Vicki Cockerill - NICU MUM Blog

Imagine a world where a zipper scar is recognised for the bearer being a #CHD hero and what that really means. When I tell someone about Elijah's heart condition (Tetralogy of Fallot a severe congential heart defect) I tend to guess their reaction. After four years we tend to be met with the same response. One that is slightly uncomfortable, one that sees them struggling to find the words after we tell them that we watched as our six month old baby was wheeled away into theatre, not knowing if we would see him alive again. Perhaps a glimmer of relief that it isn't their child that will face struggles, future surgeries, restrictions and life long appointments. We tend to be met with sympathy for our situation, which is greatfully recieved. Some have a relative or a friend they know that CHD has also resided in so have an insight into what our lives are like. Some ask questions which I jump at the chance of answering. Asking me questions about Elijah's condition me...

Waiting for an MRI in NICU 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 somet...

One Ill. One 'Normal' child. Someone recently asked me with great trepidation if I treated Elijah and Harlow differently, with Elijah having CHD and an open heart surgery under his belt already did it change how I treated them. The fact for the rest of his life CHD will be a lurking like a black cloud over us all does change things. She too had a child with a lifelong condition and one who doesn't. One ill child. One "normal" child. I could see the worry on her face about asking me this but I knew she needed reassurance that she’d been battling to rationalise this for herself for some time. The guilt was etched on her face. If we felt like this I am sure many others would so I wanted to honestly share my feelings to say we shouldn't feel like we cannot talk about something like this when you have one ill child and one who isn't. I know it's not the done thing to talk about who you favour etc. but the truth is... Yes. I do treat El...

Before Elijah was born, I didn’t have any experience with heart problems, other than the odd family member having a ‘dodgy ticker’. I didn’t really know what this meant or what could cause it. I certainly didn’t know what Congenital Heart Disease (CHD) was. Soon, that was about to change and I was going to become somewhat of an expert on the subject. When Elijah was born, 12 hours after birth he began having what we now know are called ‘Tet spells’, or, ‘dusky episodes’. Changing colour to a bluey/ purple colour and then regaining his normal pink colour. Upon his admittance to NICU he was diagnosed with a critical CHD called Tetralogy of Fallot (TOF). According to the NHS 1 in 111 babies born, are born with a CHD, this is also the cause of 1 in 13 infant deaths. Nothing was picked up on my scans, and we even had extra ones, all through the pregnancy we were told what a healthy heartbeat Elijah had. Never in a million years did we think there was something so wrong with our baby’s ...

A bit of background, Elijah was born with a Congenital Heart Defect (CHD) called Tetralogy of Fallot (TOF),  this means there were four structural abnormalities wrong with his heart. These were repaired, via open heart surgery at Great Ormond Street in April 2015 when he was 6 months old.  Please be CHD aware 1 in 100 babies are diagnosed with some form of CHD. To mark Elijah's two year heart anniversary, I will be sharing some CHD/ heart related posts of our journey that have appeared on the blog through the last year over on the Honest Confessions Facebook page this week. Elijah and Alice celebrating two big occasions this week. Elijah, this week marks two big occasions, your friend’s Alice’s second birthday (Happy Birthday Alice!) and something else that you are likely not to remember. It won’t make much sense to you now, but one day it will. This week you will see Mummy and Daddy look at you funny a lot, and you will get extra cuddles and kisses and you ...

For those that follow me on social media will see that this week, I was faced with some criticism for a post I had written. The post was featured on The Mighty a few months ago, and has been shared via some heart/ CHD sites too. The post which you can read here: ( https://themighty.com/2016/12/congenital-heart-defect-people-asking-if-child-is-fixed/ )   was written about when someone asked a simple question about Elijah. Is he fixed? I politely answered, but in hindsight something was bothering me. It was the terminology. It was the realisation that no, my son will never be fixed. So, I did what I do with most things, I wrote to process how I was feeling at the time. It was not a discussion, it was not instruction to all other heart parents on how they should act when someone asks a question. I didn't demand a revolution that we all protest when someone dares ask us a question. It was a post about a mum who was struggling to come to terms with the reality of her son's conditio...

  Today the 29th Sept is an extra special day for me, it was my original due date with Elijah and is also #worldheartday so now seems a great time to announce the #NICUMUMHEARTYGIVEAWAY.   For all of the support the social media community has given me with my #bigkidsforgosh campaign,and for the amazing response my #PNDAW16 blog series got. I wanted to give something back. Whilst at the same time, saying thank you to some of you awesome people who have supported me too! It is to say thank you, to my readers I cannot believe when I first started back in March I would be nearing 20,000 blog views, 1.5k Insta follwers, 1k on Twitter and nearly 100 likes on the blog FB page. I truly am grateful and as long as you keep reading, I will keep writing. I will forever be in debt to you as starting this blog saved me, and it really did help me get over PTSD. I never thought I would be helping fellow NICU and heart mamas and papas, and even have my own online store. That I wo...

Generally when I have featured stories on the #medicalfiles series it has been with the focus on the baby. But what happens when you yourself have a life threatening condition when pregnant? How will this affect your baby? Your pregnancy? Your birth? Find out about how Sammie  @tattooed_mammy coped with being pregnant, and suffering from PDA. As you all know Elijah was born with a CHD. 1 in 100 babies are born with CHD. This is a brilliant post to raise awareness for another form of CHD. Please be warned this is a journey, and I will guarantee you will be emotional by the end!   8 months pregnant My PDA and me during pregnancy. So I don't really know where it all began, I guess you could say I was going through a pretty bad patch during 2011/2012 and one day I found myself in hospital due to an overdose. After numerous physical checks I thought it'd all be okay and I'd be allowed home. After a check up on my heart/breathing through a stethoscope, I saw the doct...

Well here we are little man, your second birthday.   I am sure most parents get emotional when their child’s birthday approaches, however you don’t know this yet, but you are extra special. Not just extra special in the fact that all parents think their child is, but you have proved everyone wrong in just 24 months. You are so strong, so amazing and you do not even know it yet kiddo. This year started off well, with us not needing to see the heart consultant until Jan 2017, then you being discharged from the development clinic all together! You moved up in nursery 2 months ahead of your little friends of the same age and you have settled in and learnt so much. Wow, haven’t you? Your love of cars, motorbikes, lorries anything with wheels! Your Grandad would have been so proud.   You can say so much now! Your love of singing is infectious and I love our movie days together. I love how you look after your little babies and tuck them in at night, you are so kind and g...