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.



Author: rfclews

I'm just another mum trying to figure all of this out, with the added bonus of getting to start extra early, and well and truly on the back foot!

3 thoughts on “Talking.”

  1. Amen to EBP. Anecdotal medicine has its place but isn’t for beautiful former 24 weekers who deserve the world’s best. You’ll catch me on the other side of the world biting my tongue reading some of those comments.

    Liked by 1 person

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