The challenge of pregnancy when it’s a rainbow

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Now I’m no longer pregnant oh my word work and social events are a million times easier.  Yes at a networking event, not looking pregnant, eventually someone will ask if you have kids but they won’t use the topic or babies as their opening line or icebreaker.

36 weeks pregnant with Violet in 2015

Networking events

When you’re at a networking event, obviously pregnant, people you’ve just met will use the fact you’re carrying a baby as their ice breaker and ask you about it, which if you hadn’t lost children in the past and were enjoying a relatively worry free pregnancy then that might be lovely. However when you’re on your third pregnancy having lost your first child and then lost a second at 22 weeks gestation it’s a topic you don’t really want to chat to a total stranger about. 

I avoided events

Lots of work contacts now I’m out and about again after baby have asked recently why they didn’t see me at lots of networking events, launch events, industry gatherings, conferences etc while I was pregnant and this is the main reason why. Yes sometimes I was genuinely busy or grieving but other times I really couldn’t face the fact I knew that strangers would ask me about my pregnancy with a big beaming smile on their faces.  Clearly wrongly assuming I’m pregnant and so want to chat babies. 

Last night out at 37 weeks pregnant with Aurora

Difficult questions

Knowing I’d have to answer the following questions over and over to at least three different people at events filled me with dread:

“How far gone are you?”
“Oh so not long now. What’s your due date?”

Then either – 
“Oh I think you’ll be earlier than that as you’re huge much bigger than you should be” thanks for that I actually have more fluid than normal but I didn’t want to really tell you a total stranger that personal information.

Or…

“Oh really but you’re so small. Have you had a sizing scan?” Yes I have actually I’m having scans every two weeks at the Tommy’s clinic but again I don’t really want to go into this with a complete stranger. “Oh what’s the Tommy’s clinic you say?”…

I’ve seriously had both of these opposing size comments at the same event!

Or they ask…

“Is it your first baby?” No my third. 

“Oh you’ll be an expert then. Glutton for punishment bet you’ll have your hands full then.  What other kids do you have? 

Are they excited about their new sibling?” Ah no they aren’t alive unfortunately now that kills a networking event.

Or they say… 

“Do you know what you’re having?  Is that what you wanted?  Are you excited about it?”

Or…

“Looking forward to the birth then?”
“Baby will definitely take you by surprise by being really early.”  Thanks for that I’m having a planned C Section so I hope not but again I don’t really want to go into that with a total stranger.

36 weeks pregnant with Aurora at my friends wedding. Violet Skies
36 weeks pregnant with Aurora at my friends wedding

Advice

So folks next time you’re at a social event or networking for business and you see a pregnant lady perhaps instead you’d like to simply pay her a compliment and not think you can use her pregnancy as an icebreaker to ask personal questions or as an excuse to fondle her stomach unnecessarily.  Yes strangers seem to think your stomach is suddenly fair game for a good old fondle!

Love Sarah

Always Violet Skies x

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

Mothering after loss

Mothering after loss

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This week has been a really challenging one for me because my baby has been properly poorly for the first time.  Yes we’ve had teething pain, the odd tummy bug and reflux issues but this time she has a very nasty cold bug that’s affected her chest too.

Sick baby

Now you might be thinking having to look after a sick baby is hard for any mother or parent and yes it is but when you’ve previously had a baby get sick and die it makes the experience all the more stressful.  Especially when your other baby died of lung problems and now your new baby is choking and coughing in her sleep.

The doctor has said it’s just a cold so you’d think just give the child some calpol and vapour rub and get on with it.

Well just getting on with it is easier said than done. My hubby was also away so I was flying solo too (hats off to all those single parents out there you deserve medals!).

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Poorly little girl but check out that fabulous curl!

Sleepless in Manchester

The reality was that I didn’t get any sleep at all. Part of the night she was awake distressed after coughing and wanting cuddles. The rest of the night she slept in fits and starts repeatedly coughing and choking in her sleep. Cue mummy leaping out of bed every time. Sprinting across the room to lift her head and rub her back trying to ensure she didn’t breathe any phlegm back into her lungs.

Of course I also put a folded blanket under her mattress to ensure she was tilted to help with congested breathing, a tip we learnt from caring for her sister.

Holding baby while she sleeps

The following day aurora was still not herself so whilst most mummy’s might have tried to nap whilst baby did. I held her propped up while she slept so preventing her from choking on any phlegm and ensuring when she did cough that she definitely coughed or vomited outwards. Her sister they think breathed vomit into her lungs so this is now our worst nightmare for Aurora.

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After a loooong 24 hours of hardly any sleep and at last she sleeps!

Rainbow baby’s are difficult

You might wonder why I’m even taking the time to tell you all this. Whilst I don’t want to over share or make anyone feel sorry for me. I’m thankful for my baby and don’t want to complain. Lots of people think once you finally get your rainbow baby then that’s it job done. Well it’s only just begun really.

The stress and worry now Aurora is ill is unbearable as when I do manage sleep I get flashbacks of her sister, Violet, in hospital and immediately after she died.

What are the chances?

Most parents will stress and worry about their babies for their entire lives, that bit isn’t a new phenomena, but I guess most believe their child dying won’t happen to them. These things always happen to other people. Well when the unthinkable has happened to you already then you’re more likely to worry that it will happen again.

I’ve seen what hell looks like and I’ve experienced unspeakable pain.  I have sat by the side of a hospital bed for days and nights on end.  I have had to hold my screaming baby down while she is tortured by doctors with needles and tubes all trying to do their jobs.  I’ve stifled back my own crying and sobs so as not to distress my poorly child.  I’ve told my crying child that all of this is to make them better and lied that they will be ok.  I’ve begged and pleaded with emergency intensive care teams not to give up on resuscitation but nothing is worse than the nightmare of your baby actually dying.

Living nightmare

You can’t un-see or forget your dead baby’s face. How their cold lifeless body felt? How clammy the skin? How soulless their eyes? Almost like a doll has been made of them. They don’t seem real somehow.  I can tell you that hell is watching your child in pain, being tortured and then them die.  Then you have to arrange their funeral before somehow going on with your life.

I never ever want to go back there again thank you.  If to ensure that doesn’t happen it takes staying awake to check Aurora throughout the night then so be it.  If I have to hold her while she sleeps then I will do.  Anything I need to do I will do it.

I also keep having to repeat the same mantra over and over in my head.

“This is a different baby. A different person. She isn’t the same. ”

To all those parents out there with rainbow babies or those caring for children who are sick my hat goes off to you too.  Sometimes it’s tough being a parent.

Big love

Sarah – Violet Skies

Have you read these other posts about Rainbow babies?

When you finally get your rainbow what then?

Distraction number 1

Luck, God or just random shit

Tommy’s Angels

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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.

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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.

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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.

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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

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

What a difference a year makes?

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

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.

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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

Pregnancy after loss & now PTSD

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 slowly the better you start to feel too.

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 so 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 nightmares I have had previously.

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)!

In my first birth experience I was induced to give birth to Violet at 37 weeks of pregnancy, because 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 and 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. Both of us nearly died, as 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 and 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 so 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 knees 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!

My second birth experience wasn’t any better as this time I had to deliver Arthur sleeping at 22 weeks and 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 and 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. It was explained to me that it’d be easy to push him out as he was so small and 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. So my poor tiny sleeping baby came out and then they gave a little tug but the cord snapped, so 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!) and 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 with 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.

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 and I broke down into tears, as I was taken right back to just over 3 years ago.  I was proud I did it and 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 and 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!).

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.

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 but no one really supports those that go through horrendous ones, so 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 x

Pregnancy talk

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.  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

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 and that yes I’m sure they would have been excited to have a little brother or sister.

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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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!

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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.

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.

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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.

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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.

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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!

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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

Somewhere after the rainbow

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

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.

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

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.

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.

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.

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.

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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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.

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”.

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 x