“Workers’ Voices” is a series on A Better Balance’s blog highlighting the firsthand experiences of workers from across the country. For some workers we are in touch with, they are covered by federal, state, or local workplace protections that make a world of difference in their ability to care for themselves and their loved ones. For others, their experiences highlight the glaring gaps that remain in our laws.
The below is a story from Angelina, a Community Advocate with A Better Balance who works in healthcare in New York.
My son has been in the NICU for sixteen weeks now. It’s exhausting, stressful, and scary.
Having my child in the NICU is like having multiple full time jobs. I have to commute for an hour to the hospital, stay there for several hours, then commute back. I chose to give birth at this hospital because it’s a good hospital, but at the time I didn’t think I’d have to commute back and forth there every day. It’s one thing to do that kind of commute for a job. It’s even harder when you’re going to the hospital every day to see your medically fragile child, while you’re sleep deprived, and pumping, and recovering from birth. I had not realized that pumping was another full time job until I did the math – you have to do it eight times a day, for about 45 minutes each time (including set up, clean up, etc).
On top of that, I couldn’t drive immediately postpartum. Thankfully, my dad was able to help. At the time I physically couldn’t take public transit. I had a c-section, and normally people are supposed to take it easy in bed to recover. But I was going back to the NICU the very next day.
I have to be there for my son. There’s that drive to be present for your children as a mother, but also, being there is developmentally crucial. It’s neurodevelopmentally important for the child to have their parent there by their bedside. It’s not just something we do because it feels good emotionally – that aspect is important, but on top of that, studies show that it benefits the child to have the parent involved, even while they’re in an incubator. There are long term consequences of having only procedural touch by various changing people and no comfort touch. For my child to grow up to be a healthy, contributing member of society, I want to do everything I can, and part of that is being present with him in the NICU.
“I could only hold my son once a day for the first 3 months of his life. Nothing about this experience is parental bonding time; it’s pure survival.”
And that presence is so fraught with high stress and anxiety. There is a strict time structure in the NICU. I have to get there at specific 3-hour intervals to be able to be involved with his care and see his face without the breathing devices attached. I have to factor this in with my commute time, pumping time, and finding time to eat — because you can’t eat at bedside. The mental load of this is easy to underestimate, which I myself did. I was constantly questioning why I am so utterly exhausted, and I have come to appreciate how much I really am doing. For the first few months, I spent the entire time there with bated breath, watching my baby through a box and the monitor for problems with his heart or breathing. Skin to skin, which is beneficial for weight gain, increased immunity, positive brain growth and development, among other things, can only happen once a day until the baby meets specific milestones — which took 3 months for us. I could only hold my son once a day for the first 3 months of his life. Nothing about this experience is parental bonding time; it’s pure survival.
It’s emotionally exhausting. On top of going to the NICU to hear updates, I am constantly waiting for phone calls. Every time an unknown number calls, I have to pick up — because what if I don’t, and then I miss an important call? I wouldn’t be able to keep working through all of this. I would be worried the entire time that I was at work. How would I be able to focus if my heart and my mind are still in the NICU? I really considered going back to work, because it’s hard to make ends meet when you’re out for that long, but I realized that I am just getting by as it is. There simply is no energy or time left for my actual full time job. And it would be unbearable to add a third place to be when I’m already so torn between two places: wanting to be with my son as much as possible, and having a toddler and the rest of my life at home.
There is an emotional and psychological burden of having to worry about my job and when to return to work on top of everything else. Even the process of having to navigate the system — figuring out, who do I talk to? How much time off do I have approved? How much sick time do I have saved? My 12 weeks of FMLA leave are up — do I have job security right now? All of those calculations are mental energy that I simply do not have. It was impossible to navigate right after giving birth with my child in the NICU and continues to be significantly stressful every time I have to re-assess my timeline.
Even finding time to call HR to have those conversations is hard. I’m trying to get to the NICU on time for his care, holding him for the entire 2 hours it takes for his tube feed to run (because moving him during would be a risk for him), pumping every 3 hours, and running to catch the bus to get home to my toddler. I can’t call HR while I’m juggling all that. Plus, there are rules against talking on the phone while in the NICU.
Many NICU parents feel like they never know when it’s going to end. Everyone asks, “When is your son going to come home? When will you be able to return to work?” There’s no answer. It’s this gut-wrenching waiting game to see when he will progress enough to come home. It’s constantly two steps forward then one step back. There are all these metaphors: it’s a roller coaster, it’s a marathon. Things can change so fast, and you can’t really plan ahead. It’s already agonizing to wait for when I can finally be home with my child to have the normal motherhood experience. Then I have to add in the stress of worrying about how to keep my job and have time at home to take care of my newborn. Parents like me shouldn’t be forced to worry about their job security during a time like this. It would make such a huge difference to have my job protected during this time.