Florence and the Heart Machine

Florence and the Heart Machine This page is following the journey of Florence who has Hypoplastic Left Heart Syndrome. Ran by Mum

Best Daddy! Happy Father’s Day
21/06/2026

Best Daddy!

Happy Father’s Day

We want to say a huge thank you to the team at Coffee x Bakery x Plants for being so friendly and welcoming and sending ...
20/06/2026

We want to say a huge thank you to the team at Coffee x Bakery x Plants for being so friendly and welcoming and sending us a gift card to use. It’s fab it’s 5 minutes from the hospital so lovely for a little walk.

Hospital life can be so isolating. Days on your own in the same 4 walls under intense pressure of stress and worry. Some...
20/06/2026

Hospital life can be so isolating. Days on your own in the same 4 walls under intense pressure of stress and worry.
Sometimes you make friends with other parents and the fog lifts slightly. This stay we have found the wonderful Emma Frith and Sam and honestly they have made our admission that bit better. Thank you so much for the lovely gifts from yourselves, R and A, we really appreciate it!

Coffee??? ☕️

Thank you to the lovely people at HECK! for sending Florence and us some of her favourite goodies for when she gets home...
19/06/2026

Thank you to the lovely people at HECK! for sending Florence and us some of her favourite goodies for when she gets home (not yet!)

Week 9 Flo update:We’re still in hospital, back on the ward following a couple of days on PICU. The doctors are focusing...
16/06/2026

Week 9 Flo update:

We’re still in hospital, back on the ward following a couple of days on PICU. The doctors are focusing on medication balance at the moment and they haven’t got it quite right yet.

We have now had the results from her tests a while back, unfortunately Flo is unsuitable for the final operation (Fontan) due to high lung pressures.

This was disappointing and upsetting but not entirely unexpected, sadly.

Newcastle have accepted Flo to their routine transplant list. The typical waiting time is over 2 years, so we’re viewing it as a parallel process to keeping her healthy and stable. It’s good news she’s been accepted but the reality is not many tiny hearts become available, hence the wait.

No matter what life throws at her, this girl is so strong. Got a cheeky smile from her today 😍
14/06/2026

No matter what life throws at her, this girl is so strong. Got a cheeky smile from her today 😍

Flo update:Unfortunately Flo has been readmitted to PICU as she requires more breathing support and 1:1 care. The docto...
10/06/2026

Flo update:

Unfortunately Flo has been readmitted to PICU as she requires more breathing support and 1:1 care.

The doctors are currently trying to understand what’s happening but are a little stumped, other than it being heart related.

We’re into week 8 now and this is our 3rd re-admission to PICU - we’re all beyond tired, stressed and emotional.

Thank you to those who continue to send well wishes and gifts for Flo.

Flo update:We were making really good progress earlier this week, we managed to get off vapourtherm and wean down the ox...
07/06/2026

Flo update:

We were making really good progress earlier this week, we managed to get off vapourtherm and wean down the oxygen to almost nothing. We even managed a sanctioned visit to the coffee shop with Flo…

… however Friday her oxygen Sats plummeted again and they’ve found more fluid around her heart. This means she’s back on vapourtherm and it feels like a real step backwards.

We’re now back to trying to remove the fluid slowly again.

Little Flo update. Week 5 in hospital and I think we’re starting to struggle with being in the hospital. Flo is bored an...
29/05/2026

Little Flo update.

Week 5 in hospital and I think we’re starting to struggle with being in the hospital. Flo is bored and not eating properly, Claire is tired and emotional and Tom has been signed off work with stress.

We have had initial feedback from her tests and Leicester do not feel Flo’s currently a candidate for her next surgery. She will now be reviewed by Newcastle in the coming weeks to understand their opinion on next potential steps.

We always knew putting Flo through the tests might rule more out than in, sadly.

She has done really well weaning her high flow oxygen down and fingers crossed that continues to go well over the next few days.

We’ll update again once we know more.

Address

Burton Rd
Atherstone
CV9 3PX

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