Eden’s heart journey

Eden’s heart journey This is a page to keep family and friends up to date with Eden and her heart journey

Day 4: We were all set to be discharged from PICU this morning after doctors were pleased with Edens progress over nigh...
21/11/2025

Day 4: We were all set to be discharged from PICU this morning after doctors were pleased with Edens progress over night.

Out of nowhere, Edens oxygen levels started to struggle. She’s been put on high flow oxygen to help with her lungs, which means we are staying in for a little longer.

She’s also been sedated to help her rest because she’s so agitated and distressed when she’s awake. Everything is hurting her. Shes hates every wire, tube and drain.

There is going to be bumps along the way, let’s hope this one passes quickly.

Day 3 - what a difference a day can make! ❤️❤️❤️
20/11/2025

Day 3 - what a difference a day can make! ❤️❤️❤️

Settled and safe!
19/11/2025

Settled and safe!

19/11/2025

Day 2: Eden went down to theatre around 8:30 this morning.

12 hours later we have just seen the surgeon and had the update that the operation has gone well. We are yet to see her in PICU.

The complications were huge for this surgery. I couldn’t be more grateful for the amazing team Eden has had today!

Tough day but Edens had it tougher!

Cant wait to see my baby.

Day 1 - what an absolute superstar Eden has been. So much trauma about coming back onto the ward but she’s settled quic...
18/11/2025

Day 1 - what an absolute superstar Eden has been. So much trauma about coming back onto the ward but she’s settled quickly and seen lots of familiar faces!!

She has clearly forgotten what lies ahead, but I’m guessing that’s a good thing!

Echo’s, ECG’s, bloods, cannulas all done with lots of poking and prodding! Consent forms signed after a long chat with her surgeon. All set and ready to go!

See you all on the other side!

P.s - thanks for all the messages of love and support!

❤️ We got THE PHONE CALL this week — Eden’s next open-heart surgery is booked for 19th November. 💔It’s one of those mome...
07/11/2025

❤️ We got THE PHONE CALL this week — Eden’s next open-heart surgery is booked for 19th November. 💔

It’s one of those moments where life just pauses. Plans go out the window, life gets a little more chaotic, but all that matters is making sure my brave girl is ready for the road ahead.

It’s hands down the hardest thing to go through as a family, but I will continue to smile through the fear and pray through the exhaustion.💖

The girls 11th birthday and Christmas is just around the corner, and while it’s not exactly the lead-up we’d imagined, we will continue to find joy where we can and hold onto hope every step of the way. One day, one heartbeat, one hug at a time.

Thanks to everyone keeping Eden in your thoughts — it truly means everything.

My brave girl has done it before, and she’ll do it again.

Alongside Edens other heart defects, she has something called an AVSD, Atrioventricular Septal Defect which means the wa...
28/09/2025

Alongside Edens other heart defects, she has something called an AVSD, Atrioventricular Septal Defect which means the walls and doors in her heart didn’t form the way they should have.

Instead of her having two separate valves (one for each side of the heart), she has just one big valve that doesn’t close tightly. Because of this blood flows the wrong way, making her heart work harder and sometimes sending too much blood to the lungs.

I sat down with Edens surgeon a few weeks ago and I have only just about got my head around the next steps for Eden. It turns out she is too young for a valve replacement as she has to wait until it grows to an adult size. The pressure and velocity of blood inside her heart it’s causing significant damage to the valve and her surgeon has suggested we intervene soon to desperately try and save the valve and prolong its life and prevent further damage until she can have the replacement. It may be that we continue this process over a few more years.

Heart surgery #5 incoming until then we just sit and wait for the phone call…. ❤️❤️❤️❤️❤️

19/08/2025

💔 Update on Eden - it’s been a while since I’ve posted.

It’s been 2 and a half years since Eden’s last surgery, and sadly it hasn’t worked the way we had all hoped. We found out last week that she’s now being placed back on the waiting list for another open heart procedure. This will be Eden’s 5th operation on her heart. 💔

As her mum, it’s heartbreaking and traumatic to watch my little girl endure this again and again, knowing I can’t take the pain away or change the outcome. The waiting, the worry, and the helplessness are overwhelming at times — but I continue to stay strong for her and for Darcey.

This journey affects every part of our lives: school, family time, friendships, work and even the everyday moments that should be simple and carefree. Yet through it all, Eden continues to show such courage and strength.

For us as a family, it’s going to be heartbreaking to see her go through this again, the trauma , and the long waiting list makes everything even more uncertain. We’re doing our best to stay strong, to give Eden as much joy as possible, and to keep her spirits high.

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