Nicole: 2012

For some, 2012 will have been an amazing year.  We're told all the time, through the media, how it was an exceptional year for Britain.  The Olympics, the Jubilee - it felt like the whole nation spent the summer celebrating and the rest of the year basking in it's reflected glory.

My husband recently took part in a project for our local news.  Called '100 Faces' it asked people to write in saying why 2012 was memorable for them.  My husband chose to write about the adventures we've been having this year - our 'Marvellous Macho's Year of New Things' that's seen us doing new things in memory of our son and blogging about them.  He was chosen to take part and was included as one of 100 people with a line in a song created for the project.  Seeing him deliver the line 'We tried to keep the memory of our stillborn child alive' was a very proud moment for me.  The song as a whole made me really think about what this year has meant to different people.  How one year can be the worst, or best - or something in between - in someones life.

For me, 2012 will be the most difficult year of my life.  For those of you who know I lost my son the year before - in 2011 - this may come as a surprise.  But, you see, 2011 was wonderful for eight and a half months.  I was overjoyed to be pregnant, after 3 years of trying.  We had our 12 week scan in the January and after that the year flew by, full of joy and anticipation.  On 15th August it all changed when we were told that our son - nearly 2 weeks overdue by that point - had died.  What followed - his birth, his funeral, registering his death - all took place in a blur of disbelief and shock.  I honestly think shock is created to shield you from what's happening - even visiting him in the funeral home I felt detached, like it couldn't be my son in the coffin, and later, that it wasn't his ashes we collected.  After the shock started to wear off, those last few months of 2011 were so full of overwhelming, all-consuming, gut-wrenching grief.  Grief where you feel you might actually die from it.  Grief I can't really describe to people who haven't been through it.

So, why was 2012 the worst year of my life?  Because what's left, after the massive tidal wave of grief, is the devastation, the destruction.  It's the trying to rebuild your life, the repairs you need to make to your emotional and physical well-being.  It's the little waves that continue to knock you - things that you would have withstood without issue before - that now knock you down, you're so bruised and battered.  It's the getting back to work, the trying to fill your spare time.  It's the trying not to think about the silence of your house, about how things might have been.  It's the thought that others have moved on, that your baby might be forgotten, or that others might think you've forgotten him.  It's the trying to keep his memory alive; the new things in his memory, the lanterns, the candles, the names in the sand.  It's the crippling realisation, and later, acceptance, that no matter what happens - the good things, the happy times, the little wins and the big ones - are all done without your child.  Forever.  For as long as you live.

As I look to 2013 I am lucky enough to have a delicate but growing sense of hope.  Time, as well as the new little life that kicks away inside me, have given me that.  But 2012 will always be the year we had to come to terms with life without our son.  When we had to make room in our lives for long-term grief, and to find ways of keeping our son with us always.  I hope that those of you reading this have a gentle and peaceful new year. xx

Julz: First Heavenly Christmas

Dear Melody,

As mummy and daddy sit watching your big brother and sister be amazed by their delivery of new pjs from the elf, I wonder which pjs the elves would have brought you. Would they have been pink? Or the standard Christmas ones, ready to dress you in a snowman themed sleep-suit.

Imagining you trying to tear down all the baubles at the bottom of the tree, as the top of the tree became heavy with the decorations we would have moved out of your reach.

I wonder would you have been crawling yet, poking at the few presents under the tree, your big brother and sister getting irate because you can’t quite understand the word “NO!”

We would be trying to figure out how to keep you asleep so Father Christmas could deliver all 3 sets of parcels without you seeing him.

Then there is the day it self…. tomorrow, Christmas Day; trying to point you in the direction of your presents, so your brother and sister can open theirs without little fingers piercing holes in their presents. But being 10 months old on boxing day you wouldn’t understand the difference between the toy and the paper, the paper would be far more interesting.

Lunchtime you would be discovering your first taste of sprouts, do you eat it or play with this little green ball, sat staring at you next to the carrots which, I think, you would have loved.

You would have had a naughty mouthful of cream, but I can imagine you could have stamped your feet at not having more!! You feisty little thing!

You would have spent the rest of the day surrounded in cardboard boxes with the occasional “nos”, or “Mummy, Melody’s playing with my toys!!”

But instead you are resting your head in the clouds, making sure you’re watching your brother and sister having an amazing day. Making sure me and daddy have a glint of a smile on our faces, as I know you don’t like us sad.

I know you have company where ever you may be, but it truly isn’t the same, sending a balloon and lantern lighting a candle, is not the same.

I wish is a phrase I think I will use forever, a wish I know that will never come true.

I hope your beautiful eyes are healed and I’m sure they light up the skies.

We love you Melody Caitlyn. Merry first Christmas Sweetheart.

Lots of love and floaty kisses,

Mummy and Daddy

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

(one for every day you were here)

Mark: Christmas 2012

Another Christmas, eh? Where does the time go? Last year, it was very obvious how we were going to feel. It should have been our first Christmas with our son, and instead there we were, huddled by his grave letting go of a balloon and hoping that somewhere, somehow he'd grab it and raise a giggle.

How are we going to feel this year? How are we supposed to feel? It's a lot tougher question to answer.

We're thrilled to have young Iris with us, delighted our families will have the chance to spoil and cherish her as is only right and proper. She's been and will continue to be exactly what it said on the tin - a precious Rainbow baby who has given us a reason to live and laugh again.

And yet how can Christmas not be bittersweet? I was putting together a stocking for her earlier today, smiling at the glorious stupidity of wrapping presents that I myself will be opening come Christmas morning. And then I wondered whether, had things gone differently, the wee man would have been able to make sense of it all this year. What would we have given him? What would he have said? Maybe nothing, probably nothing, but still you can't help but wonder, imagine, fill in the eternal blanks.

That's kind of how it is for us now. You feel guilty for enjoying your living child, for even momentarily "forgetting" the dead one. Then you feel guilty for obsessing about the one that's not there when you've an equally precious gift sitting there smiling up at you.

Perhaps that's just how it's going be. I read a blog the other day. It said that when a child dies, it's not instantaneous; a little bit of them, and you, dies every day for ever more. It's a loss that reveals itself in everything that they, and you, miss out on.

But then there's Iris. Surprising us every day with stuff we never knew was there to be enjoyed. We don't want her to live her life for him. She's her own person with her own story. It's not her fault that she's a reminder as well as an inspiration.

Maybe there's no such thing as complete happiness in life. Maybe you're only aware of having had it, or at least an approximation, when it's ripped from you and gone forever.

It's hard to envisage ever again describing ourselves as "happy" at least in the bland, generic sense. That would feel like a betrayal. But after the storm, even if your house has been washed away and you're standing there soaked to the bone, can you still look up and enjoy the rainbow? Of course you can. They go together, like brother and sister.

Happy Christmas, kids. Your daddy loves you both, up to the moon and back.

Gemma: A grief soaked Christmas

Christmas is a time of love great joy and celebration in my family; we have long followed in the Christmas traditions and enjoyed so much food our bellies ache and played cards games and board games late into the night while drinking cheap bucks fizz and enjoying the close unit of our family. From time to time over the years my family members have missed Christmas day as we have tried to do individual things; it never lasts. There is no Christmas like our family Christmas and we find that instead of getting smaller the family grows at Christmas time as we will each invite someone to share in the warmth of our family. While occasionally family members are missing briefly we are always certain that it won’t last and next year they will be at home for Christmas.

Two years ago Christmas was forever changed for me, I had a secret and Isaac was on board. Two years ago amidst the laughter and smiles of our shared family love I announced that we would have a third generation to spend Christmas with us next year; gather round for the family picture and say something new “Gemma’s pregnant” my family echoed and then I waited, and waited and finally the words registered and a burst of delight rippled across my family.

It was the happiest day of my life; Christmas would become bigger and better as my parents walked in the shoes of grandparents and my siblings became Aunties and Uncles, I would be a mother and spend Christmas in a rush of present buying and keeping my child away from the tree, the lights and watch amused as they spent most of the day playing with the paper and boxes that the expensive presents arrived in; just as I had done as a child.

I was in a bubble, I can remember that Christmas day like it is yesterday down to tiny minute details of the day and yet it seems to be a dream as the bubble burst and I fell hard and I have never recovered from the fall; I’m not sure I ever really will.

Last Christmas was my first Christmas without Isaac but I was still carefully numb so while I was there and the day passed I was still shut down; carefully closed to the painful truth that Isaac was missing. I had not realised last year that he was gone forever; I was so set on getting through one event at a time, after Christmas I had lots more firsts to work through :- first new year, first date of loss, so I was focused on getting through, on grieving in the very best way that I could.

This year is different; and I think that it is worse for me. I should be approaching 20 weeks pregnant with my second child, a bright 18 month old at my feet keeping me moving and tired and excited about Christmas. Instead I am still recovering from an early miscarriage that happened over 10 weeks ago, physically I am still bleeding which has left me run down and exhausted which adds to my emotional vulnerability that Christmas was already going to bring, mentally I have had to accept the loss of a second little star and accept the loss and absence of Isaac all over again; a friend told me that the second year was better in some ways but for her harder in others because you have done all of the firsts and have to accept that they are forever missing from your lives. 

This Christmas I am trapped in the shadow of a life I used to know; I have neither moved forwards with the tentative steps my second pregnancy should have bought and I cannot go back to the life I had before Isaac.

 I find it strange how much I can miss someone who was never physically here in my day to day life and yet I find the absence of him all the more strongly for the silence; I have decorated a tree for Isaac and instead of the joyful struggle I imagine that it would have been with Isaac instead each decoration I placed on the tree hurt, I cried through the decoration of my tree and his little tree just as I have cried each day since that has passed. I look at his picture and imagine what he would have looked like and what he would have sounded like; and I have decorated the tree for him in case he can look down and see. We have bought gifts for him for Christmas, unlike last year we have not wrapped these as those gifts remain wrapped in his memory box where we were unable to bring ourselves to open them without him.  We have learned and bought practical gifts for his baby garden that we placed straight out, my husband is glad I found something that I liked for his garden he knows how sad I am this time of year and how much sadder I would have been had I been unable to buy him a gift. 

They tell me that perhaps Isaac chose us as his parents and I hope that he can see how much he is still loved and I try to understand the lessons he was sent to teach me. For him I can laugh and still enjoy some of the cheer of Christmas and yet there are also quiet moments of reflection where I think of him and my heart is still broken, private moments where I know his Daddy thinks of him. I think if I could have chosen a family I would have chosen mine, and I would have chosen Christmas time to be a part of it.

Christmas is still a time of love great joy and celebration in my family, I have wonderful memories that Isaac left me of that Christmas day and I am grateful to him for those, but Christmas it also a time for quiet mourning for me on the little life that made such an impact on my heart.

Merry Christmas Isaac, Mummy loves you each and every moment that my heart beats and I will think about your star shining brightly on Christmas day and the happiness you bought us., I hope one day we can celebrate a Christmas with your brother or sister’s laughter filling the day and knowing that they are safely watched over by you as you do with us xxx

Thinking of Our Little Ones

Just wanted to share our inspiration for setting up this shared blog after writing their names in the snow today xx

Thinking of all the little ones whose stories have been shared on the blog and, of course, their families. Christmas is such a difficult time of year for us all xx

Clara: When loss keeps on happening...

At the moment, I am waiting to miscarry. My fifth pregnancy, my fifth child... yet still no living children.

All was going well. Various early scans had shown a little bean, with a heartbeat, developing well. A scan at 11 weeks on Tuesday showed the heartbeat had stopped. This has been so completely unexpected and I feel completely numb. If anything, I expected the bad news to come as we approached 20 weeks and beyond. I have been taking all my myriad of medications, focusing on getting to that point and then taking it from there.

Since finding out we were pregnant again, I have injected myself with heparin over 100 times. I have taken over 200 steroid tablets as well as the daily aspirin tablets. I have had two intralipid infusions. Folic acid tablets, vitamin D tablets, pregnancy multi-vitamins. All to no avail.

We do not yet know if the condition that took Molly and Grace from us (massive perivillous fibrinoid deposition) is responsible for this loss also. My placenta will need to be sent away for testing. If this condition is found again, we have nowhere else to go. This treatment plan was our last hope.

If the loss of this fifth much-wanted baby is just ‘one of those things’, I still do not know where to go from here. I just don’t know if I can cope with being pregnant again. My body needs a break. In the past 28 months, I have spent 18 of them pregnant with absolutely nothing to show for it, except a gravestone commemorating two little girls and a shattered heart.

A very close friend with the same condition lost her 4th child last week. She has 4 children in Heaven now and, like me, has no living children. I have 5 children in Heaven now. It’s too much, it’s unfair to expect so much of one bereaved mummy. As this friend has said, we are a medical mystery. Despite the advances in modern medicine, we are a rarity and people don’t really know what to do with us. Our children are perfect but our immune systems are letting them down.

I just don’t know where to go from here. My heart has shattered. I feel I have let everyone down... again. It’s just horrendous.

You can read more about my journey here: Clara- My Story

You can read more about my condition here: Clara- Massive Perivillous Fibrinoid Deposition

Update Feb 2013: Placental tests came back to show that MPFD had returned with a  vengeance despite the extensive treatment plan. So this does not work for us. Where do we go from here? We just don't know.

Sarah: The Story of Our Premature Twins

Our story begins on the 20th July 2012. I was 28 weeks pregnant with my twin girls. I had been getting regular pains all day at work (my last day!), but they were not too bad, so assumed that they were Braxton Hicks. In the evening these pains got worse, so I decided to call the labour ward, who advised us to come in to be checked. I had not yet packed my hospital bag, so was madly trying to chuck what I thought I might need in a bag just in case (it was my plan to pack my hospital bag that weekend ironically!). We got to the labour ward and were shown almost straight away into a room. I was connected up to the fetal heart rate monitor where we could hear two healthy heart beats.

I was then examined by one of the midwives, who, to my surprise told us that I was in fact 3cms dilated, with waters that were just about to burst, and the chances were that my girls would be arriving in the not too distant future. I was then put on a drip to slow down contractions and given the first of 2 steroid injections (to help strengthen babies lungs).

At this point it was quite late, so my husband decided to go home for a rest. I continued to have contractions every 5-10 minutes throughout the night, using gas and air as my pain relief. I was then given a second steroid injection twelve hours after the first. Laurie Gatehouse came down from the Neonatal Unit and talked us through what was likely to happen when my twins were born. We were told that I would need a caesarean section due to twin one (Grace) being breech.

At around 4pm on Saturday 21st July, my contractions seemed to get more intense and painful. I was examined and found to be 10cm dilated. Everything then happened in a bit of a blur, I remember Drs and midwives prepping me for surgery. It was very rushed and rather scary! But necessary due to the fact that I was getting the urge to push, which with a breech baby could cause a lot of problems!

After being given a spinal block, twin one (Grace) was born at 18:06 and twin two (Isla) was born at 18:11 using forceps, as she was stuck high up under my ribs! I was told that my early labour had possibly been caused by Isla’s placenta being infected, so the surgeons spent a long time cleaning me up, and all three of us were then given strong antibiotics.

When they were born, Grace needed to be fully resuscitated (scary!) but Isla was managing to breathe by herself. They were both stabilised in the operating theatre, by two teams (one for each baby) of Drs and Neo natal nurses. Once stable, we got a quick glimpse of them, as they were wheeled past us to make their way to the Neonatal unit. We were then told that the nurses would contact us as soon as the girls were settled. This took a few hours, but eventually my husband was allowed to go and visit our daughters (I was bed bound due to the Caesarean, and pretty dosed up on painkillers). My husband returned with a photo of the girls taken by the nurses.

Grace

Isla

I finally got to meet my babies the next morning, but wasn’t able to hold them until they were 5 days old.

The girls settled really well, and I got down to trying to produce some colostrum for them. After much boob squeezing from both my husband and I, I started to produce colostrum. The process of collecting this was very time consuming! I would be squeezing it out, while my husband sucked it up with a 1ml syringe and then took it down to the neonatal unit for the nurses to share between the girls. After 3 days the real milk came in and I was an emotional hormonal wreck! I just sat on my bed and cried, and when asked what was wrong, I replied “I don’t know!” I was told this is perfectly normal.

After a week or so, the girls were doing really well and were really stable, so they were transferred from the “hot room” (more intensive care) into the nursery. They continued to do well for the next week, both were on optiflow, which uses water vapours to push oxygen into their nasal prongs, making it easier to breathe. Unfortunately they both developed a chest infection, so were put on antibiotics to treat them. Little did we know, things were about to get a lot worse very quickly.

On the evening of the 1st of August, we received a phone call to say that Isla was not doing so well, and had been moved back into the hot room so that she could have a closer eye kept on her. We went in to see her, she looked asleep and settled so we weren’t too worried, so we went home to bed. We then received another phone call to tell us that she had had to go back onto the C-pap , which maintains continuous positive airway pressure in the lungs. We were told to rest, and they would contact us if there were any changes. We then received a phone call at 6am on 2nd August, telling us that Isla was now on a ventilator, and would need to be transferred to a different hospital as they suspected she had Necrotising Enterocolitis (NEC) and may need surgery.

NEC is a gastrointestinal disease which typically affects premature babies. The disease creates both an infection and inflammation in the bowels. The treatment ranges from stopping milk feeds and giving antibiotics, to surgery to remove the infected gut. Unfortunately Isla had an extremely severe form of NEC.

We waited all day to find out where Isla would be transferred to (we were told it could be Oxford JR, Great Ormond Street or Addenbrookes). Finally at around 6pm on the 2nd August, Addenbrooks contacted MKGH to inform them they had a bed for Isla. A transport team were then dispatched from Oxford (where they are based) and they made their way to MK to stabilise Isla for her journey. This took quite a while as they wanted to get a long line in, to make it easier to administer drugs during the journey.

Isla waiting for a bed in another hospital

Isla being transported in a very high tech transport incubator!

We then had to make the decision to leave Grace in MK (still suffering from a chest infection but otherwise stable) and make our way to be with our critically ill daughter in Addenbrookes. When we arrived, the surgeon spoke to us straight away, and told us that she would most likely need surgery to remove the infected parts of her gut. We were told that if they could, they would wait until morning, but if necessary they would have to operate overnight. We were then given a room just down the corridor for the night, where we tried to get some sleep (note the word tried!!) we did not receive any knocks on the door throughout the night, which was a relief!

When we got up in the morning we were informed that Isla would be going down to surgery, and that they were waiting for blood and platelets for her. She was then taken down to theatre, where they operated on her for around 3 hours (it felt like a lifetime!). When she returned, the surgeon informed us that he had had to remove a lot of damaged gut, and what he had left in there did not look great, but if he had removed any more she would have been left with short gut syndrome. We were told that our daughter was extremely sick and the next 48 hours were crucial. We got through the first 24 hours and were told that Isla’s kidneys were not working, which meant there was no urine output and she was swelling up due to fluid retention. It was then suggested that we have a naming ceremony for her, so the nurses contacted the hospital chaplain who performed a wonderful ceremony with all our family around her incubator (except for Grace of course who was doing well back in MK).

After a few days, we finally started getting wet nappies (we were so relieved we even took a photo!). Isla seemed to improve gradually, but seemed to be blocking her ventilator quite a lot. It turned out that this was because she was having fits, and now had a bleed on her brain. We were told that there was no way of telling how much damage this bleed would cause, but there would certainly be some kind of mobility problem for her down one side, due to where the bleed was.

We continued to hope and pray that she would keep fighting and would pull through. Finally on the morning of Thursday 9th August we had a knock on our bedroom door to tell us to come quick. Isla had blocked her ventilator and was being resuscitated. This was successful and she was then made stable again, until a couple of hours later when she did the same thing again. Her consultant looked at us and told us that this would probably keep happening and it was now up to us to decide if we wanted to withdraw her life support. We looked at each other and we knew that this was the end of her fight. We made the decision to turn off her ventilator after one last cuddle with both of us. Isla was disconnected from all her machines (apart from one drip containing morphine to keep her comfortable) and she sadly passed away in our arms, aged 19 days old. Although heart breaking, we felt a strange sense of relief, knowing that our baby was no longer suffering and in pain. Isla’s consultant informed us that her blocking her ventilator was her way of telling us she had had enough.

We had our last cuddles with our daughter and I carried her down to the morgue. We then packed up all our things and made our way back to MKGH where the wonderful nurses had screened off an area by Grace’s incubator for us to have some privacy and to be able to grieve for our daughter. It was very emotional, but seeing Grace helped to keep us strong and realise we had to keep on going for her.

During our week away with Isla, Grace had come on in leaps and bounds and was now wearing clothes and making her first noises!

Grace wearing her first item of clothing!

Grace continued to get stronger and we found that visiting her was really helping with our grief for her sister.

She started to make sucking actions, so I started to put her to the breast while being fed through her NG tube sometimes, so she would associate this with feeling full and eventually latch on. She started to show an interest in the breast but struggled to latch on due to her mouth still being so tiny. I decided to try nipple shields, which were a hit, and on the last day of August, Grace finally had her first feed from me (a lovely end to a terrible month).

Grace was then having 3 hourly feeds, every other feed she was put to the breast so as not to wear her out too much. When I was not there during the night, she was offered either a cup or a bottle of expressed milk. When Grace was successfully taking every other feed either from breast or bottle, she was then moved onto 4 hourly feeds, of which every feed would be breast or bottle with an NG top up if needed. She took a week or so to get used to having to work for her food, but something finally clicked, and we started to hear talk of going home! As Grace was still on oxygen, she was connected up to a downloadable sats monitor, which the community nurses (the nurses that visit when you are at home if you are on home oxygen) assessed and decided how much oxygen she would need to come home with. The oxygen was ordered and delivered the next day and on the weekend of 22nd September we stayed at the hospital for two nights (to get us used to having a baby to get up to in the night and have the support from the nurses if we needed it).

Finally, after a 64 day stay in NNU, Grace came home on Monday 24th September. Two weeks before the twins due date.

Bringing one baby home when you are expecting to bring home two was hard emotionally, but knowing that Grace is getting that much stronger every day has kept us going, and although I still re-live the week we lost Isla and I still cry for her, I know that Grace needs her mummy and daddy to be strong for her. We will celebrate Isla’s life every year on the day that we lost her and we will bring Grace up knowing that she is a twin, and if she ever wants to know, we will tell her the story of how her sister fought so so hard for her life.

Here is Grace aged 15 weeks (3 weeks corrected age) still thriving and getting bigger and stronger by the day.

Katy: Two Little Boys - Oliver & Matthew's Story

I met my husband Chris at salsa classes 5 years ago. We got married in April 2011 and decided we were going to spend the rest of the year doing things we really wanted to do before we had a baby! We went on an all out luxury honeymoon to the Far East, travelled around India by train, moved house and upgraded our totally battered old car. When Christmas came we felt we were ready to try and start our own little family. I was just starting to worry after our 5^th cycle of trying to conceive when shortly after our first wedding anniversary I got the elusive BFP - we were thrilled and so excited.

At the end of July came our first BIG surprise. I was massively worried about the 12 week scan as my close friend had had a missed miscarriage. So, when the sonographer said “Ahhh OK,” I convinced myself something was up until she turned round the screen and said “Well there's your baby..and there's the other one!” TWINS! We were totally shocked but really pleased. I was 29, Hubbie 32 ,no history of twins in either family, no fertility treatment, all in all no risk factors for twins. We told all our family the news that weekend. Everyone was ecstatic. A week later we saw the consultant who reassured us that they were DCDA twins (the lowest risk type).

My pregnancy was pretty text book and our 20 week scan showed 2 perfectly formed babies kicking each other! The only real problem I had was that I got very huge, very quickly, I'm naturally quite skinny so it really showed. I started to struggle with back pain and had to go for phsyio (off a gorgeous Irish guy unfortunately!) By 24 weeks I measured 35 and had put on 2 ½ stone, more or less only on my bump.

Therefore I didn't worry too much when after a busy day pram shopping at 24 weeks I started to get a crampy pain in my back. It wasn't dreadful but it was nagging and on Monday morning I rang maternity assessment to get it checked out as I had a busy day at work. They said that all sounded fine, that I wasn't leaking fluid or bleeding and the babies were still moving but If I wanted to come in for reassurance then I could. So I did feeling like a paranoid first time mother! Once there all looked fine, the midwives were all ready to send me home or rather back to work for an afternoon of teaching 8 year olds PE (!) but as a matter of procedure a Dr came in to check me out. This was then I was found to be 3cm dilated... then everything went crazy.

The hospital I was booked in to had Special Care but now NICU so I was put in an ambulance (blue lights sirens the whole lot) to go to the nearest place with 2 NICU cots that was about 40 miles away. I still felt O.K, everyone had told me labour was really painful, this couldn't possible be it, I was given drugs to stop the contractions with a view to having a rescue cervical stitch put in but they didn't work (I have since found out from my parents who are both Drs that these drugs have a very low success rate).

After a scarily short labour (with 15 medics in the room not what I had ever imagined!) Oliver Thomas (1lb8oz) and his younger brother Matthew Daniel (1lb9oz) arrived in to this world kicking and screaming, surprisingly loudly, at 8:55 and 9:16pm- They were perfect, I instantly fell in love with them and I glanced across the room to see them being taken over to the NICU.

I visited them twice that night, they were bigger than I thought they'd be and over the next few days they remained stable. I spent almost all day and night going from incubator to incubator. Their odds of survival were never great at around 25% but they made small amounts of progress. They were able to be feed  on my breast milk through a tube, have little cuddles in their incubators and hold our fingers. Their brain scans and blood tests all came back clear. They each had their own little personalities. Matthew was more chilled and Oliver a lot more boisterous!  The staff there were all amazing. My father in law used to be a neonatal- paediatrician and was so impressed by the standard of care which was really reassuring.

On day 5, Matthew took a sudden turn for the worse, his tummy swelled and he lost his colour, he was diagnosed with necrotising enterocolitis (a disease of the bowel common and often deadly in premmie babies) He was immediately put on high strength antibiotics and the head consultant rushed in from home. Despite the best attempts of the medical team he was taken off his ventilator in the early hours. We held him as he passed away and told him how much we loved him. He looked so peaceful as we gave him a wash, dressed him in some new clothes and tucked him up in a Moses basket.

The next morning and Oliver was still doing O.K but the staff were slightly worried as his temperature was varying slightly, as a precaution he was started on antibiotics and transferred to another hospital where they can operate on tiny babies with NEC. Sadly he got worse very quickly and that evening they had to operate. 

We followed his incubator down to the theatre where we told him what was happening and he squeezed my finger- It was as if he already knew. We waited for the longest hour of my life until the surgeon came out and said he had tried his best but that it wasn't enough.

Less than 24 hours after we said goodbye to his brother we said good bye to Oliver and gave him the same respectful death as we gave Matthew. Then all his grandparents came in and gave him a goodbye cuddle. Without his wires in he looked just like his Daddy.

I wanted to tell my boys story for a few reasons-

Firstly to highlight the risks of multiple pregnancy. So far they think they were premature just because they were twins. That I was carrying around the same amount of extra weight as a woman at term, that my body was tricked in to thinking it was time they were out and my cervix gave way. They were perfectly formed and big for dates. I'm fit and healthy and had no sign of any medical condition. If you are, or know someone who is carrying more than one.. make sure that you listen to your body extra carefully.

 I also wanted to say how hard it is being a mum of multiples on a neonatal unit. I still wonder if I spent the same amount of time at each incubator, did I hold them the same amount of times? It was very hard after Matthew had died walking past the incubator he had been in to see Oliver and stay strong for him. As well as the guilt of feeling that I have let them and everyone around me down I also have the guilt this brings with it.

But most of all I wanted to tell the story of my gorgeous sons and how, even for just a short week, they brightened my life and the lives of all those around them.  

Sleep tight my handsome chaps!

Lisa: Do you have any children?

This post comes from Lisa's blog Dear Finley. Thanks to Lisa for allowing us to publish this here also…

When your child has died, sometimes even the most ordinary of circumstances can cause an ache in your heart like no other.

Imagine - you're the new wife at coffee morning, the new person in the office, joining a gym or a club, anything in which you would encounter people that you've never met before, but in which you would be required to socialise.

My name is Jane, what's yours?

Nice to meet you Lisa.

Oh you have an interesting accent, where are you from?

How come you moved to England of all places from somewhere as amazing as Canada?

Are you married?

Do you have any children?

And there it is. The awkward question that makes any mother whose child has died stop in her tracks. It is only natural that people ask this question, I used to ask it all of the time without a thought.

It never would have crossed my mind that the answer could be causing an internal struggle for the one who would have to answer.

But a struggle is what it is.

Normally, the person asking is going for light conversation, and therefore to hear a heart-wrenching story about how your child died is not what was expected.

But as the parent, you feel like you want to be honest - to share your child and be proud of your child, like any other parent in the world.

It really is a dilemma and I usually consider who my audience is before answering.

If it is somebody I'm not likely to ever meet again, I might just say 'no' and leave it at that. It's easier not to have the looks of pity and the stammering as the one on the receiving end of the story doesn't know what to say. But saying no leaves me so full of guilt, as though I'm denying that my son ever existed. As though I'm denying that my heart yearns for him every second of every day. I find myself apologising to him in my head for not being strong enough.

On the other hand, if I'm speaking to somebody who I will be likely to meet again, who will likely get to know me over time, I try to be honest. I will probably say something along the lines of 'I have a sone but he passed away.' This usually leads to me having to tell my story, and depending how I will at the time will depend on how much I elaborate on what happened.

As a mother, I hate that I have to make a decision about whether or not to talk about my son. But as a bereaved mother, I find that this is all a part of my new normal. A normal that I wasn't aware of before but that I will now never escape.

If you are a bereaved parent, how do you answer the question 'Do you have any children?' or 'How many children do you have?'

Nicole: To Carry a Rainbow

As I write this I'm currently just over 21 weeks pregnant.  I can feel my baby moving about inside my tummy.  It's magical, and amazing, but it's also the most terrified I've ever been in my life.  Since losing my son I've discovered these miraculous babies who are conceived after loss are often referred to as 'rainbow babies'.  I have read that they are called this because 'the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of colour, energy and hope'. 

This is the perfect description in my view.  This baby does not negate the loss of our son.  We still miss him, every single day.  Sometimes the joy I feel about this baby is immediately followed by sadness for the loss of my son.  This doesn't mean I don't love this baby as much, or want it as much, just that my sadness about the loss of Xander remains, and always will.  I think this might be difficult for some people to understand, but it won't seem strange to other bereaved mums at all.  I can feel extreme grief and sadness about the loss of my son, as well as my love for him, whilst still feeling joy, excitement and yes, even hope, for this baby.  Just like parents who are lucky enough to never lose a child don't love their second or third children less than the first.  There's no limit to how much you can love - your heart expands to include them all.

I don't know what will happen with this baby - will he/she be safe? Will I bring him/her home this time?  Will they grow up to be happy, healthy adults? The trouble is, we just don't know.  I know - no one ever knows.  But with a rainbow baby the fear is always there.  Xander died despite being healthy, and so much could go wrong with this one too.  I get bursts of positivity, but I also live with anxiety every day.  Of course it's worth the anxiety, worth the risk.  The chance for me to have a living child, though it seems remote and hard for me to believe at the moment, is worth the fear.

I love this baby already.  I love them like I loved their brother.  And if the fear, and worry, is what I have to go through then I will.  When I feel hope and excitement, I'll embrace it, and appreciate it.  But the fear will always be there.  As I keep saying to my rainbow - stay safe, baby, stay safe xxx

M: On this day last year...

It's Bonfire Night 2012. This time last year it was a Saturday and my best friend and her husband had just come to stay with us for the night. When they arrived I was waddling round the kitchen with my nearly 30 week bump, making a pan full of toffee. I'd collected up the apple harvest from our tiny apple tree, and it turned out the ridiculous inch wide apples made for perfect toffee apples. I think my other half had made a chilli, whatever it was we scoffed bowls full of it before heading out. The exact order of things that night is a bit fuzzy, but we had a trip down to a local pub where some daft friends had pockets rammed with fireworks and were having a great time sneaking about behind the pub setting them off. We snuck around the town like kids with the bags of fireworks we'd bought, finding spots big enough to let them off as we couldn't fit them into our tiny garden. I broke the habit of my pregnancy and had a whole half of Belgian beer, which tasted gorgeous. I proudly wore an over tight top showing off my wonderful bump to the world. This was to be the last time we'd see my best friend before we were all grown ups – before we were parents and they were honorary aunt and uncle – so we were loving our childish fun. We just had a fabulous night.

Our local football club had a fireworks display, which we walked down to watch. I remember so distinctly cuddling my bump as the fireworks went off and we chomped toffee apples. By this time we knew that our baby had a very poorly heart. Our best case scenario for the next year was that he'd make it to 9 months or so before having the operation to save him, which itself had a hefty chance of killing him. As I watched the fireworks and he jiggled around at the bangs and the tasty toffee I wondered if he'd be around to see his first bonfire night outside next year. Maybe we'd be by his side in hospital, maybe he'd be better by then and sitting right here with us watching the fireworks with wide little eyes in which I'd see the reflections of the fireworks, or maybe he wouldn't have made it through his operation. I was pleased that he was getting the bonfire night he might not get to see next year, but I secretly shed a small tear under the cover of the dark.

What I never imagined is that 7 weeks later we'd find he'd passed away before they ever got a chance to mend him, before we'd even had the chance to meet him, or just once to see those twinkling little eyes.

Tonight is bonfire night, my partner and I will be off to watch the same firework display in a few hours. I am so grateful for the memories I have of last bonfire night, the one we got to spend with our little boy. This year we'll be on our own, except for the happy little presence that will always be with us, sitting on our shoulders and giggling.

Louise: What not to say or do...

This post comes from Louise's blog Team Lloyd. Thanks to Louise for allowing us to publish this here also...

I have over the course of the last couple of months made light references to some inappropriate ways that people have spoken to or behaved to Daddy Lloyd and I since Harry Lloyd was stillborn, the problem being that these have in no way been taking lightly by us. In fact the thoughtless acts have caused so much more hurt and pain it has made dealing with our terrible loss even harder. It makes us question ourselves, each other and who we can call our friends and family.

I have in moments of anger, anguish and turmoil turned to this space to be able to type out my feelings and it does in some small way help me understand how I am feeling. I guess understand is maybe not quite the right definition. It allows me to give voice to a part of me that is unable to speak up for itself at the moment.

I have been drafting this post for weeks now and to be completely true to myself I think it’s time to publish it. In some small way it may help me to not be so polite to these people when things are said that upset or hurt us. And when I say polite, I mean that when insensitive things have been said or asked I have found myself to either actually answer the question, defend myself, or have to justify why I am still not over, turned any corners, getting on with, or moving on from the loss of my son.

Through my career as a nurse I have been sent on many training courses which have focused on how to talk to parents going through a bereavement, through tragic circumstances and/or the time it takes to process this and the journey that an individuals grief may take. I remember being sat in a classroom and thinking to myself, how can people not know instinctively what to say. Surely you can just imagine yourself in that situation, know how you would feel and speak appropriately from your own emotions and if you can’t do that tell people how sorry you are, how you just don’t think you have the words. From my previous experience parents have always appreciated the honesty.

It is therefore shocking to be on the other side of this now, we are suddenly “The Parents” that have suffered the loss. It’s even more shocking to realise that people can say some of the most hurtful things whether they intended them or not. What is more frightening is if someone has made a mistake in how to say or show us their sorrow that they then have either needed us to point out how that act has made us crumble into waves of grief or they haven’t even realised how inappropriate and insensitive they have been even when it has been pointed out to them.  So incase you ever find yourself in this situation where you are not sure what to say to a friend, a colleague, a patient, a client, a sister, a brother, a daughter, a son, a mother, or a father then please try your upmost not to say these because the recipient may not be as nice as I have been up to now.

1) “I am here to do the horrible bit – you know the heal prick test” Yes it really happened. A midwife came into our house just days after Harry was stillborn carrying scales and telling us she was here to perform the heal prick test. We literally had no words.

2) “The labour? It can’t have been as painful as a real labour can it? I mean like the contractions you get if you have a full term labour” Scarily I actually started to answer this question, with my heart on my sleeve I tried to justify that my labour was very much as real as anyones.

3) “Are you still upset about that?” Yes. Yes I am still devastated and no we don’t know when this grief will end. If it ever will.

4) “It’s best I don’t see you right now because I’m heavily pregnant” If you are pregnant considering our feelings is great, it really is. But please be consistent don’t use this as a reason not to upset us then send an invite to meet up a day and a half later. We are likely to still be upset.

5) “You must have turned a corner by now?” Really? Are you the judge of how we must be feeling now, is there a limit on our grief? Is there a timeframe that you have in your head that we must conform too?

6) “Are you going to try again?” I can, to be honest even start to understand why this is asked, but honestly its a bit like asking a post partum mum “when are you going to have sex again?” – You wouldn’t would you because it’s so personal. Having to answer this question has made me cry, I honestly do not know and it’s far to early for us to even be able to start thinking about it.

7) “Was it because you had an amniocentesis?” Why because if we did it would be our fault we lost Harry? If we had been able to go through an amniocentesis we would have, to have gained a full understanding of Harry’s quality of life. We will never know when Harry’s heart stopped beating, but I know the last time I felt him move, really move.

8) “So what happened? There has been loads of gossip about you” I lowered my head and said there isn’t a lot I can say really. It’s never nice to know you are the centre of playground gossip. To be told that you are over losing your son hurts. I made B Lloyds and mine excuses and we swiftly left.

9) “You seem to have moved on” I particularly resent this remark. We do have to get up every day, and we do have to function, and breath and carry out all those mundane day to day life things. Just because I am pulling myself through each day, making it to the end of each day does not mean that I am not constantly thinking about Harry, remembering what we have lost, coping with not having our baby in our arms, discussing with B Lloyd what her brother would have been like, looking down at my post partum body and reliving the nightmare of the past 8 months. Just because you may have seen me laugh or smile, or write about cooking myself dinner most definitely does not mean I have moved on. We doubt we ever will. Life has a uncanny way of continuing we are painfully aware of that, understand that, but don’t assume that Harry will ever leave us, or be forgotten by us. Because he won’t.

The next set of please don’t do’s are harder to explain. These acts have happened and been directed towards us and have been as hurtful as the said word.  So I urge you to just think about what you might be doing and how it might be interpreted by a family going through something devastating like losing a child.

10) Don’t send a text/email reporting your own healthy 20 week scan - try a bit more of a personal touch with this one maybe a phone call to see how we are doing, and consider the amount of time it has been since the stillbirth. Consider a week to early.

11) Don’t hear devastating news, a life changing diagnosis and then less than 48 hours later forget that these parents, are returning to the hospital for further tests and ask them why on earth they are not at work.

12) Don’t comment on “wasting £40 on balloons” for the parents memorial to their baby.

13) Don’t ignore the huge elephant in the room if it is the first, second, third or twenty third time you have seen the parents. In all likelihood although your life has moved on their’s hasn’t.

14) Don’t say “Oh well I’m sure you will feel better tomorrow” Expect parents to be less inclined to be happy on their birthdays, anniversary days, or just any general day.  They probably won’t want to hear you will feel better tomorrow, because they probably won’t.

15) Don’t tell parents they will never have another chance of baby. Especially if there has been a genetic finding. The parents are unlikely to know the full implications for themselves at this point, you most certainly do not know this.

But at the same time there are many many things that you can say or do that although cannot change what we have and are going through, can show that you are reaching out and touching our hands metaphorically or physically. You can see the pain, understand the pain we are experiencing. That you love and support us. There has been so many little things that have helped Daddy Lloyd and I, things so simple that often friends or family will never quite understand how much they have helped or supported us. Acts that we cannot ever find the right amount of words to express our thanks and gratitude for.

So Do Say...

1) I’m so so sorry.

2) Admit if you do not know what to say.

3) It is ok to cry, in all likelihood so will we. Don’t be scared of our tears, it’s a release and we just don’t know when we will cry. It can happen at any moment, even after laughter. It can even happen on days I consider myself to be doing ‘alright’.

4) Do ask questions about Harry. One of the nicest questions I have been asked is “Did you get to spend time with Harry” I love answering that question because yes, yes we did and it was the most wonderful 24 hours. He is our son, our baby and it was the worst thing imaginable not to bring him home but as his mummy I loved those very special cuddles. That was our time with Harry and I want to be able to talk about it.

5) Do talk about random stuff, once that great elephant has been removed from the room we do still want to hear about this and that.

6) Do expect us to not want to look at/hear news of a friends/relatives baby being born. Ask us how we feel about hearing about so and so. Some days we might be happy to hear details other days we might want to decline. But we appreciate you asking us first.

7) Do ask to see us, but we may suggest you make the arrangements. Decisions are hard enough so taking some of that strain away is a relief for us. Make the most of the local Starbucks. It does coffee and cake and it just might make us smile.

8) Do just send random text messages/tweets/messages asking how we are doing.

9) Do simple things, like we were brought a LOT of M&S food just after we were home from the hospital, it meant we didn’t have to think about what to cook we just had food readily available.

10) Do hug us for that split second longer than you would usually, we will appreciate it, sometimes a hug can just lift us!

11) Do mad things like run half a marathon in Harry’s memory, donate money to Cystic Fibrosis, ask to see our pictures of Harry, plant roses in his memory. Talk about Harry, because we want to talk about him and we would love to talk about him with you.

I have now rewritten, reread, rephrased this post more times than I can remember. I really hope it is read and reread, and somewhere it helps someone know how to speak and act with a loved one going through something similar, it helps people to understand just some of the pain we feel daily, it helps me to get all of these feelings of my chest and above all it helps make the subject of loss and grief a more open subject so that when you are faced with not knowing what to say to someone you might be able to say or do the right thing.

Fiona: 'Capture Your Grief' Photography Project

The Capture Your Grief project was started on the Carly Marie Project Heal website to raise awareness of pregnancy and infant loss during October’s month of awareness. It is also a creative tool that can by used by those going through the journey of grief after the loss of a child to express, heal and share feelings. Each day has a theme and photos are shared as privately or publicly as people want.

I decided to take part for a number of reasons… I haven’t done a creative project for a while or used the lovely camera my husband bought me for our first (and much sadder than it should have been) wedding anniversary.  I’m reaching the end of the house renovation project that has kept me busy for the last 4 months and I am reaching the 6 month anniversary of the death and birth of our firstborn son Max.  I put death and birth in that order as that was how they happened. At 39 weeks and 1 day pregnant, my baby stopped moving because his little heart had stopped beating and 3 days later I gave birth to him.

At the moment my grief is capturing me, it is enveloping me in shroud of sadness and tears that are beyond my control or management, it is leaving me crumpled and broken on a daily basis.  Capturing some of these feelings in photographs and sharing them has been a mixed experience.  It has given me the opportunity to take more time to think and look back at Max’s story.  Getting out all the cards that we received and reading again people's kind words was a powerful reminder of how loved we are, but also that I have not heard from many of those people since and that I don’t really want to.

I had very little to add to the “what not to say” day as we have been so fortunate to have such lovely people around us.  Even our neighbours have managed to say the right things at the right time.  Lighting our candles together on the 15^th October brought home to me how much closer my Mum and I have become and how much I need her. But at the project goes on I am realising how near the beginning of my grief I am.

I have so many plans of things I’d like to do to remember him but have had time to do so few.  Sadly I know that I have the rest of my life to do these things and trying to rush through them is neither going to bring him back or take me to some imaginary end of grieving.

So maybe each October I will be able to add a picture or two to the album as I make more memorials and get through more milestones, and maybe one day I’ll feel that I have captured my grief and, whilst always being part of me, it will no longer define me.

Fliss: Letter to my Ayla

19^th September 2012 

My darling, beautiful Ayla,

A year ago today I was hoping that you would be facing a heart operation when you were only one month old.  What sort of a wish is that? One where you would still be here, you would have had a chance, a good chance, at life.  A year ago today I had no idea, absolutely not a clue, of the horror, the heartbreak and life and soul changing devastation we were about to go through.  From the moment that test showed two lines I felt so different than I did with your big brother.  There wasn’t the excitement I had with him.  Happiness – yes, I was very happy but I couldn’t shake this feeling that something wasn’t right.  I didn’t dread miscarrying, I expected it and was almost surprised that every week you were still there.  I didn’t want to miscarry sweetheart but maybe I knew that I would lose you in some way?

We had an early scan and again I expected to be told that the pregnancy wasn’t viable, there was no heartbeat, something.  The 12 week scan I expected bad news again but there you were waving at us.  But not moving, not like your brother did.  Your Daddy questioned it but the lady said it was fine, our first sign? She couldn’t do the nuchal measurement because you wouldn’t change position, the first sign you would be doing things your way.  I didn’t mind because I knew termination would not have been an option for us.  Even those scans didn’t relieve that worry deep in my heart.  Please sweetheart, don’t think I didn’t want you, I did, I do, so so much.  I knew you would be a girl but I also knew that you were poorly, on some level at least.  I never, not once expected you to be as poorly as you were but I knew something wasn’t right.

We sat outside the room where we were to have your 20 week scan.  The scan that people normally get all excited about, seeing their baby looking more like a baby, finding out girl or boy.  I didn’t I felt sick with fear, I sat there rocking back and forth, looking back now I knew so much more than I realised at the time.  That scan was the start, the real start of your story.  Your miraculous battle to make it into the world.

A year ago tomorrow we heard the words ‘Your daughter has Edwards Syndrome’.  We had no idea what that meant, how big it was. I hoped it would mean you would be disabled, need special care, have special needs, I never imagined, never, that it actually meant we didn’t get to keep you.  Babies don’t just die because their genes aren’t right, there must be something that can be done, surely? How little I knew then, how little I understood.  How much I know now.  Its hard to remember ever being that ignorant, that naïve.  Before we had that phone call, whilst waiting for the results I remember standing at the fridge thinking about the possible dilemma we could be facing, let nature take its course – give you a chance, or end your story prematurely.  Live with that the rest of our lives.  I stood there thinking this all through, round and round and you, you flipped inside me and gave me the biggest series of kicks and movements as if you were saying, no, shouting at me ‘GIVE ME A CHANCE, I’M HERE, I’M FIGHTING, GIVE ME A CHANCE!!’ and that’s when I knew without a doubt that there was no way, no matter what the diagnosis, there was no other option for us but to carry on, give you a chance, let nature do what it needed to.

It led to the hardest, loneliest time of my life.  I didn’t want to be pregnant anymore; I just wanted it all to go away.  Go to sleep and wake up when it was all over.  But I loved you, oh I loved you so much by then, I was, am, your mummy and I would do anything for you.  I do not regret giving you that chance, not at all and I never ever will.  My love for you is overwhelming, all consuming and everlasting, just like my love for your brother, because I am your mummy.  I can no longer do anything for you so for those 5 months I am glad I did everything I could for you.  I do things to keep your memory alive, show my love for you to the world but it’s not the same, you are free now, you don’t need me.

The guilt I felt and still do in some ways at not being able to protect you, make you better engulfed me for months.  Why couldn’t I make you better? That’s what mummies do, give magic kisses and cuddles, go to the doctor, whatever it takes to make their children better.  But I couldn’t, no matter how much I wanted, wished, begged, I couldn’t.  There was nothing I could do but give you a chance and hope, every decision I made I did what I felt was best for you and I hope you know that my darling and could feel my love for you every second of every day you were here and every second since you went, since we had to say goodbye and give you no more cuddles and kisses.  When I broke inside, never to be completely fixed again, to always have a hole in my heart, a piece of me missing.  Every happy occasion, smile, laugh tainted with the pain and sadness of you not being here, someone missing from our family forever.

So what do we do now? We miss you every day, we light candles, we send you balloons, we talk about you, to you, we see rainbows, sunflowers, butterflies, stars, blow bubbles and think of you.  We use you to drive us in our new perspective on life, we hold you in our hearts as we try to move forward, sometimes stumbling, sometimes slipping back and sometimes falling flat on our faces, but we get back up and carry you with us in everything we do.  Because we love you, forever and always,

Watch over us baby girl and know you’re always with us, 

All my love, 

Mummy xXx