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The premmie experience doesn’t end after NICU

Premature Baby NICU to Now

When you give birth to a baby prematurely, the final goal is taking your baby home – that’s what it’s all about. It’s the light at the end of the tunnel, it’s what you focus on every single day to get you through. For me, I let myself believe that when James came home from hospital, it was the end of the rollercoaster journey we had been flung onto. I was looking forward to finally having some semblance of a normal newborn life with my family. I wasn’t at all prepared for the ongoing concerns and anxieties that follow having a premature baby.

Initially, it was constant concern over weight gain. The importance of James growing and ‘catching up’ caused so much anxiety. This was accompanied by the stress of expressing, breastfeeding and top-ups. I was my own worst enemy and would second guess everything I did. I struggled to let go of the hospital routine and just ‘read my baby’. The hard part was meant to be over, yet here I was struggling with the basics. Then came the apprehension about how fragile James was and the daunting possibility of illness. I was cautious about going out, I was nervous about every cough, and I was becoming the over-protective person I promised I would never be. And then, when I finally built up enough courage to leave the house, it was frustration at the comments and judgements about how tiny James was. I would see a pregnant Mum and feel ripped off that I wasn’t able to enjoy my pregnancy…I wasn’t able to get ‘big’, to nest and to just wait for my baby. I became envious of anyone who was able to carry to term. I was grieving, and I felt inadequate. I was over-sensitive and I took things to heart, and I was annoyed that people didn’t understand.

It was only recently that I confronted another result of our premature experience that has impacted on my life today. As James grows and life moves forward, I’ve started thinking about the possibility of baby number 2. Suddenly I’m faced with an extreme mixture of emotions that I wasn’t expecting. I’ve had to ask myself questions that no Mum should ever have to consider. Can I put myself, my family and my next child through the stress and heartache of an anxious pregnancy and premature birth? Am I being selfish for wanting another child at the risk of their health? Have I educated myself enough to make such a difficult decision? Something that should be as easy as ‘let’s try for another baby’, has become a list of pro’s and con’s. Instead of feeling those flutters of excitement in my tummy at the thought of giving James a baby brother or sister, I’m feeling nervous at the uncertainty of it all.  

Yet despite all of this, we were one of the lucky ones. James was healthy. He didn’t have any ongoing medical concerns apart from bilateral hydrocele and reflux. Yes, we had follow-up appointments and extra check-ups, but nothing to the extent of other premmie families. We were lucky enough to avoid the ongoing lung complications, the speech and physical therapies, the developmental delays and long-term health concerns. Not to mention the ongoing emotional and relationship challenges that parents may face after such a traumatic time.

For some, NICU is just the beginning of the premature experience and the journey continues long after their little miracle is discharged from hospital. If you know someone who has had a premature baby, this is simply a reminder to be compassionate and remember that they will continue to need your support well after the NICU journey is over- the gap between hospital and home can sometimes be a narrow one. And to my fellow premmie parents, this is your reminder that you are not alone. These feelings are normal and the guilt is real. Let yourself grieve. 

And even though you may never get over it, you will get through it.

1 comment

  • I’ve got tears going down my face as I read this I forget sometimes that it’s OK to feel the way I do and that I have a reason too thank you for you’re message I needed a reminder of just how strong I am not just how strong my boy is thank you

    Amber-lee Fish

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