December 7, 2015. A little qualitative research.

Thrown into this nicu life, the most horrific experience, a hideous hideous reality, and somehow you make friends. Not just friends that you say hi to in the corridor, though there are a few of those, but friends that you tell your biggest fears to, that you let yourself cry with and friends that one day you realise have become life friends. The kind that you will always talk to, because we now have this messed up bond that has us knitted together forever.

I’ve made a little group of these friends.
They are the ones I contact in the middle of the night when I’m pumping, or in the middle of the day when I’m panicking. It’s not because we don’t need our other friends, the ones we had before, it’s because we know that there’s nothing to explain when we talk, or not talk. We can say one word and we know.

I was talking to one of these friends yesterday about being home, and she said that one of the hardest things about being home was how hard it was for people to understand that she’s changed.
We wear the clothes we used to wear, our hair is tied the same, when we speak it’s the same voice that comes out. But inside there’s someone who wasn’t there before.

So I spread the net a little wider this time and asked the Nicu mums around me for some help to try to explain how prematurity totally alters your entire being. You’re all thinking, thank goodness, we don’t just have to hear what you think for once!! 😊 That was precisely my aim, but after talking with them all, I’ve realised that it’s changed us all in almost exactly the same ways.

It’s a testament to these ladies strength that every single one of them threw out the positives first. Talk about glass half full!
(Yes a LIST!!!! Pretty happy about this).

Patience. Literally number one for everyone. We have learnt that nothing happens fast, but it’s worth the wait. That in hospital, as in life we had to do a LOT of hurry up and wait. We are patient with our babies as they learn how to be in a world that their bodies were not ready for. As we wait for them to reach milestones, to put on a gram of weight, to eat a little more, sleep a little less, we are patient. We are patient with our family and friends as they struggle to understand and support us, patient when they disappoint us and patient when we disappoint them. We are patient with the medical team as they ponder and ponder what to do and we go days without a decision or progress as they study and research until they can help find us the most evidence based way to go. We are patient with strangers and sometimes even people we know, as they say things that hurt, we know it comes from being even more out of their depth than we are. And we are patient with ourselves, as we ride the waves and sometimes try to throw ourselves under.

Gratitude. We are so crazy eternally grateful for the tiniest things. We are so happy that you haven’t had to go through this, any of you. But sitting beside your baby and watching him completely and utterly fail to breathe, watching her become slower and sleepier and bluer, watching your dreams teeter frighteningly close to the edge makes you grateful for life in a way that no one can understand. We are happy for a breath, a gram, a millilitre. We don’t care anymore when things happen, we just hope they will happen. We don’t care that everything else is a mess because yesterday our baby pooped on his own without any medication, without any assistance, without any prompting. He just pooped. We have all sat on the floor and sobbed because something happened that everyone else takes for granted. We no longer take a second for granted.

Trust. Your. Gut. These words work together and separately.
We trust our gut, and we speak up now. To anyone and everyone. If it doesn’t feel right, we say it. Because we know now. We know ourselves and we know our child. We have watched them grow in a way that no one else will ever know. It’s so wrong yet so beautiful to watch some floppy skin on your babies head slowly grow cartilage and form itself into an ear that will welcome the sounds of the world in. In this way we have learnt more about our child than anyone can imagine. So we speak for them. We trust ourselves, we trust others, and we trust our babies.
It’s strengthened us all in a way that is hard to explain, especially when we spend a LOT of time crying so it must seem like any strength we had must have all been used up. But before this we didn’t know what we could handle, what we could get up and walk into each day, and now we do. Throw something at us, we will cry, but we will still be going long after you thought we would have given up. You don’t thanklessly express milk for 7 months without gaining a little resilience.

We are better people than we were, on the whole. But we are also changed in ways that have made us harder, meaner, and although they all started with the positives, each and every one of these amazing women had a heartbreaking piece to share about how prematurity has changed them into someone they never wanted to be.

Guilt. I’ve talked about guilt before, as a parent in general we are wracked with guilt about every little thing. But some words really dug this in for me as these ladies let me into their darkness. Loathing. We have a hatred of ourselves that not even we can fully explain. That no matter what we do we can’t protect our children and keep them safe. Not from the daily things like bullying and crossing the road. But from death. Before they had even taken one breath our children had passed so close to another place that it doesn’t matter how much we love them, it’s not that, that brought them back. So we are overcome by this guilt all day every day, even after discharge, because your Nicu journey sure as hell doesn’t end when you go home. This is something we will own for the rest of our days, and something we are all trying to bury a little deeper.

Us. And them.
This seems to me to be one of the more difficult ones because it’s completely out of our control when it pops up, and it is only ever relieved by hashing it out with another Nicu mum. Before I start, all of us want to say sorry. We are happy for you. Truly. Truly. We do NOT want to take your happiness away. We do NOT want anyone else in this nasty club, we love you so much, and as cliche as it sounds, it is actually not about you, it’s about us.
We are green. With envy. Jealousy. Sadness. And on a bad day a little bit of resentment. For your big pregnant belly, for your nesting, for your big full term healthy fat baby, for your breastfeeding, for your trips out of the house with your baby, for your house full of visitors, for your coffee groups and play groups, for the day you say ‘let’s have another baby’ and you just do. We missed out, it all got stolen away. And for a lot of us I think we won’t get it back, the terror of having to do it again and the hard, hard work that continues is more than enough to ensure a lot of Nicu graduates are only children. Another little keepsake that we work hard to bury down.

I talked to these mums and wrote this all out as another way to offer you an insight into this world. But also as a way to tell others that we know what you feel. We get it. We see you.
You’re not ‘you’ anymore, but you’re a new you, and you’re still trying to figure out who that is and how she (and he dads!) fits in to this world.

Which is why I’m going to end with this. Word for word from one of the most amazing mums I’ve met. As much as I’ve blabbed on for what now looks like a novel (sorrynotsorry) she says absolutely all of it in three sentences.

“I don’t know how to express myself to the people who love me and I just want to curl up in my own little space with my children and shelter them from the world.
It doesn’t stop when you leave. The heartache is continuous”.

Superheroes are real. They are these little babies.