Setting Boundaries in the NICU and at Home

April 5, 2021

Setting boundaries along our micro preemie journey was about encouraging physical, developmental, and emotional health, for all of us.

setting boundaries in the NICU and at home, NICU family, hand to hold

We began setting boundaries prior to the birth of our micro preemies at 28 weeks, 5 days. It started while we tried to get pregnant and continued while I was on hospitalized bed rest. But we really began in earnest on our twins’ birth day – mobilizing to do everything in our power to protect our fragile kiddos, even when so little was under our control. Each step of the way, we also recognized that every family’s choices are different, based on a dizzying array of circumstances including, but not limited to: employment, other children, household and intergenerational family dynamics, structural racism, number of adults in and supporting the household, preference, care options, geography, fatigue, ability, mental health.

For us, the decision tree involved some of these questions: What do we know? What don’t we know? What do the specialists know? What don’t they know? What level of uncertainty or risk (that’s within our control) are we comfortable with? Why?

Decision fatigue is real. It happens in the NICU, it’s happening as you encounter the world with many intersecting identities, and it’s happening for everyone as we face COVID-19. Other people’s best, if poorly-executed, intentions are real. Exhaustion is real. Frustration is real. The unknown is real.

It is unbelievably grueling to weigh every possibility and eventuality. So we went the “blanket” route. We made a blanket decision for the way we were in the world. We constantly did our best to ask questions and consider as much information as possible in medical and developmental decisions. Yet, we also chose not to constantly weigh other daily decisions about what we’d do and in what way.

Boundaries in the NICU

Time in the NICU was about finding our footing (though I’m not sure we ever truly did). It was largely focused on one basic premise – survival for them, and for us. As such, we took an aggressive route. And in truth, both NICUs we were in helped with that. They had strict rules about who could visit and who could not, including how they could visit and when.

We welcomed healthy adults to visit and be with us. We saw other families allowing visitors to hold their children, but that was not for us. We were barely allowed to hold them or touch them ourselves for so long that the idea of others doing that seemed, quite frankly, preposterous and risky. This also allowed the boundary to be more easily kept. There were no case-by-case decisions about who could or could not interact with them. It wasn’t based on someone’s insistence, or long travel time, or effort, or whatever else. The daily circumstances didn’t matter.

Boundaries At Home

One of the things we did miss about the NICU – besides the expertise of the care team – was the strict and protective environment imposed by someone else! It was harder to create that at home, and when these became “our” decisions, it certainly turned more heads. But I am confident that these decisions were a large part (in addition to sheer luck!) of why our former micro preemies had a relatively healthy first year. When we ventured out after that one year period of quarantine we encountered many more medical challenges than we had in the first year. We have seen that again now. Diligent isolation during COVID-19 has perhaps given us the healthiest year, medically-speaking, since that first year home from NICU. Blanket boundary setting has again been key.

Once home, we allowed immediate family and medical and development care folks (e.g. child care, early intervention, visiting nurses) to physically interact with the babies. But in that first year, we did not allow any other adults to hold them. We did invite healthy adults to visit at home, but not kids (we didn’t have any other children). We never took them to anyone else’s house or a store. They only went to the doctor or did solo outside activities. And while early intervention started pretty soon after their arrival home, they didn’t go into the early intervention center until they had turned one.

Anyone who was coming over – plumber, family, care folks – were always reminded that if they felt unwell in any way, they should come another time. On walks we covered them in thin, breathable blankets to help keep inquiring eyes and hands away. Tiny babies – and especially twins – bring a lot of interest, and as well-meaning as it might have been, it wasn’t helpful to them. It was hard not to enjoy them in this way, being especially proud of kiddos who had already survived so much. But then again, we reminded ourselves, it’s exactly because of their challenging start that we’re moving through the world in this way.

Of course we were tempted to do this one thing or bend to this or that suggestion or question. But in the end, we held fast and reminded ourselves of why we were going to all the trouble. It can be a slippery slope.

Emotional Boundaries

Looking back, I realize that our earnest attempt to do our best for our babies also made it look like we were fine, when we weren’t.  It’s a delicate balance. Our boundaries were an important part of sticking to what we had decided to do and not being swayed by the opinions or desires of others. Yet, the need for connection – to be seen, to be understood, and to be supported – is also essential. Self-imposed isolation, as truly necessary to survival as it may be, makes survival, and certainly thriving, incredibly hard. Yet, I don’t look back and think about doing things differently. I realize I didn’t know how.

It wasn’t easy, but we don’t regret that first year of clear and consistent boundaries, despite the work it took to keep ourselves going and connected.

Remember, you are one of the most important experts. Hold steady. Listen to what your journey is telling you, and reach out for support. You can craft what makes the most sense for you.


support group for parents of medically complex children hand to holdVirtual support groups allow families to access support at all stages of the NICU journey, from the comfort of your own home. Join today!