My heart’s all fixed

Back in 2016 I felt the worst pain I have ever felt when I lost my beloved daughter Violet and then the following year I lost her brother Arthur at 22 weeks of pregnancy too.  I knew then exactly what people meant when they described a broken heart.  I have never felt a pain like it.

Ironically after I had lost Violet in early 2017, before Arthur, I sought medical advice for dizziness and lethargy that I’d had on and off since I had had Violet.  When she was alive I was told it was probably because I was sleep deprived with a new baby and being a busy mum but when these symptoms continued after she had gone I got it checked out again.  I was diagnosed with having an ASD or hole in my heart that will have been there since birth but possibly enlarged during the pregnancy and birth of Violet.

Heart-frame-the-gallery-wall-violet-skies
I have this gorgeous art work by The Gallery UK in our dining room!

The hole it turned out was pretty large nearly 2cm in diameter and without a repair my symptoms would probably have got worse and I was at higher risk of clots and stroke too.  So I have been waiting for a repair since early 2017.

I still remember that first diagnosis of a broken heart and laughing saying “well I know this already as my daughter has just died”.

Heartbreak7-violet-skies.jpg
My broken heart depicted here – Violet Skies

So now it feels odd when I tell people I had a broken heart but now it’s fixed as though it means I am over the grief of using my children.  I find myself having to say physically my heart is now repaired but of course emotionally it isn’t.

What’s great is that when I came round from the anesthetic I asked was there a window open as the air felt so fresh, like it does at the seaside or in the country when it’s full of oxygen.  Of course there was no window open I just now have the ability to absorb more oxygen from the air so even today when I breathe in the air feels clean and fresh (yes even in Manchester).

I can’t wait to visit the seaside or countryside as I feel it will blow my mind the amount of oxygen I will have.

The other major difference already is that I don’t get out of breath as easily just walking down the road and my muscles don’t burn after even slight exercise either.  I felt like the bionic woman initially!

It will take a few months hopefully before I feel the full affects of the operation as one side of my heart is still very enlarged so will take time for the pressure to dissipate but I’m hopeful that by spring I will certainly have a new lease of life.

I will never run a marathon but looking forward to having more energy to spend quality time with my rainbow baby and family alongside of course juggle work, charity and this blog too.

So at a time when lots of people have resolutions about losing weight or stopping smoking I am trying to remain as healthy and stress free as possible in order to give my heart a fighting chance to heal and recover properly.

What are you hopeful for this year?

Do you have resolutions or hopes for the decade ahead?

Please do share with me…

Love Sarah

Always Violet Skies xxx

You might be interested in these posts too –

Broken hearted

Surviving after child loss

A Literal Broken Heart

 

 

Violet’s third birthday

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Last week was a hard week for us as it was our daughter’s third birthday. Along with the happy memories we also had memories of her difficult birth, where both of us nearly died, and the memory of her having heart surgery too.

Violet at Alder Hey
When she was at Alder Hey in intensive care, when we couldn’t hold her she held our fingers & later on in her life she took comfort from holding hands.

First 10 days in hospitals

This time three years ago she spent her first 10 days in various NICU wards, at St Mary’s hospital first before she was transferred to Alder Hey hospital. In Liverpool she had open-heart surgery at just 4 days old. 

We had to sign a million legal forms and contracts saying we knew the odds were stacked against her.  That we knew she might not survive and return alive from the operating theatre.   And that if she did there was a chance of brain damage; disabilities and the heart problem might not be “fixed”.  We also knew her chance of survival without the operation was nil. She was only alive because of the additional hormones and support she was being given.

Off for heart surgery at 4 days old

I still remember the day she went off to the operating theatre that morning was only the second time I had actually held my daughter in the four days since her birth. The first time being the day after she was born just before she left St Mary’s Hospital in an ambulance for Alder Hey, with her daddy in a taxi in hot pursuit. We didn’t want her to be alone without at least one of us.  I had to remain in St Mary’s because of all the injuries I sustained during labour and as soon as I could I was discharged to head over to Liverpool.

Me & Violet at Alder Hey
The second time I held her just before her heart operation

We told her about exciting plans

The days before her operation and the hours before it we spent time talking to her about what we were going to do together once she was out of the hospital.  We chatted about all the different people she would meet, describing friends and family members to her in detail.  We spoke about all the places we would take her to including New Zealand to see her Uncle Tom. Cyprus to see her Aunty Mel and Bali for mummy & daddy’s honeymoon.  We chatted about her Grandma and Nanna.  Said she would learn to swim. 

We basically described to her then the life she ended up having crammed into a 15-month period.  I wish I had have mentioned university and her own children to her then perhaps she’d have stayed around for longer!

Me & Violet in Cyprus
Violet in Cyprus in April 2016

The journey to operating theatre

When they took her down to the operating theatre I couldn’t watch. I knew I would end up screaming and it would distress Violet, so instead I collapsed onto the floor of the nearby family room sobbing.  Her brave daddy on the other hand walked her down to the operating theatre. Talking calming to her the whole time reassuring her. Reminding her how much she was loved. How strong she was and that she could do this.

Violet & daddy in Alder Hey
The bond between father & daughter was strong from day one

Then we waited for an eternity

Then commenced the longest 8 hours of our life as we hung around the hospital waiting for a phone call. We finally received it saying she was out and still alive! We were so relieved but our hearts sank when we returned to the NICU ward to be told that the specialist team wanted to speak to us before we saw her.  We thought oh no this is where we get told something bad has happened. We were told the opposite that the surgeon thought it was an 100% success. He felt she wouldn’t need any other operations on that part of her heart again ever. 

You know what we discovered he was 100% right too, as her post mortem showed his operation was a permanent fix.   This is the reason we are fundraising in her name for Alder Hey. So superstar surgeons can continue to work their magic on baby’s that are told they only have a slim chance of survival.

Now it feels like a story

Last week these memories all felt like it was someone else’s story, as though it was a different life and it played in my mind like a feature length film.

Thoughts of ordinary things

The thing I found hardest was the realization that ordinarily I would have spent the weekend before her birthday preparing for it. Buying her gifts, cards and organizing a birthday party for her.  Then the night before I’d have been putting an excited little girl to bed and wrapping her presents to set up for the morning.

Violet opening birthday presents
Here she’s opening first birthday presents & getting excited about bows!

Party and gift planning

This year instead of planning her party the weekend before I focused on doing some planning for the Violet Ball to be held in her memory on 29thSeptember to raise money for Alder Hey to thank them for saving her life at 4 days old. 

Instead of wrapping her presents the night before her birthday we decided to make up little “Random act of kindness” parcels containing little packets of sweets, including Parma Violets. Then on her birthday we distributed them all around the area where we live.  Including taking some to her nursery. Leaving some on the benches near the playgrounds in the local parks where she loved the swings. We left some near the mural on Beech Road that has a violet coloured balloon in her memory. Some near to where she attended Babel Baby classes. We placed some on benches in the cemetery close to her grave, after we took her birthday balloons.

The challenge now will be deciding what we do next year for her fourth birthday? Please let us know your ideas as all will be considered.

Thanks for reading

Love

Sarah

Always Violet Skies xx

A Literal Broken Heart

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When I was a teenager and even throughout my twenties I would talk about having a broken heart over an unrequited love or a relationship break up. Later on once I hit my thirties my parents 38-year marriage came to a sudden end and again I was “heart broken”. The world as I knew it ceased to exist. Then my beloved dog Max died suddenly that Christmas Eve and I was “heart broken” again.

Heart broken

It seems heartache and being “heart broken” is a familiar feeling that us humans often talk about but what I have experienced in the last few years shows that everything is relative and you can only compare the experiences you have been through personally. If you are fortunate to have only ever suffered the break up of a relationship then you will know this to be your worst emotional pain. If you have lost a relative or pet then this might be the worst pain imaginable.

Max
Max

Losing a dog/ best friend

After I lost my amazing dog Max I decided that I probably wouldn’t have another as the pain and grief after losing him I felt was unbearable, so I couldn’t face ever putting myself through that again.

Mother to a heart baby

Six years later I became a mother to Violet who was born with a heart defect. She had to be rushed into open heart surgery at four days old, the stress and anxiety during those nine hours she was under the knife was at the time I thought unbearable. We were so relieved afterwards when we were told her heart was a perfect fix.

Me & Violet at Alder Hey
Reunited for the first time in several days after she was transferred to Alder Hey in Liverpool & I was still at St Mary’s in Manchester.  Cuddles before heart surgery.

Anxiety

Every time she had to go to hospital for a heart check up of course we were stressed again praying all would be ok and it always was, until she was rushed into hospital with suspected pneumonia in September 2016. The anxiety during those ten days in hospital was again almost unbearable. I even told friends that there was nothing worse than watching your child poorly. Being tortured whilst doctors inject them/take samples and attach them to drips and there being nothing you can do to relieve their pain.

Violet in Children's hospital MCR.JPG
Violet during her time in Manchester Children’s Hospital in the days before she died

Death of a child

Then suddenly she died. Our precious daughter died. We then discovered a totally new level of pain and heartache that we had never even come close to before. Every other type of “heartache” I had experienced in my life until this moment paled in comparison. I actually felt my world had truly come to an end and the pain then and now is still sometimes unbearable. But bear it we do, as we have no choice in the matter.  It is indescribable to anyone who hasn’t gone through it and unimaginably scary to those of you who have children who are alive.

Metaphorical and physical

Anyway within six months of Violet’s death I discovered that not only do I have a metaphorical “broken heart” but I was diagnosed with an actual physical broken heart too. It was discovered that I have what they call an ASD or hole in between the top two chambers of my heart. I have a truly broken heart both physically and emotionally. How ironic?

Perspective

So life wise I guess the positive take on all of this is that it has helped us (my family) to put things into perspective. We no longer stress about the small things in life anymore and I tell myself that, at the end of the day, I have been through the worst thing imaginable, so everything else, including possible open heart surgery on myself is easy in comparison.

Dexter
Dexter

Everything is relative

Nine years after the loss of my beloved dog Max we adopted a two-year-old German Shepherd, as I now realise that I can cope with the loss of a pet if I can somehow survive the loss of two children. So we welcomed Dexter to our family and we now have a giant fur baby to look after who gives us unconditional love. What’s not to love about that, even if it only lasts for 8 years? It is relative after all and we have chosen to live in the present moment, as who knows if a bus will hit us tomorrow, so make the most of today folks always.

Love Sarah x