Care for Rare


October 2015

Happy Halloween


Larry’s first Halloween 💚🎃💚

The blood sugars were fine thanks to a jelly snake or two 😉

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Baby Brain Memoirs

‘Penelope and Friends’ update

The reason I’ve been a tad quiet on the blog front is down to organising NICU bags for ‘Penelope and Friends’ (part of Mylo and Friends).

Lovely bibs from Nüby match some of the scratch mitts we received
We have received the most generous package from Nüby full of bottles and bibs to help parents who have babies in NICU with NG tubes establishing feeding. And, a package from NUK with sachets of bottle wash that will come in handy.

Lots of progress has been made on the logo, thanks to a very kind friend, but now I have the difficult task of deciding which one to use! (I would appreciate any opinions in the comments please ☺️).

I’ve also received the first of the bonding squares that have been kindly made by a great bunch of knitters we have on board. And nappies, scratch mitts and cotton wool have started flooding in too!

So, a great couple of weeks for Penelope and Friends. Next on the list is finding a printer ☺️
Big THANK YOU to all involved so far! Can’t wait to see this project take off, soon. 🚀🚀🚀
If you would like to get involved please contact me on the email address found in the Contact section. Thank you.

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Silent Sunday :)

This guy… 😘👏🏼😘
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I Wonder When You’ll Let Me Forget

This week I am sharing a blog post from

When I came across this post it really struck a chord with me and sums up precisely how I felt about NICU. It’s a completely bitter sweet place, full of fond memories such as Penelope’s first smile, first bath and the realisation that we would actually have a baby to take home. But it’s also place to some of the darkest memories I will ever carry, seeing her nearly die and becoming scarred after her life saving ECMO (a small price to pay) and hours spent watching monitors and trying to get her on feeds so the NG tube could come out; amongst that were many long days worrying endlessly about blood sugars. It became all we would know for over six weeks, enough time to have an everlasting impression on a person.

So without further ado, here is ‘I wonder when you’ll let me forget’…

“The journey to this place is etched in my memory. I’ve taken it so many times before that it’s almost instinctive, too familiar.

Sat in the car park, I remember when I last parked in this bay. It was always my favourite, a treat when I bagged it. It felt like ‘mine’. I wonder who owns it now? Or if it’s waited patiently for my return.
The walk along the corridor makes my legs turn to jelly. I struggle to recognise whether this is through dread, anxiety or good old familiarity. I study the walls, the surroundings are unchanged. I study my feelings, they seem perpetual.
I wonder whether I’ll ever forget…I wonder when you’ll let me.
You’re 11 months old already, some days I can’t quite digest that. I hoped these days were over. I prayed that we’d stayed here for the last time. You’re usually so strong, I watch you battle to breathe and notice you’re still smiling. It makes it hard for me to understand how much pain you’re in. Are you hurting baby girl? Or are you accustomed? Do you feel the strain? Are you becoming tired?
I glance over at your cot from the red plastic seat and watch you sleep. The beeps and twinges of the monitor sing you a lullaby, the first song you listened to, the noise you let comfort you at the start. For a moment, I’m taken back, back to the days when all I could do was watch you sleep. The same sounds caress my ears. I know them intuitively now, I no longer need to check to see what they mean. Your heart rate is high, your oxygen levels are low. It’s okay though, you’re wiggling. The drones will subside as your body relaxes.
I inhale the air and the scent lingers in my nostrils. This place feels so conflicting. It’s tainted with trepidation, splattered with hope. It’s where I first held you, first fed you, first bathed you. It was your home and where I spent most of my time. The memories are bitter sweet. It was so hard when you stayed here, I ached for you to come home. Yet, our time here wasn’t painful. I watched you flourish and grow, I witnessed a miracle and spent most days insanely grateful.
Seeing you here again doesn’t feel strange but that’s why I’m sad.
You’re 11 months old already, it’s time to move on. It’s been 10 months since you came home, you’re strong and determined. This bug won’t defeat you, it’s only a glitch. This is the last time, I’ll dare make you that promise.
I’m ready to forget this place…I wonder whether this is the time you’ll let me forget.”

Thanks for letting me share. 


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My Sunday Photo 4th October

Can’t believe Penelope is 16 months old this week! She really is growing too quickly. 

Here she is on the front of Pick Me Up magazine this week, raising more awareness for her rare overgrowth condition.

It’s still available to buy, the full story is on pg 40-41

Also this week we have been featured over on ‘What Katy Said’ as part of her ‘Real Mums’ series where I talk more about my experiences as a first time mum to a miracle baby; and how I think time flies when you have a baby (or two)! 🚀

Here’s the link:
I am so happy I have these milestone stickers so I can capture lovely moments such as this whilst Laurence is still teeny tiny, because even this last month has passed by in a flash! 


It is evidently exhausting being one month old!
The stickers are available here:

They really are lovely AND they donate a certain percentage to Count the Kicks, which is a great charity that aims to empower mums to be with knowledge and confidence throughout their pregnancy. A baby’s movements indicate its wellbeing and by understanding their baby, mums can be empowered to trust their instincts, enjoy their pregnancy and ensure the healthy delivery of their baby. Penelope’s story can be found on Count the Kicks website too! Here’s the link:

As well as the beautiful stickers, I have also been using these sweet landmark cards (I am serious when I say I want to enjoy and remember every single moment that Laurence is so small)! 

I think they’re adorable and I’ll be buying some for the next baby shower I go to, they’re the perfect present! You can find them here: 

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