photographs, it also has a tool for setting up a care calendar where people can volunteer to help out.
Nothing is as hard as leaving your child’s bedside. While spending time by the bedside matters, being in the NICU every available hour of your day may not be the best thing for you or your baby. Take time to eat well, exercise, and get some sleep. Find quiet times and places to be alone and regroup. Allow yourself and your loved ones “NICU-Free Time,” where you talk about things other than your babies’ medical needs. Rest assured that even when you’re not in the NICU, your presence is felt. And you can always call if you need updates.
Be with Your Family
No matter where you are – at the NICU or at home – you’re going to feel like you are neglecting someone. Keeping a normal routine isn’t always realistic, especially if you have other children, but it can help. Siblings need reassurance. Tell them that even though things are hard right now, you are still thinking of them and they can count on you. Let them know that you are not the only one who cares for them. Friends and family can provide comfort and diversion while you are away.
Be with Your Partner
Prioritizing time with your partner is essential. Find a few moments to be together, even if it’s just a quick snack between pumping sessions. Be affectionate with each other and remember that the little things mean a lot. Above all, be patient with one another.
You and your partner are in this together, despite how difficult it is. You’re each going to have bad days, and they will sometimes be the same day. Be mindful of that and be compassionate with each other. And finally, try to find the humor in small things. A little laughter will keep you sane.
Find Your Strengths and Set Your Limits
You may discover that you have different strengths. Take advantage of this.
Amy, mom to Ella who spent time in the NICU, says, “I was exhausted by the unending schedule of going back and forth between the hospital and home, not to mention the unending breast pumping schedule and daily emotional overload. I was committed to pumping because it was the one thing I could do – the one thing I could control to care for my baby while she was in the hospital learning to breathe on her own. My husband flew into action settling medical bill snafus, sanitizing pumping equipment, securing breast milk storage equipment, and finding special bolsters to hold our baby’s head correctly in her car seat so we could safely transport her home. Looking back on this time in our lives – it is clear to me that we each had our roles – and doing those helped keep us sane.”
Often we are hardest on ourselves. You can’t do everything, and you shouldn’t expect to. That said, be prepared. People may judge you and say hurtful things. They might think you are being overly protective or you’re not being careful enough. They will question what you do and how you do it. Find the strength to set boundaries and speak up for yourself and your family. Repeat this handy phrase, “Thanks for caring and for the advice. These are hard decisions, and we’ve given them a lot of thought. I’m sure you can appreciate that and honor our decision.”
Finally, Love Each Other
Don’t forget to celebrate! You have a beautiful new baby. Get to know each other. Love each other. And we look forward to seeing you on the other side of those NICU doors!