In | #heartmonthphotochallenge Week 1

February 2018

February each year is 'Heart Month' - a time to raise awareness (and maybe some money, see here) in regards to the life we face each day and this year, we have chosen to participate in a photo challenge where each day we are given a prompt and I chat a little bit about what that means to us alongside the Ivy's outfit photo each day. I always worry that people think we're living a lot more of a 'glamourous' life than we really are so I have kept the images the same as I would usually post on Instagram but have made the captions very raw and very honest in the hope that our friends, family and followers can see what goes on behind the gorgeous outfits they see each day and to remind them that what I choose to put out on social media is just a fraction of who we are.

The reaction to these posts has been so overwhelmingly supportive, I thought it would be nice to share each week on here too. Maybe one day, it will be Ivy reading my thoughts and I hope she is proud of me, and the way I have shared her story but more importantly, I hope she is proud of herself and all the things she has overcome in order to be the brilliant girl she is.

Day 1 - Heart Hero
It’s heart month - but so are the other 11 for us so we are taking part in the #heartmonthphotochallenge to raise some awareness. Our first prompt is heart hero and here is, quite obviously!, mine 

Day 2 - Diagnosis
This is going to be a long one I’m afraid! Ivy was diagnosed with a condition called Right Isomerism (or heterotaxy) which is a rare condition which affects the way the organs develop in week 7 of pregnancy. Each case of heterotaxy is unique and can affect the baby in so many ways but for Ivy, it has caused extremely complex heart problems (9 or so), a midline liver, her stomach on the opposite side and usually no spleen. I found this out at my 20 week scan. Ivy’s heart problems have always been the centre of her care (as the most life threatening) which is why we’re under the fantastic team at the Royal Brompton. Sadly for us, the diagnosis's did not end there and a year ago we got the devastating news that Ivy had got an even rarer condition called Protein Losing Enteropathy following her fontan (read here). This usually occurs many years after this operation and she is the youngest patient our hospital have ever tried to treat. This condition is incurable. We have exhausted most methods of trying to stabilise her to no avail and we have now been referred to the transplant team at GOSH and to a doctor in America who may be able to help us but this is such an under-researched disease we are just hoping for a miracle and enjoying the time we have with her as she is now. Any diagnosis, however big or small, is more utterly devastating than you could ever imagine but you find it in yourself to pick yourself up and remain positive for the future whatever that may be. It took me much longer to do that after the PLE confirmation as the unknown petrifies me but I am always leaning to be so unbelievably grateful for the time I do get with this incredible girl

Day 3 - Medication
Ivy has been on multiple daily medications since birth and they have changed countless times. Since her fontan, we have trialed endless combinations of drugs to keep her alive and well and (touchwood) we seem to have found one that works for us at the moment which is made up of 7 medicines (10 daily syringes worth). They all taste revolting (one of them is sodium chloride so, pure salt water) and quite regularly you’ll get given a new brand which tastes even worse and you have to start the daily battle of getting her to take them without fuss over again - but for the most part she is amazing and has them without question. I often wonder when she’ll realise that this isn’t what all kids do but for her it has always been a crucial part of our daily routine. One of the worst things that they don’t tell you about when you start on your heart journey is the sheer pain you have trying to get hold of these insanely expensive, specialist items and you’d think pharmacists would care more about getting these life saving drugs out to children on time but it rarely works out. It is a full time job just admining Ivy’s condition and I spend a lot of my day to day life chasing around and collecting these medications, changing doses to suit her symptoms and even travelling to hospitals to get hold of some that a pharmacist cannot even dispense for us. However stressful it can sometimes get, I thank our lucky stars every day for the NHS as the horror stories I see coming out of the US regarding meds and insurance are just awful. Sorry this is so long, I think this challenge is already becoming a bit therapeutic for me and I hope you are able to understand a bit more of the life that goes on behind the gorgeous outfits 

Day 4 - Weight Gain
Heart babies traditionally don’t grow particularly well and struggle with feeding issues but thanks to the most amazing neonatal nurse who sat with me solidly for a week to allow me to breastfeed my baby in intensive care, I was able to feed Ivy until she was almost 2 and her growth charts wouldn’t indicate there was any problem with her. As with many things, this all changed after her fontan. One of the most awful symptoms of PLE is fluid retention which has effected Ivy badly and this, alongside a steroid we tried for a little while has meant her weight has been all over the place as you may well have noticed in her daily outfit photos. We came off the steroid in the autumn which is why her face is looking much more like her lately and although it breaks my heart this treatment did not work for us, seeing my baby girls face return has been a positive of coming off of it - it’s so much easier to forget how poorly she is when she doesn’t look it. The other problem area we get is her belly. She is classified as ‘stable’ at 17kg but this is with a 4cm deep pocket of fluid around her pelvic area which is an awful lot. We have to weigh Ivy every single morning and adjust her diuretics (meds to flush the water) accordingly but there have been a few occasions when oral meds have made no difference and she’s ballooned at an alarming rate so we’ve had to be admitted to hospital to have her flushed via an IV 

Day 5 - Doctors Appointment
Of all the NHS resources we use, a GP is rarely one of them. I tend to find general doctors are quite scared of Ivy's condition and will send us to more specialised services for minor ailments ‘just to be on the safe side’ so we no longer waste theirs or our time and go straight to A&E or speak to an oncall registrar at the Brompton

Day 6 - Coping
As with anything, there is no manual given to you on ‘coping’ with life with a poorly child and many days I feel like I’m not. Whilst things are happening and life is busy, it’s amazing how much the adrenaline fuels your need to keep going, remain positive and keep coping but when it all dies down and you’re in a period of stability it can be difficult to process what’s happened when you finally get the chance to. Having things to look forward to is always a fab coping mechanism (like Disney was) but on a more day-to-day basis I cope by staying busy with my babies and blogging -the most therapeutic distraction. It amazes me though, how well someone copes with it all at just 4 years old. She has her moments, and as she gets older and begins to understand more we know this may change but for now she takes it all on the chin, gets on with it and is always smiling. She sets the example - not me - so how could I ever not cope for her? It’s the least I can do 

Day 7 - Support
It goes without saying that I could not do what I do for Ivy without the upmost support from those around me. Michael, who chose to be a part of this life, does the over night stays, has taken the pressure off me making life changing decisions alone, holds my hand when we’re pacing South Kensington waiting for the phone call to say she’s back from theatre, challenges me when I may not be 100% right, sits in every single appointment and then trawls US Medical reports for answers, still manages to make me smile in the worst moments of my life. To my mum, who let me raise my baby in her home, would walk to the end of the earth and back for either of us, spends hours playing the games with Ivy that I am sick of. To the most thoughtful friend who didn’t know how to help so emailed me a Starbucks voucher. To the person I met on the Internet 3 years ago who I now speak to every single day. To the woman who has stuck with me from the moment she knew I was pregnant and has been like a sister to me ever since. To the heart mamas who understand. To the strangers on Facebook groups who answer my obscure questions at ridiculous times of night. To the nurses that know when you need a good chat about which is the best M&S biscuit. To the parents who get it when we won’t meet up in winter due to my unreal fear of germs. To you, our followers, who have never even met us and yet send so many words of encouragement that fill our hearts with so much love. Whenever you tell me I’m doing a good job, never forget that I am only as good as everything else in my life and I am so, so lucky x 

You can read all posts about Ivy's heart here