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.