Monday, January 13, 2014

Why the Design of a NICU Matters

When M was in the NICU, a nurse told us that the hospital was planning a new building to house a joint children's hospital and NICU. I was surprised because our NICU underwent a renovation not that many years ago. It's beautiful, cheerful, and functional. I was also a little sad to think that I won't always be able to take the kids back to their first home. I know that sounds ridiculous--of course the building won't stay the same! After J was born, I wasn't sure I could ever visit the NICU again, and then after we spent another two months there with M, I was sure I'd never be able to really leave it behind. It was the physical space where I celebrated so many firsts with the kids: first bath, first diaper change, first time to hold them. It's where I learned to breastfeed. It's where I spent hours upon hours sitting beside their glass boxes, waiting for them to grow and come home to me.

Our NICU was fantastic. Not perfect, but fantastic. I have so many glowing opinions of the doctors and nurses, of their capabilities, of all the wonderful work they do there. However, the more I learn about other NICUs, the more I realize that a serious weakness in ours was in how its space is used. It is a city hospital meant to house many babies. The space is maximized to handle babies from across the region. Our babies had bedsides in almost every nook and cranny of the NICU, so I can offer commentary on the upsides and downsides of just about every spot. M moved so many times I lost count.

I've heard of other hospitals where the bedsides are private. Where parents can spend the night on cots next to their baby. Where mothers can breastfeed and sing to their babies without ten other sets of parents in the room overhearing. I wonder how that would have changed our NICU journey. I had a terrible time bonding with J, and for a while, I thought it was me. Only after my experience with M, did I forgive myself a little. How can a mother bond with her baby when she's never alone? Many days, in order to hold my baby skin-to-skin, I had to call ahead to warn the nurse that I was on my way to visit and wanted to do kangaroo care. Assuming all went as planned and we were present at a time when the nurse could get our baby out of the isolette for us, she still had to find and set up curtains--which sometimes were unavailable because they were needed at other bedsides. Even with the curtains for privacy, I could still hear people shuffling around, doctors and nurses and respiratory therapists and other parents. I could hear beeping and dinging from bedsides all around. There was very little privacy and even less peace.

That is no way to spend your first months with your baby.

There was one spot in particular in the NICU that we hated. We had been basking in the relative peace and quiet of a spot we enjoyed on one side of the hallway, when we showed up one day, and our baby wasn't there. M had been moved, and no one had told us. Again. So, we asked a nurse, and she directed us across the hall. And there in a spot barely big enough to accommodate an isolette was M. There wasn't room for both my husband and me to sit next to her bedside. When I did kangaroo care, we had to put the curtains up into the walkway so that people tripped on them every time they tried to squeeze past. We heard every conversation from all of the other five bedsides shoved into the corner with us. We couldn't help it. My husband and I grumbled and complained to each other. We must have had such sour expressions on our faces that the neonatologist who had been present at M's delivery laughed and asked if we were enjoying our new spot. "Not at all," was the answer.

Another area we despised was intended for the babies in the weeks before they went home. Six babies were to a room. Busy nurses often bounced between the rooms, leaving it woefully understaffed in their absence. Sometimes well-baby nurses with the best intentions were sent to cover for a shortage of NICU nurses on that floor, but their care was never as skilled as the NICU nurses. Our babies were not "well babies" and still deserved specialized treatment. With six bassinets, the room wasn't overcrowded, but during times when the NICU was at capacity, babies in isolettes were moved into the room. During one of those times, we ended up in the middle of a row of them, and we were practically at other babies' bedsides. Talk about HIPPA violations! We couldn't help but know everything about our neighbors. And I'm sure they knew much more about us than I would have liked.

That's the spot where I breastfed M for the first time. (And where I shot milk across the room with J, another blog post unto itself). Not ideal at all.

Even though there was no privacy, it was so hard to meet other families in the NICU. We were all scared of HIPPA violations, so we tried to pretend we didn't hear and see everything that happened two feet from us. Thank goodness for the parents' meetings twice a month so that we could sometimes acquaint ourselves with some of these faces we passed everyday. How much better would it have been for us emotionally to have shared a small room with just one or two other families? How much quieter? How much more private? What would it have felt like to return to the same location day after day, week after week, month after month, instead of bouncing around the NICU? There was always a new place with a different set of nurses and a changing group of babies. It had an odd way of putting us on edge, just another way for us to feel out-of-sorts, confused, anxious during an already phenomenally stressful time.

So, as sad as it will be for me to one day say goodbye to the space that housed my babies, I think there must be a better way. I am sure that such a sophisticated NICU could divide its space to better accommodate families. And it does matter. I know a hospital must be designed to provide healthcare in the most efficient way to patients, but an intensive care built for babies must also feel peaceful, private, and comfortable too. Because it will be the place where mothers and fathers learn to care for their babies. A place where babies live for months on end without their parents. A place that will be a home for these babies as they wait for their day to leave.

I hope that whenever the new NICU is built these sorts of concerns are taken into consideration in the planning of it. I would be glad to know all those families coming behind us have a little more peace than we did.

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