This post (too long – I know!) was adapted from a talk given at the CANN conference this week. Thanks to all the families who collaborated with me on this. It was intended to be a Valentine to our wonderful amazing nurses & teachers.
I don’t mean to idealize the NICU – I know it’s a place that families would rather avoid. But I can’t entirely regret spending time there. I would have preferred to spare my children the experience, but I think I’m a better person for it. While it can be a hard and difficult place, it can also be a land of opportunity.
We (the parents) are taken out of our regular lives and put into another context, sometimes for many months. And when that happens, there is opportunity for change. For some families, this might be an opportunity to witness first-hand what loving care looks like. For others, it can be a slow introduction to our own skills as parents that are there, waiting to grow.
Whether the lessons are subtle or overt, they are there, and the teachers are there. You – our nurses – are teachers, and when parents are there with you, day in, day out, we learn from you. When you help us find our confidence, that many of us may have lost when we first entered the NICU, you give us something that will last us a lifetime.
For example, when I first saw my baby, I needed help just to understand what I was seeing. People were telling me I was a mother, but I didn’t feel like one. Machines were keeping her alive because my body had failed her. I was scared to touch her. I was scared about what the future would hold, scared if we’d made the right decision. We had had so many things go wrong already.
But at the same time we were elated. She was alive! The people taking care of her were great! But I wondered – even in the midst of my elation – was this normal? The urge to feel normal again was so strong.
So the first gifts the nurses gave us and the first lessons they taught us were these – they restored our trust. They helped us feel important – like we made a difference to our baby. They helped us see her beauty. One of our first nurses said to us early on, “Have you noticed what elegant hands and feet she has?” And we looked, and we saw them. And they were! I mean, we couldn’t see much else of her because of tape & diapers, and of course she had no bottom – but she did have beautiful hands and feet! I took pictures of them and sent them to family – they were the only pictures I let anyone see for months. Her beautiful hands & feet.
What a gift that was! And so that’s what our nurses did – they helped us see.
Another example would be how nurses taught us about collecting breast milk for our baby. We had received such great support around this from the first moments after her birth. I felt like such an idiot trying to gather those first few drops, but our nurse cheered us on like we’d just won an Olympic event. So weeks later, when we were able to give her this first feed of those first drops of colustrum, we felt amazing. We had been able to do something for her – we were able to be parents. I finally felt capable. And because of the consistent support we got, we ended up in a great place months later – where feeding our baby felt natural and normal and easy.
But how did these nurses teach us? We’re not sitting in a classroom – there are no tests we have to pass. It’s worth thinking for a moment at how adults learn. One of the biggest impediments to adult learning is stress. And that’s certainly something all parents in the NICU feel. But we also feel highly motivated to learn, which is a plus. Research shows that giving adults opportunities to practice in an accepting, non-judgmental atmosphere will help them retain more information. Another interesting tidbit is that while people may have very different learning styles, almost all adults benefit from very practical, hands-on learning activities.
What does that mean in the NICU? It means that when nurses help parents care for their babies – when you help us hold their babies kangaroo care style, when you help us put colustrum in their baby’s mouth, when you show us how to read their baby’s signals, when you help us change a diaper for the first time, you’re not just being kind – although it is profoundly kind. You’re being a teacher.
What else is useful to know about adults and learning? Letting parents know the explicit benefits of what we’re doing will help us learn. Highlighting what’s most important and telling us how this will help our baby or ourselves – that will help us stay focused and learn. You might find at times that parents seem to learn a lot and then stay on a plateau for a while – like we’ve hit a wall. That’s very normal for adults, even not considering the high-stress context of the NICU. Most adults can learn a certain amount of information and then need time to process and take it in before they can move on. So when you’re working with families it helps to keep this in mind – to wait for those moments when we’re ready to learn. It’s like going up a ladder – you pull yourself up, gather yourself, and then go up the next rung.
Another point (easy to say here but hard to do in a busy hospital context) is that it really pays to take time to talk with families to find out what we already know and what we want to know before you engage. Families often have a very good sense of our own boundaries, limits and informational needs – and if we get space to share these, it can save time and prevent harm. If someone doesn’t feel they need to know something, it’ll be challenging to get them to learn it – it’s hard to throw a ball to someone who doesn’t want to catch it.
It’s not easy, of course. We’re asking you to be patient, to tell us the same info again and again until we get it – and then we may complain that people keep telling us the same thing all the time! We don’t necessarily understand your other responsibilities and we can be so focused on our own stories that we may not even be aware that you have them. We’re so busy trying to see into the future that we may not be paying attention to what’s going on in front of our noses. But when you accept us and create an accepting, nonjudgmental atmosphere for us, then we can learn, and we do.
Of course, all of this learning results in many changes in parents – one of which is that we’ll become more active advocates for our children. For some, the word advocacy seems stressful. It’s associated with conflict. But I think the nurses who taught us showed us the power of positive advocacy – of how as parents we can positively engage with other people in our child’s life and work together. There is such a sense of shared interest – we all, parents and medical staff alike, want the best outcomes for our children. So if by empowering parents you’re encouraging them to take interest, to ask questions – even difficult questions – that is a good thing, It’s a good thing in a day-to-day sense, because involved parents improve their children’s outcomes.
But it’s also a good thing because at some point, all families will leave the NICU, and we’re going to need to be advocates for our children in the outside world. Some of our children will have disabilities, and we will need to fight for them. And the children who emerge from the NICU with minor morbidities, as described by Dr. Paige Church, are going to have their own hills to climb, and they’re going to need help from parents who understand positive advocacy.
So by encouraging parents to get involved, ask questions, and speak up, you’re preparing us for life outside the NICU, and you’re giving us a friendly training ground in which to prepare. In our unit our nurses encourage parents to ask to be involved in care, and talk about what to do when parents get told no, and encourage parents to be advocates, because that experience of asking, of being reasonable, of seeking involvement is as valuable as the actual involvement. These are life-long lessons. They start in the NICU. I don’t yet know when they stop.
