A Tribute to my Tribe…..

This year has been shit for me. That’s a fact, no one can argue with me on that. Losing one baby is tough, but losing two in such a short space of time is just effing unfair. My CBT counsellor said to me she didn’t want me to pin all hopes at the clock striking midnight on NYE and me feeling heaps better, because it’s no longer 2018 – the year I lost two beautiful babies, she said all I would think instead is “last year I lost…”. It’s a good point, I don’t know why I was kidding myself I would feel much better just because of a digit change in year.

I’ve been reflecting a lot on what I should be grateful for. And very near the top of the list is the group of amazing women I am lucky enough to call my best girl friends – which many women are now starting to refer to as their tribe.

My particular tribe are some of the strongest women I have ever encountered, and I want to talk about why they are so strong, many of them having faced true trauma. Most of them I met at college – but one I have had the fortune to be in my life since the day I was born. My sister and best friend. She is my rock, and has been through so much. She sadly suffered an ectopic pregnancy and lost one of her tubes shortly before Dylan was born. It must have been horrendous to see me heavily pregnant (I know how I feel seeing pregnant women now) – but she never stopped wanting to be near me, and was there in the hospital day two to meet Dylan. She now has a wonderful son and I know him and Dylan will grow up as close as brothers.

One of my tribe has battled cancer – and WON! She amazed me, and still does, with her positivity. She wrote blogs throughout her fight – https://bootybeastgreenwood.blogspot.com – which is what inspired me to blog about how I have felt these last few months. Her blogs are so powerful, so raw – I cry almost every time I read one – and if not sad tears, its happy tears that she tackled The Big C head on and bloody smashed it.

We both agree that writing about it is good for the soul, and also important so that people don’t feel alone. A few lovely female friends and colleagues who have sadly lost babies have messaged me and said that my blog has helped them – which truly means the world to me.

Another member of my tribe has had a recent cancer scare – and again tackled it, didn’t let her bring it down, and continued to be an amazing mum, a student and superstar at work (as well as having a hot new boyfriend) – I am in awe of her.

One final tribe member I often think about when trying to gather my strength, and remember my blessings, proved how strong she was several years ago. Her first son was born extremely prematurely, spending the first 100 days of his life in hospital. This must have been so harrowing, to bring a living baby into the world, but not instantly be able to hug him. My heart ached for her when it happened, and now I am a mum I am so amazed by how strong she was, how she kept positive and how she made sure her little man had the best care. And what I wonderful chap he has become, always so lovely to Dylan when we visit.

Here’s a few of my tribe…so fantastic that I have them on my wall to see everyday, and remind myself how lucky I am.

I do not necessarily count myself as a feminist – in fact love a door being held open for me (well actually, wouldn’t mind if the door opener was male or female!) – but I do believe women are stronger together. Stronger caring for each other, and not slating each other. So my advice to you is this:

See your tribe – however far apart you are, make it work, book catch ups in – there is no time like the present!
Support your tribe – sometimes one of your tribe might do something a bit silly, or maybe they are trying to achieve something – whichever it is, make sure you are there for them at the end of the phone and know that you have their back
Celebrate your tribe – when they have successes, don’t be envious, but give them a high-five (virtual if need be)

If you don’t have a tribe – find one! A tribe can start with two, so message me and we will go for coffee or wine, or both!!

That’s me over and out for 2018, will blog again in 2019 after I have had a lovely test involving a camera up my foo on the 14^th January to hopefully give us some more coherent answers. Until then, look after yourselves, and your tribe!!!

Times Flies…

Time flies when… your waiting TEN weeks for post mortem results. I’ve now been back at work for a few weeks – albeit a phased return, so a couple of days then first week, with this week meaning to be my first full four day week. However, Monday was results day, so I decided to book a days holiday to “relax” before heading to the hospital, which basically consisted of going to the gym and having a bath!

Due to my neurotic nature I left far too earlier and arrived with over an hour to spare. Stupidly I sat in the hospital Costa, only to see at least five couples walking past happily with their bright yellow maternity folders, smiling as they come out of their scans. Who can blame them, it is a wonderful feeling – that I am lucky to know. But it still stings, I should be coming to a 22 week scan.. not to hear theories around why I have lost another baby this year.

My consultant is excellent, she’s very caring and very thorough. But unfortunately, as predicted, she can only give me theories as to why we lost Isabella in the exact same circumstances that we lost Max (although it was four weeks early in the pregnancy). The blood cultures from when I was first admitted showed nothing, neither did the vaginal swabs, or any of the bloods taken after she was born. The scans were normal. The post mortem was normal. I try to explain to people it would be so so much easier if we could just be told, you have this problem with your DNA, or your blood doesn’t clot, something that would explain it, and 100% rule out any future pregnancies – as if we knew they would all end up the same way, we would never risk it. Now I will always think, what if we tried just one more time…

Her main theory is that due to me heart shaped uterus, the placenta both times attached in an awkward place, and as it grew separated from the side of my womb – which caused the heavy bleeding. As such, she wants to do a camera test to look inside, and see if I might need keyhole surgery to repair things. Again, I am left thinking PLEASE find that it was something to do with the structure of my uterus, as that would at least give us answers. But equally, it leaves me feeling, was my womb damaged during Dylan’s traumatic birth (he was “back to back”, had to be pulled out with forceps, but then the umbilical cord snapped and my placenta had to be manually removed) OR was he a miracle? For some reason, did my placenta with Dylan form in a place that my odd shaped uterus could handle? I am going with the latter… Dylan is my little miracle, he is amazing and I love him more than I ever thought it was possible to love another living thing.

Now it’s another waiting game, waiting for the all-important camera test, then perhaps waiting for surgery and waiting to hear if we are just going to be told that they don’t know why we have lost two beautiful souls.

Finally, I wore my baby loss awareness T-Shirt with pride as I went to hear the results, my love for Isabella and Max will always be #everlasting.

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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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