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Care for Rare

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September 2015

NICU awareness month

September has been NICU awareness month and I’ve spent the last four weeks reflecting on our time in NICU…

  
Thinking about the first time I got to hold Penelope and how overwhelming it was, but also just brilliant. She was just off the ECMO and we had no idea our NICU journey was just at the beginning still. She was yet to be diagnosed with her rare blood sugar disease, and consequently the equally rare overgrowth condition, Beckwith Wiedemann, which ties into September also being childhood cancer awareness month. BWS lovelies are a devastatingly 600 times more likely to develop certain forms of childhood cancer than other kids. A figure I am never going to be okay with. The chances of this occurring completely diminish by age 8, but it is terrifying nonetheless.

Penelope’s story has been shared here this month: http://www.nicuawareness.org/blog/an-unexpected-nicu-journeypenelopes-story

And she is set to feature in Pick Me Up magazine this week too!

This month I have also been putting collaborative plans in place to begin work with local charity Mylo and Friends who raise money for our local NICU. Mylo was Penelope’s “room mate” whilst she was in NICU and the pair advanced through the rooms together and became NICU graduates just a few days apart. Mylo was a prem baby and so the focus of the charity is to provide ‘prem bags’ full of necessities and comforts to parents who find themselves in NICU following the premature arrival of their baby. Mylo was an astonishing 10 weeks early and faced many challenges, but I am happy to report he is doing just marvellously now. The charity also fund bigger projects and have recently purchased a new cot for the neonatal unit. I plan to contribute to this amazing charity and provide supplies to cater for full term babies who end up in NICU. As it is as much of a surprise to end up with a poorly baby as it is a premature one. Although it is expected that a hospital bag will already be packed, supplies can quickly deplete and the last thing any parent wants is to have to leave their critical care baby in order to stock up on more nappies so I aim to be able to provide a helping hand and allow them to avoid having to dash out. 

Read more about Mylo and Friends charity here: http://www.rossendalefreepress.co.uk/news/rossendale-mums-set-up-charity-8829153 or search on Facebook.

Penelope continues to thrive and is a beautiful, amazing little girl and I am beyond proud that she belongs to me! She loves her new little brother and has started to help out during changing and bath time; which is just the sweetest. A year ago last September she was in and out of hospital suffering a series of really bad hypos and needed a lot of medication increases until the issue was rectified, so she has come on loads since then. What a difference a year makes! ❤️ Not bad for a NICU grad! ❤️

  
  
Brilliant blog posts on HonestMum.com

You Baby Me Mummy
My Random Musings
You Baby Me Mummy

Wordless Wednesday 

  

My Random Musings

Brilliant blog posts on HonestMum.com

OneDad3Girls

What dads really get up to when they’re left to it…

At the end of August I had to leave Penelope for the first time ever for a few nights while I was staying on the post natal ward following the birth of Laurence. I think she missed me, but evidently had lots of fun with just dad. Here’s what they got up to.

She wrestled a Labrador in the park over half a tree.

There was no winner in this competition

She went out without pants on! Or in her pyjamas!

  
Bath time became more fun

  

Tea time was interesting… (But, admittedly could’ve been much worse!)

 
 More wrestling of dogs in the park 
  
But, he still had time to make the house perfect for me coming home 💜

   
And, Penelope loves the latest addition!

  

You Baby Me Mummy
OneDad3Girls
Baby Brain Memoirs
My Random Musings

Brilliant blog posts on HonestMum.com

Gro Clock Review

Penelope is a tiny bit on the young side just yet as it is recommended to start using around two years, however I am keen to get her learning about time! Especially since bringing the newborn home, it is absolutely imperative that at least one of the little ones is in a good sleep time routine! And I was very excited to try out the GroClock after thoroughly falling in love with my GroEgg that I have come to completely rely on all over again with the new baby. 

Penelope has a habit of waking around 5 or 6am but will go back to sleep with a bit of gentle persuasion, and this is where I find the GroClock will come in super handy. She is already extremely perceptive and ‘sunshine’ is in her repertoire of familiar objects so we help her back to sleep at her 5am awakening by pointing out at actual get up time the presence of the sunshine on the clock! This will reinforce something she has already learnt which makes her happy and hopefully she will get into the habit of looking for the sunshine herself at the 5am wake ups and recognise its absence means it is still sleepy time.

The colour is lovely and has a calming effect in the room,which I am sure has already had a positive effect on sleep. And it came with the cutest little book ‘Sleepy Farm’ – Penelope really enjoys the story and it is helping us establish a good bedtime routine as she knows that following her bath and supper comes story time and then bed time; further familiarising with the clock!

A lovely product that I know Penelope will love more and more as she gets a bit older. 

Gro Clock (top left). Penelope bright eyed after a good sleep (top right) Laurence well rested using Gro Egg (bottom left) and Gro Clock (bottom right).

Available here: http://www.gro-store.com/gro-clock.html

Mums' Days
OneDad3Girls
Baby Brain Memoirs

Little bro has arrived! 

Busy week with the squidgy newborn, but after 60 hours of regular blood glucose tests, I can happily say that his levels are normal! We escaped a trip to NICU thanks to the transitional care zone on the postnatal ward. The positive birth experience I needed. Now just to master how to look after a 14 month old and a newborn! Luckily, Penelope is already smitten with the latest addition to our family. 

   
💙💙💙

  Here he is looking super cute in his ‘Just Born’ sticker from http://www.thestickersite.com (who also donate a percentage to Count the Kicks- a phenomenal cause, and where you can read more about Penelope’s story: http://www.countthekicks.org.uk/success-stories/why-gianna-is-counting-her-kicks/ ).

OneDad3Girls
Baby Brain Memoirs

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