A Note to NICU me

Boo is teething. It’s awful. He is dribbling through about a vest an hour and waking himself up many times in the night choking on the copious amounts of saliva he’s producing. He’s biting everything in sight (including me), has a fever (I know lots of people say that’s not a teething sign and it never was with Sissyboo, but he has had a temperature of 39 degrees every time one of his 9 teeth has come through so far) and he won’t eat (most unlike him). One tooth popped through this morning; the gum above it looks fit to burst. So hopefully we’re now on the home straight for this bout.

 
It’s made for a pretty difficult couple of days, especially today as I had the kids on my own while The Grumposaur was away. As I sit here hoping Boo’s settling down for the night, I feel completely frazzled from four hours’ sleep and lots of screaming in the day. But then I remember those days in the NICU and SCBU when I would have given a limb and a kidney for these kinds of ‘problems’, annoying and draining though they are.
 
It’s spurred me on to think about what I would go back and tell NICU me if I could. Honestly, I’d need a few hours to do the job properly and I would probably run me a nice bath and give me a bottle of wine to drink while I gave myself the benefit of my considerable and immodest wisdom. But in essence, I would tell myself just a few things…
 
1) It will get better. The pain, the guilt, the trauma never entirely go away and these devils will rear their ugly little heads when you least expect it, but things will never be as raw again. You will get home. You will feel happier than you ever thought possible.
 
2) You are not a pain in the arse for asking questions or phoning the NICU in the middle of the night if you want to. (I only did the latter once on the night we thought Boo might die but I wanted to phone every night around 2am and stupidly felt I shouldn’t trouble the unit.) It’s your right to be concerned about your child’s welfare and to make consultants answer questions they want to skirt. Some may think you’re a pest, but most you won’t ever see again so who cares, and some will even respect you for it. 
 
3) Trust your instincts. You might not always be right but you owe it to yourself and to your child to follow through on your feelings. You will be right when it counts (like when they threaten to re-ventilate Boo and you just know it’s a gastric not a lung problem). It took a lot of guts to stand your ground on this but you did. He wasn’t re-ventilated. You should have felt able to speak up more often.
 
4) Don’t give in to the pressures of others to share more than you want to or to call every day if you don’t feel able to. It’s a cliche to say there are no rule books for these situations, but you need to set rules for how people can expect you to interact with them during this time. You will answer every text, phone call and email as if you were at work. You’re not and it will make everything harder for you. You could have made life easier for yourself. People would have got it. And if they didn’t, they probably weren’t worrying about.
 
5) You are stronger than you ever knew you could be. You will not be part of one of the happily ever after NICU stories you cling to. You know (almost instinctively) months before it becomes all too apparent that this will be the case. Life will be hard and never the same again. But you know what? You will deal with it, not just because you have to but because your new normal, your newly configured, beautiful, maddening and hilarious family will motivate you to do things you never thought you would and to be a better person. You won’t always get it right, of course, but no one can ever accuse you of not trying. And if they do, don’t ever bother to speak to them again.
 
6) You will smile and laugh every day after you leave the NICU even on a few days the horrors of which can only be described by the worst kind of expletives. And you won’t smile and laugh once or twice a day. You will do it a lot.
 
7) You are not alone. No one’s situation is exactly like yours, of course, but you will learn to reach out to others in the real and virtual world in a way you never quite could but should have tried harder to do in the NICU. You will start a blog. And the people you meet through that blog, in similar but importantly different ways from the many friends who have buoyed you up for the last 16 months, will sustain you, help, advise and be kind to you in ways that will make anything good and worth having seem possible.
 
Things will be OK, you know. One day you will be seriously annoyed by a couple of nights broken sleep because your son is teething. And then you’ll remember how far you’ve all come.
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7 thoughts on “A Note to NICU me

  1. Jennifer

    Each word you wrote sounds like me talking to myself. There have been good and bad days both during and since the NICU and you sum them up well. Congratulations on Boo! My daughter Joy was born at 23 weeks last year. Due to modern medicine and prayers she is doing great today. I hemorrhaged at 17 weeks for the first of 4 times because of 100% placenta previa, which turned into placenta accreta (which I believe was caused by 3 prior c-sections). After she came home from 121 days in the NICU, I wrote a memoir called “From Hope To Joy” about my life-threatening pregnancy and my daughter’s 4 months in the NICU (with my 3 young sons at home), which will be published in the beginning of August. It was quite a roller coaster that I am certain some of you have been on or are currently riding on. My goal of writing our memoir is to give a realistic look at what lies ahead to families with preemies in the NICU while showing them that hope can turn into Joy and that miracles can happen.
    Please let me know if this is the appropriate place to post some messages about our memoir and please offer any suggestions as to what else I can do to spread my message. I appreciate any and all advice.
    Please see my website:
    http://www.fromhopetojoy.com
    and subscribe.
    http://www.twitter.com/jenniferdegl
    http://www.facebook.com/jenniferdegl
    http://www.youtube.com/fromhopetojoy

    Thank you and good luck with your journey and your blog.

    Reply
  2. Pinkoddy

    What an absolutely beautiful and honest post. You have both come so far.
    Thank you very much not only for writing it and giving hope to others who may find themselves in this situation, but by connecting up such a special piece at Motivational Monday x

    Reply
  3. Actually Mummy...

    That post gave me goosebumps 🙂 We are all terrified in the first days after the birth of our first child. We all wonder how we will ever cope, or enjoy normal pursuits again. So I can’t imagine what an insurmountable challenge it must have seemed to you. I hope someone in that situation finds their way to this post and can gain some hope from it.

    Reply
  4. Wry Mummy

    What a brilliant post. All of your advice is so important, trusting your instincts and protecting yourself and your time by not feeling you have to respond to everyone’s contact is fundamental. Congratulations on your lovely family. X

    Reply

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