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Kate Sonley has set up this blog about her baby girl, Amber Marina Lily and their journey of her devastating diagnosis of Trisomy 18, also known as Edwards Syndrome. To read her story, which is regularly updated, click here: 

October 1st

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 practise 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

September 24th

So my little fox ?? Amber is doing amazing!! Tuesday and Wednesday I was getting lots of positive signs, even stuck on the hospital ward around 6am Wednesday morning I saw a wee hedgehog ?? a rabbit ?? and a rainbow ?? (with rainbows I always feel my brother Derek is close ??) Nature finds me even here… it was across the autumn equinox and wind was wild and shaking the cherry trees outside my hospital window. The previous day in the middle of singing ‘The Lion Sleeps Tonight’ to Amber (I played 80s during my pregnancy since Ambers diagnosis… it’s hard to be depressed listening to 80s and it got me through endless drives to hospital appointments, this song was my favourite when I was a little girl so I played it on repeat to my bump!) … anyway! I suddenly and randomly switched to a Beatles song (can’t remember which one now… I was a bit surprised!) this is not music I ever listen to and I just knew my big brother was with me and felt very protected ?? I checked with my niece Jaz and yes she confirmed Derek loved The Beatles!! She also sent me a photo of two foxes ?? who approached her in the street .. little Ambers spirit animal giving signs all over the place! Then watching my sisters YouTube channel one evening on an older video she has a plastic pocket with a fox ?? picture in it ??
However.. since Amber came off the ventilator on Wednesday I have discovered she can be very grumpy! Hardly surprising considering all she’s been through so far bless her! She definitely did not like her ventilation tube as they reduced her morphine and she didn’t appear to like cpap any better. Having to learn to breathe through her mouth while having high pressure oxygen forced in her nose has taken a couple of days to get used to for her and having found her lungs she has often made her displeasure known when awake! Once asleep mouth breathe has come naturally to her and she has relaxed, so yesterday I spent a quiet day by her side but only holding her hand or foot so she could rest and recover from her previous big day. Today she seems better, less fighting the cpap but still a bit of a diva!! Her cry is tiny, incredibly cute but makes me want to scoop her up and whisk her away from here which is of course impossible for now… hopefully soon ??
She has had another echocardiogram to check her blood/oxygen flow, is on caffeine to support her breathing and her blood gases have been very good since extubation. Today her paediatric doctors spoke to Glasgow and it’s agreed to give her diuretics to now help support getting her off cpap and on to oxygen through nasal prongs which would be even more amazing and another step to coming home.
She’s had a tube removed from her where her umbilical cord was and though they’ve left the uvc into an artery there until Monday (easiest way to get blood samples to check her gases without continuous needles) there are so many less wires. ??
Her feeds are also being increased rapidly.. from 2ml every two hours to 10ml since yesterday.. another step closer to home as obviously I need to be able to feed her.
So she’s doing amazing ?? I am especially exhausted after what has been another intense, worrying and overwhelming week but I’m so thrilled my baby girl is doing so well. Again she just keeps smashing all their predictions and I’m so completely in love with her! ????
Since the vent tube is out and she’s on cpap I had skin to skin today for almost 3 hours, my little fox ?? in my arms where she should be.

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