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.

IMG_9454 2
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.

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

Without Leonardo we wouldn’t have had the foundation for midwifery and then institutions like Tommy’s.  What is a surprise I found is how little we have actually progressed since his discovery in the 1500s as the questions as to why babies die or why women miscarry are still needing to be answered today 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.

IMG_9452 2
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

 

Growth

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

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

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

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

IMG_1083
A teeny tiny Violet in Alder Hey Hospital

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

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

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

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

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

IMG_0397
Aurora at a week old enjoying the sunshine outside

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

Love Sarah x

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.

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) but 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.

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 and felt our 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.

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.

VanessaLouisePhotography_001.jpg
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.

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 and 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

 

Emotional

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

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

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

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

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

 

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

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

Love Sarah 😘 x

 

 

 

 

Our second rainbow

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

IMG_7445

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

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

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

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

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

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

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

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

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

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

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

Thanks for reading.

Sarah x

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.

pregnancy yoga in a field
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.

Pregnancy yoga
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?

 

My Story

I am a proud and heart-broken mother to two angels.

My first born was a beautiful baby girl named Violet who beat all the odds after she had open heart surgery at just 4 days old at Alder Hey Hospital. She lived a full and happy life for 15 months until passing away suddenly at Manchester Children’s Hospital. We still don’t really know what happened and the coroner launched an inquest, as yet we have no hearing date and still no conclusion.

Swimming shot

My second angel was our rainbow baby Arthur who was born sleeping at 22 weeks, almost a year after Violet passed away, and he had severe brain abnormalities.  He gave us so much hope for the future and when we lost him in September 2017 we felt as though our hope for the future died with him.

Graves

It has been an extremely devastating and challenging few years for both me and my husband but despite all of this devastating news we still strive to make the most of our lives as we understand how fragile life is and how much our daughter Violet loved life. She wouldn’t want us to mope and suffer. We’ve learnt to be grateful for the 15 wonderful months we spent with her that we might not have had if it wasn’t for the top NHS heart surgeons and care at Alder Hey Hospital we had in the very beginning.  To them and especially top heart surgeon Mr Prem we will be eternally grateful.

A friend of mine suggested (over a year ago) I try to help others, giving advice and strategies for coping with loss. So this blog has been a long time coming but I have waited until I felt strong enough to share and it will detail the ways in which I have tried to deal with everything in case it might help someone else who has unfortunately found themselves in a similar situation.

It won’t all be heavy or emotional reading though as lots of my coping strategies include travel, eating amazing food and architecture/interior photography, so hopefully it will make enjoyable reading for those out there that are lucky enough not to be in a situation like mine. It will be full of photos showcasing some of the amazing places we have travelled to and the things we do in memory of our beautiful children.

I hope this site can give others inspiration and hope to overcome anything they are currently battling with in their lives.

Love & hugs,

Sarah