In | #heartmonthphotochallenge Week 2

February 2018

Day 8 - Milestone
Milestones can be really bittersweet - It’s hard to comprehend how much it’s taken to get to those ultra special moments and things like birthdays and heartiversaries can draw out all kinds of ugly emotions to the surface. ‘I hope this isn’t her last birthday’ ‘would she have done that earlier if she wasn’t a heart baby?’ but simultaneously, the pride and gratitude is overwhelming when they achieve things that at one point you thought they may not. Right now, one of my biggest heartaches is a milestone that we have not yet achieved and that is getting Ivy to nursery, something SHE desperately wants to do. We’ve had school uniform hanging up since September and I would be lying if I said didn’t need someone else to get the best out of her a couple of days every week and yet I’m still welcomed with an overwhelming sense of jealously everytime a new term comes around and the ‘front door’ photos appear in their masses - see, ugly. I will miss her terribly when she does get the green light to go (see again, bittersweet) but it’s the one thing I feel she’s been really robbed of in the last year and yet she does a fab job of putting up with me and Ted all day everyday and it will be even more special when we finally reach the point we’ve been working so hard to get to

Day 9 - Hospital
Between the Kings Road and those overly-blogged white town houses in South Ken, in one of the richest boroughs in the world, opposite the most beautiful church lays possibly the ugliest building ever. I often wonder how Chelsea residents feel about it when they walk past because despite it’s appearances, this building is one of the most special places on the planet and they probably have no idea of the magic that’s going on inside those walls and the battles the people inside are facing. It is a building that fills me equal amounts of dread and hope. That building has been and will always be a home to me and I cannot reiterate enough that I would never ever want her looked after anywhere other than at the Royal Brompton. The world class care from surgeons to Sophia the dinner lady cannot be matched and it is this hospital that has allowed me to have complete and utter faith she’s going to be ok. If you have been following our story and feel you are able to help, we would love it if you could text ROSE02 £2 to 70070 to help all families under the care of this incredible hospital. This could help fund anything from life-saving medical equipment to the equally needed free tea and coffee available to parents on the ward - thank you (and thank you @graciejholbrook for the text code!)

Day 10 - Echo/ECG/X-Ray
These things are as normal to Ivy as sleeping, eating and breathing. Echos are very similar to ultrasounds and can last between 10 minutes and an hour. Ivy’s never really enjoyed echos but it’s nothing a bit of iPad and biscuit bribery can’t usually solve. ECGs record heart rhythms with 12 wires stickered on to the body and take a matter of seconds (if the patient sits still) but the stickers usually stay on for days until we catch her by surprise. X-rays check for fluid around the lungs and heart and is guaranteed to get you a good sticker from the the technician 

Day 11 - Surgery
It doesn’t matter what operation your child is having, there is nothing like the feeling of handing your child over to a bunch of strangers, watching them be drugged to sleep, being unable to hold them at the one time you both need it most and the endless hours spent apart from them waiting for the call to say it’s all gone ok. Ivy’s had many procedures but has had two major open heart surgeries. The first was in March 2014 at just 3 months old and was an emergency. We were rushed to the Brompton where she had a major blue episode on the ward and she was sent down for a Norwood the following morning, except that didn’t go to plan either and 45 minutes into the operation we were asked to come back. She ended up having her Glenn. The second was her Fontan which was in September 2016, something we’d been gearing ourselves up towards for 7 months. I said goodbye to Ivy that day with the very realistic probability that I may never see her again. The operation was 9 hours but we didn’t see her for 11. However terrible these two surgeries have been for me, they were always going to be an essential part of Ivy’s life and without them being done, she simply would not be here today. For that, I am forever indebted to Mr Uemura, the surgeon that took on Ivy’s extremely complex heart and gave me all this precious time with my baby that I may never have had

Day 12 - Recovery
You run into PICU, desperate to be reunited with the person you love the most in this world and when you finally lay eyes on them, they are unrecognisable. They’re swollen from the hours on the heart and lung bypass, covered in dried blood, battered and bruised, have countless tubes and wires coming in and around their tiny body’s and a machine is breathing for them. Slowly but surely you try and break away from these awful dependencies. Coming off the ventilator, lowering the morphine, one less chest drain, sipping water. Watching them get angry because they have no idea what’s just happened and why they feel absolutely shit. Taking first steps with physio, moving back to the ward, trying to sleep with a million and one machines bleeping at you, living off chicken nuggets and chips, dragging your IVs along to the playroom. Seeing them look like themselves again for the first time. Going home. Being allowed home does not mean they have recovered though, it just means someone else could benefit from that bedspace more and the Brompton is ALWAYS full. But, I always feel Ivy recovers best in her own space, own bed, able to breathe fresh air and eat home cooked meals and slob in a bean bag infront of the tv rather than cooped up with an iPad. Then eventually we’ll go out to shop, have a play date, hear her laugh again, return to a new normal. Even now, there are some elements that we have still never recovered from like her mobility - she lost so much muscle tone after her fontan and the PLE now means it’s extremely difficult for her to build that back again. After her first open heart surgery, her breast bone (which has been carved open don’t forget meaning we couldn’t lift her under her arms for 12 weeks) fused back together oddly but this time, it looks perfect. Will she ever recover emotionally from the traumatic cannula attempts? A close friend of mine who is also participating in this challenge wrote yesterday ‘there is a common (and understandable) misconception that after the surgery the heart is fixed and sadly for many, it isn’t. Each surgery is performed just to get us through until next time’ and many of these amazing heart children have to repeat all the rituals I have mentioned yesterday and again today, time and time again for palliative procedures. However strong and brave you all think I am, that fact is something I will never recover from

Day 13 - Doctors
 I’m going to take this very ample opportunity to talk about the best doctors in the world - the ‘pink doctors’. On Rose Ward, there is the most incredible team of ladies who are there to gain the trust of these often terrified children, can calm them down and make them feel at home during the worst days of their life and are so kind, they make staying in hospital enjoyable. They are the play specialists - the most underrated and yet essential team in Ivy’s care. They get to know each child on a very personal basis and tailor their play care to suit them from baby sensory to playing Xbox with the older ones. They provide sticker charts and rewards when things aren’t happening very easily, go out and do the Christmas shop for every patient on the ward over the festive period and absolutely love a good chat when I’ve snuck in alone to do the crafts on offer that day. They’ve worked so hard to provide an environment that isn’t all scary and painful and instead, makes rose Ward an accommodating and fun place to be. I couldn’t do blood tests without them distracting Ivy with an iPad, Ivy wouldn’t get out of bed after fontan until one of them dragged a play kitchen into intensive care and they’ve even had us in to play when we’ve not even had an appointment. Of course, I am thankful for all doctors that have provided life-saving care for Ivy but none of that would matter if we didn’t have these teams behind us too helping us with real-life parts of this journey, never treating us as ‘just another patient’ and building friendships that will last forever for Ivy

Day 14 - Nurses
I am in complete awe and gratitude for anyone who chooses to work for the nhs, most especially for the nurses. It’s no secret that they are not paid enough for the incredible job they do during the most horrific hours each week and yet they still pour their heart and soul into what they do and the difference that makes to their patients is invaluable. Some of Ivy's nurses have not only become special people to us in hospital, they have become some of my most treasured friends. One nurse at the Brompton looked Ivy when she was just 3 days old and the familiarity of going in and still seeing her is truly lovely. When I was stuck in a small bedspace for 23 hours of the day, I’d have completely lost my marbles if it wasn’t for some of them. They are the same age as me, we share an awful lot of interests and they got that all important understanding of what was happening that 95% of my real life friends just didn’t get. They know how to look after the babies but they also know when we need a cuppa. They are the frontline force when something goes wrong and yet the first to give you the look to say everything’s going to be just fine. When the Hospital shop ran out of kinder eggs, it was a nurse who went to get one for ivy on her lunch break. When you’re left hanging around for answers it’s the nurses that will stand and fight your corner. When after 6 weeks I needed a night in my own bed, it was nurse who put Ivy to bed just as I would have. When Ivy enters rose ward, it’s a nurses name she shouts down the corridor in excitement who, if you ask her, is her best friend. We love you Roses, every single one of you x

You can read all posts about Ivy's heart here