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Freddie's Journey Home, The Rosie NICU, Cambridge (2026)

24/07/2026

⚽️ England might not have brought it home... but Freddie is! 🏡💙

After weeks of setbacks, scary moments, tears, tube dramas (many, many tube dramas 🤦🏼‍♀️) and wondering when we'd finally get to leave...

Freddie is coming home... ON MONDAY! 🥹💙

And here's the bit we're struggling to believe...

He's coming home on just 0.1L of oxygen!

For those who have followed Freddie's journey from the beginning, you'll know just how huge that is.

This little boy was born at 28+2 weeks, weighing just 1210 grams. He has spent more of his life in hospital than at home, battled chronic lung disease, undergone countless investigations, survived respiratory scares, and has taught us more about strength than we ever thought possible.

This admission has been one of the toughest yet. We've had frightening days where we didn't know what the next few hours would bring. We've celebrated tiny victories, changed feeding plans, learnt new skills, and continued fighting for the little boy who fights every single day himself.

He's still waiting for his GJ PEG and we've still got plenty of hurdles ahead, but today we're choosing to celebrate.

Because this time...

We're bringing him home. 🏡💙

To everyone who has followed Freddie's journey, sent messages, prayed or simply cheered him on from afar... thank you. You've carried us through some very dark days.

Now let's hope the only thing Freddie pulls out this week... is the front door on his way into his own home. 😂💙

Welcome home, little warrior. You've earned this one. 💙🏡

20/07/2026

It's been a little while.

Truthfully, we were all set to post a funny update about Freddie pulling out yet another NG tube... and then everything changed.

Freddie had a frightening respiratory episode that reminded us just how quickly things can change with chronic lung disease. It was one of those days no parent wants to relive, and for a while our only focus was getting him through it.

Thankfully, our little warrior is doing so much better now. 💙

Whilst we're still in hospital, we're finally looking forwards again instead of backwards.
One of our newest skills has come courtesy of the wonderful surgical nurses... introducing "Angel Arms." 😇

The name is incredibly ironic because, let's be honest, they're really designed to keep the little devil tube pullers under control! 😂

A muslin is gently wrapped around Freddie's arms and tucked underneath his body, so his own weight keeps his hands away from his face. It means he can't grab his oxygen or feeding tube every five minutes, but he can still kick his little legs, wriggle around and stay nice and cool in this sticky weather.

Who knew a muslin could become one of our most valuable parenting tools?

The team have also made a big decision and Freddie has now been placed on the waiting list for a GJ PEG.
At the moment, Freddie is fed through an NG tube that passes through his nose into his stomach. A GJ PEG is different. It's a feeding tube that goes directly through the tummy, with an extension that feeds into the small intestine, bypassing the stomach completely. The hope is that by avoiding the stomach, it will reduce his severe reflux and lower the risk of aspiration, helping to protect his lungs and making life a little more comfortable for him.

And now for the update we've been waiting so long to share...

Because Freddie's breathing has improved so much, his respiratory consultant has started trialling him on a lower oxygen flow, with the hope that this could be what he comes home on.

What a huge step forward, Freddie. 💙

The final piece of the puzzle is his weight. Our little man likes to keep everyone on their toes and has a habit of gaining, then losing, then gaining again. His dietitian is working incredibly hard to find the right balance of milk to help him grow steadily, whilst we begin introducing solids alongside his feeds.

We're not at the finish line just yet, but for the first time in a long time, it feels like we're walking towards it.
One tiny step at a time... just the way Freddie has always done things. 💙

10/07/2026

💙 Yesterday, Freddie laughed.

Not a little smile. Not a tiny giggle.

A proper, geeky, belly laugh.

It stopped us in our tracks.

For months we've watched Freddie fight to breathe, fight through hospital admissions, procedures, tubes, oxygen, medications and endless monitoring. Seeing his little personality finally starting to shine through reminded us that underneath it all, he's just a baby who deserves to enjoy being a baby.

We're still in hospital, but we're finally moving in the right direction again.

Freddie is back on continuous feeds, and we're already seeing a difference. His coughing is settling, his symptoms are easing, and for the first time in what feels like forever, we're getting glimpses of the happy little boy we've been waiting to meet.

If there's one thing this journey has taught us, it's that parents know their children.

Over the past 10 days, we felt like we had to keep repeating the same concerns. We knew something wasn't right, and it was incredibly difficult feeling as though our observations weren't carrying the same weight because they hadn't been documented. One comment that has stayed with us was, "If it's not recorded, it didn't happen."

We understand why good documentation matters—it absolutely does. But parents witness every cough, every unsettled night, every change in behaviour and every tiny improvement. That knowledge matters too.

We're incredibly grateful to the clinicians who have listened, adapted Freddie's treatment, and worked with us to get him back on the right path. We know the NHS is under immense pressure, and we have met so many dedicated professionals throughout Freddie's journey.

We just hope that sharing our experience encourages people to remember that parents aren't the opposition. We're part of the team.

Sometimes the biggest breakthrough starts with someone listening.

And yesterday, that breakthrough sounded like the sweetest little laugh. 💙

02/07/2026

💙 A Freddie update...

We're still in hospital.

After lots of discussions, the team decided to trial Freddie with an NJ tube instead of his usual NG tube.

For those wondering what the difference is...

🩵 An NG (nasogastric) tube goes through the nose into the stomach.

🩵 An NJ (nasojejunal) tube goes a little further, passing through the stomach and into the small intestine. This means milk bypasses the stomach altogether, reducing the chance of it coming back up.

The team are now thinking that severe acid reflux could be causing Freddie to aspirate. Aspiration is when milk or stomach contents accidentally enter the lungs instead of staying in the digestive system. Even tiny amounts can irritate the lungs, causing coughing, breathing difficulties and repeated chest problems.

The slower NJ feeds seemed to be helping... until Freddie reminded everyone that he has the strength of ten men and promptly pulled the NJ tube out himself. 🙄💪

The nurses were genuinely shocked, but if there's one thing Freddie has perfected, it's removing anything designed to help him!

Because replacing an NJ tube isn't straightforward, the team have gone back to his NG tube, but they're keeping the NJ feeding regime to see if his stomach can tolerate it.

At the moment, Freddie is having 37ml of milk per hour over 20 hours, followed by a 4-hour break. It's much slower than his usual feeding routine, giving his tummy more time to empty and hopefully reducing his reflux.

So far, he's coping well. 🤞

He's also started a new inhaler to help keep his airways open, and his omeprazole has been doubled and is now given morning and evening in the hope of getting his reflux under better control.

The next step is to gradually increase his NG feeds back towards his normal feeding schedule while keeping a close eye on how his breathing and coughing respond.

Only if he continues to cope will we be able to start making plans for coming home.

As always, Freddie continues to keep us all on our toes. In the last week alone he's managed to pull out 2 NG tubes, 1 NJ tube, 2 cannulas and approximately 376 oxygen prongs. 😂

Safe to say, if there were an Olympic event for removing life-saving equipment, he'd be bringing home the gold.

Despite keeping every nurse, doctor and parent on high alert, we're hopeful we're finally getting closer to understanding what's been causing him so many problems.

Thank you for continuing to cheer our little fighter on. Every message, every comment and every share means the world to us. Here's hoping the next update is the one where we're finally packing up and heading home. 💙

21/06/2026

Father's Day looked a little different this year 💙

Last Sunday, we finally brought Freddie home... again.

By Friday, we were back in hospital.

The reality is that Freddie's lungs are still causing him a lot of difficulties. His breathing has remained hard work, his cough is relentless, and despite everyone's best efforts, he just hasn't been able to cope at home right now.

It's frustrating. It's exhausting. And if we're honest, it's heartbreaking.

After spending 129 days in NICU, all we want is to be making memories at home as a family. Instead, we're spending Father's Day beside a hospital bed, watching monitors and waiting for answers.

On Tuesday, Freddie will undergo a Microlaryngobronchoscopy (MLB), where doctors will take a closer look at his airway and lungs to try and understand why he's struggling so much. We're hopeful this will give us some answers and help us find a way forward.

One thing Freddie continues to teach us is that progress isn't always measured in days at home or days in hospital. Sometimes progress is simply refusing to give up.

As difficult as this week has been, we're incredibly grateful for the team looking after him and determined to keep pushing for answers.

Here's hoping next Father's Day looks very different. 💙

13/06/2026

Introducing... the Freddie Burrito 🌯💙

One thing nobody tells you about having an oxygen-dependent baby is that they become surprisingly determined to remove the very things keeping them well.

Oxygen prongs? Pulled out.

NG tube? Don't even get us started.

Monitoring wires? Apparently offensive.

For reasons known only to Freddie, anything designed to help him breathe, eat or stay healthy must be removed at the earliest opportunity.

So, when all other options fail, we present the Freddie Burrito.

Wrapped up snug as a bug, with tiny arms safely contained, giving his oxygen prongs at least a fighting chance of staying where they belong.

The funny thing is, Freddie has absolutely no idea that we're all on the same team. While we're busy trying to keep oxygen going into his nose, he's working tirelessly to make sure it comes straight back out again.

Life with an ex-preemie means celebrating the little victories. Sometimes that's reducing oxygen. Sometimes it's a good bottle feed.

And sometimes it's making it a whole 20 minutes without hearing someone shout:

"He's pulled his prongs out again!" 🤦‍♀️😂 I think the record is 17 in 4 minutes....not that we were counting 🙄

Even the hospital staff have taken to the Freddie Burrito, as they just can't get anything done!

Anyone else have a tiny professional tube remover at home? 💙

12/06/2026

A little Freddie update 💙

Unfortunately, Freddie has been back in hospital since Monday with a respiratory infection.

What started as a normal cold quickly became more complicated because of Freddie's chronic lung disease. He developed a persistent cough and his oxygen levels dropped, meaning he needed extra support and monitoring in hospital.

This week he's needed anywhere between 0.3L and 1.0L of low flow oxygen. For comparison, at home Freddie is usually on 0.3L, so it's been a reminder of just how hard even a simple cold can hit little ones with vulnerable lungs.

He's currently being treated with antibiotics and has been having steroid nebulisers. As he improves, he is now trialling steroid inhalers, which we're hoping will help support his lungs moving forward.

It's been a worrying and exhausting week, but Freddie is showing us once again just how strong and determined he is. 💙

We're taking things one day at a time and hoping that if he continues in the right direction, he'll be back home where he belongs very soon.

27/05/2026

Sorry we’ve been a little quiet lately 💙

Home life with an oxygen dependant ex-preemie means learning a whole new normal.

It means medication schedules, oxygen checks, NG feeds, sleep studies, appointments, and pulling over at the side of the road because Freddie has pulled his prongs out again 🙄

It means constantly keeping an eye on all the little things most parents never have to think twice about.

It means celebrating progress that might seem tiny to others — like this picture of Freddie having a sleep study done at home, in the hope he can reduce his low flow oxygen from 0.3L down to 0.2L 🤞

It means learning as we go, finding our feet, and adjusting to the reality that bringing Freddie home was never going to mean the journey was over.

But it also means late night cuddles on our sofa instead of beside a hospital cot. It means hearing his sisters chatting away to him. It means doing all of this together, under one roof.

We’re still finding our rhythm, taking each day as it comes, and feeling so grateful to be navigating this chapter at home 💫

05/04/2026

There are moments in this journey that felt impossible to imagine… and today was one of them 💙

Freddie had his very first cuddle with his Great Grandad.

Four generations, held together in one quiet, beautiful moment 🥹

After more than 120 days in NICU, through all the uncertainty, the machines, the waiting… this is what we dreamed of. Not milestones on charts, but moments like this — home, safe, and surrounded by love.

There were times we didn’t know how or when we would get here. Parts of this journey that only we will ever truly understand.

But today, none of that mattered.

Today was about love, family, and everything we fought so hard for 🩵

A moment we will carry with us forever 💫

Freddie's Journey Home

24/07/2026

20/07/2026

10/07/2026

02/07/2026

21/06/2026

13/06/2026

12/06/2026

27/05/2026

05/04/2026

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