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Showing posts from September, 2018

Guest Blogging for Tiny Tickers

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

Dear Elijah, on your fourth birthday.

Happy Birthday my darling boy. 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

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

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

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

FRONT PAGE! 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. https://m.huffingtonpost.co.uk/entry/nicu-babies_uk_5b9692bce4b0cf7b0042403e?utm_hp_ref=uk-parents&ncid=other_homepage_tiwdkz83g

Every day for 7 days

Dreams far away from the NICU 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 . One of the most traumatic and hardest things I had to deal with whilst we were in #NICU was the separation from my baby just a few hours old. https://motherofalllists.com/2017/12/01/guest-list-life-on-the-neonatal-intensive-care-unit/ #nicu #nnuh #motherofalllists #clemmie #nicumum #hospital #ptsd #chd #TOF #trau

You're Going Home.

Days spent longing for the words. You're going home, the words anyone on #NICU long to hear. Once the adrenaline and emotion of loading up your baby in the car and getting them through the front door ebbs away, it hits you like a lorry. The worry. The responsibility. The fear they have got it wrong you shouldn't be here, you should be back where they can be monitored. He surely needs medication? The machines ring in your ears as you close your eyes. You can still smell the disinfectant and hand sanitizer from the ward. You are home but you are still very much on that NICU Ward. This is a small snippet of a #guestblog I wrote for @honestly_mum on her blog to mark #nicuawarenessweek link is below; https://www.kathrynstimpson.com/thebusyparent/confessionsofanicumum Please do share/like/ tag a #nicuparent or someone who may need some #tips on #transitioning from #nicu to #home . . . . . #nicuawarenessmonth #september #nicu #nhs #hospital #baby #birth #nicumu