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Imprints….

So another year has passed (and crazily six months since the last time I posted on this blog) and I will be lighting another candle tonight to remember the two lovely little babies that aren’t part of our family. The years gone really quickly this time – surprising considering what a “unprecedented” one 2020 has been. Maybe the ten weeks of no nursery for Dylan and Matt being furloughed – allowing us some family time that we never imagined we would have – made it rush by. Although I have to admit those weeks had tough moments, and even with Dylan at school now my maternity leave feels far from “normal”.

I can’t believe that it’s been two years since we lost Isabella. I keep wondering whether I will ever “forget”. How many years it will be before I don’t feel sad on the 25th September (the day she was born) or the 27th September when Max was due. Will I always hate the last week of September? Or in a few years will those dates just pass by without me feeling heartbroken? Will I always feel a stab of pain when I meet another child named Max or Isabella? I think it’s just this time of year that, sadly all my losses are so close to Baby Loss Awareness Week and so there’s lots of stuff on social media, it just brings it all up.

On the day that was the anniversary of Isabella’s death Matthew and I went up to the woods where we spread her ashes. It’s odd as it makes me so sad to go there, but there’s also part of it that’s comforting – almost like we can be close to her, like she’s in the wind and trees around us when we are there.

I am hoping that once I’m back at work, and I know that I won’t be having another maternity leave that my mindset will change and that maybe the losses will be easier to process and less consuming. I think when they went back to work in 2018 after losing Max I was constantly thinking I wonder are we going to get pregnant again, when should we start trying, will I face problems etc and naively thinking it would not happen again. And then I lost Isabella and I spent my time again thinking are we ever going to get pregnant again – it’s too much of a risk etc. Then we lost her and I took ten weeks off work. So it basically felt like 2018 was so baby and loss focus, it’s almost like I lost a year of my life of thinking about anything else. This realisation makes me sad, as I should have been focusing on Dylan, but then I look at him and realise he’s not been effect, he’s just awesome and loves life.

Then throughout 2019 I kept thinking you’re gonna lose this baby too – luckily that didn’t happen. So basically the point of going over this is that when I go back to work in January 2021 I won’t have any of that. Because we are definitely done we wouldn’t put ourselves through it again, and are we’re very, very blessed to have our two little miracle boys. So I think work will feel different. I think I’ll feel like I can focus on my career again, as well as obviously focusing on my family, but luckily IBM has very flexible working so you can focus on career and family at the same time. And I am I’m hoping that that change will make a difference in how I process things.

I still think about Isaac’s birth all the time. And again, I’m hoping, as time passes, that I’ve stopped thinking about it in such negative ways. But the moment, even nearly eleven months on I still feel that I missed out on his birth experience. I feel just heartbroken that neither of us were there when he was actually born. I wonder if I will ever stop feeling that way? Having four births and no positive I’ve birth experiences, I doubt I will.

On to more positive things… I am very, very proud to have been part of a team of amazing women who have raised money for SANDS again this year. Sadly we had to cancel the ball due to coronavirus, but luckily we have some wonderful family and friends who helped raise money by buying tickets for a virtual raffle. We raised a whopping total of £1440, which I’m astonished at because it’s very similar amount to the raffle from last year – but last year we sold a lot of tickets on the night. I want to say a big shout out now to all the very lovely people and businesses that gave raffle prizes. Because without them none of it would have been possible. It’s been heart warming that despite many of the businesses having a tough year they are still being so generous. And of course thank you to all you wonderful people for buying tickets!!

Dylan has started school and is extremely happy there. He’s made some new friends and has some fantastic friends from nursery with him, so I’m really glad that that has gone so smoothly. But even with that, I sit here whilst writing this blog and think about the what ifs. If Max or Isabella had survived I wouldn’t be at home now on maternity leave and Dylan would be in after school club three day whilst I worked (which he will have to be in January, apart from Tuesdays with Granny and Friday afternoons with me). But as it turned out, I’ve been here the first term that Dylan has been at school, and actually been really nice because it felt like he has been able to ease in, and I get extra time with him. So maybe every cloud does have a silver lining, however small the lining and however giant the cloud was!

So I really on this Wave of Light night, it was just a quick blog to say where I’m at, but also to send many virtual hugs to those that are remembering babies tonight and lighting their candles. And even if you haven’t had the misfortune of losing a baby, I know there are many other struggles that come with trying to conceive so thinking of you guys too – as I am sure this is horrendous too. If you haven’t experience loss, maybe you know someone that has, so perhaps light a candle for them.

Until next time, whenever that may be, take care of yourselves xxx

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Wandering Wonderings and Rambling Rambles

I am using a new app to write this blog where you speak and it turns into text. Hopefully it’s going to work as I’m trying to keep up the blogging whilst looking after/failing to home school a four year old, constantly feeding a four month old, whilst being majorly sleep deprived, during the Corona Virus lockdown of spring 2020.

I’m currently just walking back from my daily “allowed exercise” through the Chawton Park woods and trying to get Isaac to sleep in the sling as he refuses to sleep in the cot and I’m not supposed to drive anywhere unless it’s essential. I would argue napping a baby during his four month sleep regression is essential, but not sure that would really make the cut. I just went to visit the place where we scattered Max and Isabella’s ashes. It’s the first time I’ve had a chance to get up here since Isaac was born. And in a weird way, I wanted to go and introduce Isaac to Max and Isabella – that sounds so strange when I say it out loud (remember I am walking and dictating this blog into my phone). I think though, unless you’ve been in a similar situation, you may not be able to understand it. Issac to me, is their brother. They are his big sister and big brother, I know you could say Isaac wouldn’t be here if Max had survived, or if Isabella had survived, which is factually correct. But as I’ve explained before, in my head I have given birth four times, I have four children, just that sadly two of them are not on this earth with me.

Anyway, parenting through Covid 19 was meant to be the theme of this blog. This was certainly not how I was expecting to be spending my maternity year. I was expecting to spend it drinking lattes and eating cake, having lunches with friends who were either on maternity leave or “stay at home mums”, who by the way I haven’t absolute new found extreme respect for. I don’t know how anybody does it looking after pre school children (and younger), full time at home. I’ve been doing it for two ish weeks, granted with a newborn as well, but other people do that too and smash it (I am talking about you Emma T). I’m shattered emotionally, physically and mentally. So, this is me, taking all my hats off to stay at home parents – I shouldn’t say just mums as there stay at home dads too. Anyway, back to maternity leave, I thought I would be in the gym with Isaac in crèche for an hour a few times a week, I’d be spending my Tuesdays volunteering at NCT Happy Days. My Wednesday’s would be doing an amazing baby group called Tots Play which is led by a friend called Georgie – we did the baby development course before this all started, and had just started doing the Discovery Tots classes. I was loving my maternity leave and feeling the most relaxed and settled I had been in two years.

See this is what’s so weird about life at the moment – a couple walking just moved paths so they could observe the two meter social distancing rule – we used to walk past people perhaps stop and chat, and now just keep walking past them, hide in a bush etc.

I’m worried about my parents, even talking about it now, as I walk makes me want to cry. I cry every time I see them – clarification when I see them I’m not going around to their house as that’s against the COVID rules. I mean from a distance or on video. I’ve not seen them properly for over three weeks, occasionally we get each other shopping and leave it on the doorstep, knock on the door, stand well back and say hello. I am finding absolutely heart wrenching – can’t handle it at all and now I’m crying in the woods, all on my own with only a tree to hug. I haven’t seen my sister either – and she is my best friend – I can’t handle not seeing her even if it was just in the nursery car park during school drop off, just talking through it now has made me realise how lucky I am to live close to my family, and see them so often. Now I’d never ever want it to change.

The reason I’m worried about my parents is my mum has asthma is 69, and dad, as many of you know, had a stroke many years ago, but is still not in hundred percent health. It doesn’t seem like this virus knows any bounds anyway – a 13 year old boy died who apparently had no underlying conditions, a five year old boy died at the weekend – he did have underlying conditions but ****, five years old, and taken by a virus, my heart absolutely breaks for his family.

We are trying to play by the rules as much as we possibly can. We haven’t seen anyone else other than the four of us as haven’t been anywhere. We take the exercise we are allowed daily from our house and we’ve been lucky and getting a few home grocery deliveries, where we need to stock up my sister or parents have had deliveries and we are all doing bits for each other – we antibacterial wipe things as soon as they come in the house etc.

Social Distancing in woods building a stick den

The only other person I’ve seen outside of my house was when I saw a nurse when Isaac had to have his four months jabs. It was just scary and super surreal – you go into the health centre and get asked to put on a mask and sanitise hands, there was someone manning the door and everywhere was eerily quiet. The nurse had a mask on too and was so lovely and calm – it was one of those things you can’t avoid though, I believe in immunisation so Isaac had to go. So as you can imagine being kept in the house with a cranky four month old post jabs isn’t easy (plus an even crankier four year old who wants to see his friends). Also said four month old is currently going through a sleep regression and something called the “fourth leap” – which is a mental developmental stage where they can be really fussy and clingy etc. The stress levels were certainly very high last week!

I shouldn’t moan because I know other people have it a lot harder than I do. Matt has now been furloughed as well. I’m trying to think of its blessing rather than worrying about the difference in money (as obviously I’m on heavily reduced pay because I’m on maternity leave). But it means he is now around how to help “school” Dylan and quite honestly, I was seriously starting to worry about my mental health – so it has come as relief. I was crying every single day, I felt like I was letting both boys down. I was getting angry at Dylan because I was too tired and massively overwhelmed by the fact that he may not be going to nursery and home schooling on my own for possibly 12 weeks – probably even longer. Also I felt that it was hampering my bonding time with Issac as well, because it felt like the only time I could give him was really just trying to feed him before Dylan would call for me to go and play with him, but at least Matt can help now. I am still worried about my mental health – I think everyone at the moment is focusing on physical health, understandably so, but the mental health of people is also drastically important. For people who are losing their businesses, people who have their jobs, people have lost relatives, that’s going to have a big impact for years and years and years to come on mental health too. It’s just the physical side of it seems to be the tip of the iceberg of what is going to happen because of this outbreak.

I worry for my friends who work on the NHS frontline, but I’m trying to keep in contact with them as much as I can. I feel incredibly sad for my pregnant friends, must be ultra worrying for them, especially if they’re not going to be able to introduce the new arrival to friends and family – that is something that’s a lovely part of welcoming a new baby, to the world.

I feel like it’s something that we’ll look back on in years come when we’re old and grey and say “I remember the outbreak of 2020”. When we would #clapforNHS every Thursday night, when we put rainbows in our windows, did family video calls, when we would listen to a 5pm political broadcast every night, when our prime minister was in the ICU with the virus (whether you like him or not, I think everyone wants to see him pull through, he does love his country in his own way).

I am really praying that I’ll be able to say that I didn’t lose anyone I loved to it. The one good thing is that my boys will not remember any of it, and I am grateful for the extra unexpected time we get to spend as a family before Dylan goes to school. I do worry about the fact that we’ve been three years getting Dylan into a structure – because he needs structure, he is highly active and can be highly emotional (like I am sure most four year old boys can be). And at the moment very attached to me- will not let me go anywhere in the house without following me around even though I just got stairs go to the loo, he says “I love you Mummy I want to come with you and want to be with you every single minute”. First it was cute but now I worry about how he’s going to adapt to going to school, I am really hoping nursery will reopen by August so he’ll get back into a little bit of a rhythm of things – back to a more formal educational setting, wearing a uniform, back to some lessons etc – if not, September is going to be incredibly tough. I think because all of this I’m going to try and stay off work until January unpaid, because he’ll need the support during his first term, but also because I want to be able to have some time after all of this with just me and Isaac, to try and repair a bit of the bond we were developing.

Anyway I am getting to the main road on my walk now so will stop rambling. I hope everyone is ok and will see you on the other side. And remember #stayhomesavelives.

Birth Notes, Books and Boobies

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So it’s been a while since my last blog! I wanted to wait until I had gone through my listening service appointment until I blogged again, but that was a couple of weeks ago and been taking the time to sort my thoughts out around it.

A listening appointment is with a senior midwife where you are able to go through your notes line by line and ask questions. I had it after Dylan’s birth and it really helped me process everything, so had high hopes – unfortunately I was disappointed – not due to anything the hospital did wrong, but my expectations were unrealistic. In short, I thought the notes would be really detailed as they were with Dylan, but in reality the “birth” started at 18.50 when I got to ward and finished at 19.35 when he was out. They didn’t have time to observe every tiny detail. Basically I was on machine at 7.00, 7.05 everything normal with readings, 7.12 machine started going crazy so they tried to get me in different position as heart beat was saying 70 – half what it should be. Luckily there was a Dr free on the ward at that very moment who immediately came and examined me and made the call to do an emergency c section (I shuddered to think what might have happened if for some reason it took a while for a Dr to come and make that decision). Then at 7.19 a “category one” bleep was called – the worst one there came be which makes the surgical team come running, as well as the special care baby unit notified – clearly they assumed that little man was going to come out with some problems to overcome. I was in theatre by 7.24 being prepared, and 7.29 “knife to skin recorded”.. by 7.35 he was out and cord cut etc.

As you can see everything was rapid. His heartbeat did go back up in theatre, which made me ask “what if they had just waited”… as even if I could have had an epidural and Matt be present I would have felt better about the birth, but quite rightly the midwife said that if they had waited, I could be sitting there asking why they waited if my baby had died. She also emphasised that once they call a category one it’s rarely changed, and that they really only do emergency c sections under general in the absolute worst circumstances. The notes also said he came out “pink”.. and had no problems. I lost 1.7 litres of blood, so that’s why it took a while to get me back to recovery etc. So I did get some answers, but there are still things I will never know, like why he stopped moving, was it the cord causing problems or something with my placenta, how close we had come to losing him, what position he was in etc. I just have to accept that somethings will always remain unanswered and I shouldn’t dwell on them as we do have our little miracle safely here. But it’s just hard when I still think about it every day, not having a proper birth, neither of us being there etc. I just wish one of my four births had been a positive birth experience.

I have also been reading the follow up to “This is Going to Hurt” by Adam Kay, called “‘Twas the nightshift before Christmas”… (both excellent reads) – I am probably not meant to put photos on here but included Amazon links so you can buy the books to read the rest, so in theory free publicity. There are some pages that really hit home.

The first one reinforces my point in my last blog about following Count the Kicks and listening to your body, Isaac wouldn’t be here if I hadn’t….and I am glad that the staff at The Royal Surrey know the importance of following “a mother’s hunch”.

The second section that made me cry was around baby loss, so people may think losing babies at 17 and 12.5 weeks isn’t as much as a big deal as my blogs make out, but I still gave birth to them both, I named them both and I had a funeral for both. Adam rights very movingly about a couple losing their IVF baby… not just a “six weeker”. I had “normal” scans with both loses and it’s so hard to realise things can literally change over night. It’s natural to want answers and explanations – but we never got any.

Trying to be more positive… I recently had a wonderful conversation with someone who had tragically lost a child at 28 weeks, and she told me how they used to mark the date every year, friends and family would send cards etc – but the couple asked them to stop. The reason being she said was that her son that was born after the loss got upset by it. She advised not focussing on children that you have lost, yes talk to them about it if they ask, but the youngest child might come to think that they wouldn’t have been born if the children you lost had survived. Which ultimately for us is true, but I would never want Isaac to grow up feeling that. I do think this was good advice, I’ve kept all the scan photos and memories of my pregnancies with Isabella and Max, but will only show both boys if they ask.

Finally what has also taken up a lot of my time and headspace is the struggles we have been having on our breastfeeding journey. We discovered Isaac had a tongue tie – after I saw a lovely and very supportive breastfeeding consultant called Emily Taylor at a clinic in Bordon at the Forest Health Center (runs every Friday) – as I was in agony when feeding off my right hand boob. She also thought that his jaw was quite tight, so suggested some cranial therapy. It was great to have confirmation I wasn’t going mad and there was a reason I was in pain, so very grateful to Emily.

I got the tongue tie cut privately, as I couldn’t handle waiting 13 days to been seen by NHS. It did ease the pain, but sadly only for a few days, and it seems now the tongue has reattached so I’m currently deciding whether it’s worthwhile cutting again.

What has DEFINITELY helped is the cranial therapy we have had with Kate Rosati. So far I’ve had three sessions, and have a fourth booked in soon. It’s fascinating what Kate can tell by looking at how Isaac feeds as well as physical features. For instance, his forehead in one area is quite flat, so she thinks he was born back to back. Also, his jaw is tight and his chin locked down – causing a little ridge on his chin – and she thinks this might be where the cord was wrapped round. He also swipes a lot at the right side of his face, so that might be were his face was squashed into my pelvic area. Kate is so calming and knowledgable on breast feeding as well, and seeing her has made the feeding 100x more comfortable and meant we are able to continue on our journey, when I really was ready to give up.

I’ve decided to keep this blog going sporadically, talking about being a mum of boys and parenting after loss, so I hope you will stay with me, thanks for all the love and support so far xx

P.S photo of Isaac just because he’s so damn cute!

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A year older a year stronger… or so I thought

So it was this time a year ago I wrote by first blog on this site, timed with Baby Loss Awareness Week and the annual Wave of Light (https://muddledmummy.com/2018/10/07/i-feel-guilty-when-i-laugh/) . I had lost Isabella in very traumatic circumstances the month before on 25th September, having lost Max only five months previously on April 15th – and was very “broken” to say the least. I certainly couldn’t envisage a time that I would really enjoy life again, let alone contemplate making a new life.

So much has happened this year, both at work and at home, that it has flown by. It was unimaginable to me that a year on from lighting that first candle that we would be 31 weeks pregnant with a little boy (counting down only 7 weeks to go now before induction – the date has bow been booked!!). It was also unimaginable that Rebecca’s Room would have gone from an initial idea to actually being opened and in use (https://muddledmummy.com/2019/09/08/momentous-miraculous-moments-rebeccas-room-a-reality/). And I DEFINITELY didn’t realise that I would have the honour of being involved in the Secret Garden Charity Ball – all in aid of the Stillbirth and Neonatal Death Society (SANDS) who had funded the Forget-Me-Not suite in which I gave birth to Max.

I was first asked to join the committee late last year, by the wonderful Kat, and was introduced (via the wonders of Whatsapp) to the other lovely committee members – Lauren, Laura and Allison. It was very soon apparent how driven these ladies were for not only putting on an amazing event (which they had done twice already in 2017 and 2016), but also how much they cared about raising money for SANDS. I could only hope that I would be able to help out as much as I could.

It was daunting meeting them for the first time, as they had all known each other for a long time now, and I felt like a newbie at school walking into the pub the first time, but I shouldn’t have been nervous. They were all friendly and welcoming, with some sharing their stories of loss with me, that meant so much to be around other women that understood my pain. I had found a new tribe.

The months rolled by and I tried to help sourcing raffle prizes, securing two tables of lovely friends at the ball, and nearer the time selling as many raffle tickets as I could. They organised so many fantastic things, from light up SANDS letters to a three course dinner with DJs. The date of the ball, last Saturday night, came around very quickly and I was asked to give a speech on the night. I thought all would be fine, my speech covered why I joined the committee, how amazing I thought the ladies were, logistics for the night and what everyone’s money would be going to – listing out some of the ways SANDS helps bereaved parents.

When I practiced it at home, it was fine – different story on the night though! I didn’t even make it to the second paragraph before I felt the tears coming. As soon as I mentioned losing my two beautiful souls the emotions overtook me and I ended up crying on stage in front of over one hundred people. I could blame tiredness, my hormones, nerves – but ultimately, I just think it’s all still too raw for me to be ok. Despite the CBT I am still having, every day I miss Max and Isabella, every day I think what if, and every day I still expect to loss this baby. It just all took centre stage – quite literally – on Saturday night. The next day I was looking through some baby loss awareness week posts on Instagram, and one of the hashtags this year is #itsoknottobeok, also in line with mental health awareness week – and I think I need to keep this in mind. I know some people will find it odd still feeling this devastated, and think it shouldn’t matter as much know as have another little one on the way, but I think ultimately only people who have been through it will understand that a piece of your puzzle will always be missing. But that is ok. How many have a complete puzzle anyway, there are always things people wish for…

Here are a few pictures from the night – we raised so much money for SANDS – an UNBELIEVABLE £5,300 and I am really proud of all of us. Bring on 2020! I would also like to thank my amazing tribe who came to the event to support me, I hope you all know how much I love you.

Finally, please remember to light a candle at 7pm tonight, and remember all those beautiful souls taken too soon.

I got my table forget-me-not seeds to plant

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Momentous Miraculous Moments…Rebecca’s Room a Reality!

So we’ve actually done it… got to the supposedly magical 24 weeks (well actually will be 26 on Tuesday but it’s taken me a while to write this!)… when various sources state that your baby has a 50/50 chance of surviving if born at this gestation. It’s odd, as although if born this early the baby would be extremely premature and likely have a range of massive health problems, it was still an important milestone for us to hit. It is over double what we got to with Isabella, and seven weeks more than we got to with Max. I have extremely positive moments when I think about how far along we are now, but then extremely negative moments when I realised we still now have another twelve ish weeks to go before they will induce me at thirty eight weeks, and I still check for blood every single time I go to the toilet.

Anyway, back to the positive. Had a scan on Thursday and everything is looking normal at the moment! Saw my consultant and she’s happy with how things are going, agreement is to have another scan in four weeks and clinic appointment with her, but go and see my local midwives in a fortnights time to check blood pressure and urine. My consultant (Miss Hutt) is being so thorough that she has also booked in a gestational diabetes test for me in three weeks time, to “make sure we don’t have any nasty surprises”.

BUT the main reason for writing this blog, and it’s title, was the opening of the Rebecca Room this week! I honestly thought it would never happen, not because I didn’t have trust in the wonder woman that is Wendy Fuller, but just that it was so surreal that a room would be opened with my name at Royal Surrey County Hospital.

Mum and I went along on Thursday and met Wendy at Compton Ward reception then walked down to a side room, which had a big purple bow on it. In the vestibule area there is one Forget-Me-Not picture that Wendy and I chose, and another picture on the wall – which was actually the image we had on Max’s order of service back in May last year. Wendy had organised lots of lovely cake, and various people joined us in the room, some of the lovely EPU staff, Sisters who work on Compton ward, some of the great board members I went to speak to back in March. I was truly touched to see them taking time in their day to come, and it was clear they all really cared. The room is painted in two different tones of purple, much more calming than the bright yellow door that had been there before!

Wendy then showed me the amazing work her and the team had done on the new information box that that the have on the ward – most importantly it includes a printed version of a new pathway of care when pregnant ladies come onto the ward, it documents EVERY step that staff should take, with a checklist of items that are needed to ensure that during a traumatic time ladies are treated sensitively thorough out. It also includes an “in memory” book I gave them for bereaved parents to write in, as well as the same memory boxes that are used in the Forget-Me-Not suite on the maternity ward. Wendy told me that staff from the Compton ward are also now doing shifts on the EPU to help their interactions with maternity patients. I did ask if they had anyone else lose a baby on the ward since me, and sadly there has been one lady, but Wendy said due to lessons learnt from my experience, her ordeal had been handled very differently, so it’s reassuring to again know that it has helped others, even if it still brings me to tears every time I think about it.

After a tour of the room, and chatting to various members of staff, I was invited out to cut the ribbon! There were lots more staff waiting outside, and it was heart warming to see them all coming along to see the opening of this very special room. When I cut the ribbon I was astounded to see a brass sign saying Rebecca’s Room – I genuinely thought it was just going to be referred to that in paperwork/by the staff, not for all to see! Of course this made me cry (and mum), but Wendy was on hand to give me a big hug. There was a photographer there, and afterwards I had a chat with someone in communications, so there will be a press release coming out soon that I will share with you all.

The room is brilliant, it will always be a sad time for the parents that use that room, but it certainly is a more tranquil setting, and is equipped to deal with things so much better now. I am in awe of Wendy (and her team) – her determination, her passion and her drive to get this done. It really does feel like a miracle. I can’t wait for Wendy to meet the little man, and I really feel I have a friend for life, she will always hold a special place in my heart. Ultimately, the world needs more Wendy’s!!!

The big purple ribbon

Vestibule Image

Drink and Cakes!

Max’s order of service image

The all important box

Cutting the Tap

Rebecca’ Room Sign

The Wondrous Wendy

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When is “enough” really enough?

So Thursday was the BIG day… the day I got to talk to the exec and non exec directors of the RSCH board and tell them the story of Max and Isabella. All of this was possible due to someone going above and beyond to try to give my own story a positive outcome, the Compton ward matron – Wendy. I didn’t ask for the meeting myself, she asked for me. She shared my first blog with various people, and is determined that my story won’t be repeated for any other mums to be coming to the Compton ward. Having someone prepared to go so far to make a difference for you is a very humbling experience.

Back to the meeting.. I was expecting maybe 4 or 5 people, turned out to be nearly 25- although I was counting through eyes filled with tears, I didn’t even get my first sentence out before I was being passed tissues and water. It looked to me like most of the board was there, including the CEO, Director of Finance, COO, Chief Nurse, Chair and Deputy Chair. The chair said that they had all received a link to my blog and many had read it – which took me aback, that people at this level had taken the time to.

Another lovely lady Jacqui (who I think was Director of Midwifery and Divisional Head of Nursing for Women and Children), introduced me to the room and simply asked me to tell everyone what happened. I tried my best, but it was all out of chronological order, I wanted to get the main points across and then move to other bits I thought were important too, that I would get round to if I had time. I told them how I had gone in bleeding, and five days later, my beautiful little girl was born sleeping. I did notice a few people tearing up as I told them the details (male & female).. which made me feel bad, but also made me feel more confident that my story was hitting home.

Jacqui then asked me what they need to do differently, so I tried to list things:

Quicker access to drugs that a patients needs when just having given birth
Having the right equipment on the ward
Not shoving a form in someone’s face with funeral options two minutes after giving birth, which was worded horrendously
Not saying “the pregnancy has come away”… but instead “your baby has been born sleeping”
Having the possibility to have a detailed scan in a proper until over a weekend
Not keeping the sleeping baby in the cupboard next to you for eight hours until someone knows where to take it
Having staff properly trained in how to dealing with mums who are miscarrying – suggesting that they each do a shift on the maternity ward, and a midwife visiting the pregnant lady on Compton ward at least once a day

And my ultimate point, the one I am really passionate about and memory of will be with me to my dying day, no woman should ever have to give birth on a ward behind a curtain.

When I had finished the Wendy talked about some of the improvements they had already made, or are making, on the ward to address my points. They have already bought a plug in light so no one can walk off with it! Having a proper gynae kit on the ward. Having the SANDS forms available to give grieving parents so they know extra help they can get. Investing in more people trained in specific baby loss bereavement counselling. They are addressing the form that will be used on the ward, and took into account the need to wait to give it to the patient. They are looking at the training package for staff to make sure they are better equipped to deal with situations like mine. The BIG one was, having a side room that is dedicated to pregnant ladies that come in with complications pre 14 weeks (after which point they go to the maternity ward).

Slight diversion here…just before going into the meeting, Wendy and I talked about the room, and I was allowed to choose the paint colour! We had been emailing before as well, and they are using two images of forget me nots on the wall, one being very similar to the heart shaped forget me nots we used on Max’s order of service (I had sent her it as an example). I also gave Wendy an “in loving memory” book I had bought for the room, and the first entry was a note about Isabella, so that it might help other mums to write something.

The room was then asked if there were any questions for me. The FD said “are we doing enough?” , I said yes, then he asked again “really, are we really doing enough?”. I said it means so much to me that changes are already happening, and that I know finances in hospitals are ridiculously stretched, but that it is really really important that no one goes through this again, invest in the right training and infrastructure. He said cost shouldn’t be an issue, so will be interesting to see what happens over the coming months! But ultimately, in relation to the title of this blog, I do feel overwhelmed and proud of the changes they are making, it doesn’t take back anything that happened to me, but it will make it slightly less horrific for women that come in and loss a baby on that ward.

Another gentleman then asked if I would be interested in becoming a patient advocate at the hospital, I said yes of course – although at that point wasn’t sure what it would entail! With that I was thanked AGAIN for coming in, and I said I was very grateful for being invited in.

After the meeting Jacqui, Wendy and I went for a drink (hot chocolate, although I could have done with a gin!!). Jacqui explained that they are looking into a shared services scheme with two other hospitals to make sure mums to be can be scanned properly over the weekend. Jacqui also asked if I would like to come in next time SANDs visit the hospital to train, so I can tell my story to the Drs that are attending, which I of course would love to do. She also explained more about being a patient advocate, and we agreed, I should make sure I stick to women’s health, as this is where my passion lies.

So that was my Thursday. Once again, a long blog, but it felt like the end of a chapter. I am just not sure what my next chapter will be… all I know is I could do with it not being so sad.

Oh and one last thing.. they want to call it the Rebecca Room….

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This is my fight song….

So… at my work there is this theme at internal marketing conferences of “walk on songs”, basically what entrance music is played when people walk on stage to make their presentation. I’ve always wondered to myself what mine would be, after this year I decided my song is Rachel Platten – Fight Song and here’s why…

Last week was a real test of my bravery and “fight”… firstly we had Isabella’s funeral on Tuesday. People ask me how the funeral went, but there isn’t really much to say, other than it went as well as could be expected. I got some lovely pink flowers for her, which half way through the service suddenly made me think of a bouquet she may have carried as a bride or bridesmaid, but I didn’t want to just have a tiny plain white coffin which no brightness to it. It was a very short and simple service, Isabella didn’t take a single breath in this world, there were no speeches about memories of her, anecdotal stories etc. Just two poems, two songs and a few prayers. However simple it was, it was important for us to say goodbye. We will scatter her ashes tomorrow, in a special place for us, the same place where Max was laid to rest. It makes me happy that they will be together, and I am sure he is already looking after her in heaven, and they are both watching over their big brother.

In the spring I am going to plant some Isabella RoseLily flowers, to join Max’s forget-me-nots in the garden.

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On Wednesday I went to the hospital, to meet with the ward sister (Wendy) and the divisional head of nursing (Julia) to talk about what happened to me, and discuss ways in which they could change certain processes to make things a bit less traumatic for other pregnant couples. I must say from the start, they were both lovely and I really felt listened to. I also felt that my feelings of both anger and trauma were being validated, they both acknowledged what I went through – particularly giving birth behind a curtain on the ward – was horrific and made my experience harder to deal with than if I had been in a private room or in the special miscarriage suite. It was also interesting to find out that once you are 14 weeks you are put on the maternity ward, but before then hospital policy is to go onto Compton ward where I was (which is NOT a specific gynaecology ward).

They are now going to assign a side room to a pregnant person immediately as they come onto the ward. This room is going to be painted in a more soothing colour – I suggested purple (all the side rooms are currently white with a bright yellow door frame). They have also order a kit that has the right equipment should anything go wrong – including a torch so nurses won’t have to use their phones! They are going to have the SANDS information on hand, so that people can know what support is available, as well as more details on postmortem options for still borns. We also talked about how pregnant women should get a visit from a midwife once a day, who could bring a baby heart beat monitor or even a scan machine with them (as apparently there has to be special training to use the monitors and no one on the ward has done it). I did say I thought both times having to wait over the weekend to get a detailed scan in the unit was very hard (as they only open it Monday – Friday), and they acknowledged that.

One of the other memories I have is the cremation form being shoved in my face three minutes after giving birth, and how crassly it was worded. They are going to work with the hospital chaplain a revised form, and perhaps waiting a bit longer before giving to the parents. I also said that one of my lasting memories is the Drs telling me (and my husband on the phone), that the “pregnancy had come away”. The pregnancy hadn’t simply “come way” – my baby girl had been born sleeping, so I hope some of the Drs might work on their delivery of bad news!

Neither of the ladies knew what a ALICE bereavement appointment was – presumably as if you are less than 14 weeks pregnant and on that ward, then you aren’t offered one (its an appointment with a consultant to look and test results and come up with a plan for future pregnancies). But I said I think this needs to be situational, as what if someone gives birth to five sleeping babies, all before 14 weeks, does this mean they don’t ever get the opportunity to ask why and have a plan for the future? They agreed that it should be on a case by case basis (I hope with all my heart they stick to this).

We spoke about how long Isabella was left in the room with us in her special knitted cuddle crib (over 9 hours), but they explained a consultant has to come to take her away, and the room with us was the safest place – although I do think they should have pushed for a consultant to come quicker than that!! They also said my husband should have got a phone call from recovery with an update (instead of waiting 3.5 hours with no news), but that definitely didn’t happen. Unfortunately the pharmacy won’t allow them to keep certain drugs on the ward (if they had the right drugs maybe my placenta would have come out quicker and we wouldn’t have had to have waited such a long time for it to come out – when Isabella was still attached…), but I guess certain policies will be harder to change.

They have said they will send me their new care plan, and have invited me back in the New Year to see what changes they have implemented. I know not ever hospital would take this much interest in improving, and in that sense I feel lucky to be dealing with the Royal Surrey – although no one would describe me as lucky after this year. It just brings me some tiny bit of happiness to think it wasn’t all in vain, changes will be made and if anyone else loses a baby on that ward, the processes and environment will be better for them. I am also going to take in an “in lovely memory” book for them, with the first entry being about Isabella, so it can be given to parents who lose babies on the ward, to write in their sleeping babies names and a goodbye to them.

So to finish with some lyrics from my walk on song…its about having “fight”.. this week I fought for other parents, and it gave me clarity. My “match” (my opinions) might not make an “explosion” at the hospital, but it will effect change and my voice will be heard. My friends and family are always asking how I am feeling (which is very lovely of them), and I tell them I really am OK as I could be under the circumstances, they look sad for me, but I think last week I’ve “proved I’m alright” and starting “right now, I will be strong… I’ve still got a lot of fight left in me”.

Footnote: just heard from the hospital, my first blog (about what happened) is being shared with the staff on the ward so they understand from a first hand perspective!!

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I feel guilty when I laugh…

So… the annual #waveoflight is on the 15th October at 7pm, as part of Baby Loss Awareness week (#BLAW2018). Any other year and this united remembrance of lost babies would have passed me by. Little did I know when I got a positive pregnancy test in January, that I too would be lighting a candle this year, remembering not ONE but TWO of my babies – one boy and one girl – that were born sleeping this year, only 5 months apart.

This isn’t going to be a pity me post, but it’s my story, and I want to tell it. It also won’t be the “best practice” length of 500 words… no one can describe losing two babies in just 500 words. I quite understand if no one reads to the end, in fact I highly doubt people will, but it has been a cathartic exercise for me, so perhaps just bear with.

So here is how it happened…in April we were delighted to be pregnant again, so pleased to be giving our lovely boy a sibling. We had the harmony tests done at 10 weeks, and all the syndrome tests came back as 1 in 10,000 (it’s a private test that is more accurate than the NHS, but we thought it was worth the money to make sure we knew early on that everything was ok, having had quite a troubled first pregnancy) – and we were also told we were having a boy – as they can test the DNA in my blood. Our 12 week scan went well, and we told all our friends and family. We were due to have a 16.5 week scan on Monday 16th April (the Drs wanted to check our sons kidneys, as at 20 weeks when I was pregnant with my first son they discovered he had a problem with his kidneys). Unfortunately, a week before this I became ill and started bleeding. Initially I got sent to Basingstoke hospital, had a few checks, but was sent home, the presumption being it was just a bit of spotting. Sadly I continued to bleed all week, and after my midwives advice drove myself to RSCH A&E on the Thursday. My bloods showed I was fighting an infection, but again bedside scans and checks said everything was ok with our baby. My birthday was on the Saturday, and I woke up with horrendous bleeding, thinking then that our boy was still leaving us – and was just taking time to go. Again checks were done, and I was sent home so I could go for a birthday meal with my husband and son, with the view to coming back for a detailed scan on the Monday.

I went home feeling hopeful, I was feeling well enough apart from the bleeding, and the hospital were confident that the antibiotics were working. However, the following morning my waters broke. We naively went to the hospital not realising this meant the pregnancy was all but over. I was taken into a small side room, to have a bedside scan, again believing it would be ok, my husband was parking car and getting me a drink. When they scanned all my waters had gone, but the babies heartbeat was still beating – you could see it and hear it. My husband came in the room, and I will never forget the look on his face when they broke the news, to this day it’s etched into my memory. They then told me that I would be taken through to the a special “delivery suite” called the Forget-Me-Not room – I couldn’t comprehend this, I had never realised that I would now have to give birth to my son, I thought there would just be some sort of operation. At one point they even said he might be born alive for a few seconds, this was terrifying, but for some stupid reason gave me hope.

It was not that simple though…as his heart was still beating, we had to wait for it to stop before they were able to induce me. They said in VERY rare cases waters where only a little water had been lost, it can build up again, but I had all of my waters, so there really was no hope. We then had to wait an agonising 10 hours for his heart to stop beating, which included a scan and use of a doppler, and being told if my infection levels continued to rise, we might have to abort the pregnancy. At 4pm it started raining heavily, and I feel strongly that’s when he left us. It wasn’t until around 9:30pm that a Dr came to scan me, and we saw no heart beating on the scan. We then had to wait again for a second Dr to confirm this – cruelly the Dr was the same one that had helped me deliver my son two years previously.

Then the induction started, one pill every four hours. They told me to sleep in between, but I just lay in the dark room, with my husband beside me, trying to absorb what was happening. Three lots of pills later, at 9am the following morning, 24 hours after my waters broke, the contractions started. With the help of gas and air, Max was born at 10am, weighing 113 grams. The midwife who handled it all, Eve, was phenomenal – I don’t know how someone in that position copes so well. We saw him to say goodbye, and had him blessed by a priest. We decided against an autopsy, just feeling he was too little and had been through too much to be sent off and tested. I had many blood tests done, but they never provided any answers.

To say we were devastated doesn’t even come close. There are no words to describe how you feel. I had started to show, but felt so empty and such a failure. I couldn’t believe we then had to plan our babies funeral. Three weeks later we were at Guildford crematorium, we had both chosen a song and a poem, and attended on our own, it was a grieve we wanted to deal with in private. We spread his ashes somewhere special to us, and I added to the memory box the hospital gave us (which included a matching teddy and hat that he had in the coffin with him), with the various scan photos and the funeral order of service. In Max’s honour I completed the Couch to 5k Challenge in the summer, and my wonderfully generous friends and family donated a total of £680 for the SANDS charity – who had funded the suite where I had given birth. It was good to focus on this at the time, but in hindsight I think I should have focussed more on how I felt about losing him.

We both only took about a week off work – looking back now that was far too short. We just tried to keep ourselves busy and await the ALICE bereavement appointment at the hospital, which might have given us answers. It didn’t, more tests and scans, and still nothing. It was “just one of those things”.. and “no reason why we shouldn’t try again”.

In July we had a family holiday and decided to try again, I really wanted to be pregnant by the time the baby I had lost was due. To my amazement we got pregnant again straight away, baby was due on the 4th April – so 11 days before the year anniversary of losing our son. I kept telling myself this time would be different, but didn’t enjoy a single day of the pregnancy, continuously paranoid. I was making sure I was keep healthy, no caffeine, plenty of exercise, cutting out all danger foods etc. I had 7 week scan, and all was well – baby was in the right place and had a heart beat. Again we had the harmony test, again all the results were fine, and we were over the moon to be having a girl.

On Thursday 20th September we had a successful 12 week scan, then at 8:30am the following morning I started bleeding. In what felt like de-ja-vu, I drove myself to A&E and sat sobbing on my own until someone came to see me. Tests were then done again, infection levels were up, but bedside scan showed our baby girl was fine. I asked to stay the night, just in case, and the bleeding suddenly increased at about 3am. Over the following days the bleeding continued and infection levels rose. I wasn’t in pain and had no temperature etc, so various Drs told me to keep positive. Then on the Monday morning I called my husband telling him to come straight to the ward, as I was having contractions. However, they stopped and we prayed it was a false alarm. We had a detailed scan and saw our baby girl wriggling around – they told us this was great, and I hoped it was, but still felt that we were losing her, and it was a simply a matter of time. I was just feeling the same way I was when we lost Max.

My husband went home, to make sure our son was looked after, me reassuring him that I was fine, and I would see him the following day. Then at 8am the following morning my contractions started again, this time stronger and more painful. This was my third labour and I knew what was happening. A lovely lady from the bed opposite came to help me – we had grown close over the last five days, as the Drs were on their rounds and I was waiting to be seen. The contractions quickly got stronger and were every two minutes. I knew there was no point calling my husband to join me, my beautiful baby girl was coming. The Drs arrived and told me to “hop up on the bed” so they could check what was happening. I shouted that I was giving birth, but I know by the look on their faces they didn’t believe me – it was just by chance they were there – as two minutes later I gave birth to my sleeping little girl that I had hoped for and dreamed of. She arrived two days before the son we lost in April was due.

There was then chaos – this had never happened on this ward (hospital policy put me on a ward that was gynaecology and gastro, as I was too early in the pregnancy to go to the maternity ward – the hospital had recently lost its dedicated gynae ward ), they didn’t have the right equipment, or drugs, even the nurses had to use their phone lights to help as I was examined down below. Luckily, there was an amazing nurse called Laura, who had endured a miscarriage, and held my hand through out, she was my absolute rock. I never thought I would give birth behind a curtain, with five other sick women listening to my screams, whilst they recovered from various illnesses. A form was given to me two minutes after giving birth, signing that I would organised my own funeral and I wanted an autopsy. I made one of the Drs call my husband, then my sister, and tell them what had happened. All I wanted was my husband to come and hold me.

We were moved to a private room, my little girl still lying on the bed, whilst they waited for me to pass the placenta. My husband arrived in lightning speed, and I explained to him what happened. Again, we were both beyond devastated, again I felt empty, and again I felt like my world had fallen apart. For the second time in five months we met a sleeping baby, our Isabella, and had her blessed by a priest. She was so little, our beautiful girl that would have been a wonderful sister for my son.

This time I had a general anaesthetic, for what is termed a D&C, to make sure I didn’t become iller. This was the first time I had a general, and woke up thinking I had dreamt the whole nightmare, I couldn’t – and still can’t – comprehend that we have lost two beautiful souls this year. We are yet again awaiting results and planning a cremation. This time I need some more time to heal – physically, emotionally and mentally, luckily my boss has been amazing, very supportive and told me to take all the time I need. And I have no idea what the future holds. I long for a sibling for our boy, I know how much love he – and us – have to give, but know this is now a very very unlikely. I don’t understand how people endure multiple miscarriages, one woman in a forum I now belong to having lost 16 little angels before she had a healthy baby.

On the 31st October, after a request from the ward Matron, I am going to have a meeting with the divisional head of nursing, to discuss what they should include on the ward to make this horrific experience even remotely bearable for other parents – setting up a special room, like they have in the delivery suite. I know this was effect me, especially going back to the ward where it all happened, but if there is anything positive I can get from my experience, and help other parents to be, then that is something I want to deal with. I must say the staff were amazing both times, so much care and did all they could. However, the hospital policy on where to put first trimester mums, and the care they receive, needs to be reviewed from further up the hospital chains I really hope I can effect some change.

Today is also #worldmentalhealthday, and I have now had my first ever counselling session, to try and wrap my head and heart around what I am feeling, an another reason I wanted to publish this blog this poignant week. I will see how this counselling goes, and maybe focus on it in my next blog.

Two weeks on, I still feel guilty when I laugh, or when I forgot what has happened this year – I really can’t wait for 2018 to be over. There will forever be two of my puzzle pieces missing, but Max and Isabella will live in my heart and mind until they day I die. I try to remain positive and happy for friends who are expecting, but each time a new one pregnancy is announced or a new baby is born, it stabs at my fractured heart a little. I will always feel that we aren’t complete as a family. I will always never be able to stay long in the spare room that was meant to be a nursery this year. I will always feel that I have let my husband down, losing two of his beautiful children.

I would like to finish by saying without the support of my husband, family and certain friends (you know who you are!), this would have been so much harder, I am so grateful to have them around me.

Finally, if you see on a friends Facebook a picture of a little light burning on the 15th October, send them a virtual hug, their pain is indescribable, and will sadly last forever.