25th October 2021
My little warrior queen got out of surgery about 5.30!! I panicked as it seemed too quick compared to what they’d anticipated but she’s done as always AMAZING 
She’s not awake yet, still sedated and on morphine, still ventilated to let her rest and recover but she’s going to be ok She’s got a lot of surgical lines that have been placed for antibiotics and bloods etc.. she has got so difficult to cannulate and obviously they need access right now so was best option.She’s finally had her blood transfusion.. her hemoglobin levels were extremely low so this was essential. The reason she got so poorly so fast was that her NJ tube had caused a small perforation in her bowel, thank goodness this was discovered before we went home. Finally Amber did have malrotation of her bowel.. had she not got so suddenly ill on Saturday we would not have had the X-rays which showed the suspicion of this and we may not have found out until it was critical or even too late. Amber as always leads the way and guides us to what she needs. We’re going to be here at least a few days to make sure she is ok and then stable enough to transfer back to the Highlands. I’m delighted and honoured once again at the wonderful doctors and nurses we’ve got here in Glasgow. Amber has received the best care once again by such dedicated, compassionate and talented people, I’m eternally grateful. On our way down in the early hours this morning my car started ‘roaring’ from Perth, studiously ignoring the clearly angry exhaust issue ‘Claude’ (my car) was having we just needed to get to Amber..by the time we reached the hospital Claudes (my car) exhaust was hanging off! As all these wards seem to have, there is an incredible woman working behind the front desk who can’t do enough to help traumatised, stressed and tearful mums.. within a couple of hours she’d organised my car to go in for repair. She met us after her work, led us to a friends garage and tomorrow it will be repaired and delivered to the hospital for us We are staying in Ronald McDonald charity parents accommodation which is beautiful, hotel like and just across the road from the hospital, sorted out for us quickly without effort or fuss. This challenging, ever changing, often traumatic journey of Scbu, NICU and 6 weeks so far in hospital has been peppered with tears and joy and the kindness of strangers. Tonight I am shattered, mentally, emotionally and physically, I haven’t really slept in 48 hours but as I sit here and watch over my tiny little daughter, covered in her tubes, wires and needles, so brave and so fearless… I am overwhelmed and honoured that her little spirit is in my life. My brave little fox, astounding everyone with her determination to live and her strong little character, remarkably awake considering how much sedation she is on! She has been watching me with those dark navy eyes… she knows what she’s doing. My little Amber, a bit bruised and sore but powerful, inspiring and she fills me with joy.
27th October 2021
Once again I am utterly overwhelmed by the kindness of strangers 
First of all the news you’re all really waiting for is that Amber is doing really well. Still heavily sedated (they had to increase it as she was fighting it and far too active for a tiny wee fox who’d just had massive surgery! The doctor couldn’t understand how such a wee baby on such a high morphine dose was still awake! They had to add another drug to her cocktail of medications to encourage her to rest!) She is resting and healing and looking pinker than ever after her blood transfusion. Her ventilator has been adjusted as she is already triggering and trying to breathe over the top of it herself. Surgeons are hoping the fixing of her bowel malrotation will also cure most of her feeding issues.. I live in hope and we will have to wait and see 
I was however an idiot and allowed the surgeon to show me a photo of the bowel perforation… STUPID! I was in all honesty already traumatised, by everything on this journey so far. I was already struggling with the memory of her whimpers and cries over that 24 hours, her screams when she was moved, the horror of finding out about the perforation and realisation of how much agony she would have been in. Seeing that photo is now imprinted along with her cries in my memory. I’ve not had a good day today and have had a few breakdowns. She won’t remember… I will never forget. I’m not ashamed to say I’m ringing my psychologist tomorrow. Anyway.. tomorrow the surgeon and consultant are hoping to try Amber with a little food, first using her NJ tube but hopefully in time to progress to her NG tube.. the hope is that the surgery will now allow her to get rid of continuous feeds/food intolerance/volume intolerance and allow her to have food in her stomach without horrendous bloating. All of this will make her care much easier So to the kindness of strangers.. my car is fixed. In less than 24 hours, this wonderful family run garage had replaced my exhaust, brought my car back to my accommodation and had charged me nothing. Amanda said they had been thinking about us and Amber all night and wanted to help, she’d been touched by our story as she understood having had a premature baby in nicu herself. So to Amanda and her son Cameron who fixed my car I am so so very grateful. They have made a situation which almost pushed me over the edge and I wasn’t sure how to deal with, alongside everything else so simple and to give it as a gift was such a gorgeous gesture. I know they won’t see this but I can’t thank them enough. So if your car gets stuck near Glasgow please give them your business… Renfrew Motor Engineers down Brown Street… they deserve it for their kindness. (Instead I am intending on making a donation to Ronald McDonald house.)That’s it for today, I’m sat by my little warrior queen, just her and I and am watching her in adoration. I feel so very lucky to be her mum. In my two girls I have been given treasure beyond belief. My baby bear 
Coreigh and my little fox Amber… I love you both so much xxxx
27th October 2021
‘I’m watching you mummy!’ My little fox with her dark and knowing eyes has been a little more wakeful today.Her sedation is being reduced and her ventilator has had the settings lowered in preparation for extubation, hopefully tomorrow as the tube in her throat seems to be bothering her this evening. She’s back on tiny feeds… yesterday in her NJ tube, today increased to 2ml an hour and into her NG tube… we’ve had a few small green vomits tonight sending me into a flurry of worrying but the nurse is reassuring, apparently it’s common after bowel surgery, plus because of the NJ tube there is a direct route allowing a passage through for bile from her bowels. I won’t be sorry to see the back of that tube, I’m praying that the NG feeds are successful and that the NJ can be removed She’s required a lot of suction today too, again likely a side effect of the ventilation and gag reflex now she’s becoming aware of the tube in her throat… Amber and I are going to have a celebratory party when it’s removed… music (Disney lullabies!) lights (a lullaby colour changing stars projector!) and drinks (NG neocate milk for Amber and fresh juice for me!) Plenty of friends to party with ( her nurse, rabbit, hare, air ambulance teddy and miniboo!)It’ll be a wild night!!I’ve been getting migraine aura recently, without the head pain thankfully but still, going blind on a regular basis isn’t adding much fun to the situation. Thankfully my GP didn’t quibble and immediately put me through a prescription to a local pharmacy that I’ve not needed for years to try break the cycle. So I was going to walk there and use google maps (anything to avoid driving in Glasgow traffic!) but the rain here has been torrential and I have only my ugg boots so decided to splash out on a taxi! So far so good… my sight has remained intact today and I also went for a sleep this afternoon having been awake since 5am. #feelingrejuvenated (kind of!?!)More gratitude to Caroline for going to buy me a waterproof coat and wellies Thank you so much, especially for the little present and clothes for Amber It was so lovely to meet you and Ayla, I love that she just held my hand for so long 
Just that short time with you made me feel less alone in this strange city xx Looking forward to catching up with my friend Lesley this weekend too… coffee and cake may well just save my sanity and it’s been a ridiculous amount of time since I saw you!! 
So here I sit again, quietly at Ambers side, trying not to disturb her too much tonight before she comes off the ventilator. I want her to heal and rest as much as possible. Her nurse Yvonne has just wheeled in the high flow air/oxygen equipment in case Amber self-extubates overnight once they reduce her sedation and morphine… all ready and prepared! I am as always just completely crushed by her cuteness! My breath swept away with love for her! We’ve (me really!) just had a video call with her big sister Coreigh and she met her nephew Oliver! 
Anyway, this is our peaceful time, mummy and daughter quietly together for the evening. I may not be able to cuddle her right now but I can stroke her cheek, hold her hand, stare into those big, wise dark navy blue eyes and we’ll carry on with ’The lion, the witch and the wardrobe’ #trisomy18awareness#edwardsyndrome#nicu#nicumom
30th October 2021
Amber is off the ventilator Walked in this morning and she’d been raging at about 6am this morning as her sedation was wearing off (hardly surprising!) so rather than wait for her to self extubate they did it first! She’s still a bit upset occasionally, I’m guessing she has a very sore throat bless her and she’s trying to find her ‘cry’ but it’s currently a faint squeak.. it’ll come and then the whole ward will know she’s here! For now I must go… I have been recruited by Marnie one of the nurses to make Halloween paper chains and decorations!! She was prowling the ward searching for help so how could I refuse!!
‘Mummy said it wasn’t my best photo this morning and said I should show off my beautiful eyes so of course I obliged!!’
31st October 2021
‘Still a bit sleepy 
but it is Sunday after all! Just because mummy was up early doesn’t mean I need to be! Anyway I need my rest to grow … I’m over 5lbs now so mummy is delighted and gave me extra kisses!!!! She never stops kissing me and telling me how much she loves me so extra kisses was a lot! 
The nurses have been decorating the ward for Halloween so I have little bats 
and a tiny ghost 
in my room but they’re friendly so that’s ok!Mummy and I are wishing everyone a Happy Samhain.
So good to see you today Lesley and yes I did cry when you left. Thank you for getting me out for a while, listening and buying me coffee. Love you xx
Amber, The Trisomy 18 journey of 'my little fox' 