Hand to Hold's Official Blog: Written by Parents for Parents

Returning to Work During a NICU Stay

Preemie in isolette

Leaving my critically ill premature baby to return to work was incredibly difficult.

I wish I could say that I was the NICU mom who spent every day in the hospital with my baby. Even after 3 years, I am still working through the guilt I have for returning to work just 8 days after my daughter was born. The reality for our family is that both my husband and I need to work in order to make ends meet. When I suddenly ended up on hospitalized bed rest during my 20th week of pregnancy we quickly became concerned about how we would get by. Fortunately, thanks to technology, I was able to set up work remotely from the hospital which allowed me to get some things done during those long days spent on the prenatal floor. It was in no way ideal for me to not be in the office, but it worked for a few weeks.

When Isabella was born at 23 weeks gestation, it was clear that there was potential for a lengthy NICU stay. As if the NICU isn’t stressful enough, we had the added challenge of balancing finances and maintaining an income.  I worried incessantly about our daughter, and for brief moments in between, I wondered how we were going to manage financially. When I was discharged from the hospital, I had already missed an entire month of work. I was lucky in so many ways. My employers were more than understanding and went above and beyond to accommodate my needs during this very unpredictable and scary time. However, I knew that what we had worked out could not be maintained for an indefinite amount of time. I knew I needed to get back to work.

Balancing work, NICU, pumping, and maintaining a household was daunting at times. It took some practice to figure out the best schedule. I was able to work fewer hours, coming in late and leaving early. Fortunately, the hospital was between my home and work, and so it became my routine to stop at the hospital for an hour or two on my way to work. I was thankful that I was encouraged to call the NICU at any time. Checking in with Isabella’s nurse during my work day always made me feel a bit better.  After work, I was able to visit with Isabella for much longer before finally heading home to get some rest. Day after day I repeated the motions, all the while wondering if I was doing the right thing.

As much as it broke my heart to leave the hospital, work did give me a reprieve from the terrifying rollercoaster in the NICU.  My work environment is the complete opposite of the NICU. It’s predictable, even mundane at times, problems are solved quickly and easily, and there is a gentle rhythm to the day.  I now understand that working was a way for me to cope with my situation. I was emotionally crippled by my daughter’s early birth and I found it difficult to spend all my hours at the hospital. But my work, well I could handle that.

Today, my daughter asks me if I stayed with her at the hospital. She’s three. She asks a million questions. But this question makes me cry. How do I let go of my guilt and cut myself some slack? I did the best I could. I try and remind myself how blessed I am. But nothing seems to break down the final remaining bricks in my wall of guilt. I’m pretty certain that this is the part of my NICU journey that may take the longest to heal. Thankfully, I have more and more moments of reprieve from the guilt.  I’ve come to understand that every family that experiences the NICU does so in their own unique way.  Some parents return to work and that is just fine.

Rachel Pasquale About Rachel Pasquale

Rachel Pasquale (ME) is the mother to Isabella, her only child, born at 23 weeks, weighing 1 pound 6 ounces. After 107 days in the NICU she and her husband welcomed home a healthy baby. Despite being well supported during her entire journey, Rachel felt a profound sense of isolation, often feeling that those around her did not truly understand what she was going through. Her desire to help herself and others feel less lonely navigating the NICU led her to Preemie Babies 101. In addition to contributing to this website, Rachel is a member of the NICU Family Advisory Council at the hospital her daughter once called home. You can contact her through Facebook or via email.

Comments

  1. I returned to work 2 weeks after my twins were born at 28 weeks. It was so hard manage home/work and twins in the NICU plus the hospital was over an hour away. I called the NICU 3 times a day!! Somehow, my husband and I managed. I feel like we are always running low on energy and time but somehow with the grace if God it has made us into better people. People that can take on anything (well almost!!).

  2. I went back to work about 2 weeks after my twins were born at 29 weeks…..also with the hospital over an hour away. My decision was part financial and part not wanting to “waste” my 12 weeks. I wanted it for when they came home. It was a LONG 9 weeks while they were in the NICU, after an 8 hour work day we would jump in the car, drive and hour, spend about 2 hours with the kids and then head home to go to bed and do it all over again. It really sucked in the moment but I wouldn’t trade one minute of the 10 weeks I was home with them after they were released.

  3. I went back to work after 6 weeks due to recovering from a c-section. We had lost one of our twins so going back to work was a bit of getting on with life, but it took until after the NICU stay to really start the grieving process. My employer and NICU allowed me to work while I was in the NICU. It allowed me to spend 4-6 hours in the morning and several hours again in the evening. Most of the time I was on auto pilot and had no clue what we were going to eat for meals, but we got through it. Going to work during the NICU stay allowed me to spend 3 months at home with our child. That time was more critical than the time he was in the hospital, it was RSV season when he came home.

  4. I went back to work part-time a week after my son was born, as well. I knew I only had the 6 weeks of maternity leave, and I wanted to have something when he came home. My employer was also wonderful, allowing me to work half-time for 12 weeks instead of being off for 6, and that allowed me to manage the pump/work/NICU schedule. Keeping busy definitely kept me saner than if I’d been sitting at his bedside every day watching him sleep. I felt like you — I knew how to do my work, so I did that. It’s true — everyone copes differently.

  5. I went back to work 6 weeks after my 23 week twins were born, and one of my twins passed away after about 2 weeks of life. For me I found it extremely difficult to go back to work and try to focus, but once I did I found work became an escape from reality. Fortunately we lived close to the NICU and I conducted home visits so I would go to the NICU twice a day everyday, once in the early afternoon, and once at night to do the nightly “weigh in”. I always felt guilty when I wasn’t at the NICU, mostly out of fear because I already lost one baby and wanted to know every detail to ensure the life of my surviving twin. My co-workers were so very kind and donated time in order for me to do a maternity leave when my son came home after a 130 day NICU stay. I think no matter if your working or just home because its time to sleep, the guilt of not being with them is there regardless. It’s another piece we carry with us being a parent of a preemie.
    -Very nice article Rachel, thank you for sharing and allowing us to share.

  6. You are so right about the guilt…I think most of us carry it no matter how we managed our NICU stay

  7. You should tell your daughter you were there for her. That’s not a lie. I’m sure you never mentally left her at all.
    At 3 years old its all she needs to know. Don’t be so hard on your self. It’s just being a mom!

  8. I went back to work on the 3rd week after having my 29 weeker from a c-section. I only got to have so many weeks off after labor, therefore I wanted to save as many days as possible for the time when the baby came home. Oh boy, did it hurt like no other still. I might not have that great pain tolerance. Trying to function like it was just another day was so difficult. So many have experienced the same thing… work, go to see the baby, go home, sleep and do those things all over again the next day. We only got to spend about an hour or so at the NICU every night. I missed my baby like crazy during the day. Leaving the NICU was painful during those days. I would spend hours and hours in the NICU over the weekends. Guilt is definitely there. I feel that guilt even to this day. I still have to work and my preemie is at someone else’s home. However, I feel that we are all super women one way or another. We made it through the tough times. Though we have to work, we can spoil our little one as much as we want when we get home and our babies know that we love them no matter what. I think we just need to keep that perfect brightness of hope.

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