From the heart

Our journey as a heart family has been very much at the forefront of my mind recently. Jessica had her cardiac check-up last week and whilst her heart function is currently looking good, the team are now starting to consider her next major surgery and when this is likely to take place. It would be better to avoid it taking place during the winter months as there tends to be more pressure on healthcare services, and PICU (paediatric intensive care) beds then and so the team need to decide whether Jessica’s surgery will take place this year or whether they think she will be able to wait until spring next year.

From the heart - Little Hearts, Big LoveWhilst of course I am constantly aware of Jessica’s heart condition, it is not something that consciously dominates my thoughts on a day-to-day basis. The routine of giving her medication several times a day, of keeping a closer eye on her with regards to colour and energy levels – all these are part of our normal. We try not to think about things too much, not looking ahead, concentrating on the here and now rather than the potentially scary and uncertain future ahead. Talking about the next surgery makes it all horribly real though – the knowledge that we will be back in hospital again and I will place my child’s life in the hands of the surgeons once more. It is a terrifying thought and yet I know I have to do it in order to help her survive.

 

Looking back across our journey so far, I know that we have been incredibly blessed to have made it this far. There is so much that I am thankful for:

  • The sonographer who detected Jessica’s heart condition at her 20 week scan
  • The wonderful team who were willing to take a risk and perform an in-utero procedure that they’d never done before in order to give Jessica a chance to survive and be suitable for surgery
  • The amazing surgeon and the team that performed the three open-heart surgeries that Jessica has had to date plus those involved in the five cardiac catheter procedures she has had
  • All the wonderful staff on PICU and the cardiac ward who have cared for Jessica
  • The love, support and prayers of friends and family which have helped sustain us
  • The prayers and support of those who were strangers to us but who had encountered our story through friends of friends.
  • Faith and the belief that God was bigger than it all which gave me the strength to keep going through the darkest moments.
  • The love and support of my wonderful hubby who has walked every step of this journey beside me.
  • The heart family community – knowing that we are not alone in our journey.
  • Being blessed with three and a half wonderful years so far with our little miracle and the blessing of her heart-healthy little sister. I pray that we will have many more to come.

From the heart - Little Hearts, Big Love

February is National Heart Month – a month of raising awareness of congenital heart defects (CHDs) – and another reason why our heart journey has been at the forefront of my mind. I recently posted about the charity Tiny Tickers, who work to improve early detection rates for CHDs as well as help support heart families, and their fundraising campaign for Heart Week which runs from 7th – 14th February. Over the next few weeks, I’ll be posting a lot about CHDs – sharing facts and figures, and aspects of life as a heart family, as well as sharing some stories from other heart families who will be guest posting on my blog. I hope you can join me for some of my journey through the CHD world.

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14 thoughts on “From the heart

  1. It sounds like Jessica has had wonderful care, and that although you have surgery in the future, things are positive.
    I know how important these things are, my cousin has had to have lots of heart surgeries including open heart surgery when she was 8 and things are still not 100% sorted for her, but she is getting there.
    M also has issues with his heart which are being monitored but thankfully he hasn’t needed surgery to date. It is astonishing to think of the number of families that this type of thing effects, but you do a wonderful job to raise awesome on your blog, and I have made sure my pregnant SIL has had a look at the post about the 20 week scan, which she is due for in a couple of weeks.

    1. Thank you Jenni, glad to hear that things are getting there for your cousin and hope M continues to be okay too. So glad that you have shared the post about the 20 week scan for your SIL – it’s so important to know what questions to ask to try and improve the chances of any problems being detected. Hope all goes well with her scan x

  2. I’m just the same, Iive from appointment to appointment…her next one is March and I can’t make plans beyond that date because I don’t know what’s going to happen. Jessica has done amazingly and I hope we’re just as lucky with Martha xxx

  3. So glad to read that your daughter is doing well. Your first picture really choked me up. But I know (from when my daughter was born) that you see past all the tubes and wires when it happens and just see your beautiful baby.

    1. Thank you – so true that you just see past all the tubes and wires at the time and although it is a shock when you see them like that for the first time, the tubes almost become invisible after a while.

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