Our beautiful daughter Jessica was born in September 2011 with a severe heart defect called hypoplastic left heart syndrome. This was diagnosed at her 20 week scan and we were initially told that she was unlikely to be suitable for surgery. However, a pioneering in-utero operation at 28 weeks to enlarge a hole in her atrial septum was carried out and she was able to make it to term and get through her first open-heart surgery at just eight hours old. Jessica underwent five more surgeries during her life. Her final surgery - the Fontan procedure - took place in December 2017. She initially made a good recovery but sadly passed away suddenly on 14th April 2018 at the age of 6. This is the story of a little girl whose half a heart overflowed with love. She was, and will forever be, our little miracle and brought joy to all who knew her.

Thursday, 31 March 2016

Starting to think ahead

This month has felt like life has been sandwiched between hospital visits – with Jessica starting the month with a short stay in hospital due to having a chest infection, and the month ending with her cardiac check-up today. In between, there have been lots of happy moments – from the joy at seeing Jessica perform in her preschool Easter concert, to family days out and about, being back at Legoland again, enjoying Easter egg hunts at Cliveden and Black Park and eating far too much chocolate over the last week!


We met our new consultant Dr Szespesvary at this morning’s cardiac check-up. As far as we know, there doesn’t seem to be much change with Jessica’s heart function from her echo (although it is not so easy to tell given that the appointment was with a new consultant!) We have noticed over the last few months that Jessica is telling us more that she is “running out of breath” when we are out and about but we’re not quite sure whether she is actually tiring more or just better able to articulate it – she certainly seems to have plenty of energy most of the time. Her sats measured at 74 today but it was difficult to get a good reading and I am not completely convinced that this was an accurate measurement – her colour certainly seemed much better than I would expect if it was.



The plan at the moment is that Dr Szepesvary will meet with the team in Southampton and discuss the plan for moving forward with the next stage. As we already know, she will need to have a cardiac catheter to help provide more information about her current cardiac function and it may well be that that team decide that this will take place before our next planned appointment at Oxford, which is in four months’ time. Dr Szepesvary also mentioned the possibility that the Fontan may take place before Jessica starts school in September.



The mention of the Fontan possibly taking place in the next six months has left us feeling quite anxious and has brought the reality of it all back home again. As Michael has reminded me though, the team has not yet decided that this will be the case – the only things we know for sure at the moment are that the team will be discussing Jessica in a couple of weeks’ time and that we have a cardiac check-up booked for July. Other than that, we won’t know any more until the team meeting.


We’ll keep you updated on this when we know more.



Little Hearts Big Love
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2 comments:

  1. Claire1 April 2016 at 10:47

    Oh good luck to you all. I remember the pre Fontan and Fontan stage well. I know it's a worrying time but we did notice an improvement in Danny after his fontan. He was 4. Hope the next cardiac catheter goes well and as always we'll be thinking of you. Hugs xxx

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    1. Louise15 April 2016 at 08:25

      Thank you Claire - I have to keep reminding myself that all being well, there should be a big improvement after the Fontan. Hopefully we'll see you at the LHM Open Day tomorrow and will be thinking of you over the next week with Danny's surgery too xxx

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