January 2022 – Amber, The Trisomy 18 journey of 'my little fox'

7 weeks later…

(Please be aware that this is not a happy post. It may be triggering for some)

I spend most my time in tears, days are a struggle and I am surviving hour by hour. Life seems pointless, empty, hopeless and I feel like a ghost wandering in my house.

I’ve been told losing a child isn’t like any other bereavement, it’s classed as trauma and I already carry so much trauma from my pregnancy, Ambers diagnosis, the months in SCBU and NICU and all that happened there, not to mention all that occurred when we got home.

I have so many happy memories of her too, I’ve been writing them down as I remember each one. Each a precious part of her and I and I don’t want them to fade with time, I don’t want to forget any of them. I can look back at them and hopefully they will make me smile rather than bring me to my knees crying as they do right now. I don’t want to lose any of these memories, they value is worth more than gold and in the midst of everything else in my head I need to cling to them and keep them protected.

But then there’s the other stuff, all the stuff which overwhelms me and seems to shadow my grief. The things that happened which won’t allow me to sit just with my grief and try to deal with her loss but that often overpower me with the despair of what she and I lived through. Of all the hideous moments that I can see in my mind. I’m having regular flashbacks and I can’t turn them off.

I can hear her screams the weekend she got taken so ill and rushed to Glasgow. I go dizzy when I remember how she whimpered as I’d tried to retape her tube and prongs on the Saturday but had to push in the tube a little as it was starting to protrude, not knowing that her bowel had been punctured the day before. I didn’t know, no one knew until she had her surgery on Monday, how could we have? I know logically it wasn’t my fault. I know that they only got a doctor to come to the room because I insisted that something wasn’t right, that she didn’t whimper like that. I know that I insisted I knew her better than anyone and that she was in pain and no, it definitely wasn’t constipation or a temperature. I KNOW this. But I still relive it, I still feel sick and go dizzy and feel guilty that I retaped that damn tube.

I sit on my doorstep on a night and smoke… (stupid stupid habit to start again having been quit for almost 4 years) and I can see the towering building and lights of Glasgow hospital in front of me from the end of the long path you walk down to get there. I can feel the exhaustion and despair I used to feel as I walked down that path, pushed aside by the eagerness and excitement of seeing my tiny daughter who I’d probably only been away from for an hour or so. I’ll never be able to walk that path again and see her but every night, there it still is as I sit on my doorstep.

Sometimes I can see the ambulance as it parked outside my house bringing her home. I can picture the sequence of events that day as clearly as if they were happening now. The terror of wondering if she’ll breathe as they took her out the portable incubator but the desperation to have her back in my arms. I’d had to leave Glasgow early in the morning without her to drive for 3 hours and then spend an hour trying to unload over 2 months of suitcases, medical equipment and four bags of medications from my car and get the house ready for her arrival. The picture is vivid.

The noise of the monitors as they flash and buzz and beep, the sound rings in my head in the early hours of the morning. They wake me in the darkness, as do nightmares that I can’t remember on waking but leave me breathless and crying. I lay and try to quieten my mind but there is no relief and there is no peace.

There is so much more, so many times that I can see, clear as day as if I’m there in that moment again, too much to list here, some I don’t want to write about in detail like having to resuscitate Amber on my sofa or the moment they took her to theatre.

All of it haunts me and I have no control over when these flashbacks come.

I’m struggling to get out the house much, it all really depends on that moment in time as to whether I actually get out the door or not. There’s times I can’t breathe or I panic and I just close the door again and leave it for another day. I was thinking I’d quite like a glass of wine tonight but today has been a particularly bad day and I’m not sure I can go out to buy any. So be it, it’s maybe not a bad thing.

My psychologist is calling tomorrow, she’s lovely and gentle but conversations are hard. She’s told me I have PTSD and so is going to try get me a referral for a therapist. How long that will take I don’t know but I’m starting to understand that it’s not just grief I’m dealing with, it’s more complicated.

When I started this journey with Amber I knew losing her was a possibility but I was never prepared for HOW painfully devastating it would be. How the pain is physical, how the physical loss of not having her in my arms would sweep me away and I’d lose myself completely. How I can cry for days almost nonstop and then go numb and emotionless from exhaustion for a few hours before the tears begin again when I look at Ambers photo or have another flashback.

It seems strange, writing this here and showing it to the world. I don’t mind those I love reading it though, I’m finding it hard to talk much right now or express how I’m actually feeling when talking, people don’t really know what to say. It’s hard when all I really want to say is ‘I want my baby back.’ on a repeated loop, so if I write it here they may read if they wish.

Maybe it may help another parent going through the same or similar too, perhaps make them feel less alone and like they’re not going crazy for feeling like this. Maybe help someone realise it can be PTSD as well as the already amplified trauma of losing your baby/child.

Partly because writing how I’m feeling helps get it out my head for a moment or two, makes ME feel like I’m not going crazy. This isn’t a post I’d intended on writing but when I decided to blog Ambers journey, something I’d thought about during those long days in the hospital, I’d wanted to be true to her and this is still her journey too. How I’m feeling now is all because of Amber and how much I love her. How my little girl was an incredible, strong, brave and unique soul. My little fox has a legacy, her impact on me is profound. She has touched hearts across the world. I want the world to remember her, how special and amazing she is. How I can still feel her around me at times, not as often as I want but I hope as time moves on I will be able to have contact with her more, perhaps if I can clear some space in my head it will be easier for her to make her way through.

I hope one day I will be able to read these words from a better place, know that I can cry a little less and smile a little more when I look at Ambers photo or watch videos of her.

I won’t ever be the same, I won’t ever heal from this. I know that. The only thing I want is the one thing nobody can give me, I want my baby back. I want Amber back in my arms.

From the beginning, 2nd Trimester…

So I finally had a picture of my little one and I felt like I could relax a little and start to actually plan and dream of her future, of our future. I placed my scan photo on my dresser where I could see it every day and to remind myself that she was safe, she was ok (like I said, I just always knew I was having a little girl, there was never really any doubt in my mind and I’d already got a list of names with Amber Lily right at the top)

I’ve always done a lot of journaling, both elaborate memory keeping journals which I create myself by hand and for a few years now I’ve also kept a bullet journal so I began to use it to plan everything. My work, finances, lists and lists of items needed both both for her, for my pregnancy and labour and pages to mark milestones of my pregnancy so I wouldn’t later forget important dates such as my first scan or her first kick. I’d been such a young mum with my eldest daughter and there was so much I hadn’t been able to do or buy for her, (like a beautiful pram for example) and I’d saved up enough to be able to buy pretty much everything I wanted for Amber. (I’d found this fairly easy during lockdown as there was nowhere to go to spend money, though I appreciate that I was incredibly lucky to still have a steady income throughout unlike many.)

I made pages for all my maternity appointments, I was already aware that I would be having more than normal due to the pregnancy already been classified as higher risk and that I would be seeing my obstetrician. Little did I know at this time how I would have to expand my appointment page significantly in just a few weeks to accommodate a bewildering number of scans, checkups and long meetings with doctors.

I’d finally decided on my ideal pram and ordered it almost immediately after the 12 week scan. Despite careful budgeting I wouldn’t have afforded it new but the advantage of baby equipment is obviously people sell items which are immaculate. So after some searching I risked it and bought it from a small company on eBay and it was pristine, honestly you could barely tell it had been used at all. Before my next scan I’d already bought my maternity clothes (I needed them! My stomach was already growing early though it was!) her highchair (very early yes but in my defence it was on offer and I also have a grandson who would use it in the meantime), her bath, beautiful blankets and an array of muslin swaddles. I resisted buying clothes until I had confirmation she was a girl even though I knew in my heart she was.

My pregnancy with Amber was never fully relaxed. I still had fears in the back of my mind about miscarriage even after my 12 week scan. Covid was a frightening concern, there were too many stories of other mums being badly affected by it, evidence of an increased risk to pregnant women, a higher chance of ending up in intensive care or on a ventilator whilst pregnant, not enough was known about dangers to unborn babies. The vaccine was still new and not enough known about it’s safety during pregnancy so it wasn’t an option and anyway I was wary of putting anything into my body that would cause any harm to my little one. There were still restrictions about travel and mixing with others. I spent much of my pregnancy alone apart from my ‘bubble’ of my daughter, her fiancee and her little boy. Everyone else I met outside only, socially distanced and I prioritised the safety of myself and my baby. It was only temporary was what I told myself.

I was more exhausted than I expected to be during the second trimester, I’d had terrible insomnia since very early in the pregnancy and hoped it would ease but it hadn’t, concerns about my back as I suffer with chronic back pain (normally I have a procedure done called a spinal denervation but I’d missed it for two years due to one of my previous pregnancies and then because of covid restrictions.) I also had pelvic girdle pain which was become an issue.

I have two jobs, one running a post office, the second as a glassblower,. It felt reasonably safe in the post office, it’s tiny, rural, has minimal customers and I work in a fortress counter so was fully shielded from any potential covid risk. I was on furlough from my second job but knew the time I should have been returning was getting closer and this was a huge concern as it’s in a very busy tourist location, not a risk I was happy or comfortable with and my midwife and sister (doctor) were in agreement but I had an upcoming appointment with my obstetrician so this was something I also needed to discuss with her.

On the 20th April, exactly 16 weeks pregnant I listened to Ambers heartbeat for the first time. I had to request it as they usually wait a little longer but it was beautiful and strong and she was a wriggler! Mairi had to chase her round to find her, she must have been doing somersaults in there! Everything seemed to be progressing perfectly and I recorded it so I could listen to her reassuringly whenever I wanted.

Three days later I had an online video appointment with my obstetrician Kate. We talked through rough birth plans, I was to be scanned every three weeks from 27 weeks (no complaints there, the more times I could see my little one the better!) and I would be induced by 39 weeks if labour hadn’t already started by then. The likelihood was I may need my labour to be sped up (they seem to often be slow in my family) and the possibility of an epidural was discussed depending on how my back held out, it wasn’t at all what I wanted but I was open to whatever was needed so long as my little one was safe. She agreed to refer me to physio for my pelvis and spine and much to my relief also agreed that regards my second job working around tourists wouldn’t be safe with an already risky pregnancy in a pandemic. On the basis of it being medical advice I would be able to remain furloughed until my maternity leave started, this was a huge relief and lifted one of my worries away.

As I said previously, I have no intention of writing extensively about Ambers father, our relationship had not been going well for some time. Covid restrictions increased the strain on it and so I had focused on preparing for the baby, in the hope we would resolve matters in time and tried to ignore the mounting tension that came along with it. It wasn’t to be and I felt like I had no choice but to end it around this time, the stress had got too much, we no longer felt ‘healthy’ as a couple and it wasn’t good for my wellbeing nor that of the baby.

The next 3 weeks was really just waiting for my next scan booked for the 14th May, I was sore and getting the usual cramps as the baby grew, my sleep didn’t improve at all so I napped a lot during afternoons. I had physio and was given exercises to improve my pelvic pain. There was another midwife appointment where I got a second beautiful recording of her heartbeat and I managed to spend a day with Jess. We met up in Glencoe on Beltane (1st May) and had lunch outside and a long dog walk up around the forests and hills. It was peaceful and wonderful to see her for the day, it was the first time we’d met up in almost a year due to all the restrictions and with all the worry and stress of the previous few months it was bliss.

I was already calling my baby girl ‘Amber Lily’ when I talked to her by this point. Even though I hadn’t yet had my 20 week scan to confirm she was a ‘she’, it was no doubt my little fox already working her magic and letting me know! I was also starting to look into hypnobirthing. Whichever way the birth went it looked like a lovely way to get through labour, I was already doing reiki on myself and my bump on a nightly basis to relax and the more I read about it the more it appealed.

Our story from the beginning…

I’m sitting thinking about what to write and I still can’t face writing about Ambers funeral so I’ve decided instead to go back to the beginning, I don’t want to forget the happier times, when I was excited about what was to come and all the joy and expectation. The days when I was happy.

I have an older daughter Coreigh, she is 25 now as I write this and I’ve always loved being a mum. She is my daughter and best friend all rolled into one. I always wanted more children, it just never happened and I had come to accept it likely never would. Until it did.

I had two miscarriages before Amber, the first in September 2019 at around 8 weeks, the second in January 2020 at around 10 weeks. The second time I ended up in hospital and had a horrific experience throughout with an unsympathetic nurse which left me feeling traumatised and I don’t think even now I have fully recovered from that day.

Because of my age (42 at the time of the 2nd loss) I was referred to an obstetrician to be assessed. I was told there was no reason to not have a healthy pregnancy and that if I were to try again they would do early pregnancy scans for reassurance, would put me immediately on progesterone at a positive test to help the baby ‘stick’ and I’d be under close observation thoughout, including scans every 3 weeks from 27 weeks. Because of my age a pregnancy would be classed as high risk but they were optimistic.

So we tried again, I took pregnancy vitamins, stopped drinking except for if I was on a period when I’d allow myself a couple, I knew my cycle back to front, used ovulation test strips, learned the signs that it was the ‘right time’ and on January 25th 2021, before my period was even due I did a pregnancy test and there she was, my baby girl! I checked again the day after to confirm. I started progesterone straight away, it gave me a feeling of being able to do something proactive, keep Amber (she didn’t have a name yet of course but I ‘knew’ she was a girl) safe. I spent the next few weeks in fear, every pain, every twinge, every symptom that either appeared or disappeared I was terrified. I was bloated, short of breath, exhausted (so so exhausted!) I went for a scan in the EPU (early pregnancy unit) at just 7 weeks and 2 days and she looked like a shrimp but there was a beautiful strong heartbeat on screen and she was measuring to the exact due date I’d already calculated. I remember crying I was so relieved and that was a happy happy day.

That night I had a bleed, very light but it filled me with panic and the hospital wouldn’t rescan until the following week as it was too soon after my initial scan on the Thursday. I spent the weekend in tears waiting to see if I would lose another baby but the bleeding stopped and the following Wednesday I had another scan and there she was, looking more like a kidney bean now with her tiny heart pulsing madly. She’d grown, she was there and everything was possible again, I began to dream…

I had my first midwife appointment, I researched for hours looking for my dream pram, it had to fold small enough to fit in my car but I needed an all terrain for dog walks, a big shopping basket, a carrycot, not too heavy as I have chronic back pain, I wanted the pram to be perfect. I spend a lot of time outside (usually) and so it had to work for my lifestyle of tramping through forests or on hill and river paths. It took my mind off worrying about those early pregnancy days and what could go wrong.

On the 25th March I went for my dating scan, this was the day I’d been waiting for. That magical day that all pregnant mums wait for, the day that your baby LOOKS like a baby, the day you see a clear heartbeat and the fears of loss start to fade away, the likelihood of a miscarriage drops. The ‘safe’ scan, the one where you can relax, start to shop, start to really plan the future, the nursery, your new life.

It was exciting going finally to a different department other than the EPU. Finally I was going to the ultrasound clinic, exiting but nerve wracking too. The sonographer went straight to her heart first and seeing it beating, strong and steady I remember I let out a huge breath I hadn’t even realised I’d been holding in and I just cried. She was beautiful and alive and my predicted due date was the 5th October, the date I’d already calculated was exact, I was 12 weeks +2 days. My baby was growing perfectly.

We immediately went and bought her first babygrow, soft and tiny and perfect for a winter birth. Now I could tell everyone I was expecting, now I could start shopping!