What is the right thing to say?

As some as you may have seen via my Instagram account in the past few days, I have been asking everyone to tell me what comments they have found comforting during their NICU, and which comments they wish had been left unsaid. Thank you to everyone for contributing – it has been truly eye-opening.

Having a baby in the NICU, isn’t something that everyone is familiar with. And I think, the lack of knowledge or experience with it can result in our nearest and dearest finding it difficult to articulate words of support. More often than not, people do mean well. But, to a parent in the NICU, or even those who have been discharged, such comments can have a negative effect. 

Let’s start with the positives!

I have to admit, I definitely received more of the “worst comments” than I did the “best comments.” But it was reassuring to know that some of you were comforted by the words from your loved ones during such a difficult time. Here are some examples of the positive comments:

  • “When you’re ready, I’m here.”
  • “When sick babies turn a corner, they often get better quickly. So, look after yourself to be ready.”
  • “You’re so strong and will make your Son proud.”
  • “Ring anytime! Being encouraged to call the unit whenever.”
  • “He is running his own race; he will get there when is ready.”

These are the kind of comments that I wish all of you had received during your NICU stay. As I have talked about before, the NICU can have negative effects on parents’ mental health, and hearing comments such as the ones above, I’m sure they would have provided me with a lot of comfort during a really challenging time. And they’re comments that I will be banking for the future too.

Oh, the negatives!

I have to be honest; I was actually gobsmacked to read some of the negative comments that you all received. Some of them really were shocking. I received so many DM’s from you reacting in disbelief at some of them as well. So, it was good to see that we were all on the page! Here are just a handful of the examples:

  • “It’s not like you have to take care of her, you’re really lucky the nurses do it all.”
  • “Maybe next time, you can be more careful to avoid the NICU.”
  • “Now when baby is home somone told me to ‘get over it’ and ‘get on with it’”
  • “At least there’s nothing wrong with his brain.”
  • “When will you know if he has problems?”

Now, I like to say that people mean well. And I’m sure that deep down, these comments weren’t made to come across in the way that perhaps they did. But it does not always translate does it? Not that I’m excusing some of these comments – they really are something awful. It genuinely makes me so sad that some of you were subjected hearing them during what I can only assume, may have been the toughest times of your lives. 

Personally, I feel that because of the lack of awareness of the NICU in general, I think that this correlates to the lack of understanding of what it means to be in there with your baby, and how it can make you feel, short and long term. I guess, if people don’t have an understanding of it, how can we expect them to know what the right thing to say is? The NICU is a totally alien concept to some people.

Your Advice for future NICU Parents.

I could not finish this blog on a negative footing. And so, I asked you all for your advice for future parents, as after all, a few of you commented that the best comments came from Parents who had already been through the NICU. So, who better to ask for advice than fellow NICU parents! Here are some of the pieces of advice that you sent in:

  • “Take it one day at a time.”
  • “Be kind to yourself, rest when you can, eat when you can and celebrate every little milestone.”
  • “Ask to be involved – the nurses will show you how to change a nappy and dress baby etc.”
  • “Don’t be too hard on yourself – this is a tough journey, but you will get through it.”
  • “Give yourself time to let your true emotions out because they will come out eventually.”

I wish these were things I knew about when we were in the NICU with T. I’m adamant, they would have made a difference. I was quite shy with the nurses to begin with, I wish I had asked to be involved more in the beginning as it would have done me the world of good, but it was better late than never.

Self-care – I know I mention this quite a bit but it’s something to be taken seriously. It is so easy to forget that you need to take care of yourself, and your partner, because neither of you will be of any use to your baby if you’re not looking after yourself properly. Take yourself home earlier than normal one evening, have that long bath and catch up on something on Netflix. It is allowed. It doesn’t mean you don’t care about your baby – it’s as much for their benefit as it is yours.

Be patient with yourself. Allow yourself to feel the emotions that you do – don’t hide from them. You’re allowed to be sad, angry, or frustrated – to name but a few! It can be, a total emotional rollercoaster at times, and that is ok. It’s ok not to be ok!

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