ksonley80

The Worst Week, having to say Goodbye…

24th December 2021 – Christmas Eve

This post is hard to write. All of them have been but this is the worst so far.

It’s Christmas Eve.

Amber sits on my fireplace in a scatter tube. It’s got a lake and a rainbow on it, it’s about 15cm high. It’s obscene. I hate it. I had to let my daughter Coreigh choose which one to get because I hated them all. So did she… she only picked this one because of the rainbow, it seemed the least offensive of the choices laid before us.

My beautiful baby girl, always tiny. Only 4Ibs 11oz at birth. 5Ibs 3oz when she passed. I long to feel the weight of her in my arms, her solid little warmth tucked up safe in my arms. The little spot on her forehead I kissed so many times telling her constantly how much I love her. The spot I last kissed at 12.55pm on Wednesday after I laid her down for the last time and wrapped her up so she wouldn’t be cold.

My little fox, sitting on my fireplace while a candle burns next to her so she’s not in the dark.

On Monday I went to see her, I took books, one of her swaddles, needles, thread and her rattle I bought her for Christmas. Baby wipes too, her nose was still running and I wanted to clean her face for her.

I spent two and a half hours stitching in the swaddle I’d taken, creamy white muslin with green trees. More what I’d had in mind when I ordered her a hand woven casket. Natural. Simple. The table the casket was placed on was too low really, I have chronic back pain so after an hour or so it was screaming at me, I just ignored it, stretched and carried on stitching the muslin to the calico lining that Cath who’d made the casket had lined it with originally. I sang to Amber and talked while I did it. It’s what I’ve always done so we kept each other company in the chill of the small room. Every now and again I’d be offered a coffee so I would take a break and stretch again. When I’d finished I decided to add a delicate lace ribbon around the top, more sewing but this time through the wicker to cover the join of the calico and muslin. It was one of the last physical acts I would be able to do for my daughter and I wanted it perfect. (Or as perfect as possible with my sub standard sewing skills.)

I spent another 2 and a half hours cuddling her, swaddled in a thick blanket to give the pretence that she was still warm. We read, ‘The Velveteen Rabbit’ again, ‘Sleep Tight, Very Hungry Caterpillar’ and of course as always ‘Guess How Much I Love You’. I sang to her (badly as always) ‘The Lion Sleeps Tonight’. You know I’ve been singing that to her since she was first born and I’m sure I get the words mixed up, simple though they are. I only realised when choosing music for her service. I would have left after 4 hours but a friend video called me from Sweden. He lives off grid in the middle of nowhere and I think it was about -15 where he was, he had to charge his phone by solar power just to call. He sat in his car as the only place with warmth and light and listened to me cry, tried to offer comfort, told me to go to Sweden to visit (when it’s warmer and covid settles down) and then told me to go home immediately when he realised I’d had barely any sleep, a long drive and I’d been at the funeral home for almost 5 hours. I did Munk (if you’re reading this, I promise I went home when we ended our call.)

At least the pink satin was covered.

I went home and drank wine, cried, went to bed and slept from exhaustion only to wake in the early hours again as always, dozing until it was time to get up, drink endless coffee and drive back to see Amber again. My evening now are non-descript. I drink some wine, smoke endlessly (stupid stupid to start again, I’d quit over 3 years ago), stare at photos of my baby, hug my dog, cry endlessly and then once I’ve exhausted myself fall into bed to cry into my empty pillow until I sleep. A dark, dreamless sleep thank goodness but which doesn’t leave me rested. Soraya checks on me often, my mum and Coreigh call most days to check on me. So does Jess. I don’t have the energy to reply to most people, I am getting so many messages but I am overwhelmingly grateful for all of the support and love I am getting. I send hearts and fox emojis and hope everyone understands why I can’t reply properly.

I drove back to see Amber on Tuesday, a 90 mile round trip but it was my last day with her with no time constraints. I spent another full 5 hours with her, cuddling again, singing (badly) again. Reading, this time fairytales from a book I had as a child and yes, once again ‘Guess How Much I Love You’. (There is a copy of this which I placed with her in her casket, it was Coreighs favourite as little girl too.) More coffee, more crying. So so difficult to put her down this time. I don’t know where the time went during these hours, I just know it went too fast. I remember panicking as 5.30 approached, they close then but they never rushed me. I overstayed 15 minutes past closing, kissing her so many times, trying to walk to the door to leave but having to keep going back just one, two, three more times… she just looked like she was sleeping still. Peaceful and beautiful.

Home.. wine.. smoke.. cry.. look at photos.. I didn’t sleep well on Tuesday night either. I had a black dread of morning coming, wished it away but it came anyway.

Wednesday, black black day. I had to be up early, I wanted to be at the funeral directors early to spend an hour with Amber. My last cuddle. The last time I would feel her in my arms. I was getting driven there by a friend Mairi, also my midwife, also someone who understands loss. I would have travelled with my mum and dad but they are concerned about covid, understandable but another inconvenience of the pandemic which has ruined so many lives this last year or two. It’s certainly made my traumatic year worse in so many ways. As it was Mairi was wonderful though we cried much of the way, she bought me coffee and a croissant when she found out I’d not eaten and she stood smoking with me while we waited for everyone from a previous funeral to leave.

I felt numb, the day dawned feeling surreal. After months of intensive, non stop ‘busy’ it didn’t feel real that today was the end of it all. Today I would look at Ambers face and be able to touch her for the last time. After today there would be no more.. not even being able to drive to Inverness to see her and hold her at the funeral directors. This place had weirdly become the one place I could find some peace, the only place that I could be with Amber, hold her and care for her and just ‘be’. No expectations or worry from anyone else. A place to be quiet, a place I have had to accept that to be with her I had to go to. And the last day had come. I didn’t want to be there, I didn’t want to do it and I wasn’t ready to say goodbye either. I’m still not. I did it because I had to but I’m still not ready. I’m not ok. Honestly I could have just taken her and run but to where? So Mairi walked with me inside, to give me the strength to do it and I went in to see her for the last time. My Amber.

More to follow…

27th December 2021

My Amber. Laid there, quiet, peaceful, she still just looked like she was sleeping.

I asked the funeral director to show my parents and daughter through when they arrived if they wanted to see her. I lifted out everything I’d placed in her casket and placed it carefully on the table. Her flowers were beautiful, a delicate spray of pale pink and white tiny roses, calla lilies, gypsophila to be laid on top, a delicate garland of greenery and gypsophila woven around her casket. They were perfect and just as I imagined. Just as I’d asked for. Beautiful but they made me cry because of why they were there.

I sat with her in my arms for the last time. The last time I would see her sweet face, she has (had) incredibly long lashes, a tiny upturned nose, the pink glow was gone from her skin but I could see it anyway. Her face cuddled down into the crook of my arm. I looked into her face, I cried, I read her ‘Guess How Much I Love You’ one more time. I talked to her, just telling her over and over again how much I love her, how much I miss her, how I’d give anything just to be back on the wards again and spend those endless hours sat by her and staring into her big eyes.

Coreigh came into the room, she’d brought her letter to her sister folded into a swan, she hugged me, averting her eyes and said she couldn’t look at her little sister but as she pulled away she looked down anyway, not able to help herself and said how beautiful she looked in her headband. How she just looked like she was sleeping. She cried too.

My mum and dad came in to see Amber, all of us together, my mum kissed her gently on her head, we all cried more. Coreigh left briefly but then returned to say they’d spelt Ambers middle name wrong on the screen and she needed to know where the office was to get them to change it. They’d written Lila instead of Lily.

Then they left me, alone with my baby girl for our last minutes. I honestly don’t know what I said to her in that time, I think I just kept telling her I love her, I cuddled her close, kissed her a hundred times, the last kisses I could give her little face. I know I stroked her beautiful dark hair, felt it’s softness under my fingers trying to memorize it by touch.

They’d told me they would leave me as long as possible before the service but I didn’t want to rush placing her down either. It was only 20 minutes before her service and I panicked, time was ticking too fast, my hour was almost gone and I didn’t want to put her down, I’ve never wanted to put her down, I’d always planned on carrying her around with me in a babywrap, we tried it briefly once at home but it was tricky with her oxygen tube and her mini sats monitor wouldn’t pick up a steady reading so I had to give up on the idea pretty quickly. I squeezed her tight to me. You read stories about mothers who lose their child and howl, a primal sound, loud and unfettered. I done it a few times since I lost Amber, it’s unstoppable and unexpected when it happens and I wanted to let it out now but I was aware of voices in the corridor outside, of people already sitting in the chapel, I could feel it building up though so I buried my face into her blanket to smother the sound. Nothing I write will describe that moment. Nothing I write is powerful enough. Nothing I write can explain the physical pain of losing my baby and having to put her down at that moment. Only someone who has lived it can understand I think, I’ve lost loved ones before including my beautiful brother five years ago. I didn’t think there was worse pain than that. There is.

I smoothed out her swaddle in her casket, I placed in a letter from her father and laid her gently on top of it. (I won’t be writing about him, suffice to say he isn’t part of our journey through pregnancy and scbu/nicu and he only met her a couple of times. I’d said I’d place a letter for him with her and I did. Whatever he had to say is between himself and Amber, she knows the truth of everything so I leave it to her wisdom.) I placed her bunny and her hare at the top of her casket, their arms embracing her. Her owl which I bought for her one month birthday (my spirit animal) at her feet for protection. Her hare has my moonstone, my hair and a silver heart. I checked her amber beads were still in her left hand, a tiny silver heart in her right. Pandoras paw imprint at her feet, her monkey teething ring she would cling to on her chest, my kiss imprint tucked by her cheek. Photographs of Coreigh, Oliver and I and a rainbow at her side, Pandoras photo at her head standing as a protective guardian. My mums, Coreighs and my letters slotted in at her side and the a photograph of Amber and I at the other. Her ‘Guess How Much I Love You’ book went in there too. I tucked some sucrose into her blanket, a scbu dummy sat on the bunnies feet. Everything carefully placed. Amber lying on her right side slightly, how she always preferred to sleep. She was still swaddled in her cosy blanket, I didn’t want her to be cold. I went to get Coreigh, I’d had two tiny posies of roses and calla lilies made, one pink, one white. Coreigh chose white and placed it with Amber and I placed the pink.

They came to tell me it was time. I had one more minute with her. I lost my breath, I sobbed, I kissed my little one for a last time, whispered I love her and then had to leave her. I walked back into the room behind the chapel and waited with my parents, daughter and her fiancee and Jess and her husband until it was time for us to go through.
None of it felt real, it still doesn’t. I’m writing these words and I can’t believe it’s happened. I can’t believe my little girl is gone. If I close my eyes I am back on the ward with her, listening to the beep of the monitors, spending my time untangling her wires and tubes, stroking her feet, singing to her endlessly and staring in wonder at this miraculous little creature that was all mine.

I question sometimes why I’m writing this all here. All my posts up until losing Amber were my updates for friends and family on social media, a way of letting everyone know how she was, how I was. I’ve always journaled and unable to do that in hospital it was also a way to remember, to keep note of everything. Now I’m home but initially I didn’t have the time to do my usual creative journals and now I don’t have the heart, not yet. So I suppose I have multiple reasons for creating this blog. Typing is easy, I WANT to remember everything, every minute, every second of having Amber. I want to feel the pain because the loss of her is so intense, beyond anything I ever imagined but because I can barely function at the moment writing it all down helps get it out, helps me formulate thoughts briefly. I don’t know how to do this, I don’t know how to live or be or survive without her, writing this keeps her ‘here’. If I’m writing about her she’s not really gone, she’s still with me. She’s also all I can think about but I’m exhausted, talking is exhausting, trying to be ‘ok’ is exhausting. I have messages piling up in my inbox and no energy to reply to most of them, I feel guilty for not being able to reply so I send the hearts and fox emojis usually. I just want my baby. I just want her back. I can’t accept she’s not here and I don’t want to. One day I will write our early story, how I decided to continue on with my pregnancy and I hope it may help another family decide, know where to go for advice and help. Right now I’m writing trying to survive my loss. I want the world to know my little girl and how amazing she is. I want her memory to live on. I’m terrified of five, ten, twenty years time when she is in the ‘past’. So I write, and I talk to her constantly, I struggle in company because it’s harder to feel her when there’s distractions and I cry so much. I don’t know what my ‘life’ is any more or where to go from here.

Dark Days

19th December 2021

So I finally did some washing and took it to my friend Islas house to dry, it felt ridiculous carrying my wet washing across the road but nothing makes sense to me anymore anyway.

I can’t get the thought of the pink satin lining Ambers casket out my head, it’s so ‘chintzy’ and so far removed from what I intended her casket to be, natural, earthy, simple. Don’t get me wrong, I’m grateful to the funeral directors, they’ve tried to make her look beautiful in there, tried to make it ‘cosy’, it’s just not me. It’s not Amber either. My mum asked me if I could ‘live with it’ but I just can’t shake it off, the feeling it’s not ‘right’. I’m going to go back tomorrow and see her, take one of her swaddles and a needle and thread and re-do it. If I don’t I know it’ll bother me for the rest of my life that it wasn’t right and how I wanted it to be for her. I think I’ll be there a while tomorrow again, it’s going to take some time and I need to sit quietly with her too, read and sing and cuddle her. I don’t know if I’ll be able to on Wednesday, maybe tomorrow is the last time I’ll hold her. Maybe I’ll go Tuesday too. It’s a 90 mile round drive to see her but the days without her are so hard and time ticking by too fast.

My neighbour does beautiful woodwork, I asked him if he could make me a box to keep her ashes in. I don’t want to look at the cardboard scatter tube they’ll return her in. My baby girl reduced to a cardboard tube, it’s hideous. He came around yesterday with a gorgeous wooden box he’d already made, he’s going to put foxes on the outside for me but wanted to check I liked it first. I do, it’s a more fitting place for her to rest. At the same time I don’t… looking at the container that will soon hold what remains of my baby girl is unbearable, unimaginable, unthinkable, unacceptable. Inevitable.

A couple of the Highland newspapers want to do a memorial piece for Amber. Isla started a Go Fund Me for Amber and I and one of them picked up on it. Another had approached the funeral directors. I’m not sure, I generally am a private person, I’m not that keen on media or putting myself ‘out there’. Perhaps it will help this blog? Perhaps it will help another family? Perhaps it will make Trisomy 18 more spoken about, more recognized, more understood? I’m just not sure, I don’t want to have to talk to people I don’t know right now. I’m hiding, frozen and I don’t want to face the world. I just want Amber back.

The Go Fund Me was unexpected, it’s a beautiful gesture and people are so generous. It will help so much so if anyone has donated who is reading this now… thank you so much. you have lifted some of the financial burden that losing Amber has brought. This journey with her has restored my faith in human nature, made me see with new eyes peoples kindness and generosity. I was getting a bit cynical before this pregnancy I think, this is clearly another of Ambers precious gifts to me.

It’s cold and damp today, it suits my mood. I’m so tired but need to walk my dog soon. I wish Amber was with me, I had so many plans to tuck her safe in a baby wrap and carry her with me, warm and safe while we walked by the river, through the forest and in the hills. The ache is constant, the pain is physical. I never knew pain like this could exist.

My little fox has gone to the stars…

8th December 2021

Amber My little fox has gone to dance amongst the stars. My tiny little Warrior Queen.. I am broken.I love you all the way to the moon and back and will do forever and for eternity. My brave, feisty little fox, you have touched the heart of everyone who has met you and I don’t even know how to breathe without you Amber Marina Lily, 14th September 2021 – 8th December 2021

9th December 2021

My perfect, perfect little fox Oh Amber I miss you so much and it’s not even two days, I don’t know how to breathe without you. The house is too quiet, I miss the sound of the oxygen, even the damn beep of your sats monitor and most of all I miss your sweet, beautiful and feisty self and the weight of you in my arms Devastated broken empty. I should be planning your first Christmas not your funeral I love you to the moon and back. Always xxx

@katieowl1700
♬ original sound – katieowl1700

11th December 2021

My girls

12th December 2021

First night without Amber at home I feel empty and like I’m dying inside. Hate my house right now, nothing feels right. I miss the weight of her in my arms. A day making funeral arrangements when I should be planning her first Christmas. Broken.

It’s not just my devastation, Pandora slept every night with her head over Ambers feet (I’d made a wee nest for her so she could safely co-sleep with me)Every night still, Pandora sleeps in the same spot and looks for her

13th December 2021

broken

14th December 2021

‘I have heard it said that the greatest loss that a human being can experience is the loss of a child. This is true. It doesn’t just change you, it demolishes you. The rest of your life is spent on another level.’ ~Gloria Venderbilt

Thank you for today Elizabeth I’m so glad that you’re speaking for Amber and I next week, I can’t think of anyone better and I’m certain a little fox pushed me to ask you too I’m also so grateful you brought me a little bit of calm today, you helped me survive another day xxx

15th December 2021

I wish you were here Jemimah I wish we could go back to that day I miss her so much

One week without you Amber and it’s killing me. Every day without you has been unbearable but having to register your passing today officially has shattered me.

16th December 2021

Not a happy post but I have just heard from the funeral directors that Ambers casket has arrived.I was determined my little fox would not be in a ‘box’ so I have had a custom made wicker casket made just for her in Dorset. So grateful to Cath and her husband for the care they have put into creating this and the attention to detail. This wasn’t something I wanted to have to order but they have made it as special as they can for my little one.

A friend who has just lost her little boy three weeks ago posted this poem to my page…

“It was the night before Christmas and Santa was busy making his rounds. He was light on his feet making sure he didn’t make a sound. But he took notice that some homes didn’t have that Christmas Glee.so he decided to stop because he thought that just can’t be. He crept in a mommy’s bedroom and stopped dead in his steps, as he saw a little angel hugging his mom as she slept. The little angel looked up and cried ” oh Santa you are finally here!! I’ve been waiting for you to help me let Mommy know I am near”. Santa picked up the wee angel and asked him ” What can I do? I’m just a simple toy maker I can’t make your mommy’s dreams come true” .So the two of them sat and they sat for a while until the tiny angel jumped up and screamed with a smile. “let’s leave her a sign a beautiful sign from above, let her know it’s from me sent from heaven with love”!!!So Santa dug and he dug deep, in that big glorious bag that was filled with lots of treats .He pulled out a beautiful white feather that look like it was made out of snow. And he thought such a beautiful sign that only a grieving mother would know. He placed it on her nightstand and kissed the angel on his head. Then placed him next to his mom as she slumbered in bed. I think I’ll stay here with Mommy and visit her in her dreams tonight, She misses me dearly and needs to know I’m all right. Santa made his way to his sled, And wiped a tear from his eye. He fell to his knees and managed to cry. Merry Christmas to all the grieving mothers across this big land. And let it be known your angels are with you holding your hands….”

…Amber left me two white feathers on Wednesday. One in my kitchen and one underneath the bag which contained her oxygen cylinders in my car.

17th December 2021

Her funeral is arranged for Wednesday 22nd December… I don’t know how to breathe. I don’t know how to be here without her.

My house used to be my sanctuary, it used to be my place to retreat, to relax, to meditate and to be creative. It feels alien to me, unfriendly, empty, quiet, dead… from the crazy invasion of hospice workers, doctors, nurses when I first got Amber home. The loud hum of her oxygen concentrator, the beep of her monitor (that I hated but now miss), the intense routine of her medication and feeding times, the way I could cuddle her whenever I wanted to (a novelty and dream come true without asking permission from a nurse in the hospital), her sweet face next to me when I went to sleep at night and woke up in the morning…that brief dream is gone. Over. Finished. I feel empty, lost, heartbroken, shattered, desolate, devastated…none of these words are enough. None of them describe how I feel. None of them come close.

The only sound now is the incessant alarms on my phone, set two hourly for her medications and her feeds. I’ve managed to turn off the overnight ones but the daytime alarms goes off constantly. I can’t turn them off yet. I only just emptied her bathwater today. I keep fairy lights lit constantly in the bedroom as she never slept in the dark and now it seems neither can I.

I even miss the hospital wards, desperate as I was to escape them. I feel institutionalised and miss the routine. The safety of knowing she was cared for by the best medical treatment, by interventions, by doctors and nurses I trusted and came to know well in that place. Of knowing she was ‘ok’ and THERE and mine.

Her pram sits empty in my kitchen. Her playmat where it was before she passed, with her bear from her flight to Glasgow lying on it, along with her firefly pram toy. Her fluffy blanket is exactly where it was in her baby box where she’d sleep in the living room and I have three babygrows she wore and I haven’t washed… they smell of her. I need to do washing but my airer still has her washing on it and I haven’t been able to clear it yet so I have nowhere to dry my own. I can’t move any of it.

I wear a fleece heart she slept with next to my heart, I don’t know that I’ll ever be able to be without it now.

I missed her so much on Wednesday I went and sat and cuddled her in the funeral home for an hour and a half…

Today I was there for three and a half hours. I just sat, read to her (‘Guess How Much I Love You’ and ‘The Velveteen Rabbit’) and sang (‘The Lion Sleeps Tonight’) I cuddled her and cried. I looked at her sweet little face, she just looks like she’s asleep, dreaming but will wake up any second. Except she doesn’t. I cried more. I cried a lot.

I rewrapped her in her blankets, rearranged the satin lining they have placed in her wicker casket and pinning it as neatly as I could (I hate pink satin). Made sure that her teddies (her rabbit, her hare, her owl and her fox. The fox I will bring home on Wednesday, no doubt to cry and rage and despair over at the devastation and unfairness of her loss) were arranged just so, that she had her amber beads in her left hand (part of a necklace I was given as a gift whilst pregnant. I have split it in half, she will keep half and so will I.. a link between us… I hope you don’t mind Alex, it felt ‘right’) and her silver heart in her right hand (cut out from the silver keyring I now carry… part of my heart forever gone). Sprayed my perfume on the knitted square which lies beneath her head. Tucked the mould of my kiss and the pawprint of Pandora into her blankets (Pandora’s pawprint at her feet where she slept adoringly, my kiss by her cheek that I kissed so many times I lost count.) Added her monkey teething ring she used to cling to in hospital. She has her hare with a gauze bag around its neck, it contains a moonstone (my birthstone), a silver heart, a lock of my hair (as I have a lock of hers). The book ‘Guess How Much I love You’ is placed to one side carefully. Photographs of her and I, Coreigh, Oliver and I, Pandora and a beautiful rainbow are place where she can see them, her family around her. I straightened the knitted pink hairband my sister Kim bought for her, it covers the shaven front of her hair perfectly. I was going to keep it as a memory but I get a strong impression Amber wants to keep it herself, she looks so beautiful of course she can. I’d give her anything she wanted if I could. I’d give her my own breath again if it would bring her back to me as it did before. A little knitted square is tucked into her babygrow.. I wore it in my top against my skin before taking her to the funeral home… we got it in scbu, we would each have a square and I’d swap them daily when she was first born so we could smell each other all the time. It was never natural to be apart, even more unnatural now.

The time with her passed so quickly today. The owner of the funeral home looked in the room, he said we looked beautiful together. I cried again.

The lady who works on reception came in with coffee, I said I was sorry for staying so long. How it was silly really, her spirit is no longer in her body but I missed the weight of her in my arms. Miss gazing down at her little, delicate face. She said it was fine, whatever helped me to cope, to ‘get through this’.

Nothing can help me ‘get through this’. I just want to see her wide, dark, wise eyes open and watch me again. I want to feel her warm and snuggled in my arms. I’ve wrapped her in one of her warmest blankets, a heavy fleece lined cable knit, I don’t want her to be cold.

I’m dreading next Wednesday. I feel everything acutely. I feel nothing.

I miss you little fox.

Home… week 2

4th December 2021

I realise I haven’t updated since Amber has been home and I’ve also been crap at replying to messages! (They are piling up in my inbox and I PROMISE I will reply to you all as soon as I have a minute!) I love you all and thank you for all the love being sent to Amber and I Just to reassure you all, despite having at least two, incredibly scary nights where I thought I was going to lose her, Amber is doing well. She has a cold currently which is a worry alongside her Edwards syndrome so her care is taking even more of my attention than usual ans I’m averaging3 hours sleep a night ( I didn’t know that was possible!)She did have a very important and special visitor yesterday so here’s the photos from then and I’ll do a proper update when I have some energy (and sleep!)

Home from NICU.. week 1

25th November 2021

And we’re home and finally have a brief little bit of quiet in amongst the chaos Crazy busy day on three hours of sleep, rushing around from six this morning, over 3 hours driving, trying to unpack over two months of stuff, medical equipment and medications in an hour ready for ambulance arriving, utter panic and terror at how Amber would be on her transfer, even more fear at her switch from cpap straight to low flow and relief at how well she appears to be doing so far () A ridiculously busy house of her neonatologist, neonate paramedic, paediatrician, four hospice ladies and a pizza delivery from Coreigh and Dan () plus shopping sent from Jemimah ( Jem I am having a wee gin in my bath while Janice and Julie from the hospice watch Amber for a little while downstairs… thank you sweetie xx) I am exhausted and relieved, scared and joyful all rolled into one. To everyone, thank you for all your lovely messages and the love you’ve sent Amber and myself and the understanding I’ve not been able to reply to anyone today. (except one stroppy individual who I won’t name.)I’m going to take the next day or two to settle in and try get into a routine. I’m getting used to the fact we’re not in hospital anymore, as is Amber. It’s a HUGE transition. We’ve been in now almost two and a half months and I’ve only been home for one night in that entire time! The quiet is weird!!Love to you all from myself and my little fox xxx

7 Weeks in NICU and counting…

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

Glasgow NICU

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

The start of a new month…

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.

Beginning our SCBU journey

(Special Care Baby Unit – Raigmore)

16th September 2021

Note to self… Don’t ‘plan’ a day when Amber is in intensive care… Terrifying incident this morning which threw my careful plans of lots of Amber time to be alternated with important time for me to eat and rest so I can recover completely off course… However some test results have turned out more serious issues with her heart and then Amber had other ideas and scared the life out of me just as I was about to come back to my room at lunch as her oxygen plummeted suddenly, alarms and there was a sudden rush of doctors around her… it’s made my day more tense, worrying and I’ve been overwhelmingly weepy but she’s been stable and content the rest of the day and I had more cuddles which were much needed. Off for a goodnight visit with her in a minute . I love her so much and am trying to relax and enjoy every second but today was a reminder of how fragile she is … pray for my baby girl

17th September 2021

Lying in bed missing my baby girl and her nurse has just sent me this photo from the SCBU messenger

18th September 2021

Finally real ‘mama’ moment and Amber no longer needs donors milk 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!

Amazing mama milestone moment … I got to change Ambers nappy for the first time this morning! She’s still under her blue light for jaundice so here’s a gorgeous foot photo! Clearest picture I could get under the blue and she has the most amazing feet in the world!!!

19th September 2021

Ambers special care nurses are amazing Woke up to this message from my baby girl

20th September 2021

Lovely day with Amber today All very calm and relaxed, she’s off her uv light now which is fantastic and means I can see her gorgeous wee face, she can see me and I can now take better pictures and videos Her ventilator pressure has reduced since yesterday which also good, it was increased very slightly this evening but not to its previous levels so that’s good.We have a big day tomorrow of test/scan and X-ray results, also an in-depth look at how she’s doing overall abs if we are close to getting her off the ventilator… honestly I’m terrified and have spent a lot of this weekend in tears (hormones, pain, exhaustion, overwhelm, worry & stress… all mixed together with happiness and joy because I’m so in love with her ) but with regards to time spent with Amber this weekend has been wonderful Today we’ve been singing (I’m a terrible singer so been careful to do this quietly so only Amber can hear! She loves my singing!) changing nappies, videoing, snuggles (hand/foot/ear and head strokes), got a gift bag of books (so tomorrow is reading day!) and tonight did some footprints.. one of her nurses thought it might be a good idea in case they take her off ventilation soon.. she’s a real wriggler even whilst sedated on morphine! When she comes off the morphine she’s going to be much more active and so it’ll be harder to get clear prints, plus she has clenched fists (a symptom of her Trisomy 18) so definitely easier whilst she’s a little sleepy The little yellow wool squares around her bed by the way are there for an important reason… I have one with me which she slept with and smells of her, it brings me comfort if I’m missing her, the one in her bed to her right smells of me (I slept with it in my bra!) to comfort her, I’ve placed another two in there for her dad to comfort him and one for Pandora (our labrador) so she gets used to Ambers smell before I bring her home. So here’s a small selection of mine and Ambers day today

Morning message today

Big update today So had a bit of a hectic ‘all over the place’ day today, lots of visits from various doctors/nurses/feeding support, phone calls, medical stuff with other patients in Ambers ward and just a bit of a ‘messy’ day and really only got my quiet Amber time tonight. Very important ward round this morning, with me eavesdropping on the 3 doctors looking at Ambers latest stats/results and reactions. (They don’t mind) and then having to wait until Pheline, Ambers paediatrician was free to come see me at lunchtime to discuss ‘The Plan’ as she had other appointments this morning and wasn’t at the ward round. So to my inexperienced ear (getting much more knowledgeable now though!) what was being said was pretty positive… Amber has been triggering well… this means taking breaths herself even though she’s ventilated.. the ventilator kicks in if she doesn’t take a breath and she has been breathing well ABOVE ventilation. Her ventilation pressure has been reduced, her BP stabilised, sugar levels good, CRP reduced to low levels, good urine/bowel movements, alert, comfortable, lots of other medical stuff etc etc… so I was feeling pretty positive! Pheline came to see me at lunch time and she agreed things are looking pretty good and Ambers doing really well, although obviously she is a poorly baby. I’ve been speaking a lot to my sister Jo-Anne (she’s a doctor for those of you who don’t know) who pointed out the only way to know if a baby is ready to come off ventilation is to ‘test’ them and also thinks Ambers doing really well as the week has gone… she has been an incredible support all the way through my pregnancy, not only for medical stuff but emotionally keeping me going with her daft daily messages and love Also Marty McCaffrey, my trisomy expert doctor contact in America has been amazing. I have sent him so many long, rambling and usually emotional messages, full of questions about EVERYTHING! He replies so fast, with great detail and usually lots of questions about Amber, her stats and her treatment and gives not only advice and his opinion but also support and gentle kindness. So… The Plan…Ambers morphine is currently being reduced gradually, the aim being by tomorrow morning it will be stopped. She will receive a loading dose of caffeine. They are going to check her haemoglobin, if it’s low (hopefully it’s not) she will get a transfusion, her dopamine for lowering her BP is being reduced gradually.. reducing her morphine should also help her BP and then…. They are taking her off the ventilator, switching her to CPap, a non invasive ventilation and seeing if she can breathe and manage. I’m excited but terrified too… this is a HUGE moment… can my baby girl breathe herself? If she can this is a massive step to getting her home. If she can’t then she’s to go back on the ventilator and a second opinion on next steps would be sought by her medical team, (potentially Glasgow.)They are also increasing her milk feeds, stopping her antibiotics tomorrow, checking her renal ultrasound results (initial result is looking good) and the Glasgow cardiologist has been consulted and doesn’t think she needs diuretics for her BP at this point (might change) He also has no plans to do anything with regards to her heart problems at this point… still not an outright no and I already knew any heart surgery would be in a few months so that is something I will deal with as the need arises, he will review her heart later I’m sure. So yes really big day tomorrow and I’m nervous but hopeful so again… I’m asking you all for your prayers, healing or whatever power you believe in for AmberAs for the rest of my day, I had a second day alone.. Coreighs car broke down so she couldn’t come visit 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 Reading our first book and singing, nursery rhymes, cuddles (more hand and foot holding, face stroking and massaging her little arms, legs and ears) and photos. So here’s a little selection from today, mainly of Amber but also a couple of my bruises… they are vicious!!! Both wrists look battered from attempts to get a drip in my arm last week in labour and my stomach, bad enough from the c section but having painful injections every night to prevent blood clots is brutal and these are the bruises to prove it!! Hopefully after tomorrow Amber will be on CPap and I’ll be able to have the cuddles with her in my arms where she belongs (Ps… Tomorrow-Tuesday is Ambers ONE WEEK BIRTHDAY!!!! )

21st September 2021

Waiting nervously at Scbu… ward round started but doctors busy with other babies at the moment so I’ve not seen Amber yet and am just waiting for them to call me through when they get to her. Apparently she’s bright, alert and awake I’m not sure if she’s completely off the morphine yet but I’m guessing they have continued to reduce it so I’ll be able to see her beautiful eyes properly for the first time. I’m wearing my chime necklace today that Soraya bought for me to wear through my pregnancy… suddenly remembered I had it with me and thought it’ll help keep Amber calm and happy when she hears it I hadn’t made this next bit common knowledge to everyone when it happened as it was a comfort and surprise at the time and I wanted to keep it to mostly myself but a couple of weeks ago Amber had a Reiki attunement in utero. I am attuned to Reiki 1 and Amber made a connection with my Reiki master Elizabeth who ‘felt’ her request attunement. After checking with me she offered Amber Reiki 1 but Amber didn’t want it! She insisted on Reiki Master and so received it. Elizabeth told me Amber has a very special soul, very beautiful energy and her own way of doing things.. she (and I) don’t know what it means for Ambers journey but Reiki energy is beautiful and healing I’m happy that Amber has this gift and so grateful to Elizabeth for attuning her. So it seems my little Reiki Master, with her fox spirit animal/guide has started her journey with passion and strength and independence … I love her all the more for it. I have also realised it its the autumn equinox so a day of power and wonderful timing for Ambers 1st week birthday and her busy day to come! I have two incredible daughters and I am so proud of them both and so lucky to call myself their mum. Coreigh and Amber… my girls

So excellent reports on ward round today, oxygen levels on ventilator low still, blood sugars stable, her morphine was reduced to 0.3 and her dopamine to 0.5 and herBP has been sitting in the 40s and stable (I know this won’t mean much to many but having been staring for a week at her monitor it’s all good and I want to keep a record of her progress)She’s triggering (taking breaths herself) really well (up in the 60/70s) and is bright, awake and moving. Her tidal volumes are looking good, blood gases very good, tummy no tender and nice and soft and good urine output. Good pulse, urine and her CRP has continued to come down so she had her last antibiotic penicillin at 7am. Only issue is she started to vomit overnight, not nice with a tube in her throat so they’ve temporarily stopped her milk feeds but said it’s very common when making lots of changes to a baby’s treatment and not to worry, they’re keeping a very close eye on her.Stats at 11.30am were Heart rate 155/Oxygen 96/Blood pressure/52… all very good!! So while I was there they completely stopped her morphine and her dopamine … my heart was in my throat when they did! Apprehensive, worry, hope and excitement.. it’s going to be a LONG day!Not sure when ventilator is coming out.. they like to wait until morphine is out a babies system and evening is not ideal so they’re monitoring her closely all day, having lots of discussions, talking to the doctor who’s working tonight to see how they feel about everything and then going to decide later. Might be today/tonight or tomorrow… not sure yet but it’s happening and so far Amber is looking amazing and doing really well! Happy 1st week birthday baby girl! Mummy loves you so much Amber, my breath is swept away every time I look at you You are amazing Now breathe my little fox breathe

Ok just seen doctor, Amber is doing amazing The decision has been made to leave her on the ventilator until tomorrow however as it is safer for her.They’ve decided to put her on a low dose of morphine until 4am and then take her off it again so by the time the doctors are all doing ward round again tomorrow the morphine will be out her system, they can check she’s still ok and then remove ventilation while the full paediatric team is here during the day.All the doctors, especially including the one on call tonight and the nurses all feel this is the safest option and I agree. This is safest for Amber, rather than doing it overnight when less doctors around. Also the ward is very busy and so Amber needs to have full attention when the ventilation is removed… and of course the other babies safety must also be considered.I’m feeling happy that this is what’s decided, the doctor earlier did say it was a possibility and pointed out the issues of removal on a night… at least this way I can sleep without worrying so much too!So … tomorrow is the big day and at least today we have seen that Amber is doing amazing off the medications

22nd September 2021

Full update on the events of day later but the most important thing is AMBER IS BREATHING She is off the ventilator, on CPAP and an hour and a half later her stats are good (slight rise in BP as she’s awake and a bit confused and upset at changes) and her doctors came assess her and to do her blood gases and they are VERY VERY GOOD!!My baby girl is kicking ass!

Cuddles at last

23rd September 2021

Morning message She’s doing really well! Fast asleep at the moment which is probably good as doctors about to check her and she’s getting very stroppy whilst awake! . Clearly she’s feeling better!

24th September 2021

Amber update!! Sorry had to take a day off yesterday as was so tired and just didn’t really feel up to writing a lot, had a quiet day sitting with Amber peacefully, having a midday sleep and later a visit off my mum and dad who are glowing proud grandparents 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. Selection of pics from our last two days xx

25th September 2021

Eyeing up mummy… ‘To cry, or not to cry – that is the question’…obviously the answer is ‘to cry’ 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 ) her nurse Mairi took pity and took over so I could come and get lunch.Feeling weepy today, Ambers stats are still all really good which is wonderful but she did have a bit of a temperature this morning so I held her tiny hand while the doctor had to take blood to check she’s not got an infection. Watching needles go into your tiny baby isn’t something any mother should have to see, (scbu is often such a difficult place to be, Ambers little room is full now and so I am not alone in my tears). Her temperature has come down now which is a relief, it seems to fluctuate from time to time so doctor thinks perhaps part of her condition but is running the blood tests just to be sure she doesn’t need antibiotics again.Looking forward to seeing Coreigh later… I need a hug from my baby bear and I love seeing her and my teeny bear together

A peaceful rest of the day Ambers blood test results came back fine and her temperature stayed down so all good Her PDA (patent ductus arteriosus) has almost closed, blood gases are good and her feeds are now up to 15ml every two hours from 2ml yesterday morning, lovely positive news. She is now definitely known as a diva! Leading the 3 boys in her room into bad habits of joining in her crying! She has a wicked little temper when she starts and so the nurses and I tiptoe around her bed and try to decide if we dare to wake her when changing her nappy! I love her little character and that she is feisty, though again… I find it hard and upsetting not to be able to scoop her up for comfort. I went for a power nap of supposedly 20 minutes after lunch and turned off my alarm in my sleep and ‘napped’ til after 3! Ooops but clearly needed. Had Nando’s for dinner courtesy of my ‘neighbour’ Tracy’s hubby, had a visit from Coreigh , a swift trip to Tesco (there really is still an outside world with fresh air!!) and back to see my two girls together… definitely proud mama bear moments and then after Coreigh went home () 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 So I’m back in my room but going to pop and see her before bed (I’ve discovered my weekends are easy to keep a quiet routine as the doctors do less with the babies and so long as all is calm on the ward it can be a peaceful place to be) and tomorrow hopefully if I’m lucky and there is enough staff maybe I’ll get a cuddle again Also Amber got some amazing footwear from her Auntie Toni. Never too young for beautiful shoes!! I love them!!!! So from my little fox and I goodnight, sweet dreams and keep your prayers, healing and positivity for her please . It’s giving both of us strength so thank you xx

27th September 2021

So I’ll write a full update tomorrow but anyone notice anything different!?…. #MyBabyGirlIsAWarriorQueen

So Amber!! Her temperature has been fine the last couple of days, it may be just part of her condition that it fluctuates, we shall see. Her lipids have stopped (fats) and her TPN (intravenous nutrition) is being stopped today. Her cannula was taken out yesterday so she has both her wee hands free now and her UVC line comes out today (so relieved it lasted so long but also won’t be sad to see it gone!) She may have an eye infection but they’ve taken a swab today and she’s still a bit jaundiced so they’re checking that but said it may improve when the TPN is stopped too. Her feeds are now to be fully my milk from today.Obviously the most exciting news is she is off CPAP! Totally an accidental discovery yesterday afternoon when her nurse was taking out her cannula and I was doing her nappy. Her nurse Shelaigh took her off CPAP ‘briefly’ so I could clean her face and have her lifted to me for cuddles with the full intention of reattaching it once she was in my arms… but all her monitor readings stayed stable! So after having checked with the ward sister and waited over 20 minutes she called the doctor to see if we could carry on and see if Ambers stats remained ok. For two hours she was completely off any kind of oxygen support She has now been placed on ‘optiflow’ which is a nasal high flow air/oxygen and she is doing amazing! Her wicked little temper has vanished! She is happy, content and comfortable So once her UVC has gone all invasive tubes and needles will have been removed (she may need a cannula again at some point but for now she is free of it) Everyone is delighted especially me! The nurses all think she is wonderful and the doctors I think are very impressed with how well she is doing! She often has visitors pop by to check on her from midwives or staff on my ward who have heard her story! Bought her a little red teething monkey.. though her hands are clenched she likes grabbing wires and tugging at them so this gives her something to hold.. she seems to like it once I fold her little fingers around it. I should be getting a scan this afternoon as I have a hard lump near my c section scar which is very painful, they think probably nothing to worry about, possibly a haematoma but want to check it just in case. At least I don’t have to go far!! Having a rest now and hoping they take me for my scan soon before I get Amber back in my arms! I don’t want interrupting! I’m glad it’s getting checked though as it’s been bothering me and doesn’t seem to be improving, if I move the wrong way it feels like a knife going in Here’s a few pics from yesterday and today

28th September 2021

Pretty in pink today

First cuddles

16th September 2021

Utterly exhausted, in pain, overwhelmed, worried and completely, totally and wonderfully in love I have read everyone’s comments and they’re gorgeous so thank you! I’ll update properly tomorrow but the most important thing today was I unexpectedly got my first cuddle and was finally able to relax a little and had a little sleep with her in my arms for a while

Sisters…