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Showing posts from 2018

Dear CHD...

Dear CHD,
Four years ago I had never heard of you.
I didn't know what you stood for.
I didn't know what you could take away.
I was naive to not realise the impact of you on my family's lives.
You changed my life that day as I watched as you took residence in my newborn son and went to battle with him.
I watched from the sidelines as your effects ripped through his tiny body and I felt every breath he struggled to take, heard every alarm you caused to sound, you were winning.
You were killing my baby.
He was loosing the battle but there was something you didn't count on, that he fought back.
He was so little, but he was more powerful than you.
He got stronger, he began to feed, he tolerated you and eventually he became strong.
We took you home with us, it wasn't just our newborn baby we welcomed home, it was you too and guess what, you were never invited.
You robbed us of a normal life.
You caused fear in me like I have never felt before.
You gave is an uncertain …

The NICU Parent Partnership Launch Campaign

We had an idea, and it was a fairly small and simple idea to help NICU parents during and after their NICU journey.
To have one dedicated, honest and accessible space that parents, siblings, grandparents, family and friends can find honest and accessible materials and everything they need created by those who have been through it, well as having peer to peer support for NICU parents by NICU parents.
This was our seed, we knew what we wanted to do but didn't know how to do it.
We had two amazing meetings last week with two amazing ladies who are helping us with the tools to launch TNPP.
@samjames_themumcoach will be creating and implenting our peer to peer training program and the lovely Sarah @wildflowerdgtl will be helping us get up and running online and the logistics to implement everything we want.
We cannot thank these ladies enough for dedicating their time, support and most importantly for believing in us and helping us achieve our goal.
Our @gofundme page is now live plea…

To my son with CHD as we apply for school.

We knew it was coming.
After all, most of your friends started school last month, as you are a September baby you will be the oldest in your class.
I have to be honest, seeing the letter and holding it in my hand still made me stop for a moment. I turned to look at you and realise next year your teachers will see you more than I will.
That you won't be here demanding Power Rangers on Netflix, making me craft or bake and you won't be pulling your brother about the house by his feet (well, as much).
I have been heartbroken for you this year.
You should have gone to school, you are so ready.
Missing the cut off by two weeks I watched you as your friends all went up, I saw confusion in why you were not going with them, why they weren't coming on weekday playdates anymore.
You acted out, overwhelmed by all the change not realising why it was all happening.
We decided to keep you busy, we filled your week with classes and activities.
I was gutted for you, I felt you were missing out, get…

Small steps...

Over the years since starting my blog I have always had the same dream, to stop anyone feeling as though I did when Elijah was born and admitted to NICU.

To support, comfort, raise awareness and normalize NICU.

I never wanted anyone to go down the same path as I did and if there was something, anything I could do to prevent that, I woul d try my best to do it.

I've tried things that haven't worked out, joined campaigns that fizzled out and still felt there was more to be done.

I think it's taken up until now to realise HOW I can do this. That I can build on my blog and social media skills to truly achieve what I have dreamed of for so long.

We have had two productive and amazing meetings this week regarding The NICU Parent Partnership and given some of the tools to make this happen.

We have also welcomed on board our first volunteer who will be TNPP's Secretary which is very exciting!

We have gone live over on Instagram so please come follow us, tag anyone you think t…

To a fellow NICU Mum - The M Word

"When I first met another NICU mum it felt as though the burden I had been carrying for all those months had lifted.
I felt so much lighter, I felt understood, and I felt as though I was normal.
The look in your eyes today, it took me back.
Every gut wrenching feeling washed over me, your pain resonated with me on a level that is almost indescribable.
I want you to know, I get it mama, I really do in only a way someone who has been through it can.
You are not alone.
I am here for you, part of the same club that neither of us asked to be in.
One that will be with us for a long time to come, if not forever."
I am so proud of the piece I recently wrote for The M Word it is dedicated to all the NICU parents I have met recently, but one lady in particular inspired this piece 💜
You can read the full piece by clicking here.

Huffington Post - #BirthDiaries

I was invited to be interviewed by the Huffington Post UK for their amazing new #BirthDiaries series.

It is a series that aims to share and bring together different birth experiences and stories.

If you have followed me for a while you will know my youngest son's birth was a whirlwind unplanned 50 minute home birth after some fajitas for tea!

You can read my full birth story here.
I believe it is so important to share our diverse birth stories to show the difference between them and how much they can vary. There is no perfect birth.

This is also why I am a supporter of the amazing Make Birth Better Network, and have recently taken part in there #EveryWordCounts campaign.

My advice of you are a parent to be about to give birth and a snippet from the interview...

"Don’t fixate on what you’ve seen in the media and what your image of birth is. The chances are, it’s not going to go that way. We are given an unrealistic image of what a good birth is, so when things don’t go to plan w…

Dreaming a little NICU dream

The NICU Club

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.
LonelyAlone 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.

I am a finalist!

I have to admit over the last few years of blogging, there have been many ups and downs.

Sometimes, the blog has taken a back seat whilst I revaluate if I really did want to keep sharing the finer details of our lives.

I have blogged whilst having a part time job, being pregnant, a mum of two and now I can say that I get paid to blog for other people which is a dream come true.

Writing is my passion, especially when I am writing about something that I am so driven about.

There have been many crashes of confidence, nights in tears whilst I compare myself to the others making the big bucks of social media, the ones getting the book deals handed to them, or featured in all of the publications that I crave so desperately to be part of.

But, despite that I kept going, and have found my niche, and through this have met some amazing people, have featured and written for some great bloggers and websites and get to do something I love whilst hopefully helping others and making a difference.


Guest Blogging for Tiny Tickers

For those who regularly read the blog, you will know that I have shared my story and raised a lot of awareness for the charity Tiny Tickers.

They are a frankly amazing charity which is striving to help diagnose babies with undetected heart conditions and supporting families when they are getting that life changing diagnosis.

We used their THINK HEART campaign when we went for a foetal medicine scan with Harlow to check whether he too, would have CHD or not.

One of the most frequent questions we get about Elijah is why his condition wasn't picked up in the scans. Why it wasn't until 12 hours post birth that he was having cyanotic episodes and was admitted to NICU to be diagnosed.

The answer? No one knows, it just didn't show, get picked up and actually we were told the majority of TOF patients are diagnosed post birth.

Here he had a scan and was then diagnosed with Tetralogy of Fallot when we received the diagnosis it felt as though our world was crashing in around us.

I d…

Dear Elijah, on your fourth birthday.

Dear Elijah,

I cannot quite believe that I am writing this a letter to you, on your fourth birthday.
It feels as though you have been in our lives for what seems like no time at all and as if you've been there our whole lives; all at the same time.
We have all come so far since the day you were born, the following long days we spent in hospital at your side.
I think things have changed in the last year.
It hasn't been the easiest has it?
There has been a lot of emotion.
A lot of anger from me, and from you.
You are so smart, so sensitive and I can see how frustrated you get with the world.
And with me, when you don't understand why you cannot always get what you want, why I say no.
It's hard to see the disappointment in your face when your dad leaves for work or I tell you Mummy cannot play as she needs to work too.
I know it's been hard, I haven't been myself and your brother can be hard work.
He can be demanding and I know I've had to side-line you at ti…

5 things I want you to know about being a NICU Mum, this #nicuawarenessmonth

5 things I want you to know about being a NICU Mum, this #nicuawarenessmonth

In less than four days’ time, my eldest child will celebrate his fourth birthday.
Birthdays are always emotional especially when looking back, I class his birth as one of the most traumatic times of my life.
I recently wrote about how four years it still haunts me.
I didn’t just become a new mum, I became a NICU (Neo Natal Intensive Care Unit) Mum.
It was a title I didn’t ask for and we were part of a club we didn’t ask to join.
I have now spent nearly 4 years writing about our story on this blog, and for other publications and websites.
I have tried to raise awareness of the issues that affected us, I have tried to bring about change but ultimately and I hope I am right in saying I have helped other NICU Mum and CHD (Congenital Heart Defect) parents.
I have tried to process some of the emotions surrounding our NICU experience and use them to do something positive.
I had so much I wanted to say this #nicuawareness…

Why are NICU parents like me so unrepresented in the media?

Very excited to be featured on the front page of the #parentvoices page today on the @huffpostuk about a subject very close to my heart regarding the underrepresentation of #nicuparents in the #media.
"Why aren’t we talking about NICU? Why as a NICU mum do I feel like I have failed because I cannot live up to the images I see every day in the media?
Why aren’t we talking about NICU in antenatal classes? Why are we leaving new parents to be ambushed after just giving birth to find yourself in the unknown territory of the NICU ward?
You’re thrust into a world you didn’t ask for, you didn’t know anything about at a time you should be celebrating the happiest time of your life."
With it being #nicuawarenessmonth now is the perfect time to raise these issues and start a conversation that could lead to change. .

Every day for 7 days

Every day for 7 days I walked past the mothers with their perfectly healthy babies and felt sick to my stomach. Why was this happening to us? I had to quickly learn about the day to day running of the NICU and spent 90% of my time there.

I walked through the ward with my head hung low with an empty car seat. I was going home without my baby.

The double doors, the constant hand sanitising, knowing what times the Doctors did their rounds all became second nature to me." This is taken from my blog which was featured on the brilliant @clemmie_telford#motherofalllists and one I wanted to reshare for #nicuawarenessmonth.