Distraction number 1

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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.

Sacrifice

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.

Just relax

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.

Kitchen

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?

Eclectic

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

Sarah x

Always Violet Skies

P.s. please ignore the state of our garden we will look at that next year! lol

You might enjoy these other blog posts –

Design inspiration in Morocco


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

Mothering after loss

Luck, God or just random shit?

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I don’t know if I believe in luck.  I stopped believing in God as a teenager when I saw the suffering in the world and learnt more about science and history.  I then liked to believe in everything being made from energy and read a lot of books like “The Secret” that talked about putting positive energy out there to get the same back.  Similar to Karma in what comes around goes around.

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I still have a fondness for churches.  Here’s Hallgrimskirkja in Reykjavik, Iceland

Energy and Karma

The energy, karma and positivity mantra was the way I always lived my life.  Some people believe in God but I have liked to believe in the ancient energy of mother earth, not in a chanting naked around Stonehenge way, but the idea that we’re all made of energy always seemed more scientific and therefore believable.

Violet is born

Violet came along and we were told at her 20-week scan about her heart defect and that it was bad luck.  She was an undiagnosed breach baby and I had her naturally afterwards we were again told “oh you had very bad luck there”.  Then Violet got her heart fixed by surgeons at Alder Hey hospital and all the time we channeled positive energy.  Other family members and friends prayed for her in a multitude of different faiths.

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The Priory in Cartmel a stunningly beautiful place

Her surgery was a permanent fix.  People told us how lucky she and we were that she survived but we thanked science and the talented people at Alder Hey.  We continued to think in a positive way and raised funds from our belated wedding reception for Ronald McDonald House to thank them for their support of us in providing accommodation when Violet was in hospital.

Violet sick again

Then when Violet got sick again being admitted into Manchester Children’s Hospital we continued to channel positivity and friends/family prayed again for her.  After just over a week she seemed to turn a corner, we rejoiced and thanked everyone, mother earth, God, everyone’s prayers were answered…but then she suddenly died.  When we got her post mortem results, and then over 18 months later an inquest verdict, to be told she was just very unlucky and she died from something so extremely rare that no one could believe it.

Arthur

We then got pregnant again with Arthur our rainbow and were told at his 20-week scan that he had irreparable brain damage and once again told that we were just very unlucky again.

Karma is fake

Now if I was to believe in karma both of these things should have been lucky instead. I’m the person that buys food for random homeless people and sometimes helps them even further, for example I bought a homeless guy a sleeping bag in winter when he was sat sobbing because someone beat up and robbed him.  Over the years I have raised thousands for charity.  I’ve also only ever had rescue animals and do the middle class thing of sponsoring a child in Africa, so whilst I don’t do this as a quid pro quo or usually tell people whenever I do something kind, I should have a lot of good karma saved up right there. So I think the loss of my two children shows this karma thing is pure nonsense as for luck well….

As for God

As for God…I know lots of people who have lost children and are comforted by their faith. I on the other hand can’t believe in anyone or anything that can cause that kind of pain for anyone.  The pain my child suffered in hospital in the weeks before she died, and that of other children suffering in hospital too, means if there is a God then he is a cruel unkind one, so why worship him/her?   I actually in a way admire those child loss survivors who do still believe, as they’re certainly stronger in their faith than I am.

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We still light candles for our babies when we travel just in case – here’s the inside of St Ann’s Church in Manchester the epicentre of the city

Positive thinking

I still try to think positively, as it helps me to cope day to day but I do it more because I think that Violet wouldn’t want me to be upset or negative and me being miserable and negative isn’t going to bring Violet and Arthur back. I also now have the adorable Aurora to care for so need to be the best version of me for her sake.

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An autumnal walk in the park with colds and coughs hoping the fresh air does us good

Kindness and compassion

I believe kindness, compassion and good manners aren’t exclusive to those who are religious and my experiences over the last few years have shown me that often these qualities can be missing just as easily from a religious person as they can be present in an atheist.  I like to treat people with kindness and respect regardless of who they are. Blame my mother for this one as she clearly raised us well.

So to summarize I’m not sure what I believe anymore and maybe as one of my extremely clever friends said, “perhaps life is just a lot of random shit that just happens and if you survive then you either learn to deal with it or you don’t end of”. Not quite as eloquent as Forrest Gump’s “life is like a box of chocolates” but I can really identify with my friends version.  If religion is how you learn to deal with life’s challenges then good on you, it’s certainly better than turning to addiction or not coping at all.  Each to their own and I think child loss survivors need to push on anyway they can.

How do you cope with things or spur yourself to carry on beyond what you used to believe was your limit?

Love Sarah

Always Violet Skies x

Growth

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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.

Healthy newborn

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.

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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!

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A teeny tiny Violet in Alder Hey Hospital

Success measured in pounds

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.

Reassurance

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.

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

Sick baby is a challenge

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.

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Aurora at a week old enjoying the sunshine outside

Bereaved parents

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

Always Violet Skies x

What a difference a year makes?

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Today is the official birthday of our baby boy Arthur George who was born sleeping at 22 weeks of pregnancy.  Legally he doesn’t exist as he has no birth certificate or death certificate as he didn’t draw breath.  If he had he would technically have been alive.

TFMR

He was a termination for medical reasons known as TMR and it was the hardest decision myself and my husband have ever had to make (read more about it in this earlier post). We knew it was the right one to make as he wouldn’t have survived to full term passing anyway around 30 weeks so we felt it was the kindest decision.  We still wondered and worried as to whether we were right.

Already grieving

We were still grieving the loss of Violet and then felt as though we were burying our last little bit of hope when we said goodbye to her brother.  We entered a period of darkness even darker than we could imagine. The little flicker of hope we had extinguish completely when we were informed there was a 50/50 chance of future seriously ill babies like Arthur.  A few months later we got the surprise news of another pregnancy.  A pregnancy fraught with worry, stress and anguish as we wondered if once again the light we thought we could see at the end of the dark tunnel was in fact yet another high speed train set to derail us once again.

Aurora

Now exactly a year to the day we held and said goodbye to our little son I’m holding another 5 week old little daughter, Aurora.

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Aurora at 3 weeks old.

We named her Aurora as it means “Goddess of the Dawn” and “Light”.  We thought this was beautiful and had special resonance for us as we now can start to see daylight again through the fog.

Arthur

Happy birthday to our little rainbow Arthur George who taught us to dream and hope again after the loss of our first precious daughter Violet.

He also made us more determined to change more babies lives by raising more money for Violet’s cardiac surgery fund at Alder Hey Hospital. We set a date for the Violet Ball at the end of this month, 29th September at Radisson Edwardian hotel in Manchester you can get more information here.  There are tickets still available and we are looking for raffle prizes too so if you can help please get in touch.

Love and thanks

Sarah xx

Always Violet Skies

You might be interested in these blog posts –

Somewhere after the rainbow

What happens when you get your rainbow

Mothering after loss

Emotional

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

New mum emotions

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.

Midwives

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.

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Me (tired & make up free but happy) with Aurora

Are you sure you’re ok?

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

Always Violet Skies 😘 x

Pregnancy after loss and now PTSD

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When you’re experiencing pregnancy after loss you expect to be stressed throughout the entire 9 months, so every scan becomes a milestone and you count down until the next scan or check happens. It has actually believe it or not become easier as time has gone on because the more positive scans and checks you have the better you start to feel too.

PTSD

What you don’t expect only 2 weeks before D Day, which for me is C day really, is to suddenly start getting horrendous nightmares that stop you sleeping.

I spoke to my GP about it and she said oh that’s post traumatic stress disorder because you’ve had two extremely stressful birth experiences previously. The closer you get to your c section date the worse these might get, not to mention the stress and grief from losing two previous children.

Great just when I thought I’d nearly done it and we were finally on the home stretch my subconscious seems to want to remind me of the previous nightmares.

WARNING anyone who is pregnant stop reading now as you don’t want to read this part, if you’re squeamish too or eating at the moment (don’t worry there are no photos)!

Previous birth experience

In my first birth experience I was induced to give birth to Violet at 37 weeks of pregnancy. They said it’d be less stressful for her, given we knew she had a heart condition and the crash team would be on standby to whisk her straight to the neonatal unit.  Unfortunately I wasn’t offered any positioning scan to check her head was definitely engaged. All the various midwives and consultants that examined me told me she was in a perfect position. We were induced on the 14th June 3 times in total and she was finally born the night of the 15th.

Undiagnosed breech

Both of us nearly died. It turned out she was undiagnosed breech and no one realised until her bottom appeared instead of her head. She was classic breach too so like a resting frog or a roast chicken with legs tucked either side because of that her legs wedged her into my pelvis so she was stuck for over 10 minutes. They eventually had to use brute force to yank her legs out then tear her out of me quite literally. The afterbirth shot out with her like a pressure cork across the room along with nearly 2 litres of my blood.

Violet wasn’t breathing when she came out. They had to resuscitate her before taking her to the neonatal unit and they had to take me into the operating theatre to repair the third degree tears caused.  Oh and did I say I was given no pain relief either, despite requesting some repeatedly for well over a day?  I now know the excruciating pain I had felt too for over a day was her toe nails and elbows scraping along my insides on her way out.

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Decided to insert a happy photo of me & Violet – it makes me smile!

Giving birth to my TFMR

My second birth experience wasn’t any better as this time I had to deliver Arthur sleeping at 22 weeks. We had had to make the difficult decision to terminate him due to severe medical reasons a few days earlier. Apparently I was told it would be much easier physically than birthing a larger full term baby. As he wasn’t alive I could have maximum pain relief.  I opted for diamorphine injections so got my first one when contractions began and could have another 4 hours later. So 4 hours later happened and, as they were preparing to give me more pain relief, I starting birthing him so they couldn’t continue with the injections. It was explained to me that it’d be easy to push him out as he was so small. Then all they’d do is give a little tug on the umbilical cord, once he was out, then the placenta would come away easily.

More complications

So my poor tiny sleeping baby came out and then they gave a little tug but the cord snapped. I started haemorrhaging, they hit all the alarms and the crash team rushed in. I still had no more pain relief but was told to take deep breaths while a consultant put his hand inside my womb. Yes my actual womb meaning my cervix had to open the width of a normal sized baby’s head! He manually scraped the placenta out. Then another consultant had to do the same to check they got it all. In the meantime I’d lost a litre and a half of blood. Over the next week I found myself in and out of hospital. I had infections of my womb. Extremely low iron and blood pressure. Not to mention dealing with the grief of having delivered my dead son, almost a year after we buried my daughter too.

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Here’s another happy photo – I actually hate my frizzy hair/no make up in this shot but her facial expression is perfection.

First step to conquering PTSD

Today I achieved the first step to get over my PTSD as we had a tour of the labour ward and operating theatres in the hospital.  It was the first time I had been back on that particular ward/area since having Violet. I broke down into tears, as I was taken right back to just over 3 years ago.  I was proud I did it. Hopefully now it will be easier for me to go back there again in a few weeks time.  Fingers crossed I will be much less stressed.

So there you have it the main reason behind my PTSD. Plus the reason why this time they are giving me a Caesarean section so just hoping this one goes smoothly because I bloody deserve it (excuse the pun & the language!).

NCT

The amusing thing is that after I had Violet the National Childbirth Trust contacted me to ask would I consider becoming a volunteer to talk to expectant mothers about my natural birth experience! I said I didn’t think that’d be a good idea, as they would have nightmares, not realising at the time that it would be me having them.

Childbirth and PTSD

Not many people talk about PTSD from childbirth experience so I wanted to share in the hope others come forward or feel less alone.  I know the vast majority of people have relatively straightforward birth experiences and I don’t want to scare anyone. No one really supports those that go through horrendous ones. I felt I should share my stories in the hope others feel they can share theirs.

I have now been offered help in dealing with my PTSD but the treatment isn’t advised when you’re pregnant so they will work with me on it in a few months.

Thanks for the love

Sarah

Always Violet Skies x

Pregnancy talk

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I’m now heavily pregnant so that means that strangers and anyone I meet can tell instantly that I am with child, which is fine I’m happy to talk about it. 

Is it your first?

The difficulty comes when they ask if it is my first pregnancy and I have a policy of always telling the truth so when I say it is my third.  I get comments like “wow you’ve got your hands full then”, “you must really know what you’re doing”, “you’re a glutton for punishment” and “are your other two excited about their little brother or sister”.

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A photo I took of a mother with her two children paddling in the sea in Morocco

Try to move conversation on

Often I let them make a comment and then I move the conversation on without having to tell them that neither of this baby’s siblings are alive.  Occasionally the person I’m talking to will bring the conversation back around again by asking what my existing two children are? Are they boys or girls?  Then I have to explain that they were one of each but unfortunately they are no longer with us. I’m sure they would have been excited to have a little brother or sister.

What happened to your first two?

They then usually ask me what happened to my first two children and I tell them honestly or they nervously say “I’m so sorry” to which I answer “it’s ok” when clearly it isn’t then the conversation moves on.

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Third time lucky?

People often tell me “oh hopefully this one will be third time lucky then” and I know this comes from a very good place filled with love. I know we were very unlucky to have had the situation with Arthur but I don’t feel we were unlucky to have had Violet.  I know we were extremely fortunate to have known such a special little person if only for 15 months.  We were very unlucky to have lost her but would happily repeat the time over again and again in the style of Groundhog day if we could – well maybe not the very last 6 hours or 10 days in hospital!

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Here’s Violet having a showdown of attitude with her bigger cousin Evelyn.  Sometimes I wonder what she’d have been like as a sister.

It makes being pregnant bittersweet and we are simply hoping this time to have a stress free birth experience too, as with Violet bless her we certainly had a lot of drama.

Love Sarah

Always Violet Skies x

Our second rainbow

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

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Not very honest

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

Third pregnancy

We were lucky enough to fall pregnant again with our second rainbow pretty soon after the loss of our baby Arthur. Unfortunately were told that there would be a 50/50 chance of the new baby having similar brain issues, as it’s older brother. 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.

The scans

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. We had received this news about Arthur’s heart at 16-weeks too.  So although it was good news we weren’t celebrating yet.

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Baby at 12 week scan

Arthur’s scan

I remember after our 16-week scan with Arthur we had been so happy that his heart was ok. We 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.

Kept this one quiet

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 counsellors.  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 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.

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Baby at 20 weeks refusing to have a photo taken turning away!

A mistake?

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. That didn’t come, again we were given positive news.  To anyone reading this we must sound ungrateful. 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.

More scans

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!

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With my sister at the baby shower she & my sister-in-law kindly organised for me

Trying to be hopeful

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. 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

Always Violet Skies x

Somewhere after the rainbow

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Everyone talks about “rainbow” pregnancies and what a blessing they are.

Joy of a rainbow

It is very true that when we were expecting Arthur we were overjoyed and all of a sudden we had a new lease of life.  We had hope for our future, as a family and truly believed the sun was shining on us again.

Optimism for future

Yes we were still immensely sad about Violet and our grief for her was still strong but we had a renewed sense of optimism towards the future especially after we had Arthur’s 16 week scan and they confirmed that unlike Violet’s his heart looked ok.  We were ecstatic and so relieved that we genuinely looked forward to his 20 week scan as they would double check his heart again in more detail but if there were any slight abnormalities then they would be minor.

Arthur scan

Finally announced our pregnancy

We were so pleased and reassured by his 16 week scan results that we even felt confident enough to let friends and others know we were now expecting.  That in January 2018 Violet was going to be a big sister.

Bad news at 20 weeks

Then we had the 20-week scan.  Arthur’s heart did still look ok but what didn’t look right was his brain.  The sonographer wouldn’t/couldn’t tell us too much other than his brain didn’t look how it was supposed to look and she would have to refer us to a top specialist.  Our world crumbled.  We then had to wait over a week before we could see a specialist to get more details.

Heart broken again

We were heartbroken. The fact that something might have been wrong with his brain hadn’t even dawned on us, as we almost expected a heart defect and as we knew from our experience with Violet that wouldn’t necessarily have been a deal breaker as a heart can be fixed but a brain?  The interim week waiting to see the specialist was one of the longest in our lives and in the meantime I could feel little Arthur kicking and wriggling around much more hyperactive than Violet had been.

You can’t repair a brain

When we finally saw the specialist he explained that Arthur’s brain had declined and become even more severe, just in the week since our previous scan.  The issue was the amount of fluid in his brain, which was already so vast it had crushed most remaining parts of the brain including the area responsible for reflex and animal impulses like breathing and swallowing. The increased movement from Arthur was put down to the nerves being over stimulated by the fluid sloshing around his brain. 

His symptoms weren’t even anywhere near the borderline and in fact he was so beyond this that the prognosis was that he might at best reach 30 weeks of pregnancy and then would die.  His head would be so large and full of fluid that he wouldn’t be able to be birthed and would have to be removed through caesarean section, which could have complications for me too and given my age we were told if we still wanted other children then losing him earlier would be the kindest option for everyone.

TFMR

We explored every alternative but I couldn’t bear the thought of my little boy suffering (incidentally his deformity had affected him so badly that they couldn’t even identify his gender through the scan) and it wasn’t until I birthed him at 22 weeks that we realised he was a little boy.  Having to end his life was the hardest decision we have ever had to make but the thought of him suffering and declining further was too much to bear.

Having to give birth to him was traumatic and extremely upsetting.  We did get to meet our little boy while he still looked like a healthy but tiny baby and he was beautiful like a miniature version of his daddy with dark brown hair.  We spent several days saying goodbye to him in hospital and gave him a funeral service before burying his ashes with his sister almost a year to the day that we lost her too.

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Guilt mixed with grief

We will never forget our little boy and we miss him more than imaginable but it is a very different type of grief to that that we have over Violet. We knew her, shared experiences together, heard her laugh, babble away incessantly and have a million photos of her that we can look at too.  In a way this makes it easier as we have constant beautiful reminders of our memories of Violet.  I find I’m much angrier at the world over Violet because she had battled and overcome so much in her short life that it feels much more cruel for her to have been taken away as she was.

The world can be cruel

Grieving Arthur is much more difficult as his loss so early was our decision however his brain abnormalities weren’t and he would never have survived to full term anyway.  Never been able to breathe or swallow unaided if he had survived to full term.  It is the cruelty of us having to endure this on top of losing Violet that I find very hard to bear.  I remember screaming “how much pain do they want us to go through”, “what have we done to deserve this” and “how cruel is the world”.

After the rainbow

People talk about rainbow babies and how they are “God’s gift” well Arthur did fill us with hope for the future before it was cruelly ripped from us again.  I’m often asked why I don’t believe in God and this is the reason why.

Now we are struggling to discover what there is “somewhere over the rainbow” or as I like to say we are somewhere after the rainbow; what happens when you’ve had a rainbow and it is faded and disappeared?

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We look for the next one I guess and try to keep positive.

Lots of love

Sarah

Always Violet Skies x

No answer and no conclusion…as yet

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It’s very true that no parent can imagine the pain of losing your child or baby until it happens. It might sound like a cliché but your world, as you know it, really does come to an end.

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Violet’s grave in Southern Cemetery that’s now also Arthur’s resting place too

Cause of death

It is hard enough when you are given a definitive cause for their death through a post mortem report but what happens if it is inconclusive and you have no answers?

Inquest for the truth

If this happens then the coroner may decide to launch an inquest to try to investigate why your child or baby died. What you don’t expect to happen is to have to wait over a year to get some answers from them. We have been waiting now for over 18 months without a death certificate. Our daughter still has her passport and ISA savings account because ironically in the eyes of the law she isn’t in fact officially dead.

We wish she was still alive because she’d be two and three quarter years old now!

Delays in answers

We were warned after she died by the coroner’s office that her inquest hearing might take at least a year to schedule because of the complexity of her death at Manchester Children’s Hospital. It was explained to us that criminal investigations have to take priority, which is understandable. We have only recently been given a date of this May for her inquest hearing, that will then be a whole 20 months after her death. It makes us wonder whether those involved with her care will even remember events and actions from that long ago?

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We took new balloons to our babies today – Violet would have loved the dancing monkey

In limbo

In the intervening 20 months of our lives we have been in a state of limbo awaiting answers. We have received various contradictory reports from the hospital. We also have had to chase access to many documents such as Violet’s medical records that should be turned around within 40 days of our request. Even these processes that were supposed to be relatively smooth have turned into nightmares. Involving me repeatedly chasing the Manchester NHS Trust. Even having to involve a local MP just to get access to something we have a legal right too. The constant battles we’ve had to endure would be enough, without having to deal with our grief and the unknown answers that loom large.

Rainbow baby number 1

In the 20-month void we also became pregnant with our rainbow baby Arthur and unfortunately lost him 6 months ago at 22 weeks gestation. We had a full post mortem done on him too, hoping again for some answers. We were told he had some genetic problems so we were referred to see the geneticists at St Mary’s Hospital. Who are some of the best in the world. This filled us with confidence that they would find the problematic gene so that maybe we could opt for IVF genetic selection or get a pregnancy screened earlier than 20 weeks in the future. We were told this process would take maybe 8 or 9 months in order to be able to identify a particular gene or group of genes that caused his problems.

We had a letter a few days ago to say they have checked for all the obvious gene defects but they can’t find anything obvious. It must be something super rare or undetectable by today’s technology.

No reason why

The not knowing why both our babies died is almost as hard as them dying. I know the answers won’t bring them back but I think it would help my brain to make sense of things. The practical part of me would want to be able to put new procedures or tests (if possible) in place to prevent reoccurrence in the future.

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Has anyone else gone through something similar? I’d be interested to know.

Sending lots of love & hoping for answers soon.

Sarah x