Half Way… Half Hope?

Been a while since I’ve blogged, but still living day to day with this pregnancy, and set myself the goal of blogging again once we were twenty weeks – which was yesterday. A milestone which had followed an absolutely horrendous week – physically, mentally and emotionally.

Let me explain. At ten weeks we had paid for a private test called “Harmony”, which looks at the chromosomal abnormalities a baby might have, it’s meant to be around 99% accurate, as opposed to the NHS blood screenings for these that is approx. 85% accurate. Everything came back clear at the time. Then when I had my combined NHS screening at twelve weeks, although the Nuchal Translucency measurement (to do with the amount of fluid around baby’s nuchal fold – high fluid could be a sign of Downs Syndrome) was normal, 1.5mm, my results came back as 1 in 40 for Downs, so there the blood test was showing something up. At the time, my consultant said not to worry as I had the results from the Harmony, which were far more accurate. Then four weeks later (about two weeks ago), she was looking through my file at a clinic with her, and said it wasn’t good enough that they had only screened on 8% of Fetal Cells in the Harmony test, the NHS like a minimum of 10% apparently. So she order the SAFE test (Harmony just by another name) to be done then and there. We waited an anxious seven days, and on Friday last week it came back with bad news – 1 in 127 risk for Downs.

We were in turmoil. My consultant was away for another two weeks so couldn’t discuss with her, and we were at a loss of what to do. We were offered an amniocentesis test – which basically means putting a very long needle into my uterus to take some of the amniotic fluid, to test the baby’s urine. This was a diagnostic test, that would tell us one way or another – great. But not great. It came with a risk of 1 in 100 chance of miscarriage, and given my history, it felt like my chances of miscarriage would probably be higher than that. My main thought being, what if we do this, and we accidentally kill a healthy baby, I would never forgive myself. But my head was also saying, I can’t spend the next twenty weeks wondering, it would affect my relationship with Matthew and Dylan – as would be too much pressure and distraction and not being able to focus on everyday life. I was also worried that the baby might be born incredibly unwell, perhaps with heart problems, and not survive birth and then I would have carried on pregnancy building up hope, to only then be devastated all over again. But all that being said, I don’t think we would have ever gone through with an abortion unless scans really did show a problem with the baby’s heart or brain which meant he would have no quality of life. I don’t think anyone really knows what they would do in this situation, until you are forced into it. So I hope nobody judges me that we even contemplated what we would do if he did have Downs, not unless you have been in my shoes.

On the Monday morning I went to see a specialist at the hospital, and she said in reality we had now had two “positive” tests for Downs, so in most cases they would strongly suggest the invasive test. She said it’s better to have it now, as it can bring on birth, if we left it later, then the baby could be born extremely prematurely, with severe health problems, so they normally say before 24 weeks or not until 34. I called Matthew and we decided to at least book at appointment the next day at St George’s in London, where we would have a detailed scan and then the test, but that we could always cancel once we had slept on it. Not that any sleep was possible.

The next day we agreed to drive to Tooting, knowing that we could pull out last minute. The staff there were fantastic, and I had the most detailed scan I have ever had, they even called into the room one of their main consultants in fetal medicine to do it. She said although the scan showed no physical problems, the only way to truly know was to do the test. We decided we couldn’t go through the next twenty weeks worrying about it, so went ahead. It was incredibly painful. When it was done, I went a bit dizzy so had to sit and wait for a while before we left. They also took some of my blood for a research project they were doing on the test, as I had had three different results from the previous blood tests, they thought it would be an interesting case to add to their research. Wasn’t ideal, but at same time, they had been so kind and so thorough that I didn’t have the heart to say no.

The next 48 hours were a bit of a blur, it was the “high risk” chance of miscarriage, so was ordered on strict bedrest. Luckily Matthew was able to work from home to do the nursery runs etc. – as I wanted to avoid lifting Dylan. Unfortunately, on Wednesday night I started feeling ill, very hot and headachy as well as pain when I went to the toilet. So, mum and dad had to rush round to look after Dylan whilst we drove to the hospital. We were there for four hours, well gone midnight, with more tests completed. There were infection markers in my urine and blood, which for me felt like it was the beginning of the end, as that’s what had happened in the previous two losses. They gave me some antibiotics and told me to come back if I got cramping/bleeding etc. Luckily, I didn’t, and started to feel better a couple of days later. Basically I spent an entire week in bed, in a heatwave, wondering when I was going to loss my baby again. I am very fortunate in that my boss told me to take all the time I needed and not to give work a second thought, so at least I didn’t have that to worry about on top.

On Thursday afternoon we got the results – everything was clear. We were delighted, but at the same time, I couldn’t help thinking, that’s only the next hurdle we have overcome, I am convinced there will be more. I think my consultant will be surprised that we had the test, but sometimes I think you have to roll the dice, you have to have faith that you have had your cruelty in life, and it’s your turn for something good to happen.

On a positive note, I had a scan on Tuesday, and everything seems fine, but at the back of my head, I always think “for now”.

Here is our little man, it reminds me of the Rodin’s The Thinker statue… or should that be Bruce Forsyth?!

As it stands, I am twenty weeks, with the plan of coming off the progesterone at 34 weeks and being induced or having a C-Section at 38 weeks – as the consultant does not want to risk my placenta making it all the way to forty weeks. They will also scan at 22, 26, 30, 34 and 38 weeks as a minimum. Each of these will be a milestone, as will 24 weeks, as this is the “viability” stage – when the baby could be born and potentially survive. So although I am hoping the next four weeks go quickly, I also want to make sure I am not wishing the time away, as I know it’s important to enjoy every minute with Dylan, as he is still my little miracle.

We are expecting…but expecting what?!

So in my head, I think we are expecting more devastation, but my heart won over my head and we decided to try one last time, third time lucky right?! We are indeed hoping to welcome a little boy on the 17th December. I know a lot of people will be shocked by this, I’ve even had one comment of “you’re a glutton for punishment”… but we both felt we had one last try in us. Some people have been a bit more optimistic, telling us they will keep fingers and toes crossed for us. Others have described us as “brave” – which I guess could be taken in a positive or maybe negative way – in that we are brave because we might well lose again.

As before we got pregnant very quickly, which I know is incredibly fortunate, as many couples try for years, but I still sit here and think I should either have little Max at 9 months old or a tiny Isabella at 2 months old, so I can’t exactly feel “lucky”. I’ve already had four scans, and the hospital are keeping very close care of me, scanning every two weeks, as well as being on various medication, which “should” help. The medication is making me feel horrendous, and it’s an even more bitter pill to swallow when the consultant tells me the studies are mixed on if they will actually help or not, but I am willing to try anything.

My first scan was at 6.5 weeks in the EPU, I was terrified. I had convinced myself that there would be nothing there, that the 6 positive pregnancy tests and missed period was just nature playing another cruel trick on us. It’s odd, when you see a teenie tiny heart beating, there is a moment of relief, followed by the realisation that this is the first milestone in many, and I’ve been here twice before, then had it ripped away.

The next scan was at 8.5 weeks, having had a booking in appointment the day before. Again, all I could think was “I bet that hour and a half booking in yesterday was a waste of time, baby is bound to have gone”. But there it was, grown into a recognisable baby shape and heart beating away. Again the same sense of relief, but the same dread of getting through to the next scan and seeing a bigger image on the screen.

The third scan was a Harmony test at a private clinic, even in the nicer surroundings (free parking, free tea and free biscuits!!), I still felt terrified. But again, the scan went well, and a week later when the blood test results came back, we found out that we had very low risk of the three syndromes, so at least in my head I thought “at the moment the baby is healthy”. We also found out that it is a little boy, a much longed for brother for Dylan.

The fourth scan was on Monday last week – making me 12 weeks plus 6 days, I know some people would say “oh I am 12 weeks”… through out this pregnancy I will always add the days, as each day the baby lives is an extra tiny ray of hope that he will survive. It was lovely to see him kicking away, sucking his thumb, and normally with this you would go and shout from the roof tops that you are expecting a little bundle of joy. I don’t feel joy, I just feel fear. Every day I go to the toilet and expect to see blood, I don’t think that will change the entire pregnancy. After all, by this gestation Isabella had been born.

One milestone will be tomorrow, when I hit fourteen weeks – this means if anything did go wrong, I would be on the maternity ward, not on Compton ward. I love Wendy – she has been fantastic through all of this – and her team on Compton are all very caring, but being on the maternity ward is just slightly more reassuring. Another major milestone in my head will be once we get to 17 weeks, as that will be further along than Max. Then a 20 week scan will be another milestone, 24 week mark when baby COULD survive if born is another milestone. I need to have these mini successes all the way along, otherwise I think my head will implode with paranoia about another loss.

It’s odd to say I don’t want congratulations messages, I don’t think I will want to celebrate anything until he is actually here. All I want is people to keep their fingers and toes crossed for us please that we get our Rainbow baby x

rainbow_baby_pregnancy_announcement_card-r0adc6776a83d43a0a5612630a7d0f717_emu3i_540

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….

“What’s in a name?”….

“What’s in a name?” Juliet asks… sadly I am not talking about star crossed lovers. It’s now been a week since my last and final appointment at the hospital trying to find out answers. I was silly (as pointed out by my CBT counsellor) as I kept focusing on certain dates – the post mortem results date, then the hysteroscopy date, then the 3D scan date. Hoping that each of them would give us the final piece of the puzzle.

As you know the ALICE appointment back in December didn’t yield any answers. So on Monday 14^th I had a hysteroscopy, and despite the promise of a “special” chair (thanks Lou and Riggy!), being turned upside down, some special liquid and a camera inserted to look at my uterus (twice so that my consultant could see after the first specialist had looked) – all they could confirm was that there was a slight tunnel. This could mean one of two things they explained (I must say my consultant is lovely and always explains medical speak to me in normal terms), either I have a true bicornate uterus (like a heart shape with a big dip down the middle) or a uterine septum – basically a bit that hangs down.

The former they could do nothing about, the latter they could operate one, under keyhole surgery and then I would have to have a coil in place for three months so that my uterus wouldn’t collapse. I was hoping for the septum, as this COULD mean that the placenta(s) or babies had both attached here, and it would never have had enough blood flow to it. Very odd thing to hope for an abnormality like that, and actually want to NEED surgery to fix it, but it was better than the other option which could not be operated on and never fixed. Now, I say I wanted it fixed, is not because of wanting more children, simply and perhaps too to honest for some, I just wanted my body rid of something that potentially killed two of my previous babies.

Anyway, the lovely consultant pushed things through and got me a 3D scan on the Thursday, as this would confirm either way, with a transvaginal camera, what the exact structure was. So again I went away counting down the hours, thinking THIS IS IT! This scan will show the septum, I will have my answers, I will get it cut off and move on. It didn’t. As soon as the 3D image popped up the specialist said “No septum there, no need for surgery”. I burst into uncontrollable tears. Where had my answers gone? Where had my dream of riding my body of evil gone? He did say my uterus isn’t bicornate, it’s an arcuate uterus – the one LEAST associated with problems. So what’s it a name? Actually a LOT for me, it’s not a “septum”, it’s not even “bicornate”… just plain old “arcurate”…

So, it seems that Dylan was our little miracle, he survived my odd shape uterus, and is here every day being the light of my life. When Dylan is older, and asks why he doesn’t have a sibling, I will use a phrase a wonderful courageous colleague of mine used with her child, “my body was made just for you”.

download

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.

47204912_10157161188274589_4119072811677384704_o

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

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.