The NICU Club

Helping out at The Big NICU Family Photo

Four years ago, I was sitting alone in a hospital side room after just giving birth.

My baby was down the hall after being admitted to NICU and the echoes of the distant baby's on the ward were deafening.

I was frightened, had no idea what was happening and was all alone.

Lonely

Alone with the fear my baby might die, alone that I knew no one who had gone through this. Alone with the fact I didn't know what the hell was happening.

I had no one I could text, call just to ask what do I do? How should I feel? Should I be this angry? This resentful and bitter anger bubbled beneath the surface because I felt I was being robbed of my start to motherhood.

I shut down, didn't want anyone to visit. If they did I shut myself away in my room and sent then down to NICU with my partner.

I couldn't face the questions, the pity.

Then during our time no one professional came to see if we were okay. A few leaflets here and there, a quick visit from a chaplain but the loneliness was palpable.

Pushed Away

I couldn't face the other parents on the ward, and only exchanged polite smiles. I didn't want to attend any 'groups' either. Part of me didn't want to actually acknowledge that I was a NICU parent.

I scrolled through the internet again and again to just find something that comforted me, that wasn't medical and filled with jargon, that was just real honest emotion.

I found nothing.

I heard that NICU is the club you become a member of, a lifetime membership you didn't ask for. I wanted to revoke my subscription and just be 'normal'.

On discharge it was even worse. In the grips of undiagnosed Post Traumatic Stress Disorder I began to shut myself away. I relived every single detail of NICU, over and over.

Social Media 

A few months later I joined Instagram (whilst in the bath!) and found another heart mum and reached out to her on DM. Suddenly as we shared stories of what we had been through, I felt as though I could be honest.

Really honest, I always sugar coated it to some, but the relief I didn't have to pretend or hide my true feelings, that someone just got it was as if for the first time since Elijah was born I felt normal.

Soon after that my blog was born, and I began 'connecting' with more NICU parents, some who had begun to reach out after reading my blog.

Suddenly I felt as though I could do more to help, I was providing them with what I longed for all that time ago. 

I have connected with and had the pleasure of meeting some amazing NICU parents both on and offline.

NICU Parents

The last two weeks I have met three NICU parents that have been kind, understanding, supportive and comforting to me. I am in awe of them and what they are doing and they have reignited a passion in me to do more. 

Speaking to a fellow NICU parent is a lot different than it is speaking to someone who hasn't gone through that journey. 

It is only another NICU parent who truly understands on the raw emotional level how you are feeling, because they are feeling it too.

Harper's Little Helpers

I met Tasha and Steve the parents to Harper who are trying to raise £80,000 for their daughter to receive a potentially life changing operation in America which could allow her to walk unaided. 

Tasha recently confessed that she read my blog whilst she was in NICU and frankly it was so overwhelming I burst into tears. It is why I started it in the first place, and it was possibly the biggest compliment I have ever received to date. 

They balance life, work, social media duties, press relations and not to mention all of the fundraising they and they are an inspiration, please do check out the Harpers Little Helpers Page.

NICU Charity Night

I also have connected with a local NICU Dad, Adam who is fundraising for the NNUH NICU Ward and as soon as I began to speak to him, was one of the most supportive people who was offering help, advice and is currently in the process of throwing an amazing night which you can find out about here; https://www.facebook.com/groups/2383747451855461/

Big NICU Family Photo

Then that brings me onto yesterday, which myself, Greg and Elijah spent at the Big NICU Family Photo that one NICU Mum Katy organised in out local area. She did an amazing job bringing is together, creating some stunning milestone cards to gift to the local NNUH NICU and raising money too.

I had been offering some help/ advice and spreading the word online about the event and it was a pleasure and honour to be asked to help on the day by Katy.

We registered everyone on arrival and frankly even now I am still so emotional about it.

To be in the same room as so many NICU parents and their NICU babies from new-borns to teenagers took my breath away. 

We were privileged to have some share their stories with us, and honestly to know we had all been through the NICU journey in some for or another, that we were all there together, I think we took back the meaning of NICU Club that day.

It was the first time in 4 years I didn't feel like I was the odd one out. That I was the one who had the ill baby, I felt part of something, I felt normal.

I now know, we need each other.
We aren't alone.
We are the NICU Club.