In | #heartmonthphotochallenge Week 3

February 2018

Day 15 - Change
Nothing stays the same for more than 5 minutes with Ivy’s condition and even when we are granted a rare period of stability, I am on tenterhooks to see how long it’ll be til the situation changes again. On the 4th of Feb, I wrote a lot about weight gain and how well Ivy was doing and despite being 15.7kg every single day for about a fortnight, she seemingly put a kilo on within 24 hours and I’ve been up half the night panicking about it, knowing full well that is unwanted fluid retention but I have no idea why - her meds haven’t changed so it’s something beyond my control. But this is normal. If it’s not weight change, it’s something else that is changing; medicine doses, behaviours, staff changes, rescheduled appointments, how far she is able to walk each day. These kind of everyday changes make it almost impossible to plan just about anything as they can come out of nowhere. We try to live life as if these things weren’t going on around us and lots of the time we can just get on as normal but it is no secret that I have to make the last minute changes too sometimes. And then you get the big changes. I gave up working to make sure Ivy was in the best possible hands in her early years but I have no idea if and when I’d ever be able to go back to work because her condition can change so quickly. Relationships with those who you thought would be around for ever quickly diminish when you have such an enormous change occur in your life. The diagnosises that you’ve just got your head around change and so does the path you found yourself on and you have to head in a totally different direction. What I’d give to change this life for her but then, never ever would I change the little girl that, ultimately, changed my life for the better 

Day 16 - Fear
Sorry I know it’s Friday but I’m going to be horribly blunt with today’s #heartmonthphotochallenge day 16 which is fear. Every single day I fear the day she is no longer with us and I’ll have to face a life without her

Day 17 - Courage
I lost count of the amount of times I was offered an abortion when I was pregnant with Ivy. The rules of medical reasoned abortions are different to others and you can terminate the pregnancy after the 24 week deadline. It was an agonising decision and one I didn’t want to make but I needed to make sure I had her best interests at heart and not my own. I underwent 2 amnios to make sure there was nothing genetically wrong with her (in which case they would have refused to operate on her and she would have died quite shortly after birth) and when they came back clear I wanted to give her the chance at life she so rightly deserved - if it wasn’t meant to be, I strongly believe I would have miscarried. I have to live with the fact that I chose this life for her in some ways and I hope in the future she doesn’t resent me for it all. I’ve never thought the decision I made was courageous before but I didn’t give up on her, and I knew from the very beginning I never would. Looking back now, I’m not sure how that 22 year old managed to find that courage to take it all on but I want to go back and thank her for it. Ivy is not just the sunshine in my life, she lights up every single room she walks into 

Day 18 - Hope
  • Hope is the magic glue that holds it all together. However upsetting things get, when you may think there’s not much to be positive about there is always, always hope. Hope that the doctors got it wrong, hope there is another doctor out there who can help, hope that medical advances happen whilst we’re in this weird limbo, hope she stays stable and hope that she just continues to defy all the odds just as she always has done. Hope she can go to nursery and make friends, hope she achieves everything she wants to, hope she discovers and loves new places and above all I just hope she is happy (pyjama day here today and weirdly enough, the bear of choice today is called Hopeful Heart)

Day 19 - Scar
What scar?!! one of my greatest worries (and you may have gathered by day 19 that I worry far more than I usually let on) is about how Ivy will cope when she begins to mix with others and realise she is different and the most obvious one of those is the line running down her chest. The constant reminder that she is different, but for all the right reasons. How she is the bravest, the strongest of them all and how underneath that scar lies the most beautiful heart. I will forever encourage her to be as proud of her zip as I am but kids can be so cruel and I can be fiercefully overprotective of her so I am so pleased that after multiple surgeries, they’ve done such a perfect job at stitching her back up that you can hardly see her scar at all

Day 20 - Grief
Social media has played an essential part in my support and coping with Ivys condition(s) and has provided unbelieveable amounts of information and relationships with parents going through similar but in these very small communities, loss is intensely regular. In a world where usually we’re deemed the ‘unlucky’ ones, were in fact the most lucky of them all. In the last couple of weeks, atleast 2 fellow heterotaxy warriors have passed away - one a member of our 100-odd European community and one in the US just a couple of days old and both hit horribly hard despite me not knowing either of them in the real world. I cannot begin to imagine the pain those parents are going through right now but, selfishly, with each and every one you see, you are reminded it could just of easily been you in their position. Some children we know have died from their heart defects, some of complications during the same operations as Ivy and some very worryingly have died from complications of simple childhood illnesses like the common cold or chicken pox and their little bodies could just not cope with it all. It is impossible to feel like life has turned out unfairly for us when I have been given time with my baby that so many parents are not lucky enough to have and I am eternally grateful for every single day that I have not suffered such a loss myself and have only ever had to grieve for a life I had once imagined for her

Day 21 - Family
I’m going to go off on an emotive tangent here and talk about expanding your family when you’ve had a child with complex medical needs. It’s a blog post I’d love to write and have tried many times to and just can’t, especially as I don’t want to sound smug now I have got my rainbow baby. I always knew I wanted to have children, plural, and having Ivy as a single parent and with the diagnosis she had never deterred me from wanting another but the decisions that go along with having another baby are heartbreaking. I began exploring genetics testing before I’d even met Michael to try and rule out some worry early on but Ivy was going through so much medically at the time I didn’t want to submit her to more unnecessarily. When we did get together, Michael took on the role as the most incredible and natural daddy from the word go and we both decided very early on that we’d like a second, obviously for ourselves but more importantly, we wanted a sibling for Ivy. We hoped a sibling would bring a bit more normality to her (and us!) inbetween hospital stays, we didn’t want her to grow up alone or isolated without anyone to talk to who understood what our life was like and we both have brothers of our own who we love very much and wanted the same for her. We began to think about logistics - we moved to Herts where I knew absolutely no one but transport links into the Brompton were much better, local hospitals far more accessible and my in-laws are just a few doors down all of which contributed to the decision, we needed to make sure Ivy's care did not suffer and in the event of an emergency that we had immediate support. I began to seek out other families who had been through similar and 2 ladies in particular played a huge part in our decision with their positive attitudes and then, after that was the obscene worry of ‘what if it happened again’. We decided against the genetics tests. When it both came down to it, our want for another baby surpassed any other emotion and if it did happen again, we already had proof we could handle the worst, we felt we could handle it again if we had to. But could I live with the guilt of subjecting another baby to a life in and out of hospital? I wasn’t sure. But we could guarantee this baby would be loved endlessly, so we started trying. Not to do things by halves, trying was a lovely distraction from awaiting a date for Ivy’s impending surgery. As with any family, ‘when’ is always a difficult one but we felt life was too short to wait around when we wanted a baby so badly. Being pregnant was preferable to having a new born during a major open heart surgery and had we waited until it was all over, we’d not have even started trying now. On 20th July, we got our 2 blue lines first thing in the morning and then I got up and travelled to London to meet Ivy’s surgeon - years of waiting for both these things and within hours, here they both were. We have always been assured that Ivy’s complications were purely bad luck and the minute I went to our gp to tell him our good news, he just looked at me and said ‘you know it won’t happen again’. Surely enough on the 12th October 2016, we had a scan at the Brompton (whilst Ivy was still inpatient, a month after her fontan). I was only 15 weeks pregnant and one of the fetal cardiologists who had cared for me and Ivy was able to give us the news that she could rule out any serious heart defects and honestly, it was the best moment of my whole life. The sense of relief in that moment was indescribable and after all the anxiety, worry and terrible time we were having post fontan, it meant that as a family, we finally had something to get excited about and look forward to. And the rest is history so they say. Ted has saved me on more occasions than you could ever imagine in his short life. It hasn’t all been easy with the large amounts of stays Ivy has had since he’s been here. I can’t recommended trying to juggle a baby in a pram and a post-anaesthetic 3 year old in a Ward bed space, or commuting to London 6am til 10pm every day because I couldn’t do the sleepovers with Ivy which has really broken me at times but Michael, my mum and the staff on rose did everything they could to help us with this. I still live with the guilt I mentioned above - he may not be ill but again, we chose for him to be living this life with us and he’s got to grow up knowing how poorly the sister he adores is, not having a parent at home some times because they are in hospital with caring for Ivy, sitting patiently in hospital waiting rooms alongside us. However at the end of it all, Ted is the best thing that ever happened to our family and the bond between the two of them is enough for me to go back and do it all again a million times over and I cannot believe that this is the family I am so so lucky to have. 

You can read all posts about Ivy's heart here