Additional Needs

I Looked at Her, and Saw Myself

Posted by Sarah Kay on 26th March 2019 Advice & Support, Disabilities

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Our little girl, Heidi, spent the first few weeks of her life in NICU, after a HIE* event shortly after she was born.

I found it hard going back to the NICU once we were home.

The first time was to drop off a few thank-you goodies for the nurses a couple of months later.

Driving up to the hospital had me feeling the same things as when we first used to go and see Heidi, where I couldn’t get in there quick enough, but at the same time didn’t want to go in in case it was bad news.

Pressing the buzzer to get into the unit had me remembering how anxious I used to feel, wishing that someone would hurry up and open the door so that we could get to our girl.

The smell of the antibacterial hand gel wafted over me and I was right back there, back at the start, back feeling like my head was spinning and my stomach was churning.

I reminded myself that we weren’t back there though, Heidi was at home, and we had so much to be thankful for.

I still wobbled the next time I went back, but it wasn’t as bad, and the time after that got better again. So much so, that my last visit felt completely different.

I saw the NICU as the amazing place it is, with the doctors and nurses working their magic on the most precious of babies.

The familiar bing-bong noises of the various machines rang out, but I didn’t flinch at the sounds like I had on previous visits.

As I was sitting waiting to meet one of the consultants (I had been invited along to take part in a research study), I saw a mum walk in, through the double doors, to the hand gel station, and along the corridor towards her baby.

We briefly made eye contact; I smiled and wanted to say so much to her, but it didn’t seem appropriate.

For that brief second, I could see myself in her.

She looked tired, and anxious, and like her heart was about to burst because of the situation she was in, but she also looked like the strongest mama, there for her baby, and doing whatever she could to get through.

Since our NICU experience, people have often said to me that they “don’t know how we did it”.

You know what? Neither do I!

I look back, or I look at the mum in the corridor, and I wonder how on earth we coped – I have vague recollections of not really showering or sleeping that much, and going from not eating anything in the first few days, to eating comfort food at every opportunity, but other than that it’s a bit of a blur.

You really do just have to do what you can to get through the day, and when getting through the day seems too much, aim for the hour, and if the hour seems too much, focus on the next five minutes.

I so wanted to tell that mum in NICU that she was doing great, and that things would be ok, but I also want people to know that “ok” may not be as you had planned.

Heidi first came home from the hospital after 8 weeks – and she’s just turned 4!

Yes, she has complex needs (cerebral palsy, global developmental delays, epilepsy, and a tracheostomy to name but a few), but we are “ok”.

We enjoy life. We smile. We laugh. We have fun - something that in those early days I didn’t think would ever be possible.

There are of course tough times too, but we battle on and go back the same philosophy of doing whatever we need to do to get through.

I don’t think anything can prepare you for NICU or the journey beyond, but you can get through it. To that mama, I hope you’re doing ok.

*HIE stands for hypoxic-ischaemic encephalopathy, which in simple terms is a lack of oxygen to the brain.