Yesterday was the third anniversary of Jessica’s Norwood procedure. The surgery that day was long and difficult and shortly after Jessica had been stabilised on PICU following the surgery, she had to have her chest re-opened to remove a blood clot. I still vividly remember our terror as we waited in the parents accommodation, both of us convinced that we were about to lose her. What a huge blessing it is this year to be able to enjoy the build up to Christmas as a family of four and see our little miracle running around, removing baubles off the tree and trying to rearrange them!
This month I’m linking up my post about that first Christmas on the cardiac ward and Jessica’s latest update from her blog.
For those who haven’t encountered my heart families linky before, here is a summary of what it’s all about:
Heart to heart is a monthly link-up for heart families to share stories about their journeys. My eldest daughter Jessica has hypoplastic left heart syndrome and I started blogging about her heart journey a few weeks before she was born. Since her arrival, we have got to know other heart families, in person through our stays in the hospital, but also online through social media and blogging. It has been hugely helpful for us as a family to hear stories of other heart families which have helped give us hope and encouragement, but also made us realise that we are not alone in our struggles; that we are part of a community of other heart families. I started this linky in the hope that sharing stories would help other heart families out there too.
The linky opens on the 15th of each month and stays open for a week so there is plenty of time to share. You can share old posts or new posts, updates on how your heart child is progressing, poems, advice – whatever you like as long as it is related to life as a heart family. If you would like to add the code below to your post that would be great and please do visit other posts in the link too!
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Aww bless Jessica. She looks full of beans now helping decorate the Christmas tree. I think its wonderful you provide this support for many other parents out there. As always, a lovely post Louise.
Thank you – she loved helping decorate the Christmas tree. I think it helps sharing stories with other heart families – it has certainly helped us many times and hopefully this linky helps do the same for other families 🙂
My niece was born with a hole in her heart (and another heart problems) so I’m familiar with stories like yours. She’s almost 30 now and is one of the happiest people that I know.
Social media wasn’t about when my brother and his wife were going through the hardest parts (operations etc) but I know interaction with other parents on the hospital wards made things easier.
Your little girl has such a beautiful smile – it’s a great photo. X
Thank you – hope your niece is doing well, she sounds like a lovely person. The interaction on the ward was great when we were going through the various surgeries – the hospital that Jessica was under is particularly well set up to encourage interaction between heart families and it helped immensely. Social media is also great – it is easier to make contact with other parents who have children with a similar heart condition and share stories and experiences but it also does make you much more aware of the stories that don’t have happy endings too.