Thursday 12 February 2015

#ChdWeek

This week is CHD awareness week & after seeing this post on The Corbin Story's blog I wanted to use their photo a day challenge to write this post. Our journey is far from over, in fact this is only the beginning..but our story so far might just help another heart family and that's what I started this blog for.

The idea of the photo a day challenge was to post a photo, video or even a poem corresponding to the word for that day..


I've chosen to post mine here..

#Diagnosis



I was just 17 weeks pregnant when I found out there was something wrong with our baby's heart, but we wouldn't get a diagnosis until we were seen by Great Ormond Street a week later. Harper has Left Atrial Isomerism, or Heterotaxy as it's better known in other countries. It doesn't just affect her heart..but all her organs, causing them to be in the wrong place or an abnormal shape. It's extremely rare, something I've found really hard as there's no information about her condition online, but luckily I've met some mum's through Facebook who's children also have Heterotaxy.

#Surgery/Meds

Harper was originally supposed to have open heart surgery at 3 months old, but managed to close her VSD at birth so it had been postponed. It has now been booked for 4 months time and will take place at GOSH. She is currently taking 2 diuretic medications - Sprinolactone and Furosemide twice a day. She is also taking amoxicillin as she has picked up another virus..she is on the mend now though.

#Siblings 


Harper has a big brother, Teddy who is 2. He loves his sister loads and refers to her as his Princess. He is still too young to understand everything that goes on with Harper, which in a way I'm glad about but it also means we can't explain why we have to stay in hospital with her while he stays with family.

#Realisation



I consider ourselves to be very lucky with Harper, especially as we were told she might not breathe on her own and wouldn't have an immune system. To have been able to bring Harper home & lead a pretty normal life for the last 7 months is something I'm very grateful for. Sometimes you'd never know she had anything wrong with her, until something goes wrong..she gets ill or she stops gaining weight. She gets treated differently by doctors, who most of the time have no idea what to do with her, I've had to beg nurses not to turn her oxygen up when she had bronchiolitis because it was dangerous for her..because they didn't understand her condition.
It's then we realise that she isn't a normal baby..she's a heart baby and she will always be treated differently because of it.

#NewLife



My new life started the day Harper was born, the day I became a Heart Mum, the day Teddy became a big brother. Our family was now complete..we knew it was going to be tough, but we were as prepared as we could be.

#HeartMom



I suppose I should post a bit about myself here, but when I think of the words 'heart mum' I think of Gemma, mummy to Martha-Grace and who's blog got me through pregnancy. They have been through surgery more than once and it's post's like this that I need to be reading right now, these are more helpful than any leaflet GOSH can give me..real stories that give mums like me hope, that everything will be okay in the end. 

#HeartDad



Harper & Teddy's dad is Joe..who has amazed me over the last 7 months especially by running in The Royal Parks half marathon to raise money for GOSH. He is always positive when it comes to Harpers condition and always picks me up when I'm having a bad day. 

#TributeToYourWarrior



Our little girl amazes me everyday, she is one little fighter. She doesn't let Heterotaxy stop her doing anything and has reached every milestone that she should have by now. She always has a huge smile on her face, even when doctors are prodding and poking her and even when she's poorly. She is facing a tough time in the next few months, as are we...her open heart surgery in May.
The hardest thing any of us have ever..and probably will ever go through.

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