1st October 2021
Sorry! Been a lot happening the last couple of days and I know a lot of you are wondering how Amber and I are.. first of all she is absolutely fine! We did have a possible ‘blip’ but fortunately it’s turned out to be nothing 
*This is going to be an extra LONG update!! Monday night my mum and dad saw her face properly for the first time 
They are in love! Tuesday ended up being a really frustrating day, I was getting all excited about a relaxed day off snuggles as she’d obviously got all her cannulas out etc and on the ward round on Tuesday they were really pleased with her and reduced her airflow a little more as she’s doing so well 
. She also had a visit from the physio to help with her little clenched fists and I started to learn how to feed her through her tube! All good stuff! However…! The postnatal ward decided it was time to discharge me (and another mum whose baby is in intensive care with Amber) We have been moved into accommodation (for as long as we need it) in the hospital grounds. This brings very mixed emotions for me… while I am so grateful to have a place to stay close by it also means no late/middle of the night visits to Amber due to safety concerns of walking around dark hospital grounds alone. This is devastating when I already struggle with the unnatural situation of not having my baby with me all the time which is not good for either her or I and honestly the staff at Scbu are not thrilled either but unfortunately the in-hospital parents accommodation was closed at the start of covid and there has been hints they are not going to give it back… a frustrating and unacceptable situation but unfixable right now. I also find it hard when I should be feeding her myself and still have to express milk every 3 hours to ensure I keep a supply for her.. I find the tears flow very easily at 3am waking up without my little one by my side. I am trying though to practice gratitude every day… I can’t drive for a few weeks yet and since I live so far from our hospital I remind myself at least I’m close enough to be with her every day, all day. . The original plan was to try and move both Amber (once stabilised) and I to the children’s ward to a shared room so I could learn her 24 hour care ready for coming home AND build up a relationship with the staff there as Amber will likely be in and out of hospital fairly regularly but RSV (a respiratory virus) is doing the rounds there and it’s just not safe for her with her issues… so it looks like she will stay on Scbu and I in (slightly iffy!) on grounds accommodation. It was a messy day waiting for porters to help move my growing mass of ‘stuff’ across the car park and grounds and missing out on hours which should have been spent with Amber.. far too much walking to find keys, porters, food which accumulated in more pain in my stomach.. too much too soon after major surgery. It was the first day I felt pretty ‘grumpy’ rather than tearful. Tuesday night, finally by Ambers side I noticed her tummy looked a little swollen but all her stats were good and she seemed well so I didn’t worry…Wednesday … come to Scbu to find Amber is on 3 antibiotics, has two cannulas, one in a hand and one in a foot, feeds stopped, TPN and lipids restarted, diuretics stopped and that’s she’s had a lot of blood tests after her stomach was so distended and she’d started to vomit. On the ward round scary mentions of potential issues with her liver, kidneys and something called NEC (an inflammation in the bowel which had the potential to send us off to Aberdeen to get her surgery)… hence more tears, more fear, disappointment, worry… trying to cling to the good, she doesn’t have an eye infection just blocked tear ducts (fixable by massage so that became a new focus for me), physio examination which shows she has a full range of movements in her limbs…hopeful she can sit/walk depending on her cerebellum growth, little stretches to do with her hands daily, and her heart/saturation levels all still very good. As Wednesday passed, feeling pretty dazed and exhausted her bloods started to come back showing low risk for CRP (infection levels) and her platelets looked good… doctors still thought too early to be certain so more tests ordered, more blood cultures sent off. A liver scan needed for tomorrow, kidneys needed to be checked too, they contacted Kings College Hospital in London to ask for opinion…I’m so grateful for her wonderful doctors and nurses who have accepted her for who she is and not her diagnosis. All the research and appointments and long, hard difficult talks while I’ve cried more tears than I thought possible have paid off. It has been a heartbreakingly difficult pregnancy for various reasons and the ‘dream’ which seemed so near when I first found I was pregnant shattered in more ways than one but when I look at Amber I am so overwhelmed with love and it seems all on the ward love her and her strong little fox spirit too 
By evening blood results were still looking good but doctors still being very cautious… more waiting for Thursday…Thursday morning… two antibiotics stopped Blood results looking really good, her CRP less than 4 (very low infection risk), kidneys looking fine, sodium levels improving, diuretics to be withheld for one more day.. I was worried about her heart but they said no sign of fluid overload and they wanted to sort out her sodium levels first, no further concerns about NEC. Feeds to restart very small and gradually increase as they reduced her lipids/TPN. One antibiotic was to continue until final blood cultures came back. She had her liver scan later in the day.. result .. normal So to today… Friday 1st October. Her jaundice levels are slightly increased again but this is common apparently and she looks pink now rather than a slightly muddy/yellowish colour, her bloods are fine and the last antibiotic has stopped, her diuretics have restarted, her feeds increased to 14ml every two hours and her breathing and heart rates are still stable and good. I feel like life outside has stopped. Scbu is a world of its own, a little bubble of joy and fear and happiness and worry, laughter and tears. I’m building up relationships with two other mums and an array of nurses. We are on first name terms with a big team of doctors. My medical vocabulary grows by the day. I change nappies through portholes in her incubator, feed her through a tube after first using a syringe to suck up stomach acid to ensure her tube has not shifted, soon I must learn how to insert it through her nose or mouth into her stomach. I cuddle her daily but need a nurse to lift her to me. I still cry daily, I have moments where I don’t know how to breathe or carry on. Fear so great I feel an urge to run outside in panic. I miss my daughter Coreigh and my grandson Oliver. My mum and dad, my friends, my house, my dog… oh I really miss my dog! She has been my loyal therapist throughout my pregnancy, my relationship breakdown and Ambers diagnosis…Then I look at my baby girl and I carry on. Soon I hope, very soon I will be taking her home. This morning they confirmed she is no longer being considered for any palliative care. They are expecting her to do well and us to go home. They are making plans for her future. My Amber.. she IS compatible with life. Last night Coreigh held her little sister for the first time. My girls My world
2nd October 2021
My morning message from Amber!
5th October 2021
Had a rough couple of days and Amber has a nasty infection so it’s lovely to get this when I first wake up
My little fox has her official ID
So today, 5th October was Ambers original ’due date’. However it’s three weeks since her birth! So Happy 3 week Birthday to Amber!
8th October 2021
Amber and I have had such a tough week since Saturday, both of us for reasons I will update about later (I’ve literally not had time and haven’t been feeling my best this week and Amber has been very ill and scared the s**t out of me on Monday) but in the meantime here’s my beautiful little warrior queen, my tiny little fox in her first baby grow this morning looking gorgeous and content!!
12th October 2021
Happy 4 weeks birthday to my tiny wee fox Amber This is a photo from yesterday after her first ever bath!! 
13th October 2021
Good morning world! I’m not quite ready to wake up yet, need my sleep as might be a big day today! 
Hopefully I’ll be moving from Scbu today and into a room with mummy so she can be with me all the time and learn how to use all my medical ‘stuff’… as we say in my family ‘A girl needs her stuff!’ My big sister Coreigh will definitely agree with this! (Wait till the porters see how much stuff mummy has for them to move into our new room!… They’re going to need a trolley!
)In the meantime mummy couldn’t handle how messy my cupboard was getting so she walked (slowly as she’s still sore!) to Tesco yesterday to buy boxes and then ‘Hinched’ (if you know you know!) my clothes and nappies! Mummy is planning a BIG update very soon as so much has happened this last week but she’s not had time yet! We’ve both been a bit poorly. She spends most her time researching Trisomy 18, talking to my Auntie Jo-Anne who’s a doctor and Marty in the US to get advice. The doctors are going to start running away from her notebook soon!!! So far this week I’ve seen at least 4 consultants, countless other doctors, all my favourite nurses, an ENT doctor, a physiotherapist, a dietitian and had another X-ray! My doctors have spoken to hospitals in Aberdeen, Glasgow, Edinburgh and London and that’s just this week! Whatever mummy is doing seems to be working anyway… she’s getting very good at medical speeches about why they should do certain checks/tests and treatment for me!! (We got told up to 3 months to see an ENT doctor but mummy said ‘No.. We need to see one before we leave the hospital’, it’s very important as it’s about my breathing and he came the next day! ) Anyway hopefully big update soon! Lots of love to everyone and thank you for all your amazing support, messages, love, prayers and healing!! Please keep your wonderful messages coming.. we’ve been in the hospital 30 days now and as much as we love all the medical team mummy is going a little crazy!! She says even if she doesn’t reply she is reading everything and loves you all Love Amber, a little warrior queen with the spirit of a fox! xxx
Ok so not moving to children’s ward today but hopefully tomorrow 
Still waiting for an available room. Feeling like we’re in limbo a bit so had a bath and restyled hair … Should meet approval of ‘uncle’ Neill.
14th October 2021
So two days ago Amber was 4 weeks old but today is her official …. ONE MONTH BIRTHDAY!!!
15th October 2021
We’re on the children’s ward at last!!!! Been a bit of an unsettling day, room move when we absolutely didn’t expect it until at least Monday now. Amber has had a new nasal-jejunal feeding tube fitted … it’s not quite in the right place so X-rays and possible re-placement of it on Monday if it’s not shifted to where it should with the pressure of the continuous feeds. A very unsettled me… without our Scbu usual nurses (and our well known doctors don’t seem to be on tonight either.. they will be back just wish it was tonight) I’m at a bit of a loss and panic about stuff that they are used to with Amber as they know her so well (Is her swollen tummy worse than earlier when I wasn’t around? Should her monitor be doing that? Is that usual for her? … Amber is unsettled with the move, distress of the new tube fitting, new faces and we had a brief panic with a hard distended tummy two hours after arriving on the new ward… 
. It feels a bit lonely to be honest, we’re in a room together but away from everyone else to protect Amber from germs… I’m used to nurses and Tracy to chat to and it’s going to take a bit of time to get used to. However, the nurses are lovely, they’ve been hearing all about Amber and are looking forward to getting to know her, her consultant is back next week, I get to be with her all the time but still with nurses in hand, we have a huge ensuite room with a reclining chair and I get fed!, it’s plan is to train me to look after her medical needs so we can get home (hopefully in a week or so) and Coreigh is visiting tomorrow
18th October 2021
Stressful night last night and only got to bed at 6.30 am so exhausted today, still not feeling up to writing a full update (it’ll be the length of a book at this rate!) so just going to post some photos of a peaceful bit of our once again hectic day.
21st October 2021
Good morning world!!
24th October 2021
Not a status I imagined writing tonight… we were supposed to be returning home tomorrow and I was going to surprise everyone with the update once we got home.Amber took ill yesterday about 4pm. It was very sudden and unexpected. We have found she has a virus.. Rhino enterovirus… basically a common cold but dangerous for her. In the process of countless doctors, monitoring, tests, xrays, her feed stopped, a new cannula and fluids/antibiotics and a switch to high flow oxygen it has been discovered that Amber has a malrotation of the bowel. It is something she will have been born with and is an extremely serious condition. If we do nothing her care would become palliative. The only treatment is surgical… I am awaiting the decision as to where. It will be Edinburgh or Glasgow and we are pushing hard for Glasgow. They are one of the Trisomy 18 friendly hospitals and a surgeon there has immediately offered to take her case. The only issue is finding her a NICU bed available there. They are planning transfer hopefully tonight or tomorrow.. it’s all happened so fast. Please please pray. I am devastated and terrified. I simply can’t lose my baby girl and I feel dizzy with fear. She’s in my arms right now and I’m so scared. My little fox , my little warrior queen.. send her your love and prayers and healing.
25th October 2021
Amber is on route to Glasgow. She’s starting in an ambulance and then going on a plane. They have ventilated and sedated her as she was too poorly to risk otherwise but her heart and saturation were stable and well and she has an amazing neonatal team transporting her. I’m just about to head down the A9 to Glasgow so by the time I arrive she should be comfortable on her new ward. Here we go… Fly quick my little fox and I’ll be with you in a few hours xxx
(Approx 6.30am)
Amber has arrived safely in Glasgow, she had no problems on her journey and is now with NICU.
She’s only having tiny amounts at the moment, 2ml every 2 hours through an NG tube (nasal tube) but there’s so many things I can’t do for her yet that I’m desperately missing.. bath time, nappies and cuddles that this is really special and important. I do miss sleep though… having to wake up every 3 hours to use the pump is all the harder when my little Amber isn’t in her cot by my bed.I also forgot how painful it is though when your milk first comes in! 
Just to add to the pain of the c-section… thank goodness for morphine!
but long conversations on the phone instead and thank you to Rachel for meeting me at the hospital and bringing shampoo, conditioner and some unexpected lovely treats! You’re an angel!! Amber and I finally had our mum and daughter time this evening 
Mummy loves you so much Amber, my breath is swept away every time I look at you 
a rabbit 
and a rainbow 
(with rainbows I always feel my brother Derek is close 
as always just as I’m about to leave to get food and a wee sleep! I just can’t leave while she’s crying, it makes ME cry so after a while of me trying to settle her (oh I wish I could pick her up and soothe her with cuddles 
and I love seeing her and my teeny bear together 
) I sat quietly with Amber and read her the first two chapters of ‘The lion, the witch and the wardrobe’ (big sisters choice of the few children’s books I brought) I love her big eyes watching me as I read to her and she fell asleep near the end of chapter 2 
xx
Amber, The Trisomy 18 journey of 'my little fox' 