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I wish they had told me in antenatal…

I wish they had told me in antenatal…

…that pregnancies don’t always have the outcome you may have dreamed about.

I don’t mean scare the living daylights out of mums and dads to be, take away the magic of expecting your baby, increase possibly already high anxiety levels, or paint a doom and gloom picture of every possible worst-case scenario.

But a heads-up that sometimes things don’t go to plan would, in my opinion, be helpful.

An awareness, a “oh I’ve heard of that before”, or things to keep an eye on could go some small way in allaying initial fears when your direction of journey rapidly changes.

...that full term babies can be poorly too, and find themselves in neonatal care.

I was incredibly blessed with an uneventful pregnancy, and never for one second did I take this for granted.

I breathed a sigh of relief at my 12 week scan (knowing that some babies, heartbreakingly, don’t make it to that stage), I declined the test for Down’s Syndrome as I knew it wouldn’t change anything for us, and I (naively) didn’t pay much attention on the hospital tour when they showed us the neonatal unit .

I was already 37 weeks pregnant, our baby wasn’t going to be premature, we wouldn’t been needing their services.

How wrong could I have been! (Heidi experienced a HIE event, a lack of oxygent to the brain, just after birth - at 40+11 - and was transferred to NICU to be looked after).

…that breastfeeding might not be an option, no matter how good you know it is for the baby and how much you want to do it.

I had had a pretty relaxed approach in terms of my thoughts on breastfeeding - I wanted to try it but wasn't putting myself under pressure if it didn’t happen.

Fed is best and all that! 

I sat through the classes with other mums and bumps where we learned the importance of colostrum (liquid gold!), the bonding benefits of enjoying nursing time, the fact that it doesn’t always come easily, and that with the right guidance and perseverance, you’ll get there.

Throw in to the mix though a baby who doesn’t have a safe swallow, hooked up to machines  and being cooled to prevent further injury to their brain, and a mama who is emotional and exhausted -  formula and an NG tube (nasogastric feeding tube) soon become much more important. 

Babies need feeding tubes for lots of different reasons, sometimes it’s a short-term thing, for others, like our daughter, it will be with her for life.

Again, it’s not about causing worry, but having a brief understanding of what they are, before you’re in that situation, may just take away a little worry.

Of course no-one wants their baby to be tube fed, but how amazing that we now have this available to provide essential nutrition and medicine?

That little tube of plastic is literally a life saver.

...that you (very quickly) know what is best for you and your child.

Yes there is lots of great information out there, and some wonderful healthcare professionals, but you are the expert on you, and especially if your child has any additional needs, you will soon become the expert on them.

Mums to-be should be given the confidence to question, the courage to speak up if something doesn’t feel right, and always be involved fully in every decision made regarding them and their little one.

...that you may not feel a whoosh of overwhelming love  of suddenly being a mum (or dad) straight away.

As an avid fan of One Born Every minute, and a reader of many a pregnancy magazine, I was ready and waiting to feel instantly like a mum, to be transformed into a maternal super-machine, from the second Heidi arrived.

It didn’t happen (and 5 years on, I can totally understand why).

I felt numb, then scared, then overwhelmed, then tired, then tired some more, but I didn’t feel “like a mum”.

I got hung up on this for a bit, and remember talking to my own mum about it.

She talked sense - it doesn’t happen like that. It takes time, hormones need to settle down, and when you have a poorly baby, you have so much else going on.

But you are a mum. And chances are you’re a bloomin’ good one.

...that however you’re feeling is ok. Social media has its place, and there can be some real positives from it, but there can sometimes also be an unrealistic portrayal of life.

New mums who ping back in to shape, babies who sleep through the night from day dot, tidy houses and immaculate hair and nails.

People rarely post the bedraggled selfies of when you’ve done your umpteenth nappy change of the night, the snap that shows you haven’t slept or showered in days, or the picture that points out tears of sadness or worry that sometimes catch you off guard.

These feelings are ok. They are “normal”, especially if your baby has been or still is poorly.

How you feel is valid, and isn’t to be compared to anyone else (and if you are one of those immaculate mums and that’s your thing, then of course that’s fine too….I’m just a tad jealous!).

...that you are way stronger than you ever knew you could bem even if you don’t always feel it.

You may have wondered if you were up for motherhood, you may have questioned your parenting credentials, but once you become a special needs parent then this is ramped up to a whole new level.

Can you do it? Are you cut out for all this?

What if your baby would be better with someone else?

Well you can do it, you will do it, and you will find your way.

It’s sometimes a bumpy road, but it also can be a marvellous journey, and leading on to my final point

...you’re not on your own.

The early days of having a baby can be overwhelming, and sometimes lonely.

I hope that everyone knows they aren’t on their own.

There’s lots of support out there, for whatever your circumstances may be, and there is nothing wrong with sometimes shouting out for a bit of a helping hand.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sarah Kay

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An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and support others who may be on their own journey.

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