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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

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.

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A new tribe

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My 20 year tribe

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

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The beautiful 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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