“Why don’t you write a blog?“ they said.
“You’ve got so much to write about!” they said.
To be honest, I’ve thought about writing a blog for quite some time…but I didn’t really know where to start and I wasn’t sure anyone would ever read it. In hindsight, I wish I’d started this blog back in May 2017 when Noah was born; but it was all far too raw to write about at the time…and as stupid as it may sound, there was a part of me that was absolutely terrified that if I started to jot down any positive news after a good day and a glimmer of hope from NICU; I’d jinx things and we’d take a billion step backwards with our little man.
But as the months have gone on, I’ve decided that a blog would be a great way to document our story so far. I now feel I’m at a place where I can reflect back on what our little family has been through since 2016, and celebrate the milestones with our heart warrior as they happen. And if I can raise awareness of congenital heart disease (CHD); being a NICU parent; and having a premature baby along the way, then even better.
So, as a brief introduction – I’m Sara and I’m a first time Mum to Noah, a CHD warrior born with Tetralogy of Fallot at 28 weeks gestation. Liam and I heard every parents’ worst nightmare at our 16 week scan – “there’s something wrong with your baby’s heart” … and every week of pregnancy that followed was filled with stress and worry about the future of our little bubs.
In this blog, I’ll be reflecting back on our journey (I feel like I’m on X Factor) – from that little positive pregnancy test at 3 weeks through to Noah’s speedy and very unexpected arrival at 28 weeks. I’ll share our birth story and the months that followed in NICU – spending 4 months in a London hospital, over 100 miles away from home, while we lived at a Ronald McDonald House in a bizarre bubble where we’d completely detached ourselves from the outside world. Spending a further 2 months in our local hospital, counting every hour that passed before we were told we could take our little boy home… then returning back to London 6 weeks later for Noah’s open heart surgery that involved another month in hospital because he developed pneumonia post-op. Life with CHD – which affects nearly 1 in every 100 babies born – is a rollercoaster, full of ups and downs. And as we were told on Day 1, premature babies with CHD struggle even more and are ridiculously vulnerable.
17.5 hours of surgery in theatre; 200 nights total in hospital; hundreds of blood tests; all of the antibiotics that exist on planet Earth; the help of the incredible NICU, PICU and cardiac nurses, doctors and consultants; and a helluva lot of hope, strength and determination. Miracles really do happen and our heart warrior is the perfect example of this! And so, the blog begins!