‘Tis the season.

It’s almost April?!!! Don’t even ask me how that happened. It’s lovely though, the leaves are changing, the nights are cooler, and the sky has that pale blue to it that hints of those sunny winter days. It’s Autumn, which means that winter is coming. To most people winter is the snow season, the soup season, the scarf season. For parents of premature infants winter is the RSV season and a few mums have asked for some help in explaining to others just what this means. So here you go.
Respiratory Syncytial Virus. Or more simply Really Serious Virus.
I’ve talked a lot about germs, hand hygiene and keeping our kids safe from illness. But we have been home from hospital a while right? He’s big and sturdy and looks so happy and healthy right? Absolutely. On the outside. 

The things you can’t see are on the inside, as his lungs continue to work really hard to grow new healthy tissue to replace all the chronic lung diseased tissue that fills his chest. 

Statistically if we can get our little man through his first winter relatively unscathed, and if we can avoid RSV then his long term respiratory outlook is remarkably improved. Like, astoundingly. 

As a paediatric nurse I work with little babies with RSV every single day. I monitor them as they struggle to breathe and I put tubes down their throats because they can’t eat and breathe at the same time. I hold masks over their faces to administer inhalers, nebulisers, and oxygen. I hit the emergency bell for more help when I see that this kid is about to stop breathing. From a cold. A normal, everyday, run of the mill cold. 

RSV gives an adult a congested nose for a few days, a chesty cough if they are unlucky. To diseased lungs RSV can be a death sentence. 

If that description isn’t enough here’s a visual of the lung tissue of a term baby and the lung tissue of a premature baby. Imagine a little mucous getting into huge adult lung? Then imagine it getting into a term baby’s lungs, blocking it 2/3 of the way up and making it pretty hard to breathe. Then imagine that in a preemies lung tissue, there’s no breathing room. 

  
Image: http://www.preemiebabies101.com

Now it’s hard for us, as parents, to say please, don’t come inside. Because we feel rude, antisocial, and over protective. But as we all head into winter I ask you to bear with us, and understand that if we can get through this winter, then we can breathe a little more easily. In every way! 
So if you’ve got a friend or family member with a premature baby that’s heading into its first or second winter, please consider the lungs and the terror of the ICU. Because that’s where they will go. Please stay away if you or anyone in your family is sick, especially young children. And please remember that it’s only a couple of months. Then we will all emerge bright eyed and bushy tailed ready for springtime adventures! 

  

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You just keep breathing. 

If you’ve lost someone you know that it never gets easier. The sadness, the missing them, the dreams of going back in time and somehow making it not so. Somehow we just get better at managing to get through the day. And then the weeks, the months, and eventually years. To the point where most days you’re doing okay, you’re happy, living your life, and you still feel it, but it’s not as all consuming. And then the days come along that you’ve set aside to just let yourself feel. I think it’s really important to do this, and perhaps it’s because I’m such a planner, but I like knowing I have some time set aside in which I can wallow, cry, and just downright miss them like mad. Today, March 22nd, it’s 9 years since my dad passed away. A lifetime ago, and a minute ago all in one. I sat and cried a little while I pumped today, and then took my little boy and went to the cemetery. My dad’s not there, he’s in the mountains in the south island, but my Yaya is there, and so we ground ourselves by her and think about everyone who is wherever she is, with her. 

I miss my dad something fierce, his deep voice, the way I could hear him as he would shake the duvet cover every morning when he made the bed, the way he would enter the kitchen at 0655 and turn on the radio and the news would start and the day would begin, the sound of his leather jacket squeaking as he drove the car, and the feeling of his 5-O’clock shadow on my cheek. 

I miss him, but I can think about him, feel the sadness and happiness and breathe. 

Losing a child is something else. 

It’s still raw now, I know this. It will potentially progress in the way it did for my dad, and I’ll manage a bit better each day, perhaps. But honestly. I don’t think so. I won’t ever stop and think about it and feel the sadness and the happiness. There’s no happiness in it. No happy memories, there are barely even memories sometimes. I’m a new, sad person. Which is why, in an odd way that enables me to function in the day, I don’t let myself stop and think about him too often, apart from the hundreds of times throughout each day that he’s in my head. I know that probably makes no sense but I don’t stop thinking of him, ever, while at the same time I don’t stop and think of him. Because I wouldn’t start again. I would lie on the ground, push my nose into the earth and ask her to swallow me up. 

Don’t get me wrong, my life is full of happiness; of living, breathing miracles and hours of pure joy. It just runs alongside an aching river of sad (stupid, stupid small word). 

Breathing through the sad. That’s all anyone can do. Breathe the happiness in. 

As the clock ticks over into a new day, I’m breathing through the sadness and welcoming in the happiness that the next two days brings. 

It doesn’t get easier, you just keep breathing. 

  

A milestone for mum. 

I use the term ‘normal mums’ a lot, and I’m beginning to hate it because it doesn’t sound good and I feel bad for using it. I’m just not sure of another way to put it though. The mums who go to play groups and hang out with toddlers, the ones who are out and about and just feed their kids. I love my ‘normal mum’ friends as they show me the goodness that’s out there, while also showing me that that’s bloody hard work too. It’s a world I don’t know, and I’m sad about that. But I guess I’m also privileged to be in this other world because I’ve met some pretty amazing people.Today, with one of my Nicu besties we had what we could only call our first, real, long, normal mum morning. I came home with a lightness in my heart that I haven’t felt in a long time. I felt like we could do this. That although we are still well and truly in the tunnel and sometimes it doesn’t feel like there’s a light at the end, I have realised there are some lights along the way. 

We went to a playgroup. A preemie playgroup run by therapists, but a playgroup nonetheless. We sat with a few other mums, and our babies played and babbled, and we talked and listened. Then, when all the kids were on their way to hysterical with tiredness we walked up to a cafe for a coffee while our boys chilled in their prams. 

We went to playgroup and then out for coffee. How normal can you get??? 

It was a mission getting out of the house like it is for any parent. Reshuffling of feed times, sacrificed sleep, and a bag full of tubie equipment. But we did it and it was so unbelievably worth it, because while we were at playgroup our boys became the BIGGEST show offs! 

We work extremely hard encouraging Oliver’s development because we know how high the risk is for him to be delayed. We give him every opportunity, complete every exercise the physio recommends, we push him probably a little too hard at times but today he simply shone. 

I put him down on that mat with his friends and he sat there. He just sat there. All by himself. 

Thank you Oliver for being my superhero buddy on a normal mum day. This is a shout out to every parent who made it out of the house today, I know how hard it is, but damn it feels good once you’ve done it.