Tommy’s Angels

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

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.

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 and 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 and those answers are being discovered thanks to Tommy’s.

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, 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 and 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 and also 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!

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 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

Distraction number 1

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.

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.

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 so we had our oven, washing machine and dryer and sink all in the one room.  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. 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, chaos, ordering the relevant materials needed in time and we had to decide on design of 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.

I remember the midwives and specialists telling me I should try to have lie ins and afternoon 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.

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.

So now we are slowly decorating, unpacking and sorting out our new-finished house bit by bit which 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 bathrooms are exactly what we wanted so despite the craziness and my doubts half way in we’re pleased we went ahead with it in the end.

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 but 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!

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.

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 like the lovely chunky wooden coffee tables.  I like to get the odd piece from our travels hence the lamp from Morocco, 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

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

 

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

Delivering good news

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

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Arthur’s scan photo

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

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Violet in hospital

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

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

Rainbow pregnancies, hope & mindfulness

Arthur was our rainbow baby & gave us hope.

When I was pregnant with Arthur I remember we were so happy and filled with hope for the future; even more so after his 16-week scan where they checked his heart and confirmed that unlike his older sister’s it was perfectly symmetrical.

I threw myself into getting prepared for the new pregnancy and baby, which included signing up for Pregnancy Yoga and Pilates courses.

I remember I was so looking forward to the classes, as they’d give me chance to focus on this new little life inside me and to try to be positive about the future. I was also looking forward to building a support network of new friends who would be pregnant like me and so would be able to share the experience with some peers too. We’d done NCT classes when pregnant with Violet and gained friends from it who were then like a support network through pregnancy and baby’s first year.

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How chilled out I felt after the first Pilates session

When I registered for the classes I made sure to let the organisers know my sad story about losing Violet the previous September and she said she’d make the teachers aware of this.

Anyway my first class, which was Pilates went well and afterwards all the participants chatted together about their pregnancies. It was very welcoming and inclusive just what I’d have hoped for.

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How I hoped my pregnancy yoga would be

My second class, which was Yoga wasn’t anywhere near as relaxing or positive as I had hoped it would be. Lots of the same ladies were at this one that had been at the Pilates class, so it started off very friendly and welcoming again at the start.

We then took our places and mats to begin the session. The teacher announced that she wasn’t the one we were meant to have and she had been asked to step in at the last minute. Still no red flags in my eyes.

Then she asked everyone to begin by introducing themselves, what stage of pregnancy they were at and if it was your first baby or not. If it wasn’t your first baby then how old your other children were and whether they were looking forward to their brother or sister. I felt my positive little safe space and new support network crumble like a house of cards!

They went round the circle and I was one of the last, so I spoke about my second pregnancy. I told them all that I had had a little girl who died at 15 months old, just 9 months earlier, and how I imagine she’d be delighted to have a new brother or sister but alas she was no longer here. There was total silence and shock in the room you couldn’t even hear anyone breathing. Finally the teacher said how sorry she was to hear the news and thanked me for being so honest in sharing with the group. I remember everyone being in shock and blankly staring at me, even when the final girl had started talking about her pregnancy, they were still in shock looking at me. How I managed not to break down I don’t know.

Then we moved on with the class. I think it was the longest Yoga class of my life. Only one of the other participants looked over and smiled at me, reassuring me to check I was ok. Most other class members even those I had spoken to at the earlier Pilates class now avoided my eye contact. At the end of the class the majority of people rushed off desperate to escape quickly, so they didn’t have to face speaking to me or dealing with any emotional heartache or perhaps they were worried I had some contagious “all my kids die” disease. Maybe they are right?

The one girl who had smiled at me earlier, came up saying how she was blown away by my strength and she just felt the need to give me a hug. The teacher then apologised for having put me in that position in the first place and said how brave she thought I was, that I had shared what happened so honestly with the group. Then the tears came and I found myself crying all over the teacher and this poor girl who was 40 weeks pregnant and due to give birth anytime!

When I got home I was so upset I wrote to the organisers to say how a class I was supposed to find relaxing had become super stressful and emotionally fraught. It certainly wasn’t the Zen experience I had hoped for! They apologised for the miscommunication with the stand in teacher and said they’d give me an extra session for free if I continued with the course. They reassured me all teachers would be briefed about my situation.

I continued with the sessions (Yoga and Pilates) but they just weren’t the same, as I now received pitying looks from all the participants who simply felt sorry for me. The welcoming feeling I had felt at that first Pilates session was now gone and I was an outcast in the group, cast aside by the others. A few of them occasionally spoke to me but it was more so they could settle their curiosity about what had happened to Violet.

Don’t get me wrong if anyone had openly asked about Violet or whether I had other children, I would have told them the truth anyway, but I would have preferred a chance for them to get to know me a little first, before they learnt my sad news as that’s the basis of friendship, it needs to be built from mutual understanding and shared interests rather than pity.

Then when I lost Arthur at 22 weeks of course I contacted the course organisers and they refunded my subscription costs. I asked then perhaps if I could switch onto a postnatal Yoga course so I could try to heal but I was told that they didn’t advise this as it would be too emotionally distressing as everyone would be talking about their babies and my story would upset everyone else in the class too. Instead I was recommended to try some other sessions that after further research were designed for the elderly and infirm. I decided I couldn’t face attending a class full of geriatrics!

I was devastated that when you think of how many women sadly go through miscarriages, stillbirths and other troubled pregnancies that there are no Yoga or Pilates classes designed to help those who have suffered loss. Surely we need it even more than those who have birthed a healthy baby who is still alive?