2nd November 2021
Happy 7 week birthday to my little fox 
For her birthday today she got he NJ tube removed!! 
3rd November 2021
Sleeping sweetly It is indescribable how much I adore my little fox
Amber update of the day So my wee fox has had a busy day today and is now exhausted! Her feeds have gradually increased over the last few days and today she finally reached full feeds through her NG tube…obviously due to all her previous feeding problems she is being closely monitored. I’ve been a bit nervous as it was always once she reached over 12ml an hour that we started having issues but she is up to 14ml and so far so good 
Because her feeds are now full all her supplementary fluids and her lipids have stopped and her medications are being given orally (through her NG) so the lines in her neck have been removed! . Obviously utterly delighted as I hated them (much needed as they were) and so did she… we are now back to as many cuddles as we want so obviously I’ve barely put her down since they were removed! We had initial tests done by ENT, the consultant did an endoscopy to have a look at her upper airways, he’s very happy so far and has no immediate concerns but is referring us back to Inverness. I’ll be keeping a close eye on her and she’s going to have a home sats monitor, any concerns they’ll investigate further and if she does need any surgeries in the future he may well do a bronchoscopy anyway at the same time.. so for now I’m happy with his assessment. The neonatologist decided to get Amber an initial assessment with cardiology too.. they came incredibly fast and appeared today! A very brief assessment and she will be discussed at their cardiac meeting on Friday. Though nothing will be done as yet for her.. she has congenital heart problems.. I am grateful that they will be aware of her and I know her paediatrician has already referred her for the cardiac clinic in Inverness. Complete unexpectedly she has also had her second RSV vaccine.. so grateful for this. A very expensive vaccine for an extremely dangerous illness for her. She has to have it monthly throughout the winter. I was delighted when the doctor appeared to do it today. (Winter is going to be a scary time with all the colds/flu/covid… I’ve had to come up with some pretty strict rules for visitors once we’re at home with advice from the hospital.. it’s depressing but essential. I’ll post these up nearer the time and I’ve already ordered medical face masks for anyone visiting to use.)Finally I’ve placed my first NG tube!! Can’t say I really wanted to but since I’m going to need to feed her when we’re home there was no option! Having practised on a dummy repeatedly at Raigmore and had one previous unsuccessful attempt on Amber a couple of weeks ago I wasn’t looking forward to trying again. However, it went really well and I placed it first time very smoothly! A massive relief to me and I’m sure Amber as well! Plus pretty tape with foxes on so even better!! It’s been a stressful couple of days for various reasons but I want to thank my mum, my sister Jo-anne, Coreigh and Jessica for keeping me calm and their amazing support and Katie and Marty for their advice today, very appreciated Sending lots of love to family and friends from me and my little fox! xxx
4th November 2021
So no big update tonight really, it has on the whole been an uneventful day. I was in agreement with the consultant that Amber should have a restful day today having had so many changes and having been prodded at all day yesterday. She’s been unsettled all day today, perhaps a mix of exhaustion from yesterday and perhaps the realisation that her morphine has been dramatically reduced.. whatever the reason my little fox has not been at her best and been upset with herself. She is finally sleeping sweetly and so once again I’m sitting quietly by her side and feeling a little sad and reflective tonight. Since I’ve been in Glasgow, every night after dinner I walk back to the hospital. If you’ve never been here it’s huge.. a massive cluster of buildings, three multi-storey car parks alongside numerous outdoor parking, bus stands, a taxi rank.. a bit of a maze but I’m finally getting my bearings. So every night I walk up this long path, it’s dark early now and the main hospital looms up ahead. A huge building and hundreds of windows with hundreds of lights. Every night I look up on my way to spend another evening with Amber and I wonder how many lives are falling apart right at that moment. How many others are locked in their own pain as I’m walking to see my tiny daughter locked in mine? I feel so very alone on that walk and I’m guessing so do many others as they walk up to the same buildings. Then I get to her side and the darkness lifts again as I look on her sweet face, this little miracle I grew! It was mid September when I walked into Raigmore to give birth and it’s now November. I’ve missed the autumn 
one of my favourite times of year.. it’s gone and this morning there was a frost… winter is on its way. It’s a strange experience, one that no one can understand unless they’ve lived it themselves, the trauma and heartbreak of this pregnancy, much of it spent alone (.. damn you covid..) and sitting in scbu and now nicu. The endless hours that feel like days, the days that feel like weeks, it will stay with me for life, it’s definitely changed me in ways I don’t understand yet. I know that I will spend other times in hospital with Amber, it’s inevitable and something I was always aware of when I chose to keep her with me. I don’t regret any of it, I look at my tiny girl, my little warrior queen and she’s amazing.. I can’t say often enough how much I love her. This journey is also filled with smiles and joy, hope and delight. I’m so grateful to everyone who has been around to support Amber and I, most of you have had to do it from a distance whether because of covid or actual distance (Neill it’s a bit inconvenient you’re being in NZ but thank goodness for video calls with you and Georgia!) but you’ve all been wonderful! You all give me strength and I love that you love her too! Tonight though I’m feeling a bit lonely and I’m looking at this teeny tiny girl of mine and we need to come home now.. she and I, we need some quiet and some time together away from these wards and monitors and needles. I think it’s not too far away now, I hope it’s very soon. All I want is to snuggle in my pjs, on my sofa, Amber in my arms and Panda at my feet and sing (badly!) Amber her favourite lullabies in our own home. So please wish wish wish for us!
5th November 2021
Got a call at 2.30am to say Amber was struggling with her breathing so she’s been taken off high flow and is now back on cpap which she absolutely hated before but this time she seems to know she needs the extra help for a while. They have managed to get a cannula in and put her on antibiotics as a precaution while they await results from blood cultures to check for any infection and she had an X-ray in the early hours. I feel very frustrated, a bit weepy and of course exhausted as the hospital sent security to collect me so I could sit with her for a while in the early hours. I ended up being there from 3 until 5am so once again very little sleep and here I’m back on the ward again! Anyway, she seems more settled this morning with the extra breathing support and is sleeping, waiting for the ward round and watching her wriggle her prongs out every time she moves her head. 
Keep your prayers coming please
Emotional, draining and tearful day today, much discussion with doctors, Ambers been seen by four different neonatologists (that I know of anyway) since last night and I’ve had long conversations and messages for advice from Caroline and Marty (I’m not sure how many times I’ll be saying this.. many more times I’m certain! but thank you both again) and my sister Jo-anne who as always gives me medical advice and breaks all the complicated terms and decisions down for me, as well as masses of emotional support every day. . Ambers paediatrician Philine is so sad that Amber is having issues again so soon 
There’s been scary conversations today about Ambers heart and/or airway obstruction. Fluid on her lungs. Is she in heart failure? Does she need ventilation again? High CO2 levels, countless blood gases, hemoglobin levels.. Honestly we still don’t know.. no certain answers yet. Different doctors, different opinions and my head is spinning. What should I push for and how far should I push? Frustrated.. yes. Worried.. absolutely. Scared.. always. So here’s where we are as of now…Amber is right at this moment having a blood transfusion, much needed again and will almost certainly make her feel somewhat better. (She is developing a little pink inner glow as I write!)So far we have managed to avoid ventilation.. it was VERY CLOSE.. the equipment is still laid ready just in case. For now she is on something called ‘duopap’, the final option before intubation. So far so good.. her very scary CO2 levels are dropping on this and hopefully will continue to do so. They have to watch carefully as it blows significant air/oxygen into her and we don’t want her to blow up like a little balloon, especially as she has had major bowel surgery, if she did it means ventilation as the safest option for supporting her breathing. She was really struggling and pulling as she inhaled earlier.. it was pretty awful to watch but it has settled a lot at the moment with the duopap. We’re still waiting for blood culture results but her CRP was very very low this morning so infection is looking unlikely. A paediatric cardiologist is coming to see her tomorrow, it is likely she will have another echocardiogram. She is currently a bit small/young for heart surgery (depending on what he finds..) so if this problem is due to her heart issues I’m assuming medications would be needed? I really don’t know???Which leaves airway obstruction.. I’m not sure what they’ll do here.. they agreed to the endoscopy two days ago, I’m not sure what else they will agree to right at this time. I guess that’s a discussion I’ll be having tomorrow…So tonight I’m feeling pretty sleepy, Amber is probably on a sugar high from the amount of sucrose she’s had today (3 tubes so far!) she’s got 21 minutes of her transfusion to go, I’m listening to air being pumped into her tiny nose. Her heart rate is sitting beautifully low for her and I’m hoping so very much that she has a peaceful and restful night.. I’m very much hoping not to get a 2am call telling me that actually she does now need ventilated. Some sleep tonight for both of us would be lovely, ready to face whatever tomorrow brings. Today has not been a relaxing day. I hope tomorrow is better. Oh and thank you Soraya for letting me cry down the phone to you.. today I couldn’t hold it in xxx
6th November 2021
Present waiting for us at home from Soraya… love love love!
I’m not doing a big update tonight, I’m prioritising cuddles with Amber tonight. Suffice for now to say it’s been another day with visits from the surgeon, a cardiologist and one of the neonatologists. Still no answers but lots of scary potentials which I’m not dealing with today. Amber is for now still avoiding ventilation but it’s still hovering as a possibility, she’s on antibiotics due to infection, she’s been struggling to breathe and is still on duopap which is the last step before ventilation and she’s been so upset and unsettled she’s on 3 different types of sedation to let her rest. I’m thinking tonight of Katie Kissee also sitting tonight in a hospital with her little girl Paislee (sending you both 
) watching her struggle to breathe and I’m thinking Katie of what you wrote earlier… I too agree with your sentiments on protecting our precious little ones. It’s going to be a long winter but no one with even a sniffle is going to be able to come near Amber this winter. My flu/cold and covid precautions are going to be extreme.. I don’t want to spend nights watching my little one barely able to breathe like this. It’s devastating, especially seeing her having to be drugged so she can relax enough to accept the pressurised oxygen 
I haven’t spent two months in hospital for her to catch a careless cold or covid. Tomorrow I’m hitting the research, tonight we’re snuggling
9th November 2021
Today I’m 8 weeks old Plus I got weighed last night and I’m almost 5lbs5oz!!
11th November 2021
So my little fox is unsettled and sore with nasty wind at the moment, cpap blowing air into her really isn’t helping. Lots of cuddles and paracetamol have been the main focus for her the last couple of days. The doctors are hoping to get her back on high flow soon, which would be great except she’ll then be ready to be ventilated again and given a bronchoscopy… I know this sounds backwards but she needs her breathing to be stable as she has to have a general anaesthetic to have the bronchoscopy, which also means temporarily ventilation again (and then cpap, to high flow, to low flow…) I feel so sad, frustrated and am devastated at her going through more so soon but the doctors and I need to understand what is happening in her airways… more worry, more delays to getting home. (Am starting to panic at other practicality’s which need attention.. it’s almost two months now since I walked into hospital..)So today for the first time I took a little time out. A break. A rest. I sought out just a little tranquillity and healing for a few hours. The car needed to be driven anyway and I needed a practice drive since I’ve not been behind the wheel for 9 weeks! So I headed north and walked by Loch Lomond for a couple of hours. It was rainy, cloudy and cold… it was fresh and utterly beautiful. 
(And then of course I went back to have more Amber snuggles! )
15th November 2021
24 hours, 250 mile round trip, my house () my first (couple) of glasses of wine 
(was plenty!) in almost a year, much needed labrador love from my Pandora (much joy from her rediscovering her toys!), hugs, slobbers and walks, hugging my baby bear 
Coreigh and littlest bear Oliver, my sofa, my bed (
!… obviously shared space with the dog) the loveliest welcome from my neighbours (I was spotted in minutes!), sorting mail, finding and filling in forms, organising the chaos out my car from slinging everything in before mad dash to Glasgow, coffee with mum and dad, presents (thank you Rhoda, Belle, Jennifer and Jean), my gorgeous fox pillow and Ambers octopus from Soraya (they’ve come to Glasgow with me!) hair dye (phew! Was getting desperate!), a bath 
(showers are great.. baths are better!) .. a last minute trip only really decided on Saturday morning once I was reassured Amber was ok by her doctor to leave for a night and I spent half the weekend calling them just to make sure she was ok. This last week has been hard, a catch up I think of months of stress and trauma. Next week is likely hard.. a big week of ENT doing a bronchoscopy on Amber, her being ventilated and undergoing another general anaesthetic, I have big conversations to come with them no doubt but also cardiology. I needed to lift some worries of practical stuff that needed doing at home but also needed to touch base. See my other daughter and Daniel (who gave me an amazing hug!) and my mum n dad.. I needed my dog and my house and a brief respite to help my equilibrium. I needed to see the hills and trees from home, breathe some air.. This next week is scary, I need to be strong, feel focused, be balanced and calm. I drove back to Glasgow tonight, it was hard to leave home again so soon but tonight my little fox was snuggled safe in my arms again and that 24 hours has made me feel a little more ‘me’ again which will help me help her in what’s to come next. Praying for as much of a positive outcome from her bronchoscopy as possible, my little warrior queen is amazing and I can’t wait to take her home so we can snuggle together with Pandora
Home with Pandora and chaos in the kitchen.
*** They’ve just collected her and she’s away for her bronchoscopy.. trying to stay calm and failing ***Getting our morning cuddles before they vent her and take her to theatre
17th November 2021
‘We hold our children in our arms for a little while and in our hearts forever.’ Coreigh Amber (Emily~Jack 
Adelaide )
I saw the following written and thought it was beautiful…
‘Did you know your children’s fetal cells stay inside you? That they forever leave an imprint on you? Every wonder why we are so divinely connected and intuitively close with our children? Well, there is some science to it! -Cari “When I was pregnant with my daughter her cells migrated into my bloodstream and then circled back into hers. For 41 weeks our cells merged and crossed and after she was born these cells stayed in my body, leaving a permanent imprint in my tissues, bones, brain, and skin, and will stay there for decades. And every child I have after will leave a similar imprint on my body. Even if a pregnancy doesn’t go to full term or you have an abortion, these cells still migrate into your bloodstream. Research has shown that if a mother’s heart is injured, fetal cells will rush to the site of the injury and change into different types of cells that specialize in mending the heart! Studies have also shown cells from a fetus in a mothers brain 18 years after she gave birth!⠀Mothers have always intuitively felt their child even when they are not there, now there is scientific proof that we carry them for years and years even after we have birthed them. I know my body held and made my daughter, but she too made me. Leaving pieces of herself to forever flow through my body and heal me in ways I am only still trying to understand. Forever grateful for her not only being my teacher but also my healer.’
20th November 2021
(This was written by my niece Jemimah)
Yesterday I got to meet the newest member of our family, the absolutely gorgeous Amber. I well and truly fell in love with her and was lucky enough to have cuddles. Kate, it was ace to see you for well overdue hugs, love you lots and I think you’re amazing
I was wrong… this week hasn’t been scary, it’s been overwhelming ,terrifying, heartbreaking, devastating and every day I panic and struggle to breathe and don’t know how to carry on but then I do because I have to and I sit with Amber and sing and talk and cuddle her and try not cry when I’m with her (I mostly succeed at this now) because I want my days with her to be filled with joy and smiles, our mum and daughter time is so precious Ambers bronchoscopy went as well as it could, though she had a little bleeding likely from throat trauma during the procedure. Her bronchoscopy results (whilst not wonderful obviously) showed what I’d been hoping for, that she had upper airway obstruction which is easier to treat and manage until she would likely grow out of it and her Ear/nose/throat consultant was happy to look at options such as a trach and so on Monday I was relieved and feeling so very lucky. Devastatingly her heart and lungs are not holding up as long as we’d hoped and expected them too. After speaking to ENT Monday I then spoke to her cardiologist. The cardiac surgeons discussed her on Friday and she is too tiny yet for VSD repair surgery, none of them will agree to do it and the alternative option of PA Banding which they would reluctantly offer has huge uncertainty as to whether it will help or worsen her health, not to mention the recovery, especially as she has been more fragile this last week or so. This is complicated by the fact she has had so many cannula they would struggle and likely need to surgically place central lines into her veins near her heart and honestly, if the surgeons were confident the banding would be successful I’d say yes but my baby girl has been through so much already and I have to consider what’s best for her. Her breathing has worsened, she was placed on high flow immediately after extubation and did reasonably well on it for a few hours but she rapidly began struggling and by evening I asked for her to be placed at least back on cpap, this was upped to duopap almost immediately and she remains on this currently. She she has moments of agitation so that she has chloral to help settle her and I have hit a wall with her treatment and what to do. I’ve had long discussions and group meetings with all her consultants from each speciality, including the amazing surgeon who fixed her bowel (and all her feeding issues) only 3 weeks ago. Her paediatrician Pheline was also there, the hospice team and of course my sister, Jo-anne. The doctors are all upset.. I can of course ask for the interventions from ENT and the cardiac surgery to ‘see’ if they will help but speaking to two of the neonatologists at length whom I have grown to trust very much, one of whom was in the cardiac meeting last week, the overwhelming feeling from all the teams is that Amber is unlikely to make it out of intensive care if she has the surgery. This is nothing to do with her Trisomy 18, as always the doctors have assessed her as any other baby, as I have always insisted and I know my little one has won the heart of all the medical team here. I have never wanted my precious little girl to spend her entire life on a hospital NICU ward, every choice I have had to make , and there have been hundreds… has had to be carefully thought out as to whether it is in Ambers best interests. I’m utterly devastated and heartbroken but I feel I have no choice but to change Amber to ‘comfort care’ rather than continuing with full medical interventions. My aim is to now get her home as soon as possible so I can spend time with her away from hospital wards and needles. We’re aiming for next early next week, the plan is to go directly home from Glasgow and the two hospitals Glasgow and Inverness are working together to make it happen as smoothly as possible. This has only been fully decided two days ago and until Monday this choice wasn’t even a consideration for me.. I was intent on planning life for her, for us, planning for our future and how we would make everything work with my complicated little fox I feel broken and I feel like I’ve lost the ability to breathe. I have no idea how to live without my baby girl when that time comes and I have no idea how long I have with her once home. The level of oxygen and supportive pressure she needs are not available at home.. we are going home with low flow oxygen and a lot of medications to keep her comfortable as needed. 
All I’ve done is cry and I didn’t know pain like this existed but I’m going to try to be as happy as I can around her now and create as many happy memories as I can. My aim has always been to take her home so that’s what I intend to do. It’s taken me a few days to write this, I needed to tell my family first, to be able to actually stop crying enough to find the words. The hospital has been incredible, they are making my time here on the ward with Amber as sweet as possible. We had fun with paint, glitter and clay making memories… Amber loves her feet being massaged so paint on her toes was a delight for her! I bought pretty tape for her tubes so she has daily changes of foxes and flowers, zebra and rainbows! She’s dressed now as we are ‘de-medicalising’ her a little and have got rid of her chest monitor stickers. (We still have an eye on her sats/heart rate and temperature)My incredible niece Jemimah drove up from Yorkshire for one afternoon yesterday and the hospital arranged a photographer to come while she was here.. our own private shoot with at least 3 outfit changes for Amber and her first dress, and unexpectedly my brother Derek when Jemimah tied her ring with his ashes to Ambers bonnet The complicated organisation of taking her directly home (I’ve refused a hospice room as though the centre looks beautiful it is too far from my family and friends) is being incredibly and precisely organised by my Glasgow neonatologist, Glasgow’s palliative team, the transport team, the hospice, Ambers paediatrician Philine who has been with me on this journey from 25 weeks of pregnancy, the community nurses team, my GP and of course my daughter Coreigh and mum who are going to get my house cleaned and friend Soraya who is taking delivery of oxygen. I will have 24/7 medical assistance on hand and once again I am amazed and grateful for our NHS. Philine herself will be there with me at home in those first hours too. My niece Jemimah is coming back to travel with me, be with me when Amber is initially switched to low flow in those first terrifying hours (I don’t want my daughter Coreigh to carry the trauma of seeing that initial transfer, I want her to come after once it’s calmed down) and support me the first couple of days, and as always my best friend Jessica will then step in and be by mine and Ambers side. So Amber and I for now are cuddling and snuggling and I’m loving her sparky little character. Our journey together continues and this is our next chapter together. I’m bringing my little fox home
21st November 2021
When your baby fox takes after your baby bear and likes her luxury!
23rd November 2021
My morning message
Last photo in NICU … we’re coming home
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’ 
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! 
and a tiny ghost 
in my room but they’re friendly so that’s ok!Mummy and I are wishing everyone a Happy Samhain. 
Amber, The Trisomy 18 journey of 'my little fox' 