Being A NICU Mum // by The Honest Confessions of A NICU Mum

Note from Naomi: Todays post is a guest post from the beautiful Vicki from The Honest Confessions of a NICU Mum. This lovely mummy blogger has written a wonderful post on her experience of having a child born with unexpected health issues that led to her being a NICU mum. If you like what she has written here, then you will love her blog. Check it out here.

If we are honest, no one really knows what they are doing when it comes to being a parent do they? We listen to others, read advice online or in books or just go hell for leather with an experiment that may or may not work!

There is no one size fits all, where one thing could work for one family, it will not for another.

People can sometimes judge others for their parenting choices; or publicly shame them. This is normally down to their own insecurities, and to make themselves feel better. When I was pregnant I read so many parenting books; scrolled through Baby Centre online; and spoke to every mother I could about anything I could. However, no matter how many book shops, or parenting shelves in the library you go into, there is no section on what to expect when your baby ill born ill.

No section on what to expect when they are admitted to NICU.

No section on what to expect when that they need lifesaving surgery.

I had an amazing labour, but was pretty ill afterwards. This would actually turn out to be a blessing in disguise, as Elijah was monitored by a nurse and admitted to NICU. This is where they discovered he has Tetralogy of Fallot, a congenital heart disease that would need surgery in the next few months. This was followed a day later by Elijah suffering from a neo natal stroke, which may or may not leave him disabled.

I was in shock – where was my fairy tale start to motherhood?

Why was I not like those pictures of mothers with their babies by the sides of their beds in all of the parenting books I read? Why wasn’t there any information, warning what it is like to experience this? Why is it that there is no information given in antenatal classes about what happens if the baby is ill? How you should feel? What you should do?

I was lost, getting further and further into an abyss that was supposed to be the start of my new life as a mother. I didn’t really get too much support in hospital, and that later would have a devastating effect on my mental health. No one I knew had to go through this. They went in, had their babies and came home.

Then came the pity from others.

In tidal waves, ‘oh you poor thing’, and, ‘you must be so brave to go through this’.

I didn’t want pity.

It just reminded me of the fact that I wasn’t a ‘normal’ mother – that we were different. All I wanted in those first few months was for them to call me to say they had made a mistake. That Elijah was fine. No one wants to give you help or advice if you have an ill child. They don’t want to touch you with a barge pole! Our health visitor didn’t help what so ever, all they did was tell me I had to call the doctor. Even through the smallest thing, the doctor would then ask why we didn’t go to the health visitor!

I was so conflicted – from being over protective; to feeling like I was bothering the doctors; to fearing we would end up with yet another hospital stay. I just wanted to do it by myself, but my fear controlled me. One doctor once told me I would get my confidence. I looked at her blankly. I didn’t think I could ever look after my child without living in worry.

I began to search for success stories – surgery stories – anything I could online.

But when I went to look in the library, where were the books for dealing with an ill child? The books about when your child needs surgery? Where do you go for support? Who was there to help you?

So, I did it alone. This is not advisable.

I internalised everything and punished myself through not eating. I wasn’t coping and all I needed, looking back, was someone who had been through it to help me. To come and honestly tell me how I was supposed to be feeling. To tell me that I wasn’t abnormal for not coping and that it was okay not to be strong all of the time. To tell me it is normal to be angry. To be bitter. To resent everything and everyone.

That chapter of our lives for now is over.

No more surgery until Elijah is likely to be a teenager, and we are now at yearly check-ups. I suppose you could say we are a ‘normal’ family to the outside world. But, there are things that creep into day to day life that remind me that we are not. Things that remind me I do have a child with a heart condition, and that he was in NICU.

For example the fact Elijah has just moved up into nursery, and I had to make sure his keyworker knew all about his condition, as well as what to look out for in an emergency. The ins and outs of the last year. Also, the way I know how to push for things with the medical staff that deep down I know is right for my child. Again, when we came to introduce nuts to his diet and we had to have him tested beforehand so we knew he wouldn’t go into shock, as we didn’t know the effect it would have on his heart. The way that when he gets a cold – and sounds slightly chesty – I go into full blown panic. Less so now we are post-op, but beforehand it meant a trip to hospital.

I am in tuned with Elijah’s breathing and heart rate I even know what his sats are on a good day. Any slight change, that familiar knot in my stomach appears, it feels like I cannot breathe from the panic. The fear.

I have to say – we are very lucky.

Elijah isn’t on any medication and we do not have to go back to hospital now until Jan 2017. Normal day to day life isn’t really any different from any other 2-year-old. Elijah is loud, mischievous and very curious. He has no fear, none what so ever. He will climb on chairs, tables and launches himself off the bed.

There is one thing no one tells you about when you are a parent, how over protective you become of your child.

When you have an ill child, a child who has had surgery I think that increases tenfold. I have been likened to a bearded dragon at times. You try and do you best for your child, but there is no control, it is out of your hands that’s what is scary. It feels like people can at times look down on NICU parents, especially those of preemie babies, that they didn’t have it as hard as they had the baby earlier. Unless you have been through the NICU journey you will never know what it is truly like. You would know then to support one another. When I say we were in NICU a lot of people mistake it for meaning that Elijah was a preemie, but he was full term – a whopping 8.12lbs – he was just ill. On the flip side people seem surprised when I am not too fussed if Elijah has a little bump at soft play. I mean come on, he has had heart surgery. It has taken a long time and it does shock at times, but I can even joke about it now. If I didn’t laugh I would cry, so, hey! I think I have earnt that right?

Elijah has just turned two, and it has been an emotional time. I think all parents feel this when their child, their baby turns another year older. For me, I feel like it is also a time to reflect on how far we have all come in this time. Not many people can say that before the age of two their child had spent 9 days in NICU, 5 days in Great Ormond Street and had open heart surgery. He has also overcome a stroke. It hasn’t affected him in the slightest! Both physically and mentally this journey took its toll on me. Having a child in NICU is actually considered a traumatic event, and rightly so. I was eventually diagnosed with PTSD but can say I am the happiest and healthiest I have been in a long time.

I would never judge another parent, or their choices.

We live in an age where people can be so cruel and openly crucify others because of their parenting choice. I guess when you are a new parent in those early days it is easy to be swayed by the majority but over time you gain a confidence. A fierceness in your belly that yes, I am making the right choice, and hay if isn’t at least I did what I thought was best at the time. There is a lot of uncertainty being a NICU parent. Is it okay to do this? Can I take him here? I hated people’s pity, but knew that were secretly glad it wasn’t them going through this. I just wanted to be treated like a mother. Because that what I am. It took a long time to accept our journey but I am proud to be Elijah’s mother. I am proud of the journey we took as it has all made us stronger.

I am proud to say I do parent my way now.

I don’t fear the implications as much as Elijah is much healthier. The one thing I now fear is how people treat us just because we have gone through this. It doesn’t mean we should be treated in any other way. Put the kid gloves away for now, we won’t bite!