Tomorrow is Friday. 

This day last year we were in the South Island, just finishing up the Kepler track and then hitchhiking to spend New Year’s Eve with a group of friends. We had been trying to get pregnant for 8 months. Felt like 8 years, as each month went by and we were disappointed. Rationally you know for some it takes a while, but that doesn’t stop you feeling sad, feeling like the thing you’ve waited your whole life for just won’t happen. Little did we know we had two little miracles already growing. 365 days later and the world is a different place. The people are the same, except one little person is missing. Our faces are the same except there’s some rings under the eyes and some sadness in the smiles.

You never know what a year will throw at you. No one could have predicted this (though as events unfolded and we look back there were definitely a fair few signs…I hate signs).
We were people who ate, drank, ran, worked, talked, laughed, spent hours with our friends and families, walked all over the country, up hills, across rivers, through snow. We baked, biked, basked in sunlight. We made plans, got excited, struggled with the everyday, we cried sometimes and we loved.

Then we got hit by a hurricane, an earthquake, a tsunami (different to a poonami!!). Now we struggle with the everyday, every day. We cry a lot.

But the other stuff? We still do it. Or will do it. The world ended. But it kept going.

Tomorrow is 2016, but it’s also Friday.

It’s new. But it’s the same.

Life is what happens to you when you’re busy making other plans (Allan Saunders). So no New Years resolutions from us. Just a little list of things we learnt this year, because if we can’t find something to take with us into the next part of life then all we did this year was survive. And although it felt like it at times, I know it’s not true.

1. You can cry over spilt milk.

2. It’s okay if people see your boobs. Like, anyone. They’re just boobs.

3. There is NO SUCH THING as too much cake/chocolate/fudge/candy/biscuits/slice/ice-cream etc, etc, on and on. Life’s too short and shit. Eat.

4. Walking outside with a pram is the bomb-diggity (and helps you feel less guilty about all of number 3!).

5. If you’re going to have a baby, don’t renovate your house (you’ve already started haven’t you? Rookie).

6. Your friends and family will forgive you if you stop talking to them for a while. They will forgive you when you choose to find comfort outside of them. They will forgive you for everything. Because they are your people.

7. People are dicks. Not all of them. But lots of them.

8. Roll your eyes at every single thing people say about having a baby, good or bad. Then be ready to unroll them when you find out they are right. You do survive without sleep, you do love them more than you can even believe possible, they are complete miracles of bloody hard work.

9. If you have to say goodbye to your dreams you will never be the same. It’s okay not to like the fact that other people got to keep theirs, whatever they are. It doesn’t mean you don’t love them. Forgive yourself. Find someone to be your hate buddy and let rip.

10. Think long and hard about that swaddle people. There is No. Going. Back. Once. You. Start.

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Fed is best 

Although it sometimes takes a really long time to accept this.
Because it’s natural to breast feed (as natural as something can be when almost every single woman who pops out a kid struggles day in and day out with it…) and to want to breastfeed. And then when that doesn’t work and you’ve cried your tears dry over it countless times, you accept that bottle feeding may be the way you’ve gotta go to help your kid grow. Then when that doesn’t work and you’ve gone through the same process of grief and despair, you accept that perhaps having a tube is the way your baby needs to get nutrition to grow big and strong. Not many people end up at this stage, as much as it’s a huge part of hospital life it’s actually an extreme minority. Thankfully.

But when you do get to this stage, and you’ve been through the previous two, for some reason you keep going back to them. There’s something inside you that says you’re lazy and haven’t tried hard enough and that’s why you’ve got the tube.

We headed towards stage four last week, switching our nasogastric tube out for a longer one that heads on back into his jejunum. We understood their rationale, he wasn’t happy with the NG, he was throwing up, we were next to his bed the full hour of the feed, plus most of the hour after that comforting him and trying to catch the spew, we were bone tired, nights consist of two 30 minute sleeps and two 2 hour sleeps. Which in total is 5 so that seems pretty good to me, but 5 in a row is a different thing to 5 in four separate blocks. So they proposed the NJ as a break for all three of us. Just for a short time, then try again with gastric feeding.

Like a lot of you will have experienced, in the appointment I’m all like yeah, absolutely, seems like the best way to go, totally agree with you. Then you get home and you hash it out and you think about last time he had an NJ, and how far away that is from orally feeding, and after a couple of days (had to wait for the radiology appointment for insertion of said NJ) you’re thinking nope, bad idea, what’s the point, we gain nothing except some sleep, and that just seems lazy, stop being lazy. So we declined.

Battle on we said.

So naturally, because I’m a mum and love to punish myself and make myself feel guilty (who’s with me??!!). I then went back to step 1 and 2 and thought why the hell aren’t we working on this????

Cue three feeds of a bottle attempt resulting in a child who won’t take bottle or dummy, and a mum who thinks she totally ruined EVERYTHING because if he won’t take a dummy we are literally screwed, that’s the only way to comfort him while a tube feed runs through. Follow this with an evening of “we will NEVER feed orally, he’s gonna be walking around university with a silastic tube taped to his face!!!”. I can see it now, his mates will think he’s so awesome, I can do a yardy no trouble, just whack it down the tube bro….

Sometimes you need an external voice of reason.

To say, stop.

Is he growing? Is he developing? Is he happy otherwise?

Yes. (Said like a true sulky 7 year old).

Then at the moment that’s all that is important.

Let him smile, and play, and reach for things, and roll, and start to giggle. Let him grow, grow, grow. And with growth comes strength, and with strength comes learning, and with learning comes feeding. Hopefully.

And I guess in the grand scheme of things hope is all we can do.

We can offer him the chance to try, and I do, a once per day small breast feed, but we ensure he gets the full volumes down the tube because grams is what we want !!!

What do we want??? GRAMS!

When do we want them??? NOW!!

I guarantee you this doesn’t mean I won’t fall off the proverbial wagon and head back a few steps in a desperate attempt to not feel like a failure as a mother. Even today I caught myself saying that I might just offer him a breastfeed a couple more times in a day, just to see if that will encourage him. And I’ll do it. And no doubt it’ll be a disaster and he will get frustrated and I’ll get disappointed and I’ll need someone to run me through the ‘is he growing’ pep talk again.
But right now it’s 2311hrs, his 2200 feed is almost finished running through the pump and he will continue to sleep from now until 0530, because he doesn’t wake to eat. And as abnormal and miserable as this is, because we would give up everything we had for a kid who would eat, it does mean that he is growing. He is, for 10-12 hours every night, solidly growing.
Breast fed, bottle fed, tube fed = fed.
So punish yourselves mums, but then say sorry. Breathe. Look at the growth. Dream of oral feeding. Then go and set up the pump.

And get that kid up one centile.

Every centile is one step closer. To what, I don’t know, but it’s gotta be good.

You can do it.

An open letter to NICU mums. 

I wrote a little thank you to a couple of my closest friends from our time up there. And as I wrote it out I realised it could be for anyone. So I wanted to say a big thank you to every NICU mum out there in the big wide world. 
Thank you.

Thank you for being each other’s friends. 

Thank you for being the people we literally always vent with. 

Thank you for understanding. 

Thank you for bitching and moaning. 

Thank you for loving our miracle children, even when you may have never met them. 

Thank you for sharing yours. 

Thank you for making an altogether unbearable year that little bit more bearable. 

Thank you for helping each other keep expressing. (Side note, anyone see Santa while they were up tonight? Bet that’s the highlight of his night, all the mums with their boobs out!!).

Thank you for being shoulders for each other to cry on.

Thank you for showing each other the ropes.

Thank you for not talking.

Thank you for talking. 

Thank you for liking and disliking the same nurses and doctors as we did. 

Thank you for not comparing our miracle babies.

Thank you for being envious but still always happy for us when things went well. 

Thank you for putting our expressing equipment together for us when our hands shook too much. 

Thank you for only comparing our milk production in your head.

But thank you for understanding when we said it out loud. 

Thank you for the middle of the night, being there, awake. 

Thank you for all the times that we walked by each other in the corridor and for speaking when it was a time for it, and walking past when it wasn’t. 

Thank you for all the swearing. 

If I was a wish on a star for Christmas type person I’d wish for you all and your families to have a 2016 full of milestone hitting, full of normality, (but not too normal), full of smiles and love and I would wish that it was a year 100 million times better than this one. I would wish for you to have no reasons to cry. And wish for you to be able to leave a little bit of the heartbreak back in 2015. Lock it away in that year and throw away the key. 

Keep talking to each other. 

Especially now, as we roll into a new year and we all have a liiiiittle panic about that. 

Thank you NICU mums. 

All of you. 

Happy (?) Christmas, 

From a NICU mum. 

  

It’s 24 hours, do it your way. 

It’s Christmas Eve here at the bottom of the Southern Hemisphere. It’s warm. There’s sunshine intermittently between light white clouds. A little whisper of a breeze, and not all that much humidity right now (thankfully). Sitting at the breast pump for my 15 minute ‘rest’ time while I express, ‘planning’ the day, in so far as mums plan days that never, ever go remotely to plan. I have a compulsive need to have the house clean and tidy for tomorrow. Why? No idea. No one is coming. Oliver has no idea. 

But it’s my way of coping. Of grabbing control of something when the rest of 2015 has felt completely out of our control. If I have the washing done, the floor clean, the equipment sterilised, then I totally owned that day (Oliver being fed and warm and happy also of course, like all babies he seems to know when mum wants to get things done, sleep? Nice try mum!).

This Christmas will be strange. It’s a happy time of year, full of family and friends and food (!!! Coming back to that). But we have a huge hole in our family left by a tiny person. There will be countless other families out there this Christmas who are just that little bit keen to go to sleep on the 24th and wake up on the 26th. Skip the day that’s so obviously not what you want it to be. 

Preemies sleep a lot, but there’s no way in hell they would sleep for 24hrs to help us out…! So somehow we’ve all gotta get through. 

For many the comfort that they would normally seek from their big groups of family and friends they have to stay separate from, too many of those big bugs. So we’re stuck in our homes, trying not to wallow. 

Many people have said to me to find the things that comfort you and focus on them, and a number of them have referred to the casts we have of Charlie, as a way to feel close to him. We have them framed on the windowsill next to our bed and as of Monday after an amazing anonymous delivery in the mail we have little remembrance Angels made with our little boy’s feet that we can hang on the (figurative) Christmas tree.  

And I will look at these. I known I will. But I think for a day I might try a little harder not to look at them. Because I don’t want his feet on Christmas Day snuggled with us in bed for a cuddle before we get up. I want his whole tiny body breathing and smiling and living. So I turned to another comfort this morning. 

Food.

Before my dad passed away Christmas lunch at our house consisted of 1,500 different types of meat, roasted on the barbecue. 

My Yaya would make a huge spanakopita, baklava, dolmades (the rice/grape leaf kind. Not to be confused with dolmades, the rice/capsicum kind or dolmades, the meat/cabbage kind). We would have special Greek Christmas bread that for some reason Yaya only ever made 15 loaves of, since then we have attempted smaller batches none to quite the same level of awesomeness as her bread (so maybe that’s why?). As most people do, we would eat until we couldn’t move and then play some sort of family board game, most favourite for many years being articulate!!

This year there’s a long list of things that there’s not:

No dad. No Yaya. No bread (we made our quarter batch two weeks ago to eat with my brother before he went off galavanting through Asia). No brother. We are renovating (as most Nicu families are!!) so there’s no stovetop. No time (how do mums cook???? Seriously). 

I find it easy to see all the things that are missing, to feel all the hard, lost moments. To sit next to my little boy and think that this Christmas is nothing at all what I wanted it to be. 
And people will tell you to think of the positive things, be grateful for all that you do have. And I get that, I do. 

But to be honest, in my opinion however you want to get through this day is the right way. If you want to write all those crazy positive things in vivid on your freshly painted walls, go for it! You want to eat the whole Christmas cake before you get out of the car at your lunch destination, do it! You want to take your favourite part of the meal and spread the crumbs of it all through your bed while you hide under the duvet and cry, screw anyone who tells you that you can’t. 

Me? I’m going to get my little boy to bed tonight (by 1930???? We can only hope, so probably by 2230 if we’re realistic) and then I’m going to make my Yaya’s spanakopita as it’s the least time consuming dish (because this is sleep time I’ll be cutting into here) and tomorrow I’m going to cuddle Oliver (try and take him off me, I dare you…), I’m going to eat the biggest piece of pie I possibly can, smile for an hour or so and then head under the duvet. I plan to emerge sometime in the evening for a second helping of pie. 

No one knows what it’s like. No one knows how it feels. So the right way to grieve it? You’re way. Whatever that may be. 

Yaya’s Spanakopita

1 large onion

2 large bunches of fresh spinach

Olive oil

Puff pastry (store bought obviously, ain’t nobody got time for that)

Humongous bunch of fresh dill (the dill maketh the pie)

200g fresh feta 

Salt and pepper

1 large egg (+extra to glaze the pastry, or butter; mmmmm butter)

Wilt spinach in a small amount of water until soft and flaccid (chose that word on purpose, try and tell me you didn’t smile a little). Drain.

Sauté onions in Olive oil until soft and translucent.

Add spinach to the onions and sauté until the liquid has evaporated.

Add piles and piles of chopped dill!!

Transfer to a cold bowl and allow to cool slightly. 

Add the beaten egg and mix to combine. Season.

Add the feta, I always use the whole block because, well, because.

Roll pastry slightly thinner and line a baking dish, roughly 30x20cm, fill with the spinach/feta mixture and top with pastry (buttery buttery pastry goodness!).

Using a pastry brush spread beaten egg or melted butter over the top of the pie.

Bake at 200 degrees Celsius for 35-45 minutes depending on your oven. 

Let it rest!!!!! Important or it’ll flop all over your plate (no one likes floppy pie, 😊). Then cut yourself the biggest piece you can and eat the whole pie. Xx

P.S. Couldn’t find a picture of said pie…here’s the next best things. 

   
15 lovely loaves rising a few years ago… ❤️

  
Dolmades, the rice/grape leaf kind. That was a good year. 💙

 

Talking.

Before I get started I’m just going to leave these here for you to mull over…

Empathy: the ability to understand and share the feelings of another.
Sympathy: feeling of pity or sorrow for someone else’s misfortune.
Opinion: a view or judgement formed about something not necessarily based on fact or knowledge.
Evidence based practice (EBP): integrating clinical expertise with the best available external clinical evidence from systematic research.

I enjoyed the collaborative effort so much last time that I’ve tried to do it again, but this time I asked a bunch of preemie parents if there was anything particular they wanted to have talked about, so now I’ve got a few topics up my sleeve!!

So today we are going to talk about talking.

There are a lot of moments in life when someone tells you something and you just don’t know what to say. You know there aren’t any words that will make any of it better, there’s literally nothing you can say, but for some reason we all have to say something.
So we know we do it, we say “it’ll be okay” or “everything happens for a reason” or “I’m sure this will make you so much stronger”, as our advice to them that they don’t need to be sad, or to struggle.
And when you’ve been on the receiving end of these sentences, which I’m sure almost every one of you has at some stage, you kinda want to punch that person in the face?

Maybe just me…

And I think it comes down to the fact that we say these things in an attempt to make that person feel better but really the only person who feels remotely better afterwards is the person who said it because they can walk away knowing they were there for that person, they made a difference.

This is multiplied tenfold when you have a baby, as every man and his dog knows what’s normal and abnormal and what you should and shouldn’t be doing and when you’re struggling there’s a pile of ‘helpful’ phrases that get thrown around.
And then I think it’s multiplied another tenfold again when you have a preemie as everybody else is so completely out of their depth with it all that the only things left to say are the things that are probably better just left unsaid.

There were some particulars that were brought up by more than one parent, so those are the ones I’m going to focus on today. And I want to stress, we’re not ‘having a go’ at anyone. We’re also not upset that people have said these things, because we know it’s coming from a place of caring, of just wanting to help in some way. I think as parents of preemies we just want you to know that although we know where you’re coming from, sometimes after these interactions we feel a little tired.

He/she’s looking really good!

Thank you. We think he’s looking good too. But I think we are talking about different things. As the parents we think he’s looking pretty cute, he’s also looking pretty good compared to where he’s come from. But there’s this unspoken half of that sentence “he’s looking really good, why do you keep saying it’s hard, or he’s not?”. Because often you’ve seen him in a good moment, the one where we decide, yup, we can go outside of the house right this minute. Or you’ve seen him not being fed, or you’ve seen him right now and he’s happy and smiling which is amazing, we know this. But there’s a feeling of being belittled because we know there’s a lot of hard work and tension under the surface of him looking good. The side of it that you don’t see, because we don’t want you to, but that doesn’t mean that it’s not there.
There’s another way this sentence ends, “he’s looking good though, he’ll be okay though right?”. Yes. He will be okay. Not tomorrow, or the next day, maybe not next month, but eventually we will have this oxygen off, or this tube out of his nose. But then we wait for all the other unknowns, the developments physical and psychological, and we have to survive until then. We have to do the hard work and the long hours and the constant reminders that this isn’t how we wanted any of our parenting to be.
Remind us that our kids are miracles, that they are beating all the odds and are the everyday superheroes, we love to hear that. But please understand that when we don’t jump on board with your exclamations it’s only because we are still trudging through the hard yakka.

Have you tried this?

I’m going to liken this one to the first trimester of pregnancy, when you’re neck deep in spew and you think you’re never going to make it out of this alive, and someone says “have you tried dry crackers dear?”.
NO! I haven’t tried bloody dry crackers, or small sips of water, or going for a walk or breathing or ginger or ANY of the things that could possibly take this misery away. NO I haven’t tried any of them because I’d rather just suffer here.
Of course I’ve freaking tried them!!!!!
I’ve tried them all over and over and I don’t find you asking me if I have particularly helpful thank you very much, so leave me with my head in this bowl and maybe leave those ready salted chips here while you’re at it, yup and that ginger beer, just put that down on the table as you leave.

We are intelligent people. We read. We study. We make choices and recommendations. And then our babies have a whole host of other intelligent people doing all the same things for them. They have doctors and nurses, and all manner of specialists who are constantly reading and searching for new evidence on which to base their practice, their choices. Because that’s the thing about medicine, it has to be fully evidence based or there’s no safety, no accountability.
And an evidence base is not 80 people in a little study which declares that eight glasses of red wine a day make you live longer (though we would love that!), it’s 80,000 people in a randomised control trial that concludes with results of clinical significance. So as much as we appreciate your desire to help, to find a cure for our situation, whatever it may be, you’ll forgive us if we don’t embrace your ideas with open arms when you suggest we try giving our baby red wine because a study you found on the internet said babies who drink red wine will feed better than babies who drink white wine. Because it’s not only often a ridiculous idea, it also makes us feel like you think we aren’t doing enough for our kids, that we aren’t trying and just leaving it to the ‘professionals’. Well you know what, we trying damn hard, to leave it to the professionals, because 90% of neonatal medicine is sadly trial and error as they are still learning so much, and we would rather that the neonatologists who have been drowning in research for the past 20 years do the trial and error on our kids, not Dr Google.

What we would love is if you could be our baby’s aunty, or uncle, or cousin, or grandparent. Our kids have specialists, they don’t need more of them, what they need is friends and relatives to spoil them and cuddle them and talk to their parents about OTHER stuff, like which liquor is on special that week, and how many bottles would we like you to bring when you visit!

That’s normal.

This one is so incredibly hard. Because we want it to be normal, we do! We want people to look at our kids and not wonder about their story because there’s something obviously different. But we also want the world to know its not normal. To know that things that are ‘normal’ to a full term baby don’t mean the same thing in a preemie.
A good hearty cry. Lovely and normal. But not normal if they do it the whole time milk goes into their tummy.
A distended tummy. Perfectly normal to a bolus fed baby. Not normal when it’s distension caused by the inability to expel gas.
Up and down weight gain. If your overall trend is up then absolutely okay in a term baby. In a preemie your trend might be up, but the only thing that is guaranteed to help every issue you may have improve is growth, so extreme weight gain is what we need. A down week? It’s a big deal.

This all runs alongside our struggles to identify our baby’s cues as prem baby or just baby? We don’t know, you don’t know, specialists don’t know. So we just muddle through.
You’re telling us it’s ‘normal’ so we can stop worrying?
We’ve had reason to worry like hell from day one, this is our default setting now.
So when we nod and smile when you say it’s normal, it’s because we are 30% hoping its normal and 70% freaking the fuck out that it’s not (sorrynotsorry for the potty mouth…).

So embrace the empathy, cool it on the sympathy, your opinion is YOUR opinion (and this spiel is MY opinion) and we love EBP.

And after all of this I can guarantee you that sometimes we will be the ones saying something that’s no help to anyone. Because at the end of the day, we’re only human.

Feel free to punch me in the face.

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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.

 

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November 13, 2015. How old is your baby?

Just a regular question that most people ask when they come across a cute, podgy, warm baby.
For nicu mums it’s a hard one.

For a start there are multiple ages to think about. There’s our baby’s chronological age, which is the number of days, weeks or months since our baby was born into this world. And then there is their corrected age which is the number of weeks gestation or weeks past their due date. For the first two years of life development is measured using their corrected age. This means that although Oliver has been alive in the big world for 6 months, he has not met the milestones or developed to the point of a normal 6 month old baby, he will have reached this point when he is 6 months corrected, which in chronological age will be 10 months old. Then, once a preemie reaches two years of age, corrected, we can go back to counting their age chronologically because in general most preemies should have caught up on their milestones by this point.
Confused yet??

The hardest part however is based around how prepared we are to go into our story with whoever has asked us this question. It’s an emotional story, regardless of your journey and some days we are prepared to stop and talk to someone about it all, to take the time and think about it, and some days it’s all a bit too hard and we don’t feel like we are up for it.

And this is where the two ages come in.

If we say he’s 6 months old we are met with “gosh what a tiny baby”!!!
This can hurt a little because we know how very very tiny he used to be, and how very very far he has come.
If we say he’s 2 months old we get “gosh he’s very alert and mobile for a 2 month old” !! And some of us will still get the tiny baby comment, because a lot of preemies are slow growers…and that’s sometimes even harder to hear because we all work so, so hard at feeding.

If you’re in a good head space and can stomach rehashing the last few months then you take a deep breath and say “he’s 2 months corrected, but he’s also 6 months old, this is where he came from….”.
If you’re tired and emotional and not ready for it today you take a deep breath and say “he’s 2 months old…” And leave it at that.

Today Oliver is 6 months old, 2 months corrected. He’s been out in the world for 24 weeks which is the same number of weeks that he was in my tummy. It feels like the time that he was inside me was minuscule, I had barely a moment to feel their kicks and never got to feel them hiccoughing under my skin. Yet it feels like the time he’s been out here has been huge. Life changing.

We are yet to encounter ‘how old is your baby’ and I’m sure some days we’ll manage it well, and others not so much. But nicu mums, I want you to know that your babies don’t mind if you lie, they don’t mind if you use their corrected age so that you can smile and keep walking without diving deep into your story. And on the days that you do feel strong enough to tell it they are there to smile up at you, cuddle you and be the miracle that we all know they are.

 

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November 9, 2015. Balance.

Right back at the start I talked about the idea that when you’re unwell you go to hospital, you get better, they discharge you and you go home and live your life.

And I remember saying that’s not how it is for these preemies, especially a micro preemie, extremely low birth weight, early gestation.

And so here we are, just over one week at home and I have a chance to reflect on the week, and try to offer a little insight into the world of a nicu family after the nicu.

It should feel easy, after months of driving to the hospital and sitting beside your babies and hoping they keep breathing, to be at home with them, because they are well enough to be at home, they must be healthy right?
There’s a point you come to, after living in the nicu for months, that makes you realise you don’t need your baby to be 100% if it means you can take them home. It took me a while to get there but coming home with this NG tube was us saying to them, we have watched and stood back for long enough, it’s time we were parents.

And we have been parents this last week. Not exactly in the way other people are, but in the best way we can. All we have to go on are recommendations from specialists, and our gut instincts.

We are trying to find a balance of medicalised hospital life and ‘normal’ life. There’s medications to remember and therapy to perform, there’s feeds to draw up, pumps to turn on, input/output to monitor, and that ever present anxiety that your baby is becoming unwell (which never, ever eases). While at the same time there’s the desperate desire to do something normal with your baby, to pram walk, play mat, bath, shower, smile, talk, and a need to sometimes put your child’s distress down to just ‘being a baby’.

The days when you can balance it are good, they are happy and a mixture of sick baby and normal baby that is as normal as possible and as normal as we are going to get. But then you get reminded that the normal we are living is not everyone else’s normal. Our baby isn’t crying because he’s a baby, he’s crying because he’s in pain, because he’s had a tube down his throat for 6 months and the reflux has damaged his insides. He’s not making baby snuffles and grunts because he’s quickly filling his pants, he’s writhing and squirming in pain for hours on end trying to get his immature intestinal system to digest some of this milk that keeps getting forced into him like foie gras. He’s not spilling a little milk because he drank a bit too much, he’s violently gagging it up because the door that’s supposed to hold all that milk in has no muscle tone in it, so it can’t do its job.

It feels like this has been our first week at home, struggling to keep milk in his tummy, struggling to comfort him when he screams and struggling to balance the normal.
But I think we have given it our best shot and that week two can only offer a new opportunity to balance it better.

One thing we do know is that we couldn’t have focused the way we have without you all respecting our wishes to be alone. Thank you. For understanding that we needed this time. For understanding that this isn’t over for us. And for continuing to understand, as we head into week two and still might not invite you over.

 

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October 21, 2015. It’s happening.

Make sure you’ve got some time right now, we need to have a talk.

Because something big is about to happen.

It’s good, it’s sad, it’s hard, it’s about time.

Oliver John is coming home.

May 29 2015, Oliver John and Charlie David, 748g and 720g respectively.

155 days later, October 30 2015.
We will put our little boy in his capsule and drive him away from the hospital.
Almost 4000g.
6 weeks corrected, 22 weeks old. 5.5 months.

Chronic lung disease, retinopathy of prematurity, inguinal hernia repair, laser eye surgery, intubation, CPAP, nasal flow, NJ, NG, blood transfusion, albumin transfusion, central line, UVC, iron, sodium, phosphate, calcium, diuretics, antibiotics, calories, weights, fluid, milk, pumps, incubators…

We are leaving pretty much all of this behind. However, we are taking a little bit with us. Our boy may fully breastfeed, but he just can’t do it quickly so we are taking him home with a nasogastric tube so that we can continue to work on the feeding at home. Oliver and his mum and dad are all ready to be home, the staff in the nicu have been amazing, but it’s time for us to leave them, we need to be a family and process some of the last 6 months together.

This is really really exciting. And we know that you will all be so happy for us and be absolutely dying to come and see us and meet this gorgeous boy.

STOP.

We are going to be blunt here and say NO.

Oliver may be a big baby now, and he seems robust and healthy, but the effects of being born at 24 weeks continue for Oliver and he is not a normal 6 week old baby. He has never been out of the artificial air of the nicu, his body is about to get a huge, massive, unbelievable shock.

The immunity that he should have got from me gets transferred in that lovely third trimester that we didn’t get to experience, so the main thing that will give Oliver immunity now is TIME.
– this is why Oliver cannot be around anyone who is remotely sick, or anyone who has been with someone who is sick. He also cannot be around any children of preschool age, as they are often carrying some pretty big bugs with them. Your bugs are too big for him. A common cold can hit Oliver’s diseased lungs extremely hard, he won’t be able to breathe and he’s worked so hard for so long to breathe that this will end up with the hospital, and if he contracts RSV, which is a common winter virus, this could mean ICU, or starship hospital.

His neurological development is slower than full term babies, which means that he gets very easily overwhelmed. If you talk animatedly to him while you touch him on his arms, head, tummy, he can get tired and stressed and he does not know how to respond to the multiple types of stimulation.
– this is why Oliver cannot be held by multiple people, passed around, or stimulated by several things at once, as this has a ripple effect of him sleeping poorly, eating poorly, weight loss, back in hospital.

Oliver is still growing and developing a lot, which means that he needs a LOT of sleep. His feeds are planned so that he can have as much rest and sleep as possible so he can grow to the best he can be. This means that when he is asleep, he needs to be left to sleep, and when it’s time for him to sleep he needs to be allowed to go to sleep.
– this is why there will be times that he won’t be able to see you because if he doesn’t get enough sleep he won’t be able to eat, grow, gain weight, back in hospital.

The common theme here is that there are many, many ways in which Oliver could end up back in hospital.
And this is not back to the nicu.
This is up to the paediatric wards, full of sick kids and their big bugs.
William and I are aiming to do our very best to keep our little boy at home with us. We have spent 5.5 months in hospital, we don’t want one single day more.

Please, please, please understand that every time we say no to you, every time we ask you to wait, we are just trying to protect Oliver so that he can grow up to be a little boy who doesn’t remember all the awful things he had to go through in the hospital.

So here they are, the rules, that will ease up over time but for the first 6 months this is it.

The 10 rules of Oliver’s home:

1. This is not a ‘drop in’ house anymore. If you want to visit you need to text or call us first.
2. If you are sick or your family is sick, please do not visit. Not just deadly sick, a throat tickle, a runny nose, any of it. If in doubt, don’t come.
3. If you are less than 5 years old please do not visit until Oliver is a bit bigger.
4. Please wash your hands when you enter the house.
5. Use sterigel or wash your hands 100 times while you visit. (You think I’m joking).
6. Do not disturb anyone if they are sleeping.
7. If you smoke please do not visit.
8. If Oliver is feeding please do not disturb him.
9. Please wash your hands or sterigel before or after touching Oliver or any of his things.
10. Please take it slow with us, as he’s very precious and we will find it hard to share him.

If you wish to talk to us about any of this please feel free and we will try to explain it further.
But please understand this is our family, and the way we need to operate to keep Oliver healthy and growing.

We ask that nobody request to visit during the first 10 days. Please let us get home and spend some time as a family. Let us soak up the excitement of having Oliver with us and let us breathe through the agony of not having Charlie. Because going home is also a huge step away from the time that we held Charlie, our memories of him and our plans for taking our two little boys home.
Nothing about this homecoming is what we wanted it to be and we need to do it in the way that works for us.

And then, when things feel a little routined and a little settled we will slowly introduce you one by one to the miracle that is Oliver.

October 16, 2015. Tramping.

It’s been 5 months and I haven’t used a tramping metaphor, because I never thought about it. Today when I lost some composure, Oliver’s fantastic Dad explained it in a way that makes perfect sense.
So here we go.

You started walking at 0700 in the morning, it’s 1730 now and you’ve got sore feet, a sore back, sore shoulders, your pack is heavy, your thirsty, hungry, tired and all you want is to sit down.
But you’re not at the hut yet.
There have been so many of these days, I’m over it, I don’t want to walk anymore, why haven’t we reached the hut yet?
We are almost there, we know the hut can’t be that far away, we’ve walked all day, it must be close, but we’re just not sure exactly when we will stumble upon it.
And just when you think it won’t ever arrive, you see the glimmer of the roof against the setting sun, and the path suddenly becomes slightly more formed. You walk over that last hill, or around that final bend and there it is, dry, warm (ish) and waiting for you; a place to sit, to sleep, to have a cup of tea and some instant mashed potatoes (seriously, it’s such good stuff!). The relief is palpable, your feet suddenly say ‘that’s it, I give up!’ Sitting on that wooden porch undoing your laces, it’s the best feeling in the world. It’s the time that you can stop and look, see the mountains, the snow, trees and sky.

All of those steps, those hours of walking are worth it in that moment, away from the world, breathing the crisp air, and knowing that you can just soak this up until morning, there are hours and hours until you have to walk again.

This is the point that we are at now.
We are so close to the end but we don’t quite know how far away it is. It’s the part of this journey that is slow, and hard, and seems never ending, although each little step is slightly closer to the end, the hut, home.

And just like tramping it’s the part of the climb that I always spend a lot of time crying in, it’s gruelling and each step that you take feels like it’s not getting you anywhere.

We developed a big feeding plan this week because both Oliver and his mum were falling apart, hungry and tired and frustrated. We are breastfeeding during the day and alternating bottles and tube feeding overnight, not that he’s overly keen on the bottles. We are adding something called calogen, which is basically just like adding cream to your porridge, in the hope that the extra calories will help him sleep better and therefore feed better. We are also attempting to increase the volume that his stomach can handle, as he’s been so slow to feed his stomach has never had to hold a full feed.
Will we fully breastfeed? Not for a long time. Will the calogen help? Who can say. Will we get rid of this damn nasogastric tube before we go home? Perhaps not.
But we will reach the hut. We will make it home. It may not be October, but it may be. It’s the last push to the hut, we want to stop, give up, but it must be just around the corner, so we keep putting one foot in front of the other. The next feed will be better.

Today we had our 5 month immunisations, so we cuddle. Fully immunised before we breathe the fresh air outside.

5 months old today. 20 weeks. 44/40. 3696g.
One month old.

 

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