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Three years on…and still no easier

So it’s been six months since my last blog, and three years ago today since I lost Max. I really wish I was writing this blog to say “I am fixed!”. I wish I could say that I haven’t spent the last two weeks dreading this day, that I don’t shudder every time I hear the name Max, that I don’t think about how I should have a two and a half year old, that I don’t look at the age gap between Dylan and Isaac and wishing it was smaller, and that I no longer dread my birthday – knowing that the day after is the anniversary of Max’s death. Sadly, if I did say any of those things I would be lying. I just want to know when this will get easier, if anyone else has been through this, as the years pass, does the anniversary sometimes slip pass without you even thinking about it???

So it’s been six months since my last blog, and three years ago today since I lost Max. I really wish I was writing this blog to say I am fixed! I wish I could say that I haven’t spent the last two weeks dreading this day, that I don’t shudder every time I hear the name Max, that I don’t think about how I should have a two and a half year old, that I don’t look at the age gap between Dylan and Isaac and wishing it was smaller, and that I no longer dread my birthday – knowing that the day after is the anniversary of Max’s death, I don’t look at the forget-me-nots that appear at this time of year and fight back the tears. Sadly, if I did say any of those things I would be lying. I just want to know when this will get easier, if anyone else has been through this, as the years pass, does the anniversary sometimes slip pass without you even thinking about it?

Recently I decided to go through my phone and delete some of the 20,000 plus photos on there. They start in Summer 2015, pre kids, fun girls holidays, nights out, work trips etc – all of which seem a lifetime ago now. Then move to pregnancy photos of me with Dylan in my tummy from Autumn 2016, then hundreds of photos of Dylan’s first year in 2017, all of which were lovely to look through and remember so many happy times.

Then 2018 comes, the year I was dreading looking through. All start off ok, a picture from my birthday reminds me that I spent five nights in hospital bleeding, and that I begged the hospital staff to let me go home for the night so I could go to Pizza Express with Matt and Dylan (as I was due to be back in two days later for a scan). Happy and smiling at the camera, probably thinking I had been bleeding for a week and nothing happened, so surely I was ok, thinking hospital wouldn’t have let me go if it was that bad. Now, having read hospital notes, I know it was classed as a “threatened miscarriage”, and although the hospital didn’t say it, they may well have thought I was going home to lose the baby.

Then suddenly BAM a photo of the Forget Me Not baby loss suite at the Royal Surrey Coutny Hospital, where I gave birth to Max on the 16th April. I am not sure why I took the photo, or why I kept it, but just wanted to always be able to picture the room in which I held him in the little woolen woven basket.

I look through the photos of the next two weeks, and now I know I went back to normal lift too soon. We wanted to keep things normal for Dylan – had family days out (we took him to the Zoo, the beach etc), went back to work, visited friends etc. I know look at those photos knowing that the smile in them was fake, I wasn’t healed mentally or emotionally, even if physically the bleeding had stopped. I kept going through the photos of that time, I guess in some ways a self inflicted torture. I certainly shouldn’t have done this so close to the anniversary, but in some ways I wanted to make myself certain that we never let it effect Dylan. I’ve decided to give myself a break from doing it though for the next few weeks, as I know all too soon I will hit the photos from around September 2018, and know that’s when my heart broke for the second time with the loss of Isabella. I feel like there are photos of me pre loss, and post loss, I feel like something changed within me forever, having that level of pain and hurt.

I don’t know if the years passing will make it easier, all I know is that every April 16th, the date Max was born, I will walk to where Max’s ashes are scattered and tell him how loved he would have been, and that he is always in my heart.

In other brighter news, I had a smear test two weeks ago, and got the results this morning, all clear! Although I didn’t think there would be any problems, I always remember my dear friends Riggy’s battle with cervical cancer and know that cancer doesn’t care who it picks – it can get you any time, so you should always be prepared. Riggy was, and she kicked cancers arse!

I hope you are all surviving lockdown, that you are making happy memories with your families, and looking forward to a summer of meeting friends without fear, and possibly being able to hug your parents for the first time in over a year.

I promise more positive blog next time 🙂

Take care everyone.

P.S – I am not saying I am not happy now, I know how truly blessed I am, not only to have my rainbow baby, but to even be able to have had Dylan as well – as so so many women struggle to conceive. Just some days are easier than others.

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While you were sleeping…

Advanced warning, this blog is going to talk about my traumatic birth experience… if you can’t handle the following fact, then I suggest you don’t continue on…I was put to sleep under general aesthetic not knowing if I was going to wake up to my baby being dead or alive.

For those of you that are still with me,  get comfy, maybe with some tea – it’s going to be a long one! The most important thing I want you to take away from this is how important it is to listen to your body, that and having faith in the glorious NHS.

On Saturday 30th November, at around 4pm, I realised I couldn’t remember the last time I had felt the baby move. We had gone into town for the Santa run, and I had a sugary hot chocolate, which would normally make him go crazy in my tummy, but nothing had happened. So when we got home I had a lie down.. nothing, then a bath.. nothing. Throughout my pregnancy I had be diligently counting kicks, following the advise from the wonderful Kicks Count charity – https://www.kickscount.org.uk, who emphasise how important it is to monitor movements, and be aware of any changes in your babies normal pattern. Ultimately knowing this helped save Isaac’s life.

I came downstairs and insisted to Matt that we go to the hospital immediately. Something just didn’t feel right. Mum came round within about ten minutes to look after Dylan and put him to bed (I am sure she teleports somehow), and we headed to the hospital.

If Matt was unkind, I am sure he would have told me he thought I was being neurotic/OCD about it, but he’s not unkind, he is supportive and understands that I lived every day of the pregnancy expecting to bleed and lose another child. We got up the ward and luckily were seen incredibly quickly. They took us into a side room and I immediately started crying – it was the same room in which they told use that Max was going to die, having lost all my waters. I thought it was a sign. The midwife was very sweet and offered to move us to another room, but I just wanted to “get on with it”. I was put on the heart rate monitor and immediately there it was, happily beating away at 140 beat per minute – or so we thought. The sobs of relief came, but were short lived.

The midwife left the room and within minutes the machine started going crazy, Matt went out into the corridor to find her, as thought maybe it had come unhooked etc. Another midwife came in – Shona – to readjust the pads, but it wasn’t working, his heartbeat was going below 100 (something termed Bradycardia) and I am pretty sure it flashed up lowest at 63 BPM, there was definitely an 80. Then suddenly there was also a Dr in the room, who did an internal check to see whether I was actually in labour or at least dilated, I was not. By this point I was in a lot of pain, I thought it was contractions, it felt like he was twisting in my tummy.

Next thing I knew they said we were going through to “delivery”. I naively thought this meant they were going to break my waters, but then the reality became clear as I was rushed down a corridor, with Matt practically running behind us, as alarms were blaring and people were appearing left, right and center.  It was then I saw the door we were going through had a sign saying “theatre” – I was still confused at this point – they wouldn’t let Matt in, and I thought it was just because he needed to scrub before theatre and that I was having an epidural, all I remember is Matt calling “I love you Becky” before doors closed on him. They told me a little white lie and said he was getting changed when I begged for him to be let in.

By that point there were people everywhere, someone doing a cannula in each hand, someone putting towels across me, painting my tummy with weird dye, a catheter, oxygen mask, and being told to drink some horrible tasting liquid. I still didn’t really understand that I would be asleep for the birth of my baby. I was thinking, this is it, I am going to have yet another dead baby. Nature had played a cruel joke on us letting us get to over 37 weeks, and now I was going to lose my rainbow baby. The last thing I remember doing was screaming at poor Shona, “DON’T LET THIS BABY DIE!!!!!” over and over. I went to sleep not knowing whether he was alive or dead. Something that I will never ever get over. We were later told that Matt wasn’t allowed in the room because a) they don’t let husbands in as it takes up time to scrub etc and b) it’s thought to be too traumatic for the husband to see his wife being put to sleep and baby being born that way, but I still wish one of us had been there to see the little man being born.

Two hours later I woke up in a small dark room, where Matt had been all that time – Isaac having been given to him twenty minutes after we went into theatre (poor Matt – when I think about him being on his own in there not knowing what was happening with his wife or child makes my heart ache with sadness for him).  Bless him, Matt had done skin to skin with Isaac, and called my mum to let her know the baby had arrived safely. Mum then had to stay the night in our bed and look after Dylan for the next few days – luckily he adores his Granny and Grandpa. It’s still hard to come to terms with thought that my mum and dad knew my baby was alive before I did.

Apparently when I came round the first thing I did was start shouting about the radio being too loud (there was no radio). When I opened eyes properly, there he was being held up to me in a little red hat and a towel. I looked at Matt and said “is he alive?” (the red hat in my head signified danger/end as Royal Surrey use a traffic light system for hats for their new borns). Then they handed me my miracle.

I felt like I was in a weird dream. The pain I was in then showed me I was definitely NOT in a dream!! Unlike an epidural, where the pain relief is still present for a few hours after c section, with a general, there was no such relief sadly – which is one of the reasons why they only do it as a LAST resort. They gave me a morphine drip, but for some STUPID reason, I didn’t want to use it, I think I just wanted to be as compos mentis as possible, to be in control of my mind, to absorb what had happened.

They were monitoring me every two hours, as I had lost over 1.7 litres of blood, and there was talk of a transfusion. But they were both surprised and happy that I seemed “really well” given the amount I had lost, and my blood pressure and iron etc were all fine. The staff were very sweet and got a large black beanbag for Matt to try and sleep on next to me – although his legs still hung off the end. There were times during the next few hours where I lay in the darkness and thought I was in the same recovery room, like after we lost Isabella and I’d had a D&C after loss, but then suddenly Isaac would make a noise in the hospital cot, and I would remember that this time my baby was alive.

Within a couple of hours I was able to get Isaac to breastfeed, which I was so happy about, but then bubble burst slightly when they told me yet another side effect of a general was that it delays your milk coming in. He was so little (6lbs and then dropped to 5lb 6oz over the next 48 hours), and I just instantly felt like I wanted to protect and nurture him. It was hard though not being able to pick him up myself, but every time I moved my tummy hurt and I still had a catheter in, as well as two cannulas.

At about 7.30am (12 hours after he was born), at my request we were moved to a private room – I just had spent so much time on wards at that hospital in the previous year that I just couldn’t bear the thought of being on one again. I wanted the three of us to have some privacy, I needed the quiet to process what had happened. One of the Drs came in and said two things that will always stay with me. One was that we were lucky the little man wasn’t in SCBU given the circumstances of his birth (turns out he had the cord wrapped round his neck), and secondly that we were “moments away from the worst case scenario”. My blood ran cold when she said this. So many what if’s – what if we had dinner first before leaving, what if we had stayed to put Dylan to bed, what if mum had taken longer to come round to the house, and what if he had kicked just once? I know if he had kicked just once I would have not insisted on going to the hospital and just gone to bed.

The first full day (Sunday) went in a blur, various checks and all was going well.  Matt’s mum, dad and nan all came to visit us, and it was lovely for them to meet their latest grandson. Matt went home to catch up on some sleep and Isaac and I watched Netflix! (he would only sleep on me).

On Monday I was delighted that Wendy was able to take a break in her shift and visit us. It was so nice seeing her, she has been with me at every step of this journey. She is such an amazingly kind person, and I feel really really blessed to have her in my life now.  She will always be Isaac’s “aunty Wendy”.

Then jaundice hit! The first six hours under the lamp in the afternoon went well, and it didn’t seem to bother him. During this time we had a visit from the lovely Jacqui Tingle, she was brilliant – Isaac decided at that moment to be sick everywhere! She helped me clean it all up and has such a calming presence.

Matt went home to pick Dylan up, as we really wanted to keep things as normal as possible for him. My parents came to visit, Mum armed with various gifts for Isaac and me, and it was lovely hearing what Dylan had been up to for the last couple of days. Unfortunately the same calmness  under the light was not apparent for the second session of eight hours. He WOULD NOT settle. Poor like thing just wanted to feed or cuddle. There was an AMAZING transitional care nurse – called Sheena – who basically spent her entire shift with me trying various ways to settle him. At one point I was even just in my pants sitting in a chair with the blue light shining down on us whilst I fed Isaac – me covering my eyes with a sleep mask. At 4am I was at my wits end, but he was finally allowed out from under the light, the lovely Sheena took him for a couple of hours so I could get some much needed sleep.

On the Tuesday morning I saw a Dr and she said we could both go home. The relief was overwhelming. I just wanted to see Dylan, and let him meet his little brother.

I will be forever grateful to the midwifes, Drs and nurses at the RSCH. I can not fault the staff – they work so hard, such long hours, and never complain. I am sure I was a pain in the bum at various points, but they were always so kind. I am in NO DOUBT that it is due to their speed at getting Isaac out that saved his life. That at the work that Kicks Count do in making sure mums are aware of their babies movements.

As I said at the beginning, if any mums to be are reading this, LISTEN to your body, don’t worry about being neurotic or bothering people with questions etc, do what you have to do to keep your bump safe. If I hadn’t listened to my body, and trusted my instincts, Isaac would be another one of my babies to not take a breath, and another missing piece of the Owen family puzzle.

I would like to thank all my family and friends, especially my wonderful husband, my parents, my sister and my bestie Katy Pelling White –  who have really be my rocks during the journey for number two over the last two years. They have dealt with all the lows, and I know they are delighted for me now we have finally got our “high”. I couldn’t have done it without them.

I will continue to blog, moving from our journey to complete our family, to the both the good times and the hard times of being a mum raising two boys, so I hope you will all stay with me 🙂

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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!!!

 

 

 

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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?!

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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

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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.

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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….