Tommy’s Angels

ollow my blog with Bloglovin

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.

IMG_9454 2
Tommy’s Afternoon tea party for 2018 Rainbow Babies

About Tommy’s

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.

IMG_9518
Leonardo’s study of human anatomy and specifically the circulatory system

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.

Our experience

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!

Afternoon tea

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.

IMG_9452 2
Aurora with one of our “Tommy’s Angels”

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.

Love

Sarah xx

Always Violet Skies

You might enjoy these other blog posts –
Somewhere after the rainbow – what happens if you lose your rainbow?

The challenge of a rainbow pregnancy

When Mother Nature has other ideas

ollow my blog with Bloglovin

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.

Snow

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.

IMG_9346.JPG
Wednesday morning 6am

Frustration

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.

IMG_9351
Violet’s butterfly in our garden reflecting the warm lighting from inside the house

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!

IMG_9350
Aurora watching the snow – her first.

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.

IMG_5586
Our neighbours snow covered garden so pretty

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.

IMG_5594 2
Good job the snow is so pretty.  Can you spot the birds?

Hope none of you were adversely affected by the snow and scuppered by our good old Mother Nature.  Keep warm.

Big love

Sarah x

Always Violet Skies

You might be interested in the following posts too –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

Barcelona beach break?

I never thought of Barcelona having beaches before. Yes I knew of a beach resort outside the city called Sitges but in the two times I have visited the city of Barcelona I never realised they also had beautiful sandy beaches.

Why we were there

My hubby was invited to attend a conference in the city for work and so I decided that baby and me would tag along for a few days to get some much needed vitamin D.

His conference was on the outskirts of the city centre in a residential area close to the port and opposite the museum of natural history. It was also virtually on the beach.

Weather

The weather in early December was 18 or 19 degrees which if you’re Mediterranean is Baltic but for a British person that’s summer! As most Spaniards thought it was cold the beaches, and yes there are more than one, were virtually empty on what we’d class in England as a gloriously sunny day.  They also have beaches that are well kitted out with showers, toilets & play equipment so great for families.

The plus point of Barcelona over a more traditional beach place in Spain such as the Costa del Sol or one of the islands is the fact it’s Barcelona! So you have lovely beaches but in the evening you have all the delights of a big cosmopolitan city and if you’re bored of the beach you can look around the sights of the city.

Culture in Barcelona

Having been to Barcelona a few times before I’d been around the city to the usual tourist places like Las Ramblas, the Gothic Quarter and the Park Guell – Gaudi’s fantastical Park. Even though I’d seen the Basilica de la Sagrada Família from the outside I’d never been in. The queues were always hours long. The beauty of visiting in December is there were no queues for any of the big tourist attractions- brilliant!

IMG_8208

Basilica de la Sagrada Familia

I think it’s fair to say the cathedral blew us away once we got into it. I can only describe it as Star Wars like as it was so other worldly but the stand out thing for me were the stain glass windows that had Picasso style artwork in their design. A unique blend of colours and shades that perfectly made use of the light coming into the building. I would love to spend a full day in the cathedral watching how the windows react to the different light in the day. So beautiful I highly recommend a visit and to think at the moment it isn’t even finished.

Barcelona Cathedral

After visiting this extremely famous Goudi place of worship we then went and visited another more ancient place.  The original Barcelona Cathedral, or Cathedral of the Holy Cross and Saint Eulalia, to give it its official name. Located in the Gothic quarter it was again a place I hadn’t visited before because the queues were far too long. This one was built in the 13thand 14thcenturies.  We lit 10 candles here to remember Violet, Arthur, my Nan, friend Alethea and other friends who are going through a bad time. Amazing architecture and a huge achievement when you think it was built without modern day technology. The Basilica de la Sagrada Familia will probably take as long to be built (currently scheduled for completion in 2026) and the builders now have every bit of technology.

Aurora loved both buildings and gazed amazed at the beautiful ceilings and windows.  It was so peaceful and although I’m not religious I love the calming atmosphere in these buildings as though they have absorbed the love they have witnessed over the years.

Jet2 great with babies!

I also need to mention how amazing Jet2 are when travelling with babies. The cabin crew were brilliant helping us with bags onto the plane and then taking baby for cuddles while we got our luggage into the overhead lockers.  They were 100% better than when I’ve flown with EasyJet and Ryanair. Who I’ve listed in order of horrendousness with Ryanair being the worst offender.

IMG_8104.JPG
Aurora enjoying her first flight experience

In short I’d highly endorse a winter sun break to Barcelona so get looking at those Jet2 flight deals now.

Happy flying

Love Sarah x

Growth

When I was pregnant I remember strangers would tell me “oh your life will change once the baby comes”. “You’ve no idea of the impact it’ll have & how much you will grow as a person”.  Well they were totally right as no one prepares you for the shock of parenthood but what people don’t realise is the really extreme sport form of parenthood is caring for a sick or recovering child or baby now that has a real impact. Not to mention the loss of one but that’s another change entirely and I wouldn’t describe that as growth at all, that’s more like having an amputation but I’m not talking about that now.

It feels strange to us to have a “normal” healthy newborn, as with Violet we had to give her specialist care because she was recovering from open heart surgery. So in her early years we couldn’t lift her under her arms, couldn’t wind her over the shoulder, she couldn’t do “tummy time” and we couldn’t touch or rub her chest or tummy at all because of her chest wound and broken rib cage. Anyone who’s ever had broken ribs will understand the pain she would have been in during the first 8 weeks while they healed not to mention all the surrounding muscle tissue including her heart. For a good while we also couldn’t bathe her either bless her.

Facetune_01-09-2018-19-42-04
Winding Aurora over the shoulder

Last time with Violet as a newborn all her energy from milk consumption in the first few months went towards healing her ribs, heart and muscles from heart surgery so she didn’t really grow or gain weight at all in her first few months of life. In fact she couldn’t even be plotted on the normal growth chart until she was about 6 months old!

IMG_1083
A teeny tiny Violet in Alder Hey Hospital

This time round despite us feeding Aurora less than we did Violet she is piling on the pounds, rapidly jumping up the growth chart percentiles as a result every health professional so far that has weighed aurora has exclaimed how well we’re doing as new parents, whereas with her sister we were frowned at, interrogated about our feeding skills & had to keep meticulous written feeding records we could show them as “evidence”.  Violet fed every 45 minutes for weeks & Aurora feeds every 1-1.5hrs & sometimes at now 4 weeks old she can go a whole 2.5hrs between feeds but we’ve not had to keep records for Aurora.

You’ve no idea how much reassurance growth and weight gain gives you as a new parent. Assurance that despite the tears, occasional vomiting and lack of sleep you’re doing exactly the right thing. With Violet half the time we were made to feel as though we were failing, as she didn’t follow any “normal” growth trajectory, whereas this time the same (if not less) effort is getting us much better results on the growth chart.

We now realise how brilliant we actually were with Violet in looking after her complex care needs and managing to look after her well, despite everything being 10 times harder for us, than we now know it is for those with a healthy newborn baby.

IMG_1098
Violet at a week old still at Alder Hey Hospital after open heart surgery

Immediately after Aurora’s birth the midwife asked Daddy to change the first dirty nappies, that some of you will know contain the challenge of Meconium deposits, (for any novices out there that’s sticky black, tar like poo) and she exclaimed “oh this will be an experience for you” but it was super easy for him compared to when he changed Violets leaning into an incubator carefully cleaning around the various wires and tubes that were keeping her alive. So not that I want to jinx anything but it seems as though Violet really did grow and develop us in even more ways than we care to realise. Hats off to other parents of challenging or poorly babies as we now realise again just how many medals and pats on the back you deserve! You are truly amazing and don’t be disheartened if your baby isn’t jumping up the growth charts. Don’t let health visitors & others make you feel you’re not doing a good enough job, as caring for a sick or recovering baby is a challenge beyond extreme so don’t allow them to compare your super hero baby to other “normal” healthy ones.  And those other new parents whose healthy babies are climbing the growth charts like our Aurora is you’re not too bad either! Keep up the good work & remember not all growth is easily measured.

IMG_0397
Aurora at a week old enjoying the sunshine outside

To those bereaved parents there are no words and I’m sorry you’re reading this, as I completely understand that when you hear people talking about the tiredness & stress of parenting you know you’d happily agree to anything to get your baby back. I have been there. Big hugs,

Love Sarah x

Emotional

Relieved, ungrateful, confusing, complicated, devastating, exciting, ecstatic, elated, happy, sad, angry…

Emotional is probably the only constant state at the moment, as with the majority of new mums, never mind those who have gone through child loss. I’m facing a wave of different emotions everyday but unlike most new mums mine include sadness, feeling angry, confused (how can you feel immense pain & pleasure at same time) & devastated that my older children aren’t here too.  I am a mother of three not one.

The midwife service would ordinarily have signed me and baby off by now and passed our care onto the health visitors but given the extreme circumstances (loss of two children) they are keeping a close eye on me alongside the health visitors, which is nice in a way, as it is a total contradiction to the care we had 3 years ago where we were forgotten about for the first few weeks after we left hospital. We complained at the time to Manchester’s NHS trust and it resulted in a full restructure of procedures for new mum care in Greater Manchester, hopefully meaning high risk babies that have undergone surgery shortly after birth won’t now fall down the cracks as we did.

In a way this is probably also now the reason why both departments are now OTT with our care.

Facetune_19-08-2018-14-37-36
Me (tired & make up free but happy) with Aurora

Midwives and health visitors ask me how I’m doing then look at me carefully to observe my facial expressions & body language to see when I say that “I’m ok” if I’m being honest. They all looked surprised when I explained after Aurora was born healthy that for the first time in 9 months a lot of my anxiety and worry had lifted. I actually felt a huge sense of relief and was also in slight shock that at last the ordeal of waiting and wondering was over. She was finally here and was healthy. Sometimes it still feels surreal so I have to pinch myself to check I’m not just dreaming and other times I still find myself because of sleep deprivation accidentally calling Aurora Violet as though my brain has regressed in time.  Although I’m led to believe this also happens often when you have multiple children who are alive too.

Anyway got to dash baby waking for a feed…thanks for reading.

Love Sarah 😘 x

More of a mother? 

For years I have heard close friends and family talk about how they feel like fraudulent mummies because they had caesarean sections instead of natural births.

Other friends have spoken about the pressure to have done natural child birth, without pain relief, as though the more natural, painful and traumatic your experience the bigger your entitlement to a “super mummy” badge.

Super mother

I felt I needed to write this blog post about the pure bullshit (yes that’s the language I’m choosing to use) of this whole belief system.  I’m someone who has now become a mother as a result of the most painful natural birth, I’ve delivered a sleeping baby early naturally and I’ve also had an elective Caesarean section too.  I can say from experience that all of these make me equally a mother and each of these experiences posed their own challenges, unique type of pain and suffering (both during and afterwards, both emotional and physical pain).

My “natural” birth was undiagnosed breach during which I had no pain relief and both myself and my daughter nearly died. Now this experience, to some women I’ve spoken to at various baby groups, is lauded as making me a “super woman” and 3 years ago in the baby class tales of who had had the worst birth experience meant I usually “won” that one hands down.

I remember one woman at a baby group proudly stating she also had a breach birth naturally and when offered a C-section instead opted for a no pain relief natural experience and said she was proud she’d done it. What utter nonsense? As someone who has experienced it and without pain relief, I can hand on heart say I really wish I hadn’t have been through it at all.

IMG_8687
Baby Aurora a few hours old last week

Yes it is important for women to be able to have a choice in the birth process and for them to be able to have a say in their experience but at the end of the day the priority must always be the health of mother and her baby or babies so whatever is best for the patients should be what happens. For women to then wear their “experience” as a badge of honour, that they can use to bash other mums with (as if new mums don’t already have enough to feel guilty about!) is I think total and complete bollocks.

I’ve had people say to me, that they wish they’d have had the birth experience I had, instead of the C-section they actually did have, and as someone whose physical wounds and emotional ones still haven’t healed from my original birth trauma, I’ve had to say “ermmm no you really don’t want to have experienced what I did”.

So why is a C-section seen as the easy option or the cheats way? As someone who has now also experienced a Caesarean section with my latest pregnancy (actually last week!) I can say it’s certainly not the super easy and pain free alternative that it is lauded as.   Those women I was in hospital with who had natural births are already out and about with their babies in slings, pushing them in prams and lifting car seats into their cars to take baby for a drive.  I can’t do any of that yet because of the wound that still needs to heal across my tummy and I’m limited to what I can lift, stretch to reach and physically do.  I’m also on strong painkillers for the pain following the major operation, as that is what a Caesarean section is, a major operation!  Natural childbirth might be more painful at the time of birth but post birth C-section pain and discomfort wins hands down unless you of course have complications such as tears, prolapse, piles, etc.

Women at baby groups talk about their natural birth experiences in the same way we probably chatted about hunting trips and warfare as cave people. The stories seem to become more elaborate and embellished as they are repeated with some women seeming to get pleasure from reliving all the horrendous little details wanting to out shock or out gore the person before.  There seems to be an element of competition about the whole thing trying to see who has had the worst experience.

If women talk about their experiences with such great delight then why aren’t the genuine battle scars, including C-section scars, stretch marks & saggy boobs also celebrated by society and why are women made to feel bad about them? Should they not be championed as battle scars and showcased alongside the tales of woe?

Why are some women also made to feel bad for having C-sections by men too? Some men when I was pregnant and they heard I was having a planned c section actually joked “too posh to push hey?” With even women giving each other a hard time over childbirth what hope do we have for men to then react appropriately?

Do you feel bad about your childbirth experience?  Have others made you feel guilty about it?  Have you decided to change things with any future children?

IMG_9399
Tiny hands

I feel we have a long way to go when discussing childbirth but it is about time we simply celebrate motherhood no matter how our babies arrived into the world and we should celebrate all types of motherhood too, including those whose babies don’t quite go or arrive as planned.   It’s important to talk about child loss too and alternative experiences.

Love

Sarah x

Our second rainbow

This was the best kept secret until recently as anyone can testify if they have bumped into me, as at 34 weeks pregnant with my third pregnancy I’m now pretty big.

IMG_7445

Those of you who regularly read my blog you will know that I like to write in a very honest and frank way so I apologise if I haven’t been forthcoming about this massive development in my life and hope that after reading this post you can understand why.

We were lucky enough to fall pregnant again pretty soon after the loss of our baby Arthur and unfortunately were told that there would be a 50/50 chance of the new baby having similar brain issues, as it’s older brother and that we wouldn’t know if it had these issues until the 20 week scan.  So we would have to wait 5 months until we knew if our pregnancy would be viable or not.

In the meantime we were of course offered additional scans so we had one at 7 weeks, 12 weeks and another at 16 weeks where they checked baby’s heart.  At the 16-week check we discovered that unlike Violet’s heart the new baby’s heart was perfectly formed and we had received this news about Arthur’s heart at 16-weeks too.  So although it was good news we weren’t celebrating yet.

83439030-4110-49b4-ba5c-8e7fd037b0fd
Baby at 12 week scan

I remember after our 16-week scan with Arthur we had been so happy that his heart was ok and felt so lucky, relieved and excited we told friends and family we were pregnant.  Everyone of course was delighted for us especially after the loss of Violet. Then after Arthur’s 20-week scan we got the devastating news about his severe brain condition and our entire world collapsed.

For this very reason we refrained from telling our close friends about the new pregnancy until after our 20 week scan.  This scan turned out to be the very first 20 week scan we have ever had that hasn’t resulted in us being pulled into a separate room to be spoken to by specialists and midwife counselors.  The first 20-week scan we have had that hasn’t resulted in us having to have a second follow up scan with a more senior specialist a week later. So when the two specialists that performed our 20-week scan told us that the baby was perfectly healthy we didn’t know what to say.  We were in total shock.  We were asked if we had any questions and all we could think of was “what do we do now?” We were told we could leave and come back for another scan with a specialist at 28 weeks.

0956ad07-a134-4e61-b3ba-009dd5f68491
Baby at 20 weeks refusing to have a photo taken turning away!

Since then we have been waiting for a phone call or letter from the hospital to say that they are sorry but they have made a mistake.  We had the second specialist scan at 28 weeks and again we prepared ourselves for the knock out punch but that didn’t come, again we were given positive news.  To anyone reading this we must sound ungrateful but we were just so used to being given bad news whether it was devastating or minor bad news that we almost couldn’t believe what we were hearing.

We currently have a minimum of one baby or pregnancy related appointment each week either to monitor my heart (as I have an ASD see my post about a broken heart), to check baby’s growth (the amazing Tommy’s clinic gives us a scan every 3 weeks), child loss counseling or midwife appointments.  I’m under so many different departments and teams that we have gone from having an horrendous level of obstetric care when we had Violet to now having lots of specialists who all know who we are and will give us priority level care.  The NHS now feels like it is working for us!

638f4c83-e757-4c0c-bbbf-5685245c536d
With my sister at the baby shower she & my sister-in-law kindly organised for me

I’ve recently been to a few different Manchester events and I’ve bumped into so many people now that I think most know about our impending arrival.  People constantly ask me whether I’m excited about the new baby and the truthful answer is simply that I will be relieved when baby is here safe and well, when I can see with my own eyes.  Until then I can only try to be hopeful for the future.

Thanks for reading.

Sarah x

Violet’s third birthday

Last week was a hard week for us as it was our daughter’s third birthday and 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.

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. 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 and she was only alive because of the additional hormones and support she was being given.

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, as 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 be discharged to head over to Liverpool I was.

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

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

When they took her down to the operating theatre I couldn’t watch, as 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 and how strong she was, that she could do this.

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

Then commenced the longest 8 hours of our life as we hung around the hospital waiting for a phone call and finally received it saying she was out and still alive! We were so relieved and 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 but we were told the opposite that the surgeon thought it was an 100% success and 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.

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.

The thing I found hardest was the realization that ordinarily I would have spent the weekend before her birthday preparing for it by 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!

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, and 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, left some near the mural on Beech Road that has a violet coloured balloon in her memory, some elsewhere on Beech Road near to where she attended Babel Baby classes and 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 xx

Delivering good news

Delivering the wonderful news that you are expecting a baby is usually a happy time and I’ve seen people make announcements in the most creative ways via social media including an older sibling announcing they are going to be a big brother or sister, a written sign in front of a pet dog, a cutesy family cartoon and even an eviction notice on the side of an older siblings cot. There are of course those that simply post the classic 12-week scan photo with their announcement.

Arthur scan
Arthur’s scan photo

For those of us who have lost babies, or perhaps are struggling to conceive a much desired baby, seeing these posts can feel like a real kick in the teeth or like rubbing salt into our open wounds. Of course we are delighted by the announcement and pleased that someone else, a friend or family member, has good news to announce but it still stings.

Violet in Children's hospital MCR
Violet in hospital

We have some friends who kindly contacted us first to tell us personally about their news before they then announced it on social media and I felt this was an extremely kind gesture. If you have anyone in your circle of friends or in your family who have struggled to conceive or have had a baby die or have lost an older child, then please think about telling them your news in person before you announce it on social media to the whole world, as they can then prepare themselves for when they see it online. They will really appreciate the kindness of you telling them in advance of a more public announcement.

For some people baby and pregnancy announcements can bring a whole new meaning to FOMO on social media!

A Literal Broken Heart


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.

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

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.

Six years later I became a mother to Violet who was born with a heart defect and 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, so we were 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.

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 and I think 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 take the pain away from them.

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

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 into 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 an unimaginably scary though to those of you who have children who are alive.

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 so I now have truly broken heart both physically and emotionally. How ironic?

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

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