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 18: Eden has been granted weekend leave!!! 🎉We are so ready to get out of here - just waiting on her medications fro...
05/12/2025

Day 18: Eden has been granted weekend leave!!! 🎉
We are so ready to get out of here - just waiting on her medications from the hospital pharmacy. Hopefully soon I’ll have all my girls under one roof again. We’re back Monday, but this is a positive step forward.

Today is also the anniversary of Eden’s very first heart surgery… 11 years ago today. ❤️ What a journey she’s had, just from a cardiac point of view alone. I’m unbelievably grateful for every single person who has been part of her care over the years.

I have really mixed emotions leaving for the weekend. As a parent, the hospital feels safe - but I also know Eden doesn’t thrive here. Home is where she comes back to life.

The plan for this weekend is simple: be together, breathe, and smile. And maybe later, a glass of wine on my own sofa to toast how far she’s come. 🥂💗

Day 16: Fun day yesterday for Eden.Hospital school and then cupcake making on the ward!
03/12/2025

Day 16: Fun day yesterday for Eden.

Hospital school and then cupcake making on the ward!

02/12/2025

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Day 15: the weekend whizzed past! I’ve felt a bit overwhelmed and the last two weeks have definitely caught up with me...
02/12/2025

Day 15: the weekend whizzed past! I’ve felt a bit overwhelmed and the last two weeks have definitely caught up with me. Spreading myself too thin and trying to stay positive.

Eden is on her feet and doing so well. Pain under control and weaned off all the big meds! She did however vomit up her NG tube Friday night so a whole weekend of struggling with nutrition meant that the feeding tube was placed in again last night.

The plan is to get nutrition under control and some weight gain then home possibly by the end of the week!

I say it every hour of every day but I am so proud of this kid! She’s just the BEST!

Day 10: Eden is settled and recovering well on her cardiac ward. Yesterday was a tough day adjusting from IV medicatio...
28/11/2025

Day 10: Eden is settled and recovering well on her cardiac ward. Yesterday was a tough day adjusting from IV medication to oral and managing pain and sickness.

Today, Eden looks and seems brighter in herself. Eyes open more and she has even managed a few smiles. Her tiara is firmly back on that head!

She engaged in a music therapy session from her bed today! So much noise was made they had to shut her bedroom door!

I love this girl so much! ❤️

DAY 8: As birthdays go …. this one turned out to be super special and one we will never forget.Sophie's Legacy couldn’t...
25/11/2025

DAY 8: As birthdays go …. this one turned out to be super special and one we will never forget.

Sophie's Legacy couldn’t have made it more magical for Eden today, I can’t thank them enough for arranging the most amazing cake, some birthday decorations and the most incredibly beautiful and emotional visit from Ariel the mermaid!

We were all an absolute mess in PICU! The visit from Edens all time fave princess filled my heart with so much joy and gave me such a spring in my step.

Eden (although the photos look like she has absolute zero interest) listened intently and raised her thumb up and down to answer all of Ariel’s questions. It was truly beautiful. We even got her sat on a chair!

And to top the day off she got a visit from her biggest fans (her sisters)! Darcey has had a lovely birthday and also been spoilt rotten and had a great day. We got to be together and that’s the most precious thing!

She’s having an extra sleepover in PICU tonight and hopeful for discharge tomorrow onto her cardiac ward!

Day 7: Surgery went well yesterday morning but Eden ended up being placed back on a ventilator. Today, she ticked lots o...
24/11/2025

Day 7: Surgery went well yesterday morning but Eden ended up being placed back on a ventilator.

Today, she ticked lots of boxes. She needed to have the remaining chest drains removed, some physio on her chest etc and back to breathing on her own with minimum oxygen.

She seems so much calmer in herself!

As I left her this evening the nurses were busy creating birthday decorations! ❤️🎈❤️🎈❤️

Early Sunday morning surgery has set the tone of the day. She went down around 8:30am.They have reopened her chest and ...
23/11/2025

Early Sunday morning surgery has set the tone of the day. She went down around 8:30am.

They have reopened her chest and removed the caught drain. Everything else has to stay in. So less than 12 hours of being evicted from PICU she is heading back in again after this surgery.

This comes with more complications and healing, going back on a ventilator and then coming back off. More distress and huge anxiety.

It’s the girl’s birthdays on Tuesday! I’m desperate to get her well enough to celebrate an incredible 11 years!

Feeling a bit broken today and emotionally drained - but this amazing kid is made of strong stuff and we are a strong family with an amazing team of friends and family (and medical staff) behind us!

Day 5 - I hate to say it but we’ve had another set back! The plan this morning was to get one chest drain out that had ...
22/11/2025

Day 5 - I hate to say it but we’ve had another set back!

The plan this morning was to get one chest drain out that had slowed down under sedation. Turns out it’s stuck. Several attempts were made but it’s definitely stuck. Sounds like it has become trapped/caught when closing her chest after surgery.

She is now on the priority list for surgery in the morning to get all the drains removed under anaesthesic. They will also take the pacing wires and all the other bits out. Hopefully she will feel better, be calmer and pain will be easier for her to tolerate.

Also, I got to squeeze my other babies who have come to stay for the weekend and they got to see their sister.

One step forward, two steps back.

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!

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