Sleeping like a baby what an ironic phrase considering most babies I know hardly sleep anyway I thought I’d write a little post about when you move your baby into their own room.
Moving baby into their own room
This is something most new parents worry about and then once they do it most say how much both they and their baby’s sleep improves. This was certainly the case with our first baby Violet. She actually started sleeping through occasionally once she was in her own bedroom away from daddy’s snoring.
Well now as a parent of loss I can tell you this is extremely difficult and no now she’s in her own room I don’t sleep better in fact my sleep is worse.
Number one I’d like to say to those people marketing webcams and tablets as being “just as good as a baby monitor”. They are no good for a parent of loss. The fact they repeatedly pause to reset or reload is a nightmare for a mother who subconsciously listens to her baby breathing through the monitor while she sleeps. When it stops to reload my subconscious triggers me to wake with a jolt. My brain telling me my baby has stopped breathing. This happened 10 times during the first night she spent in her own room. Add into that the three times she actually woke up too then I think I got approximately an hours sleep.
This amazing first night triggered the purchase of a proper baby monitor through amazon via same day delivery so night number two was better. Just a shame baby then had a cold so awoke 6 or 7 times in the night and awoke to start her day at 5am.
Here’s hoping it gets easier as we’re very tired parents but you know I don’t like to complain. I know I’d rather zero sleep than zero baby as I’d give anything to have my first baby Violet back.
My counsellor tells me it’s normal for a mother to be anxious and all mums have anxiety, to some extent. It’s just that most haven’t then experienced the worst scenario ever playing out in front of them. Most mums when someone tells them the odds of something happening to their child are really slim they can rationalise. They can’t then turn round to say well those odds have happened to me in the past. Unfortunately my experiences now compound my natural mummy anxiety especially at night.
How did you get on with moving your baby to their own room? When did you do it?
Love Sarah x
Always Violet Skies
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This week is Maternal Mental Health Awareness week and I have to be honest that I’ve struggled with what exactly to write. Although I am a mother and sometimes have struggled with mental health, I’m not what you would call a “normal” mother but then I guess no one is truly “normal”. So for the last day of Maternal Mental Health Awareness Week here is my story of motherhood.
I have friends who have struggled with post-natal depression. I know friends whose mother’s have had it 40 years ago when it was dismissed as minor and called the “baby blues”. The difficulty I have is that motherhood for me has been a real rollercoaster. The struggle for me is writing about my own experience without seeming to diminish anyone else’s experience of post-natal depression. I have had friends tell me that they feel they can no longer share their tales of depression or worries as they think they seem minor compared to what I have been through. They have said that actually I make them feel worse about themselves because they should be happy when they compare their lives to mine. Well that doesn’t make me feel guilty, bad or worse at all for sharing!
So apologies in advance if my story of Motherhood makes any of you out there feel worse about your own situations. I don’t want to diminish anyone but hope that by sharing my story some of you who feel alone might feel less so.
I have never had a “normal” motherhood experience. I have not known what it is like to go into a baby scan at 20 weeks full of excitement and to come out elated with happy news afterwards. Our first baby Violet was diagnosed with a heart condition at her 20-week scan. Second baby Arthur was diagnosed with a serious brain condition at his 20-week scan resulting in a TFMR at 22 weeks of pregnancy. Third baby Aurora luckily had clear baby scans all the way through pregnancy but we never entered a scan room full of excitement or even left elated afterwards. More we left smiling with relief that we hadn’t yet had any bad news. Those were my three motherhood beginnings already a little different from the majority of mothers out there. You can read more about stress with a rainbow pregnancy here.
When Violet was born we had a natural induced labour as that was deemed the safest for her but she ended up being undiagnosed breach so I had a breach birth naturally with no pain relief. I am still having counselling for that experience alone, never mind the on going medical treatment because of the wounds I sustained. Violet was also transferred to Alder Hey hospital shortly after birth without me and at 4 days old she had open-heart surgery. It had only a 30% chance of success but she survived and the operation was a 100% fix.
It was, at that point, the most stressful time of our lives and we were relieved it was over. We finally took a 2-week-old baby home from hospital with serious health needs. She needed specialist round the clock care, whilst her heart and rib cage healed up. You can read more about Violet here. Despite her start she was a healthy little girl who had mild developmental problems because of her surgery and also issues eating solid food. We found that a challenge and extremely frustrating. However she was extremely clever, musical and a happy little soul considering her start in life. She was a joy to be around and made everyone who met her happy. This summarises my first year of motherhood started off extremely stressful and finished happy.
The loss of Violet
My second year of motherhood wasn’t anywhere near as good as my first! Violet got sick and was admitted to Manchester Children’s Hospital. We sat by her bed for weeks where she finally died, suddenly from a rare form of pneumonia aged 15 months. We had to wait nearly 2 years to find out why she died, as the autopsy was inconclusive. We had to endure a coroners inquest too. You can read more on this here.
First rainbow baby
My third year of motherhood I think was possibly the most challenging as this year we enjoyed a second pregnancy. Until the fateful 20 week scan and then, whilst still grieving the loss of our beloved daughter, we lost our son Arthur too. You can read about it here.
Second rainbow baby
My fourth year of motherhood is still in full swing and I have to say it is by far the best yet as we have our gorgeous rainbow baby Aurora. Named after the goddess of the dawn she has brought light back into our darkness. She certainly does this as she’s a bright, cheerful, smiley little girl.
People looking at our social media feed might be forgiven for thinking our lives are pure happiness now but as anyone who has suffered child loss will know they aren’t. The happy days are still tinged with sadness, as to what should be and what we are missing.
For example the other day I was “subjected” to a conversation by other mothers talking about how lovely it is that their three year olds and their babies play together. They interact now all the time. Well that’s what we should have Violet as a big sister playing with her younger siblings. Instead Aurora will probably grow up alone. Having grown up with a brother and sister that thought alone makes me want to cry. My siblings are still close to me and we remain an important part of each other’s lives.
I still have regular counselling to help me to try to deal with everything as I have horrendous nightmares on a regular basis. Sometimes extreme anxiety and times when I feel sad. I also have PTSD (read more here) caused by my first birth experience, my daughter having open-heart surgery and also from watching her die. I am told all this is “normal” for a grieving parent but it does draw parallels with how other mums say they feel who have post-natal depression. Whilst I don’t know what it is like to have a relatively normal experience of motherhood and still feel depressed, I do understand and have lived through all these feelings on a fairly regular basis.
I feel that lots of health visitors also need more training and guidance for how to deal with mothers who perhaps are slightly more fragile mentally than others. This is in light of a recent experience I had with a health visitor who reduced me from a confident mum of a rainbow baby to a crying anxious mess in the space of one baby weigh in session.
I also feel that more support should also be given to fathers as often they have no support at all, especially after the loss of a child or after they have witnessed a horrendous birth. They can suffer PTSD too.
Sending all mothers (and fathers) out there lots of love as parenthood can be tough whether it is simply sleepless nights. Or sitting by a sick child in a hospital bed or crying at a graveside. At the end of the day everything is relative to your previous experiences too. I thought the toughest thing I had to endure was watching my child sick in hospital that was until they died. Motherhood can be beautiful and wonderful but it can also be extremely cruel.
This week has been a really challenging one for me because my baby has been properly poorly for the first time. Yes we’ve had teething pain, the odd tummy bug and reflux issues but this time she has a very nasty cold bug that’s affected her chest too.
Now you might be thinking having to look after a sick baby is hard for any mother or parent and yes it is but when you’ve previously had a baby get sick and die it makes the experience all the more stressful. Especially when your other baby died of lung problems and now your new baby is choking and coughing in her sleep.
The doctor has said it’s just a cold so you’d think just give the child some calpol and vapour rub and get on with it.
Well just getting on with it is easier said than done. My hubby was also away so I was flying solo too (hats off to all those single parents out there you deserve medals!).
Sleepless in Manchester
The reality was that I didn’t get any sleep at all. Part of the night she was awake distressed after coughing and wanting cuddles. The rest of the night she slept in fits and starts repeatedly coughing and choking in her sleep. Cue mummy leaping out of bed every time. Sprinting across the room to lift her head and rub her back trying to ensure she didn’t breathe any phlegm back into her lungs.
Of course I also put a folded blanket under her mattress to ensure she was tilted to help with congested breathing, a tip we learnt from caring for her sister.
Holding baby while she sleeps
The following day aurora was still not herself so whilst most mummy’s might have tried to nap whilst baby did. I held her propped up while she slept so preventing her from choking on any phlegm and ensuring when she did cough that she definitely coughed or vomited outwards. Her sister they think breathed vomit into her lungs so this is now our worst nightmare for Aurora.
Rainbow baby’s are difficult
You might wonder why I’m even taking the time to tell you all this. Whilst I don’t want to over share or make anyone feel sorry for me. I’m thankful for my baby and don’t want to complain. Lots of people think once you finally get your rainbow baby then that’s it job done. Well it’s only just begun really.
The stress and worry now Aurora is ill is unbearable as when I do manage sleep I get flashbacks of her sister, Violet, in hospital and immediately after she died.
What are the chances?
Most parents will stress and worry about their babies for their entire lives, that bit isn’t a new phenomena, but I guess most believe their child dying won’t happen to them. These things always happen to other people. Well when the unthinkable has happened to you already then you’re more likely to worry that it will happen again.
I’ve seen what hell looks like and I’ve experienced unspeakable pain. I have sat by the side of a hospital bed for days and nights on end. I have had to hold my screaming baby down while she is tortured by doctors with needles and tubes all trying to do their jobs. I’ve stifled back my own crying and sobs so as not to distress my poorly child. I’ve told my crying child that all of this is to make them better and lied that they will be ok. I’ve begged and pleaded with emergency intensive care teams not to give up on resuscitation but nothing is worse than the nightmare of your baby actually dying.
You can’t un-see or forget your dead baby’s face. How their cold lifeless body felt? How clammy the skin? How soulless their eyes? Almost like a doll has been made of them. They don’t seem real somehow. I can tell you that hell is watching your child in pain, being tortured and then them die. Then you have to arrange their funeral before somehow going on with your life.
I never ever want to go back there again thank you. If to ensure that doesn’t happen it takes staying awake to check Aurora throughout the night then so be it. If I have to hold her while she sleeps then I will do. Anything I need to do I will do it.
I also keep having to repeat the same mantra over and over in my head.
“This is a different baby. A different person. She isn’t the same. ”
To all those parents out there with rainbow babies or those caring for children who are sick my hat goes off to you too. Sometimes it’s tough being a parent.
Sarah – Violet Skies
Have you read these other posts about Rainbow babies?
Like most people I love bumping into people I haven’t seen for a while. Someone I used to speak to or deal with all the time perhaps through work or a project and who has simply drifted away. Now in these modern times, thanks to social media, quite a lot of these people are still kept up to date on the happenings in my life. They are aware of the sadness of recent times, however there are occasionally still a few that slip through the net.
I met up with someone recently who I hadn’t seen for 5 years and initially I was so pleased to have ran into them, eagerly accepting the offer of a coffee in a nearby café. Then as I waited for them to get served with our brews my heart sank, as I realized the conversation I was about to have with them. I could forecast the surprised look then sadness before there would be pity and sorrow for my loss. Yes they would be sympathetic and the usual comments of “I’m so sorry” and “how have you coped” would be expressed. They would mention their kids and how they couldn’t imagine the pain of ever losing them. Then our entire conversation would take a different turn.
He brought the coffee and tea back.
I secretly challenged myself to see how long I could last before I would have to deliver the bad news to him. I asked him lots of questions, first about what had happened in the past 5 years in his life. He told me about his children growing up and how they were doing at school. About their different personalities with so much joy and passion proud of the people they were becoming.
Then he asked “what about me” and I told him first about the happy things; our house, getting married, travelling the world and our three children. About Violet, Arthur and Aurora, then about the loss of two of them. I finished on a happy note talking about Violet’s fund, Aurora and our hope for the future.
I’m now adept at delivering the proverbial sandwich with the shitty grief filling in the middle.
It’s very easy for me to simply avoid catching up with people and avoid setting dates to meet up for fear that I’ll have to have the awkward conversation about what has happened in my life. Don’t get me wrong I’m getting better at delivering it now but somedays it is still very hard for me having to relive it over again along with the associated emotion.
I hate being thought of as “that girl” and “oh poor Sarah” as that’s certainly not me. My loss doesn’t define me as a person. Yes it may have shaped me into the person I am today and yes I feel the affects of that change every second of every minute but I’m still me.
I just wish I could hand that old friend an overview of what’s happened instead and say “here’s an update on me please read it and then we will grab a coffee to catch up”. That way I don’t have to relive anything repeating myself and having to observe their reactions too. It’s a little weird though and cold I guess so not me.
What do you think? How would you tell people if you were me?
A few weeks ago we were invited into St Mary’s hospital for a pleasant reason for a change. We were one of 180 sets of parents to be invited to attend Tommy’s the Baby Charity’s afternoon tea party for all the rainbow babies born in their care in 2018.
The parents and families (some siblings came along too) and 180 little rainbow babies all born in 2018 gathered together for the first time to celebrate life. It was so magical seeing all the people that had been helped by the charity.
For those of you who aren’t familiar with the charity it was set up to initially help those who had suffered stillbirth and multiple miscarriages. The charity spearheads research into the conditions and looks at preventative measures to try to safeguard pregnancy ensuring a healthy outcome for mother and baby.
Leonardo Di Vinci
This weekend I visited the Leonardo Di Vinci exhibition at Manchester Art Gallery and highly recommend it, as it is amazing. I always knew Leonardo was a genius but I discovered in this exhibition that his work actually led to changing the perception of how babies develop in the womb. He was the one that figured out that the umbilical cord feeds them too. He also discovered that the heart circulates blood around the body in the 1480’s and looked at how it feeds the main organs.
Without Leonardo we wouldn’t have had the foundation for midwifery and then institutions like Tommy’s. What is a surprise I found is how little we have actually progressed since his discovery in the 1500s as the questions as to why babies die or why women miscarry are still needing to be answered today. Those answers are being discovered thanks to Tommy’s.
Tommy’s Manchester clinic offered me careful monitoring during my pregnancy with Aurora, after our 20 week scan. To closely keep an eye on her but also to help me to manage my stress levels too. The aim is for those child loss victims, who have lost several babies, to get reassurance that any issues or changes can be spotted by regular scans. They also checked things like blood flow through the umbilical cord, that the placenta was working ok and checked the Aurora’s growth. Fluid levels in the womb and in my case, because of my broken heart, the blood supply into the womb too.
All of these checks helped to give me peace of mind during what was an extremely stressful and worrying time. I lived life while I was pregnant from one milestone to the next so each 3 weeks until my next scan was a mini countdown. We celebrated after each one gave us positive news. Although it still didn’t make me worry less as of course we had been told previously by experts during Arthur’s pregnancy in early scans that things were ok. We were also told by Violet’s cardiologist that her heart was ok “nothing to worry about” and then it contributed to her death. So to say I was skeptical about what “experts” told me was an understatement but you know what? The Tommy’s experts or as I like to call them Angels were right!
So the afternoon tea enabled the midwives, who had taken good care of us, and the head of the Tommy’s clinic Doctor Alex to finally meet Aurora in the flesh. The last time they had seen her she was on a black and white screen during ultra sound scans. It was great for then to finally get to hold and meet her. To find out that the little hyperactive baby on their screens was a fidget in real life too.
Tommy’s is a charity
Tommy’s also have places in the Manchester 10k so if any of you out there would like to run for them and raise some money to help others like us then we would be very grateful you can get more information to register here.
Unfortunately with my poor heart health we’re not in a position to be able to take part so we have pledged to raise funds for them after we hit our Alder Hey fund target in some other way instead. Would you come to a tea party in the summer perhaps and help us to thank our Tommy’s angels?
Also make sure you visit the Leonardo Da Vinci exhibition more details click here.
For those of you who regularly read my blog or follow me on social media you may know that I have been waiting for the news about my heart since before Christmas (see this blog post if you need a catch up). Anyway that decision was supposed to be discussed with me this week, when I was due to see my cardiologist about my MRI scan results from last year.
My hospital appointment was on Wednesday, the morning after the night the snow came that caused gridlock across the north west. It meant my cardiologist was one of the many people unable to get into work that day, so, alas again, I am still awaiting news as to what the future holds for my heart and for me.
Initially I felt really frustrated that I still don’t know what will happen and all because of a bit of snow! Then I remembered that this isn’t the first time Mother Nature has put a spanner in the works for me and, in the grand scheme of things, this time I feel a bit of snow is quite a minor one.
Other “Mother Nature” surprises
Previous Mother Nature surprises have included nightmares such as my first child Violet being born with a heart disorder that was 100% fixed, thanks to medical science, then only to die from an extremely rare lung disease. Then I am diagnosed with a heart disorder too, that it seems I was born with.
My second baby was given the all clear as healthy at his 16 week scan. Then we were told at the 20 week scan that his brain hadn’t formed correctly so we’d need a TFMR. During both of these births medical procedures went wrong and I nearly died. Then I was told the issues both babies had were probably genetic and inherited from me. After tests it turns out the faulty gene is so extremely rare they can’t identify it as yet (of course it bloody is!).
Not all bad surprises
Then Mother Nature pleasantly surprised us with my third pregnancy, which we weren’t expecting as it was immediately after losing Arthur. This time it went smoothly producing the beautiful Aurora. Perhaps she felt she owed me one!
So Mother Nature continually surprises us on a frequent basis so I really don’t know why a bit of snow causing gridlock on the one day I really wanted to be able to see a consultant shocked me at all. I should be getting used to this by now.
Ride the Wave
I need to remember to a certain extent to “ride the wave” or “go with the flow”, when forces beyond my control come into play and balls everything up. It really is like the shipwreck analogy of grief. I’ve been clinging to the “I’ll find out about my heart on Wednesday” piece of wood to stay afloat and buoyant for the last month only for it to suddenly disintegrate plunging me under the icy waves once again. Anyway now I’ve clambered onto the “meh so what” Irish whiskey keg barrel and seem to have recovered again!
All I can say is that if a higher power does exist they certainly have a very dark sense of humour with the twists and turns they deliver to me on a regular basis.
I’m just hoping I get to see my cardiologist soon and that he says I can have a keyhole procedure in the not too distant future.
Hope none of you were adversely affected by the snow and scuppered by our good old Mother Nature. Keep warm.
Always Violet Skies
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Starting a New Year can give people much needed motivation to make changes in their lives and lots of people look to make resolutions for what they will do differently this year. This “new start” can be extra stressful and upsetting for those who have experienced child loss or indeed perhaps the loss of a different close loved one too.
The New Year marks another milestone in your personal journey of loss. Another year without them. Another year where you are a year older but they won’t age at all. Another year where you won’t hear them laugh, celebrate a birthday or just hold them again. Our loved ones are frozen in time and the changing year reminds us that the rest of the world is moving on without them.
The last 2 New Year’s were extremely difficult for us as the one thing we wanted to be able to change – to bring our children back – we just couldn’t do. The year before that we also found difficult in a different way because that was the year I nearly died in childbirth and Violet had open-heart surgery at the time we thought that was our toughest year but we had no idea what was to come!
How can you possibly have New Year’s resolutions when the one thing you want to change you simply can’t change or control ever? Instead I learnt to focus on looking at what I had learned in the past year and what if anything I could grow from. Was there anything positive I could build upon and develop for the following year? It really helped me to recognise the negative and bad things but also to then try to move away from them to focus on the good. To build on those instead.
So here in public for the first time are the things I have learnt from the last 3 years forgive the brevity with summaries as otherwise it’d be a novel…
2015 – Key experiences were getting married, father-in-law dying suddenly, difficult child-birth (both nearly died, spent weeks in hospital & Violet had open heart surgery to save her at 4 days old)
What I learnt…
Sometimes positive thinking can help to get you through.
Small can be very mighty indeed.
Science is amazing.
Even the cleverest most experienced people make mistakes.
Always trust your instincts.
Children’s heart surgeons really can be miracle workers and are near to God’s. I worship one called Mr Prem and still do.
Alder Hey hospital is amazing.
Ronald McDonald house charity is amazing.
I am very lucky to have such a close family – brother and sister the best in the world
My mum is a legend.
I made the right decision marrying my soul mate who turned out to be the best father and husband ever.
I have fantastic friends.
2016- Key experiences were travelling the world with an infant, belated celebration of our marriage and then daughter dying suddenly at 15 months.
What I learnt…
Always give back to those who have helped you – we raised £1,000 for Ronald McDonald at our wedding reception.
Travelling with a baby is amazing everyone should do it, although only visit places where you can drink the tap water until your child is old enough to know not to swallow water in showers or bath.
Your life can change in a heartbeat.
I would willingly give my life to save my child but I wasn’t given that choice.
There’s nothing more precious than family.
Sometimes doctors & specialists don’t have all the answers
All the positive thinking and prayers in the world sometimes can’t help you.
You only know your true friends when your world ends.
Child loss is a pain like nothing else.
You think you knew pain and misery before but you were wrong oh so very wrong.
My husband is the most amazing person in the world.
Focusing on helping others can help you to relieve your own pain.
Setting up fundraising can help you to try to take back some kind of control.
Knowledge really is power. It’s very hard not knowing all the answers or information or why’s
Some friends go out of their way to support you they are worth their weight in gold & others crumble by the wayside.
Family is everything.
Time is the most valuable commodity there is so make the most of every day.
Love never dies
2017 – Key experiences were a rainbow pregnancy, loss of our son through TMR, being told I probably have a genetic defect; having a hole in my heart diagnosed & then a second surprise rainbow pregnancy at the end of the year.
What I learnt…
You should value your health more than anything.
Never count your chickens before they’ve hatched or celebrate your baby before it is born.
Hope can come in many forms.
Child Bereavement UK are amazing.
Rainbows can reappear as fast as they disappear.
A dog can bring you so much joy and unconditional love when you really need it.
Child loss changes you as a person and that change is a permanent one for better or worse.
The old me died and was buried with my daughter in September 2016 no amount of trying will bring her back.
You have to put loved ones before everything else but not before your own health.
Kindness is everything.
Just because a baby is small doesn’t make it any easier to birth.
Saying goodbye to a baby you never really knew and that gave you so much hope for the future is very hard. Choosing to say goodbye early is even harder.
Distractions are invaluable.
Sometimes you can’t understand or fight genetics
You can try hard to plan things but often nature finds a way to surprise you
Pregnancy is stressful but even more so when you’ve experienced child loss
You are not alone others out there have experienced the same thing
Always stand up for those who are unable to fight.
Always do the right thing for you and other people even if it is the hardest choice
2018 – Key experiences were a successful rainbow pregnancy, finally answers in inquest from the coroner about Violet’s death, birth of our third child a baby girl, a house renovation/extension, the first Violet ball for charity & my Nan passing.
What I learnt…
Seize control of what you can control and smile and breathe with those things you can’t.
If you feel part of your life is uncontrollable then begin a new project or task you can control.
What will be will be
Go with the flow those hippies knew something
Tommy’s baby charity is amazing.
Stand up and fight for those who cannot
Sometimes the best decision isn’t the easiest
Helping to advise and support others who are also suffering in a similar way can help yourself too
Sharing is caring
Sometimes there are no answers or explanations as to why
Sometimes all you need as a listening ear and some chocolate
Caesarean sections aren’t the easy childbirth option but it was the best option for me
Breast isn’t always best when your baby has other ideas. Alive and feeding is best no matter how they are fed.
Being a mum of three when you only have one child to hold and nurse is hard.
Tiredness has a whole new meaning when you’re the mum of a new-born and have experienced child loss too
Being a new mum is difficult. Being a new mum who has watched her first child die and had to feel her second one die inside her is near impossible stress wise but at least I finally have a child who is alive and healthy
To live a long, happy, healthy life is the best we can ask for. I hope I’m as lucky as my Nan who was in her nineties.
You can see here clearly that when unimaginably stressful events happen in a year the number of “learnings” or developments increase, so try to remember this if only once a year. There is something constructive that comes from the most upsetting and distressing of situations if you really look closely. Remember and recognise what an achievement it is to be a survivor and what you have been through.
It is also possible to squeeze out a tiny bit of happiness from it all too. As the legend that is JK Rowling wrote for Dumbledore ““Happiness can be found in the darkest of times, if one only remembers to turn on the light.” So flick that switch or light that flame even if it is on a very tiny candle your baby or babies will thank you.
If you only take one thing away from this and repeat it as a mantra in the mirror every morning throughout January it should be this…”You are amazing”.
All I want for Christmas is… keyhole surgery – doesn’t really have that nice a ring to it does it?
For those of you who don’t know I have a broken heart, and no I’m not talking about the metaphorical one I’m always bleating on about after having lost two babies, but my actual physical heart.
I discovered it after I had lost Violet and was in the early stages of pregnancy with my first rainbow baby Arthur. I kept having dizzy spells and after my GP diagnosed an inner ear infection months earlier I thought nothing else about it until I saw a private consultant about something else and mentioned it. He said it sounded more like a blood pressure thing and so let’s check your heart. He did and low and behold it seems I have a congenital heart defect an ASD or hole in layman’s terms.
Of course I have a broken heart
I just remember laughing when he told me and said “of course I have a broken heart my daughter just died”. He explained it’s probably been there since birth but I’d just not had the symptoms accurately diagnosed before.
He read all the symptoms to me and they are basically all the symptoms every new mother has. They include lethargy, tiredness, weakness, dizzy spells (which are common for me due to low blood pressure – Olympic athlete level) and breathlessness.
Even pre-baby I had lots of these all the time but I just assumed I was unfit (even when I attended a gym and had a dog so walked hills regularly) i often felt exhausted but put that down to being lazy & having an insanely mad busy job. Now I see there was clearly an underlining reason I hated PE at school, why I was rubbish at sport and maybe it was instinct that told me to cheat at cross country so I didn’t have to run? Apparently if I’d been an extreme sport enthusiast or a marathon runner I’d have collapsed.
Anyway this week I headed into hospital to have a much needed MRI scan (since the issue was spotted I have been pregnant pretty much ever since 😆 with my two rainbow babies so couldn’t have a scan). They are now deciding how to fix it, as if I don’t it will begin to deteriorate further and then will be unrepairable. So big moment really will it be a keyhole procedure or full open heart rib breaking surgery?
It’s now dawning on me that this is a huge thing as I’ve always just shrugged it off with a meh what will be will be but now I’m like “oh shit let’s hope it’s not full open heart I need”? Quite like my rib cage as it is.
The black humour part of me says they’re going to fix my broken heart well good luck with that one what are they going to do bring Violet back? I wish! 💜 here’s hoping for good news from the specialist this Christmas.
Most people I meet now, after they’ve recoiled from the shock of hearing I’m a mother of three but only one child is alive, say things like “oh third time lucky then” or “at least it’s all worked out in the end” Urmmm no it clearly hasn’t all worked out in the end has it? Has my daughter Violet suddenly sprung back to life?
When I was pregnant with Aurora people could understand why I might have been anxious and there’s even a term for it PAL or pregnancy after loss but once your rainbow baby is here then people assume that’s it and you must be feeling better now. The grief over child loss must be over now you have another baby surely? You can move on and avoid dwelling in the past.
Well unfortunately it’s not that simple you see, yes I may have another living baby now but I still had two other children before her and just like those with more than one child, when you have a new one you don’t throw your old one away and forget about them do you? Or you shouldn’t. If you do then social services rightly get involved. So why should it be different for angel babies? Why forget about them? How can we forget about them?
I don’t blame people who think I must have moved on though, as suddenly they see me out and about with my new baby actually smiling and resembling someone who’s happy. I guess I am happy fleetingly which is an improvement but it’s now as though I’m on a permanent roller coaster. Aurora smiles or babbles at me equals on a high then she looks at me in a certain way & I see her sister Violet in her equals unimaginable high & then immediate low.
I still get side swiped daily by emotions but different ones from before. Seeing a mother cooing over a baby no longer makes me want to cry for the loss of Arthur although I admit seeing mums with little boys gives me a pang of pain. Now it happens when I see parents of multiple children walking with them all to the park. Brother and sisters playing and arguing together. Family lifestyle photo shoots of the whole family looking happy together in autumnal leaves (yes I do live in Chorlton! Lol). Even at Halloween cute sibling photos of older ones taking their toddler brother or sister trick or treating for the first time pour salt onto my wound.
I find myself trying to imagine what Violet would look like now aged 3.5 and what she’d think of her little sister. How would they interact? When Aurora is bigger what arguments would they have about minor things? I find it hard to imagine and to think of Violet as anything more than a baby, almost toddler. I find that upsetting too. Her sister will never know her. I can’t imagine life without my sister so now I feel a new level of grief for Aurora for the big sister she will never know or experience.
The hallway of family photos we have where the sisters may sit side by side in different frames but never actually occupy the same one. There will be photos of Aurora getting older, fingers crossed, next to the same photos of her big sister who will eternally be a toddler. That will be a concept I’m sure Aurora when she’s older will struggle to get her head around, how can a baby be her big sister?
I wonder what Violet would have been like today and what she’d have thought of her baby sister? Do you ever wonder what if? I do every moment of every day.
You may remember a post I wrote a few months back now about how I tried to not worry about my pregnancy by deliberately creating other things to do or organize in my life in order to stay busy. One of these was an extension and house renovation project.
Extension and house renovation
This two storey extension project began back in April and comprised of two new bathrooms, a new kitchen, full house rewire and new central heating with new radiators. Getting rid of a very narrow galley kitchen and extending the back of the house to create open plan living with a large kitchen dining space. We would also get a new bedroom upstairs so we’d have more room for visiting family and friends to stay with us.
Our old boiler was ripped out in April so we lived in our house for 4 months with no heating or hot water and for the most part had no rear wall either just chipboard. Thankfully we still had an old electric shower so that was the sole source of our hot water other than from a kettle. A temporary kitchen was set up in our lounge and dining room. We had our oven, washing machine and dryer and sink all in the one room with all our downstairs furniture. Our fridge freezer had to be moved into the hallway next to the front door. It was a combination of camping and being in an episode of Steptoe and Son.
Other things to worry about
Thankfully it did work in taking my mind off worrying about the baby for a lot of the time as instead I worried about the mess and chaos. I concerned myself with ordering the relevant materials needed in time and designing the kitchens and bathrooms. We also boxed and bagged our belongings so they could be stored in the loft as the rewire and new radiators meant all of the floorboards being ripped up. Then was the day-to-day dealing with the dust, mess and noise from builders.
I remember the midwives and specialists telling me I should try to have lie ins and naps to help with fatigue caused by my pregnancy and the hole in my heart (see this earlier blog post for more details on this). I just laughed when they suggested it, explaining the builders arrived at 7am everyday and you try sleeping at lunchtime when there is hammering, drilling etc.
Building work later than due date
Unfortunately our building work also ran over schedule and our baby Aurora arrived ahead of time by a few weeks. So it did mean we had to get alternative accommodation when we first came out of hospital. Thanks to an AirBNB stay and then some amazing next-door neighbour’s, who leant us their house while they were on holiday, the baby avoided most of the noise and dust.
Now the hard work begins
So now we are slowly decorating, unpacking and sorting out our new-finished house bit by bit. It isn’t easy with a newborn baby but we are so happy with our new kitchen space. We can fit more than one person in there at once, and the bathrooms are exactly what we wanted. Despite the craziness and my doubts half way in we’re pleased we went ahead with it in the end.
So far we have almost finished the kitchen space. We went for a navy blue kitchen with copper accessories and a white mistral worktop, which is a solid acrylic that can emulate marble. It is stain proof so much more durable, with a baby and a clumsy mummy we felt that was essential. The pendant lights were from Wayfair.
The stools I adore and they are from Cox and Cox. Whatever you do though if your health visitor says they love them and want to know where you got them from, don’t tell them to just google Cox. That caused a lot of laughs when the hubby overheard!
New lounge area
The seating area of our new downstairs extension will eventually have a new sofa. But for the meantime with the budget blown we have created a little lounge space with Ikea Poang chairs, stools and rocking chair. Added into this is a gorgeous rug from Dunelm, a sheepskin rug for cosiness, an original Moroccan silver lamp purchased in Marrakesh in January and some silk cushions that I’ve had for about 20 years. The best buy is probably the faux fur stool I purchased today from Aldi for only £14.95 but looks more expensive don’t you think?
I love being quite eclectic with my décor so there’s a real mix of new buys from the high street, old vintage things like the silk cushions I have had for years and hand me downs. The lovely chunky wooden coffee tables were from my mum. I like to get the odd piece from our travels hence the lamp from Morocco we saw in January. I also got bright coloured fabric from there that I will swap into that room for the summer, when we can then open both sets of bi-fold doors across the back of the house.
Have you bought any lovely things for your home from your travels? And if so please share your finds as I’d love to see them?
This project has really helped to take my mind off things and it continues to be a passion of mine, although I’m miss impatient so want to finish it all at once when it will be a long term project over the next few years as we have an entire house to decorate and dress.
Please share some of your favourite home photos.
Speak soon, love
Always Violet Skies
P.s. please ignore the state of our garden we will look at that next year! lol