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

When Mother Nature has other ideas

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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.

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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.

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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!

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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.

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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.

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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

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.

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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

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.

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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.

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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

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

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.

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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?

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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

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