Remember to look after you

As #MentalHealthAwarenessWeek shines a light on the fact that our mental health is just as important as our physical health, we wanted to take a look at a topic very close to our hearts at Print My Smile: dealing with the emotional rollercoaster of having a baby who has spent time in the care of a Neonatal Unit. 

PTSD after experiencing life on a Neonatal unit

Whether a baby spends just a day on the Neonatal Unit (NNU) or months on end, there is nothing that prepares you for not holding your baby in your arms after delivery.

There are studies that suggest around 70% of mothers suffer some form of post-traumatic stress following their experiences of having a baby in a Neonatal Intensive Care Unit (NICU) (source: thesmallestthings.org), and yet I was completely unaware of the 'condition' until many months after my premature baby left the hospital. So I wonder why there is so little awareness. 

In my humble opinion, I believe one of the reasons is that becoming a mum comes pre-programmed with a need to care for these lovely (most of the time!) little humans with barely a thought for ourselves. This is multiplied beyond compare when our lovely little human is sick. Their pain is our pain, so there's little room to think about anything else going on in our own minds or bodies when we’re watching the most precious people in our world go up against life itself.   

The thing I recall most from those early days in the NICU is how quickly things can change - and how quickly you adapt to even the most shocking experiences. The first resuscitation, the first blood transfusion, the first suggestion of the dreaded NEC, collapsed lungs and Chronic Lung Disease, a brain bleed, long lines and cannulas all over a tiny body - I found everything hit me like a train the first time, but I so quickly learned to take it in my stride that I barely mentioned what I'd witness each day to anyone outside the confines of the hospital. I'd smile at well-wishers who'd coo over the few pictures I'd share, which showed my baby looking as 'normal' as possible so I didn't shock or upset anyone. All these ways in which I suppressed the awful reality of the experience I now realise were allowing the rot to set in. 

The anxiety of approaching the NICU door and peeping through for a second before opening it, holding my breath, to see if anything was obviously wrong, set a general level of pessimism in so much of my life at that time. I didn't realise it then but when I look back now everything felt under a cloud of constant fear, even when things were going well. I was always waiting for the next time the floor would drop away.

It was more than a year after my baby came out of hospital that I first started to recognise that I might need to spend a little time focussing on me. I remember the moment like it was yesterday (it was actually almost three years ago now!), and I was doing the most mundane things around the house when I literally crumbled to my knees with the most vivid flashback. It came from nowhere. It just completely blindsided me - and it was the turning point I needed to realise that I'd been suppressing many feelings of PTSD. That single episode finally helped me to focus on all of the other things that were dominating more of my life than I could allow them to if I wanted to stay well, physically and emotionally. To give you just a little insight, the most memorable of these were: 

- The crippling anxiety that intensified once I was home and finally in charge of keeping my little person well. I would wake up in the night a couple of times a week and grab my sleeping baby shaking him while shouting wildly at my husband that I needed to save him. Of course this always resulted in my baby, my husband and often my sleeping toddler waking up in a less than happy mood! This went on for months and neither my husband nor I ever questioned it. We just laughed about it in the daytime, and I cried about it silently at night.

- The irrational guilt. Guilt that I couldn't keep him safely inside until he was ready for the world. Guilt that I couldn't comfort him when he needed his mummy the most in those early weeks when all he really knew was pain. As time moved on, guilt that I now have a healthy, happy boy who's doing unbelievably well in spite of his prematurity and yet I still feel like I'm waiting for the floor to drop away again at any moment. The guilt of the effect it had on my older child. How her little, developing personality was changed forever by the experience as she took on some of the anxiety of a family under intense stress. Every time I see her anxious mind working overtime I feel guilty that this was caused by what she experienced at such a young age. Guilt that I know parents and little ones going through so much worse and so I really shouldn't complain.

- The feeling of loss. And I hate how selfish that sounds when I was lucky enough to take my baby home! I know too many parents who have not been so fortunate and my hearts breaks for the pain they have to live with. But I can't ignore that I feel a sense of loss for what should have been. The loss of all of the 'normal' newborn firsts, and the loss of the me that I was before. Every so often I'll be overwhelmed with sadness about missing three months of my baby bump, and being put to sleep for the birth not knowing what the outcome would be. The sense of loss has got less and less, and I know how incredibly lucky I am, but it hasn't completely gone away yet and I notice it most when I look enviously at a lovely big baby bump or I hear a great birth story.     

- My inability to switch off the apnoea monitor until long after my little man could cope without needing any oxygen support. He was on oxygen at home for the first year of his life and I got so used to it that I almost didn't want him to come off it (how bad is that?!). I knew I’d miss the comfort and the weekly nurse visits, the passport to the children's ward (no A&E germs, thank you!), and the fact that his tubes were such a part of him that I was a little scared about what he'd look like without his nasal cannula and tapes (even though I'd seen his gorgeous face without it hundreds of times!). I never said these things out loud of course, I spoke only of my positivity about his imminent graduation to breathing only air!

- The neuroticism of seeing strangers burping their babies over their shoulder and having to fight the urge to run to tell them about the risks of not being able to see if their baby went blue. While at home I'd bark at family members not to let my son's chin drop to his chest when they held him because I knew the effect this had on his oxygen levels (usually followed by the almost audible eyebrow raising I'd hear as I turned my back).

- The obsession with hand sanitiser and the ability to spot someone with a cold from a thousand feet. I still boil inside a little when anyone turns up to a play date with a sniffle or a snotty child, even though my little premmie is tough as old boots now!  

- Insignificant sounds could take my breath away, like the beep of a heart monitor on an episode of Casualty or the music from the Pampers premature baby ad.

- The overwhelming desire to go back and visit the NNU family I left behind - especially the beautiful nurses who saved my little miracle - but the crippling fear of entering the maternity unit of the hospital has kept me away for years. 

I was changed forever by my experience of premature birth and life on the NNU. I'm a little wiser, I'm a lot more aware of the fragility of life, and I'm a tiny bit broken in a way that will never quite mend. Life moves on, people forget and my beautiful boy proves that miracles happen every day, but still the scar in my heart aches from time to time. But that's OK. I don't want to forget.  

Looking after you

In the almost four years since my experience of the NNU, I have learned more and more about PTSD from reading online support and sharing experiences. Although I'm not a health professional, I wanted to share just a snippet of what has helped me to overcome my own PTSD in the hope that it might help someone else going through similar experiences.  

1. I had to admit it was OK not to be OK. After months of thinking only about this fragile little person in my arms, I acknowledged that I had to think about the fragile mummy holding him too. The cracks were starting to gape and I needed to find a way to focus on putting myself back together.  

2. I had to allow myself to think about everything. As a parent, it's hard to get a minute to ourselves at the best of times, but after the experience of the NICU I found it essential to take time out to help my mind to clear the most traumatic memories into a pocket of the brain where it doesn't blindside me quite so violently. Facing the memories head-on may be the furthest thing from your mind as you balance life and trying to move forward, but I believe that had I not taken the time to process the memories properly I would still be stuck in a cycle of flashbacks and heightened anxiety.  

3. Premature baby networks and charities like Bliss and Born Too Soon are a Godsend! They're the perfect place to hear stories you can relate to, ask the questions you feel too silly asking your consultant, and to share your feelings with people who truly understand. It's also a great place to have a rant about those insensitive comments, like 'at least you don't have to get up for the night feeds' (because setting an alarm to get up to express every two hours, with empty arms, doesn't seem to count!). Or 'you're lucky you didn't have to push out a big baby!', (I can tell you with authority that labour with a 42 week 9lb baby was a hell of a lot easier than with a 27 week 2lber!) :-/ And it's a fun place to laugh about the parenting firsts that only a NICU mum can share - like the first time the isolette had to be replaced following a poonami, the first time you express 0.5ml of golden milk into a tiny syringe and proudly present it to the NICU nurses like you're presenting the World Cup, and how strangely normal it becomes to chat to virtual strangers while your boob is attached to a pumping machine that feels like it could suck the bones right out of you!

4. Bliss offer a helpline and peer support networks for parents on the NNU. Unfortunately I didn't know I needed the support at that point so I didn't take it up. I hope that as awareness of PTSD from a premature birth increases more parents will recognise that they can benefit from this amazing service offered by such a fantastic charity.    

5. I found writing stuff down the most cathartic experience. I never wrote a diary in the NICU but I wish I had. I spent my time staring at each breath or singing cheesy songs about hills and mountains we could climb – and most importantly, sharing some amazing conversations with the wonderful nurses and NICU mums who kept me sane on the long days I spent on my own in the hospital. However, once I was coming to the end of the journey to home I had an overwhelming urge to write, and so I penned some poems. After crying buckets of tears when I wrote them, I can now read them with this lovely feeling of calm. This is what inspired some of the poems in the Smallest Baby range. 

6. I talked - A LOT! Sometimes to myself, but mostly to anyone who stood near me for long enough! Friends and family were sometimes a little too close, and I wanted to protect them from some of the darkest parts of the experience. They'd try so hard to keep me upbeat and avoid any negativity that I found myself doing the same for them a lot of the time. Whereas, strangers or people I didn't know well wanted to hear the whole story, gore and all (or that's what I told myself anyway!). They listened intently not really questioning much, just intrigued and amazed by the strength of a human smaller than they’d ever seen. Maybe you're not a talker - I am, as you can probably tell! - but even just talking it through in your head could help to desensitise the trauma.  

I've accepted that it's impossible not to be changed by the trauma of a premature birth, and the effect of months spent with life on hold while you wait for the day you can finally leave the hospital without leaving a part of your heart behind.   

My message this Mental Health Awareness Week is a simple one: remember to look after you! Those lovely (most of the time!) little humans need you to take the time to take care of you. You may not always feel strong, but you are. You are stronger than you know, but it's OK to show the cracks too!