Phoebe’s Journey

✨🧠 Phoebe’s beautiful brain 🧠✨

We went for Phoebe’s neurosurgery check up this morning and got to compare her first and most recent CT scans. It’s the most beautiful picture I’ve ever looked at in all my life, and I’m so proud of my little hero 💗

The scan image on the left is when Phoebe was 2 days old, one day before she had her shunt surgery. Her brain was mostly fluid with minimal tissue pushed toward the front edges.

The scan image on the right was taken 2 weeks ago and shows how much Phoebe’s brain tissue has folded and developed over the past 9 months. There’s still a fair amount of fluid (the darker patches) but her neurosurgeon has said she would have expected there to be more fluid, so she’s very impressed with how much her brain has flourished, and she’s really happy with how Phoebe is developing in herself.

She still has the porencephalic cyst in the left hemisphere at the back of her head, but we won’t know how this is going to affect her until her brain reaches a more permanent state over the next few years, but most likely it will affect her cortical vision due to its location, but we’ve been told it’s very unlikely that she’ll go blind because it is only in one hemisphere and the brain is sophisticated enough to compensate, and she’s not demonstrated any issues with her vision as yet.

To think that this time last year, we were having consultations with doctors who were telling us that the chances were that Phoebe wouldn’t survive, and if she did she’d never achieve anything. Fast forward 9 months and she’s just proved them all wrong so many times and I’m SO unbelievably proud 💗🧠

One year ago today, I went for our 20 week scan.

I thought the biggest news of the day was going to be finding out whether we were having a boy or a girl. Instead, we found out that Phoebe had excessive fluid on her brain and were told to prepare ourselves for her to not survive, and if she did then “she’ll never be able to do anything, she’ll never live independently, and at best she’ll just sit there and smile at you”.

Over the next few months, as Phoebe grew in the womb, her condition worsened to the point that her ventricles were 95mm (L) and 30mm+ (R) at birth, when both are supposed to be under 10mm.

In her first 10 weeks of life she had two major surgeries on her brain and belly to insert/correct her shunt and she’s not stopped smiling since.

I always knew she was strong when I was pregnant with her, but I had no idea just how powerful, courageous, fierce, independent, beautiful, funny and resilient our warrior Phoebe was until we met her.

So, here we are, exactly a year later after what can only be described as an emotional rollercoaster, with an 8 month old who is so full of life, love and attitude, and is absolutely everything we were told she would never be and more 💗💗💗

✨ Keep proving them wrong Phoebe ✨

Today, we went to see Phoebe’s paediatrician. The referral was sent through back in December as her neurosurgeons stressed the importance of monitoring Phoebe’s development in her first year of life. We had to wait a few months (thanks Covid!) but it was well worth the wait!

✨ Phoebe’s head circumference has remained the same since December which means her shunt is doing its job!

✨ Aside from her being limited by the size and weight of her head, we’ve been told today that she is spot on for her age for development - and she’s actually advanced in some areas like her speech/sounds and coordination.

✨ We’ve been told she has extremely strong legs and her body is symmetrical - this is important as when there’s extra fluid on the brain (especially on one side of the brain like Phoebe had), it can affect one side of the body more so than the other, but she seems to be proving everyone wrong still.

🌻 The one thing the paediatrician said that really stood out to me though, wasn’t about Phoebe’s physical abilities. It was a comment on her character;

She told me that she can tell Phoebe is very strong, determined and motivated.

Hearing that was one of the proudest moments on this journey, as physical capabilities can change through life, but knowing we are raising a beautiful girl who’s strength and determination has emanated from her little body from the moment she was born is incredibly wholesome🌻

Here’s some photos of our little warrior doing her thing 🌸💗

Someone’s getting very good at tummy time! Phoebe has started using her arms to push herself up so she should be crawling in no time 😂🥰

Showing off how good she is at holding her head up! 💗💛💜

🎉🎉🎉 This strong little lady can now sit in her chair and hold her head up without any support! 🥺 so so proud of our little warrior and how far she’s come 💗💜 🎉🎉🎉

So so so proud of our little superstar! We started physio two weeks ago to help Phoebe in all areas but especially to help her to lift her head and she had another session this morning and she was all smiles ready for some tummy time fun!

These are photos of her progress so far; we’ve got one of her smiling this morning because she’s just the happiest little girl, 3 photos from a couple of days ago where she’s actually lifting and holding her head herself and the last photos are just to show how far she’s progressed in the past few weeks.

She also had her shunt setting adjusted last week in Alder Hey because her head circumference was creeping up slightly but since they lowered it down to 80 from 100 her head has come down by a whole centimetre!!!!!! So it’s no wonder she’s getting better at lifting it!

She’s so strong and perfect in every way, there really is never a dull moment with this warrior princess around 💪🏼👑

This is so amazing!!! We’ve hit just over 25% of the target in 48 hours! Thank you to everyone who has donated so far, it really means so much ♥️

For anyone that hasn’t seen this - my sister is doing a Skydive in April to raise money for SHINE charity! They help individuals with Hydrocephalus and/or Spina Bifida and they’ve been so incredible with us and Phoebe so far, she had her first physio session over zoom last week and I’ve already seen massive improvements with her. Any money raised helps them continue to provide support like this so please donate or share if you can!! Thank you 💗💗💗

Maria's Tandem Skydive for SHINE Help Maria Taylor raise money to support SHINE

Hi everyone! My sister is doing a skydive in April to raise money for SHINE charity - they’re the charity for individuals with hydrocephalus and/or spina bifida. They’ve been amazing with Phoebe so far, so this is one of the ways we intend to give back to them throughout her life. Please have a look and donate if you can, and if you can’t donate please consider sharing instead! Thank you!

Maria's Tandem Skydive for SHINE Help Maria Taylor raise money to support SHINE

Hi everyone!

I’ve not updated Phoebe’s page in the past 3 weeks because let’s be honest, we’re in a lockdown and there’s absolutely nothing to do outside of the house!

In the past three weeks phoebe has had an MRI on her brain and spine (brain to check her shunt is working fine with the new valve - it is woohoo! And her spine because she has a deviated spinal cleft but there’s no concerns with it at present, it was just to check!) so she’s doing great and the neurosurgeon is very happy with her development!

The most exciting thing that’s happened in our home this week is that we finally got our new sofas delivered today. They’re firm so are perfect for helping phoebe practice sitting up, so of course she got to test them out first - and she looks like a little queen on her throne 😂

So, we’ve spent today practicing sitting up and playing on the play mat and it looks like Miss Phoebe has had a lot of fun. Thank goodness she’s easily entertained because this lockdown is testing my patience 😳😂

Happy New Year to all of Phoebe’s Fans 😂😂😂

We’ve spent yesterday and today practising tummy time thanks to the amazing kick and play mat Phoebe got for Christmas. She absolutely loves the piano, she’s not stopped kicking it!

Every day she’s getting stronger with lifting her head and controlling it, so now we’re working towards lifting it from laying down flat. We saw the nurse practitioner this week who said Phoebe is incredibly strong, she’s already putting her feet on my legs and pushing her body up, and because she’s so determined to lift her head, she’s probably got the strongest neck in the north west 😂😂

Talk about mad Friday!

We were discharged from hospital with Phoebe yesterday but ended up back in A&E with her today as I thought her shunt was over draining 😂🙈

She seemed okay up until 10pm last night; she didn’t feed as much as she normally does and she was sick after her feed which is out of character for her. The same happened when she woke up at 2/3am and then when she woke up at 8.30am she gulped down 5oz but ended up being sick a fair bit. I noticed her fontanelle had sunken in and looked like a bird bath which is what made me think her shunt was over draining.

The neurosurgeon said our instincts were right and we did the right thing by bringing her in as it was over draining but we noticed very early so they were able to adjust the setting and send us home!

Originally, she had an M Blue 5 set at 20 which was adjusted down to 0 on 1st December but obviously this wasn’t working properly and they replaced the valve this week with a Codman Micro Hakim set at 80. After today it’s been adjusted up to 120 and she seems much better already (although slightly angry that she keeps getting prodded and poked).

She was so happy and awake after the setting was adjusted that I stopped by the Christmas tree with her again so she could have a look before we went home and her little face lit up in amazement - it’s just a shame daddy wasn’t allowed to be there to see it!

Fingers crossed she’s okay and we’re away from hospitals until our check up on Tuesday because I am one very exhausted mummy!

Today we saw Phoebe’s neurosurgeon who’s said she’s not too happy that her head circumference has increased again so she’s been scheduled to have emergency surgery tomorrow! Last week her head was 46.8cm and today it measured 47.6cm and ideally, it should be around 43/44cm by now.

Thankfully, her shunt does work and it’s only the valve that needs changing, as it’s not draining enough fluid which is causing her head to bulge. So they will only have to operate on her brain, and not her stomach where the fluid is redirected to.

The surgery will be at 1pm and should take around an hour. Hopefully, if all goes well, she should only be in for a night or two.

It’s so sad that our tiny girl has to have a second operation on her brain when she’s only 9 weeks old, but if anyone is strong enough, fierce enough and ready to take the world by storm, it’s our Phoebe.

You’ve got this our little warrior ♥️💪🏼👊🏼

Another lovely story about Phoebe’s Journey ♥️

Miracle baby 'proved everyone wrong' by defying doctors Medics were so worried about baby Phoebe that around 20 doctors, nurses and surgeons were on hand for the birth

Phoebe was a very brave girl today - we spent 4 hours at the hospital this morning having her MRI and having her shunt setting adjusted, but at least she looked absolutely adorable in pink 💗 (even if she was angry at me for waking her up to get her in the car before she was ready to get up - not a morning person just like mummy!) 😂

She looked so cute and cosy in the MRI scanner, she was half asleep half awake when she first went in but I think she must have liked the noises because she lay still and just kept her eyes wide open wondering what was going on.

After the scan we saw her neurosurgeon who said she would have been really happy with how everything looks, if her head circumference hadn’t increased - since the start of November her head has increased from 44cm to 47cm. Even though the shunt has been working and her ventricles have gotten smaller, it’s been under draining which is why her head has increased. They changed the setting on the shunt and asked me to wait with phoebe for an hour to see if her fontanelle got softer as this would indicate that the shunt is draining and there’s no blockage.

I spent what felt like the longest hour ever waiting in the Atrium with her, constantly checking her soft spot to see if it had softened, because we obviously didn’t want a blockage and another operation to fix it.

We eventually went back up and they said that it had gone softer but not drastically, so they adjusted the setting even lower and let us go home.

🎉🎉 The most amazing news from today, though, is that the MRI has shown that her brain tissue is folding and developing in the spaces where the fluid used to be, which means as the fluid is draining, her brain is growing and we’ve both never been more happy or proud 🎉🎉

We’re keeping a close eye on her because she’s had to adjust to a big pressure change in her head but she’s been her usual amazing self so far. If anything, because there’s less pressure in her head now, she’s been more alert and playful today!!

Phoebe had her hearing test on Tuesday! She had to have a specialist test because she has a shunt but she did absolutely amazing. She was so well behaved and went to sleep when they were gently rubbing her head when they were putting the sensors on. She looked SO cute!

We’ve been told that she has perfect hearing and that they have no reason to believe she’d have any issues with her hearing going forward so that’s the first hurdle crossed off the list and one less thing to worry about!

Next on the list is her MRI to see if her ventricles have shrunk and to make sure the shunt is doing its job! 🤞🏼

✨ Phoebe’s Journey started on February 13th 2020 ✨

I still remember the day we found out so vividly, and this is one of my favourite stories to tell. I was on my fourth and final 12 hour shift of the week and I didn’t feel myself at all. I was questioning whether I could be pregnant but didn’t want to get my hopes up so I put it to the back of my mind.

I finished work at 6.30pm and Frank and I went straight to the gym (lol) so we could justify having bacon butties when we got home. I remember him trying to get me to do a spin class with him and I just started crying my eyes out in the middle of the gym because I didn’t want to. It’s not out of the ordinary for me to be a drama queen but to spend 45 minutes on a treadmill doing an uphill walk whilst sniffling and looking over my shoulder into the spin class room was a bit much 😂

After Frank finished his class I asked him if we could get a pregnancy test on the way home. He was desperate to get home and have his bacon butties but we went to the shop anyway.

We got home and I ran straight upstairs to do the test while Frank plonked himself in front of the TV to watch Sky Sports. The few minutes I waited for the test felt like FOREVER. I saw the faint positive line and didn’t believe it was real, so I did what I always do and messaged my sister Melissa and asked if she could see it too or if I was just imagining it, because I didn’t want to tell Frank I was pregnant if I wasn’t. She told me she could see it too and I should do the second test in the morning (I didn’t wait I did it an hour later 😂)

I went downstairs to tell Frank (keep in mind I’d been upstairs about half an hour at this point), I showed him the test and said “it’s positive, we’re having a baby” and no word of a lie he went “sound, can I have my bacon butties now?” I laughed and said “Frank I’ve just told you we’re having a baby, did you hear me?” And he responded with arguably the funniest thing I’ve ever heard: “yes, but the baby won’t be here for 9 months and I’m hungry now” 😂😂😂

I’d say that was his first dad joke, but he really wasn’t joking. He did eventually get his bacon butties, and after what felt like a lifetime of waiting, nearly 8 months later, our little miracle Phoebe finally made her grand entrance 💗✨

Hi everyone! I thought I’d create a page that’s just for Phoebe so I can write down the story so far and any news going forward. As much as I enjoy sharing our gorgeous girl on my page, I thought it’d be nice to have a page that’s just for her, especially so she can look back on it all when she’s older ♥️