Have you had the experience of having a baby who began life in the NICU?  Have you wondered how to balance your professional obligations with the needs of your premature or medically fragile baby?

Today, I’m honored to share with you a guest post by an amazing mama, Amialya (Mia) Durairaj, who has been there.  Here is Mia’s incredibly helpful advice on navigating these extremely difficult challenges.

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Returning to work after a baby is born is challenging enough. But going back to work when your baby is a patient in the neonatal intensive care unit (NICU)? Well, that is a whole other enchilada.

Take it from me. A year ago, my husband and I moved across the country to California to start our new family. Twenty-four hours after arriving, my world fell apart when I gave birth to my twins three months early. My husband began a new job six days later. And, eight weeks later, with my heart split between two isolettes, I chose to return to work.

Will you be returning to work while your baby is in the NICU? Maybe you are one of the more than half of American women who do not have access to unpaid maternity leave. Or perhaps you ran out of maternity leave. Or you want to save some of your paternity leave for when your baby gets discharged. You may rely on your employer’s’ health insurance.

For others of you, the routine of working might be the only thing that keeps you from teetering off the abyss.

Whatever your reason, I’ve created a roadmap for NICU working parents to help you navigate this crisis without losing your cool:

Accept that you will feel guilty

Parental guilt is a thing for all parents, but the NICU has a way of ratcheting it up to a new level. Try to make peace with the fact that you can’t be in two places at the same time. I won’t tell you not to wrestle with guilt, but do try to remember that you are doing the best you can. I suspect that this statement bears repeating: you are doing the best you can.

Rest on your laurels

Are you the kind of person who works hard and goes above and beyond to meet deadlines? Awesome. Now is the time to stop being that person. Call in every favor. Cease volunteering for challenging projects with tight deadlines. For a little while at least, you get a pass. So coast!

(Don’t worry, you can go back to being an ideal employee again in a few weeks or months.)

Find flexibility

Not every job will allow this of course, but this is an excellent time to ask your boss for some wiggle room. Can you telework from the bedside? Is it possible to start work later, so you can make it for early morning rounds? Can you use your lunch break to go to the hospital? If possible, coordinate schedules with a significant other or family member so that your baby will get more quality time with loved ones.

Communicate with NICU staff on your terms

You have the right to call your baby’s nurse 24/7 for an update. Most working parents cannot make it to morning rounds when the medical team makes the majority of medical decisions. In this case, I recommend that you ask your child’s attending neonatologist or nurse practitioner to discuss their plans with you at a more convenient time. By being proactive and staying informed, you will be in better control of your baby’s care.

Outsource liberally

Who has time to cook and do chores during a crisis? If you can, outsource these activities to either a paid professional or the family members and friends who keep asking what they can do to help. Ask a family member to take care of your dog for a month. Pay a professional to do laundry. Eat out. Alternatively, you can resign yourself to living in a messy house with an empty refrigerator for a short time.

Set boundaries at work

I recommend you set boundaries early on returning to work to establish some professional distance. You do not owe your colleagues updates. Even if you are an open-book type of person, it may be better to limit your circle of confidence at work to one person you can trust.

On my first day back, I wrote an email to my coworkers requesting that they kindly refrain from asking about my twins’ status so that I could focus on my job. And guess what? Everyone took the hint. It helped me retain some semblance of professionalism during a rough time.

Haters are going to hate

Sometimes Taylor Swift lyrics contain pearls of wisdom. Colleagues, family members, and hospital staff may disapprove of your choice to work. Sometimes they will say things that range from the slightly clueless to the deeply hurtful.

It is unfair, but I found that many healthcare professionals tended to assume that moms would or should be at their baby’s bedside 24/7.

I once ran into a surgeon who was visibly annoyed because I was not in one of my twins’ room on the two random times when he had stopped by to update me. (Did he ever wonder where my husband was at 9:38am? Very unlikely.) In this instance, I found it useful to say, “Had you notified me that you were coming, I certainly would have been there. However, I was working so that I could keep my health insurance to pay for all of this.” After that conversation, the surgeon seemed to evolve out of his 1950s attitudes. The next time he had something to discuss, he called.

Try to be present

If you can, welcome the wonderful distraction that is work. Problems in the NICU can feel intractable. And work can give you a sense of competency that you may feel you are otherwise missing.

But when you are visiting your baby, try not to take work calls. Don’t check your work email. Be there as much as you can. Engage with your baby when he or she is awake in the ways that are appropriate for her or his gestational age. When the baby is napping, talk with your child’s providers to soak up their knowledge.

In the end, it is not how many hours a day you spend in the NICU. It’s about how you make every hour count.

Are you a parent of a special needs child who wants to balance both a career and a family life?  If so, have created a 4-week online course just for you. More details about the course and registration information is located at www.mindfulreturn.com/specialneeds.

Amialya (Mia) Durairaj, MSc is a freelance health and nutrition writer based in San Diego, CA. She has two identical twin daughters born at 28 weeks gestation, one of whom has a congenital heart defect. Spending a year in the hospital was tough, so now she feels compelled to help families with special needs babies navigate their medical journeys. You can learn more about what she does at LittleOctopus.org.