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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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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.

cropped-isabella1

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!!

il_570xN.801521382_9ra0.jpg