Freya’s Story (20)

Monday 6th July 2015, 22:37pm

“Well little lady, what a day we’ve had today!  We got up and ready nice and early to make sure we were ready for when the ambulance came to take us to Leeds for your cardiology clinic appointment.  It took a while to come, and we were late for our appointment, but [the doctor] understood and fitted us in anyway.

The nurses weighed you and measured your height, and you had another ECG.  Then we went into [the doctor’s]  room where she did your echo.  When she started to measure the arteries she actually said out loud “Wow!” and I could see the numbers she was entering on the screen.   I tried not to second guess what she was going to tell me, but I knew the numbers looked lower than before and the highest number was a 4.  And that is when [the doctor] confirmed that there was no obvious ‘bulge’ and that the biggest measurement was 4mm, which had reduced from 5.2mm on the last scan she performed.  That is amazing in such a short space of time! She said that now the aneurysm measured only (only?) 4mm there was definitely no call for Warfarin.  I asked if it was worrying that they had started to shrink so soon, but she said that she wasn’t worried.  She also said that she had spoken to a colleague from Guy’s Hospital who agreed that the course of treatment she was following was appropriate.

I was so pleased with the result that I cried.  It was relief.  I had expected to hear that there had been no change – to hear that they had shrunk by 20% was more than I could have dreamed of.  I can’t help but worry about getting too excited, because I know that 4mm is still significant in a baby your age/size.  But it means that your aneurysms are now classified as small-medium which is great because it reduces the risk of complications like rupture.  I am going to dare to dream, no matter how loud that voice shouts in my head that we are not out of the woods yet.  I am going to allow myself to believe that you might just be a little miracle.

…You really are an amazing baby, Freya.  You are always smiling and laughing, and today was no exception.  You smiled through the ECG, and you ‘chatted’ away to [the doctor] whilst she was carrying out the echo…At one point you even grabbed the wand and tried to help her!  And when we were waiting [for an ambulance to take us back to Sheffield]...for 6 hours, you didn’t complain once.  You may have a lot of worrying things going on in that little body of yours, but you make up for it with everything else.  You radiate love and happiness.  You make me feel so proud; I am in complete awe.  This world became a brighter place the day you entered it, and every day you make it shine a little brighter.  I think you are really touching people’s hearts on this journey baby.  You are a joy to be around.  If there is anything good that we can take away from this awful experience it is that I get to spend all this time with you.  You make what should be a terrible ordeal bearable.  If it wasn’t for your sweet temperament, your cheeky chatter and that joyful smile, I am not sure how I would be coping.  I am still smiling through this pain because of you.  I am too busy loving every minute with you to worry about what might be.

…This journey has created a bond that no-one else will ever break.  I love you Peanut, I always will, and if you love me back even half as much as I love you I will be a lucky mummy indeed.

Keep fighting little one, we can beat this one together.”

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