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

Hard one for me to process this week…As soon as school finished on Tuesday, we went straight into a planned hospital adm...
25/07/2026

Hard one for me to process this week…

As soon as school finished on Tuesday, we went straight into a planned hospital admission for Darcey on Wednesday. She had reached the end of life of her Gastrostomy, so it needed replacing, and while she was under, the dental team also checked all of her teeth.

There was so much past trauma surrounding this admission, but Darcey amazed us all. She was incredibly brave, resilient, and handled everything so much better than I could have hoped.

She has shown signs of sensory shutdown, but one huge positive is that she has overcome her food refusal and has started eating again. Some of you may remember that after her last hospital admission, it took nearly two years before Darcey was able to eat orally again, and speak so this feels like a massive step forward.

While I stayed by Darcey’s side in hospital, Eden stayed at home to continue her treatment through her PICC line and hopefully enjoy the start of her school holidays. Little did I know she was feeling really unwell.

Just a few hours after bringing Darcey home, I found myself in the back of an ambulance with Eden, heading straight back to hospital.

It feels like I’ve barely had a chance to catch my breath this week, but I’m slowly coming to terms that this is life with twins who have complex medical needs. One child home, another admitted, constantly juggling the unknowns.

We are keeping ourselves entertained, fighting the boredom of hospital life over the weekend and hoping my girls are all back together under one roof very soon.

❤️❤️❤️
14/07/2026

❤️❤️❤️

Hospital update … because apparently we just can’t stay away….. Although Eden does an incredible job of pretending she’s...
13/07/2026

Hospital update … because apparently we just can’t stay away…..

Although Eden does an incredible job of pretending she’s absolutely fine, she hasn’t been too well behind the scenes. These constant recurring infections and soaring temperatures have earned us a place on the emergency list for a bronchoscopy and a PICC line. Admitted yesterday for surgery today.

The plan is two weeks of intensive IV antibiotics, and we’re really hoping this finally kicks whatever unwanted guest has decided to make itself at home. The fluid around her lungs is looking small so no need for a plural tap or drain!

The only frustrating part is that we couldn’t have done all of this two weeks ago while she was already in hospital having her gastrostomy fitted. It would’ve saved us all another hospital stay… but apparently collecting hospital admissions is our latest hobby.

As always, Eden continues to amaze us. She keeps smiling, keeps fighting, and somehow manages to make everyone around her smile too.

Home and with a tube-free face!!She’s struggling with pain, and we’re adjusting to a new way of being fed, but through e...
18/06/2026

Home and with a tube-free face!!

She’s struggling with pain, and we’re adjusting to a new way of being fed, but through every procedure, every challenge, and every change, she keeps showing us what true resilience looks like.

Life as a medically complex child isn’t always easy, but she faces every challenge with so much strength and determination. I’m so proud of how far she’s come and the courage she shows every single day.

One day at a time, brave girl.

Take two of Eden’s gastrostomy surgery! After a very long day, we are finally out the other side. The surgery went ahead...
16/06/2026

Take two of Eden’s gastrostomy surgery!

After a very long day, we are finally out the other side. The surgery went ahead as planned and most importantly, her face is now free! It has been a journey getting to this point, so seeing her come through the operation and finally have this step behind her is a huge relief.

She’s feeling very sore and is dealing with some sickness, so we’re keeping her comfortable, managing her pain, and making sure she gets plenty of rest. Recovery is never easy for Eden but she continues to amaze me with how strong and resilient she is.

I’m hoping for a quiet, uneventful night back on the ward so she can recover properly. If everything continues to go well overnight and tomorrow morning and she tolerates her feeds, the plan is for us to head home tomorrow.

Home with the NG tube firmly still on her face and a big bag of antibiotics! Plan is to get a new date in the next few ...
22/05/2026

Home with the NG tube firmly still on her face and a big bag of antibiotics!

Plan is to get a new date in the next few weeks and try again!

What a week!

20/05/2026

Surgery cancelled as Eden has a high temperature!

Bloods, X-rays, ultrasounds done so we will see what tomorrow brings!

Thanks for all the messages of support! Will keep you updated. ###

Edit: just been told they are only planning on taking a sample of the chest fluid and testing to see what it is so I fe...
20/05/2026

Edit: just been told they are only planning on taking a sample of the chest fluid and testing to see what it is so I feel like this is not the end of the fluid problem.

Today my precious little lady is back in hospital for more surgery.

After months of struggling with a large pleural effusion, the plan has now been made to drain the fluid from her chest and while she’s under general anaesthetic, they will also be replacing her NG tube with a gastrostomy.

We’re hopeful this will help her feel more comfortable and give her a better quality of life. And save the weekly hospital ultrasounds and tests. Eden is seriously fed up of being interfered with! Hospital trauma is real! It’s hard to believe she’s been battling this for 6 months already.

Thankfully we have the best team to support us at hospital and we have half term to rest and recover! You never know after this she could return to school more and finish her final year of Primary on a high!

Sorry for the radio silence everyone but just an update!We really thought Eden’s cardiac journey had come to a bit of an...
18/03/2026

Sorry for the radio silence everyone but just an update!

We really thought Eden’s cardiac journey had come to a bit of an end for a while and that we were finally getting a little break from hospital life… but it turns out the road isn’t quite finished yet.

Since December, we’ve been quietly in and out of outpatients dealing with some lingering pulmonary effusions that just haven’t wanted to shift, despite trying different meds. After a few weeks off diuretics, things have unfortunately took a turn and developed into an infection.

We found out the hard way when what was meant to be a routine check yesterday turned into an unexpected admission, and a few new changes in her heart health. A 24 hour heart monitor hopefully giving some better answers and IV medication to help shift the infection.

It’s been a bit of a rollercoaster again, but Eden continues to amaze us every single day with her strength and resilience.

Always staying hopeful, trusting the process, and focusing on getting her back to full health and home before the weekend!

01/01/2026

Happy New Year everyone!

Just a massive shout-out for all the love, support, messages, lifts, snacks, and general survival assistance that we have received this year.

It’s been another character building 2025! we have practically earned a loyalty card for the hospital, but this video proves we did still manage to have some joy and make some pretty special memories in between.

Bring it on, 2026. I’m rested* and ready!
(*Emotionally. Physically… questionable.)

Address

Southampton

Website

Alerts

Be the first to know and let us send you an email when Eden’s heart journey posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category