Friday, 30 December 2011

Wrapping Up a Year....

I am ready for this year to end with an impatience that surprises me.  Looking back I have actually surprised myself constantly this year.  I have been knowledgeable in a whole area of death that most never even have to think about, let alone live through.  It should be something you have to list on your CV 'expert in child deaths and burials' as a qualification, ask me I can go through the whole thing with you.  I would sincerely like to not to have to draw on this new-found expertise again any time soon. 

Brothers together on a Windowsill
UK December 2012
In an effort to tie off all loose ends I collected Gabriele from the funeral directors yesterday and brought him home, my parting words to the lady that has arranged both funerals with me was that I hoped not to see her again in 2012.  I Gabriele home and decided to put his urn in with his brothers in their Memory box rather than leaving him alone so I carved out a space amongst all the meaningless 'stuff' and sat him there.

So now 2011 draws to a close and I need to make some more choices.  In some ways I have yet again been put back to the starting block but I now look at the race from a different angle, I have been given a disadvantage penalty that I didn't know I had when I first started this whole thing back in August 2009.  The other runners in my original race are so far ahead now they are either lapping me or have finished it completely.  

I continue to have hope but I am not counting on it, the sad truth is that I don't think anyone else does either.  After I lost Gabriele people stopped telling me that it was 'just bad luck' and that we could 'try again', this time it isn't mentioned and when it is they ask 'have you thought about adoption'.  

In essence I have been written off by the general populous, which makes it all the more harder on me to justify this myself.  But then my empty house echoes back at me and that is the justification.  Surely.  

Wednesday, 21 December 2011

Pandora's Box

It is four days until Christmas, seventeen days until the twins 1st Birthday, thirteen days until Gabriele's due date and somewhere in there New Year happens, we all remember last year's New Year.  So call it bad timing or whatever but these days are expectively sitting heavily on my psyche and if I were to tell you that I had been fine, I would be lying, and actually you can see from the sometimes manic tones of the previous posts.

The Garden a Year Ago......
UK December 2010
Yesterday a lady who is also sufferers from CHI lost her Rainbow, she was 8 weeks gone.  Her little one probably didn't even have time to bed in before the placenta was completely ruined. I have never met this lady but we are sisters and I was so sad to hear that this happened to her.  So close to Christmas she has the big 'why?' question she now has to live with of these increasingly maddening season of repetitively annoying Christmas songs and tinsel and presents, endless presents that have to be thought out, bought and wrapped.  

So it made me think about what we are left with when this happens, when the shadows are long and you feel like you are viewing the world from the sad side of life's sound-proof window.  You look out and see everyone else enjoying life and turn around in the silence of the partition you live in and spy the box.  Pandora's box which sits in the long shadows of this world.  Hope does sit in that box and it is the only comfort with its soft glow through those moments I have of utter and complete despair, it is the only thing that brings me back from the teetering edge of complete insanity, when I come so close I can taste it. I touched madness in those final weeks with Gab.

So I accept that the end of this year, as the last, is going to be rubbish.  I am thankful for the small things that I can be thankful for and sit tight and watch as this season flies by what the next year will bring.......with hope.

Monday, 5 December 2011

Tired

I am taking a break.  I thank you all for shoulders to cry on but, honestly, it still isn't filling the hole.  Nothing is and I am finding it more and more difficult to push forward.  My OH already has decided social networking is not helping him in anyway and I am beginning to feel the same.  Perhaps I am misunderstood?  I don't know, I know I have a tendency when things go bad to pull everyone together and to start shouting really loud that something needs to be organised, changed, researched.

I have tirelessly trawled, compiled, drawn up and extracted every single piece of information out there.  I repeatedly produce everything to the Doctors to hopefully encourage them to think twice.  All because I really, really want someone to help me, but am not convinced that anyone can.  This makes me try harder, push further and not give up but then you get someone reminds me that I am on my own, that no one else wants to do this, they don't want to fight, demonstrate, push and demand.  They just want to offer support and comfort.  

Is that what I am supposed to do?  Be a mournful, weepy mother that submits to being comforted?  Crying constantly at the hopelessness of it all on the shoulders of all the mothers that have made it through this before me?    Let myself to be lead, content to allow whatever will be to be?  To look back in 10 years when it is all too late for me and know that it is ok because a thousands Mums gave me support?   Or is this easy for some to say, the ones that have produced their miracle and so have only fading memories of the 'before' times.  Desperate times.  The times when every every day was black and produced day after day after day of black.

I don't know.....that's why I'm tired, I think so much my head actually hurts.  Back to work, concentrate on that and avoid looking into the catastrophe (ohhh look yet another new absolute noun) of my life.

Wednesday, 30 November 2011

Living life, Surviving Life

Now there have been times when my 'sorry old self' has used this blog to pour out all the self-deprecating thoughts that I defined as warranting me to be credited with the title of 'Uber Sorry Old Self'.  However I wanted to bring someone over to my blog who is a complete source of inspiration for me, despite wading through a whole Nile's worth of rubbish herself, so guest starring on my blog today is Lisa Lynch and in particular Faith, which was her latest blog post.

Me and my Mum - surviving 'life'
Before I hear the uproar, I am aware that in the blogging world that one rarely resorts to crossing blog topics, so how I wound up on Lisa's site may come as a surprise.  I would really like to thank Lisa for having done me a massive favour earlier this year, basically after my first calamity when I lost the twins, you remember, that period when I opened the blog and the rambling started, my very own dear Mum was diagnosed with breast cancer.  

In one of my desperate moments faced with my own inner and outer turmoil I used Lisa's book as a substitute support for my Mum, knowing that I simply was unable to offer my shoulder to lean on at that particular moment as I was incredibly close to stellar collapse of epic, black hole, proportions myself.

So Psychologies magazine>Lisa's article>Amazon>Lisa's book>my Mum.  11 months later I found my way back to her blog, hoping to read all kinds of continuing wonderfulness on her road to recovery to find she is possibly in a worse scenario than me.  

That's not to say that this is a competition on who can be the most melancholy - no no no this is far worse than that.  I think of her often trying to figure out in my head what would be worse, it has warranted some serious head scratching on my part and if you don't believe me check out her blog and then will you get back to me with what you think?

As for my Mum, well her op and chemo all went well and she has the whole 5 year wait thing now.  I guess we are all waiting for something and hoping it will be something good.  Sometimes you are living life, sometimes it's about surviving life.  I know which one I am doing at the moment and there is no shame in that.

Sunday, 27 November 2011

Upside Down

Classic Bondi, Sydney Australia Nov 2012
I flew away.  As far as is humanly possible.  I am in Australia, Sydney to be exact, having taken up residence with the international dateline.  The day I flew out I went to see the Consultant.  The post mortem came back confirming the same CHI issue with the placenta.  I did not envy him, the man who has the burden of putting together a plan for the medical oddity that is my body,  for 'a plan' for next time - next time.  I have to somehow find the strength for a next time.  The next will add a whole array of delicious chemicals and medicines to the ones I took last time.

I am a confirmed guinea pig yet, despite the concoction of medicines, they still cannot give me a guarantee, not even a 50/50 chance, that it will be successful.  He said it would be too optimistic, 50% is too optimistic. So I picked up all my notes, politely shook hands and said goodbye for now.  I walked out, no little box of hope this time, just a whole load of guessing and less than 50% chance of my ever having a baby.  That's when I flew away.

There is still no way I can leave it behind though, the baggage aka 'my life' came with me.  I wondered around Sydney today in my own company, marvelling at the oddity of Christmas in the heat of Summer.  I saw a million people and felt as I walked around that I am the only one there with this weird condition.

I see my boys everywhere.  Everywhere; each time a mother bends down to speak to her child, to push a pushchair, take a hand, raise a voice.  I see that as what should be me right now.  It isn't of course, instead I am technically upside down, on my own, on the opposite side of the globe to where I should be, working.  Always working.  I can't run far enough away.

Monday, 14 November 2011

The Road Less Travelled

Isle of Wight.
 I didn't write for a while but as the leaves continue to fall life rolls on and I went back to work.  Next week will mark six weeks and I am due for the dreaded debrief from the Hospital.  

I find that overwhelmingly this time the I only get the odd flash of the life before, a time before all this happened.  The time I get of guiltless, unburdened thought is fleeting and usually appears in the morning, as I wake.  I am gifted with a few seconds, not long, but for those moments where this didn't happen and I am not sad, forlorn, guilty, frustrated, lonely, mourning the loss of my boys.  But it all comes tumbling back and this day is the same as the day before.  Slowly, slowly I pull my weary body, mind and soul together and we plough on.

I am on the road less travelled and there is not turning back, no turning around.  My boys are with me often and I think of them throughout the day, I see their faces and can't help but wonder what I should be doing instead of hoovering or cleaning or on the phone at work.  But what I am doing is what I would be doing anyway 'loving them'

"I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less travelled by,
And that has made all the difference." -
Robert Frost

Wednesday, 2 November 2011

Closing the Door Behind You

There was a chill in the air and the leaves fell was we crawled up the drive to the crematorium, if they hadn't have been recognisable as leaves you would have thought they were snow flakes, they were beautiful dancing down from the trees to gently meet the ground. 

The last time we went there had been a frost and the snow had just cleared.  This time, nine months later, it was a quintessentially autumnal day.  Today is All Soul's Day today or 'Día de los Muertos'.
Papà carried you in his arms into the crematorium, I walked next to you both.  We cried and we said goodbye again.  

There was nothing to fear from today because you are already gone and the worse has already happened.

Today we walked through the door of this year and all of the mess that came with it and out the other side.  This time I closed it, slammed it shut, and turned the key in the lock. That's what I failed to do last time, that mistake won't happen again.  This is the end of the chapter. 

Together we push forward because tomorrow starts a new one.

Tuesday, 1 November 2011

Just a Day....rainbows to ashes

Tomorrow is just a day.  It will be no longer and no shorter than any other day, the only distinguishing feature about tomorrow, the only thing that will separate it from the rest of the 365 repetitive days that come round each year ,is the fact that we will bury Gabriele.  Our third son and much wanted rainbow baby.  

What comes after a rainbow or when a rainbow ever comes, what then?

He is ready, packed with his favourite things, a blanket and teddies, a quarter coin from American and stickers of Formula 1 racing cars......all of these things I imagine to have been his favourite.  All this along with letters from Mamma, photos of his parents and a picture from his cousin Isabella.  I create an imaginary life for him to take away, to turn to ashes - like our dreams.

I was torn today as to whether I wanted to keep the blanket, the teddies, something.  But honestly, I am tired, I am tired of creating memories, lives, mementoes of babies, my children who I see but don't know.  I decided that I don't need the blanket it will go with him. 

Boxes.....my children are in boxes, they are buried in boxes, their memories are in boxes and all the baby 'stuff' I have accumulated over the last year and a half is packed in boxes.

I wish I could live in a box, just for a little while.  Just until I wasn't tired anymore.  Just until I didn't feel like I messed up so much. 

I hope that I can be the offered the opportunity to make amends.  At the moment the only thing that keeps me going is the knowledge that if I keep fixed on my blinked, forward view I can keep going.  When I make the mistake of looking sideways, to the present, or even glance backwards, that's where I see where the true horror lies.

Tomorrow is not just day, it is the day that our rainbow turns to ashes..........


Monday, 31 October 2011

still life with circles: spoken word blog round-up

still life with circles: spoken word blog round-up  

Please refer to the previous blog, which I have turned into a spoken word below as part of the Still Life with Circles Round-up:

Saturday, 29 October 2011

When two absolutely needs to become three

I have got to stop talking to you as if you are still in my belly Gab.  I mean, I chat to the twins all the time, but saying when Papa arrives home from work "Hai visto? Papa e' tornato" (look papa's back) is nothing but a ticket to a mental institution.  It was more than a habit though,you were my future and now that's on stand-by - this is why I'm finding it hard to break.

I was chatting to online to a friend just the other day. I was trying to remember when the two of us, my husband and I stopped being enough.  I clearly remember a time when I didn't discuss my day-to-day life with photos, chat to an empty belly, not stock the cupboards with obscure brands of vitamins which all boast magical powers, weep at watching 4400 boxset and wish there was actually a 'healer' that I could call to mend my broken placentas.  I do remember when it was just him and I, he was everything to me, everything I ever wished for. We laughed 'Babies-pah!  Who needed babies?!'. Don't get me wrong he absolutely still is my one and only, but that stopped being enough.  I am now kind of regretful that it did because this year has turned out to be very, very, NOT what we wanted.

Something switched on and now its stuck in my head, like that song you can't get rid of.  I have to have a baby and every time I am denied I become more resilient.  I have to do this.  Not out of selfishness, but out of love.  Not for the fact that I fail, but for the very fact that I almost win.  Each time.

It becomes an obsessive.  An all consuming game where you are playing against yourself, striving to find the answer, without the foggiest idea about what the rules are.  This is not helped by the game not being played anything like the one you played with your dolls as a child.  Do you remember?  Your tummy got big (aided by an uncomfortable plastic-limbed doll being stuffed up your jumper), you went to hospital (bottom bunkbed), you came home with a plastic baby that used to cry when you pulled its dummy out of its mouth (until the batteries ran out) and broke when you made it 'drink' water.

It is hard not to become fanatical, immediately running to Hobbycraft to buy those dyed pink feathers that you read somewhere would sustain a pregnancy if you wore them strapped round your waist whilst running down the street naked.

You become a believer in all kinds of unbelievable, the stuff I used to pull my 'no way' face at.  I believe now.  In all that stuff.  Any kind of stuff.  Just stuff.  Give me the stuff.  I need to make him happy, I have to make him smile again because it isn't fair that I found my soulmate to only make him the saddest man in the world.

Funeral is Wednesday.....I say it again.  I cannot wait for this year to conclude. 

Also available as a video blog here as part of Spoken Word Blog Line-Up 

Monday, 24 October 2011

Bitter Sweet

Today we booked the funeral and got slapped with the bill.  The money for the cot that I have really wanted to buy all year has again paid for the coffin and cremation expenses.  

The crematorium are making good money from us this year, also considering we get charged the price of a child, rather than the cost of the tiny little baby he was, because they charge by age not size.

Today I am tired of my silent house and really wondered if it will ever be filled with the craziness of kids.......I wonder if I will ever get round to doing something happier than organising funerals for my family.....

Tuesday, 18 October 2011

"I'm Fine"

....when you ask, that will always be my answer because I am, we are.  Everyday the sun rises and we wake and get out of bed and keep busy living.  There is plenty to do now.  There is always plenty to do.   Most of all trying to figure out how to beat this thing.  

Things that I would avoid saying to me at the moment include:
1). "It will be fine, you will get over it." - no because this isn't something you get over.
2). "Sorry I can't be a surrogate for you" (I wasn't looking for one).
3). "When are the Doctor's going to give you the cure" (there isn't one)
4). "Why?" (we don't know, so stop asking).
5), Generally trying to council me, especially if it starts with either "I know how you feel" (you have no idea, unless of course you have been through the same hell) or "I don't know how you feel but can imagine" - no you really can't.....not to mention that you really, really wouldn't want to.

I look in the mirror and appear pretty normal but I have a 'thing' that happens when I get pregnant, and its rare - diagnosed in approximately 1 % of spontaneous abortions (miscarriages), and in less then 1% of placentas in the 2nd and 3rd trimester (those are the ones we analyse, those that never have the placentas checked we do not know about).

So I'm fine and yes, I've been reading and studying.  I want to make sure I fully understand as much as there is to know about this condition before we tackle it head on after all 'she who dares, wins'. 

We are still waiting for Gabriele to come back and have yet to arrange the funeral, in the meantime Gabriele'a name has been written on Christian's beach thanks for to Carly....stunning!

So this story has a long way to go, I remember the scene in Neverending story where Bastian is in the atic and starts eating his sandwich and says "No, not too much. We still have a long way to go."  That sums us up right now.......

Saturday, 15 October 2011

Lanterns and Candles



This evening we lit candles and let a lantern fly high......then we held hands and remembered 2011, the year we had three sons.....

Pregnancy and Infant Loss Awareness Day


Tonight at 7pm I will be taking part in the 'Wave of Light'.  There will be three blue candles lit in the names of Vincenzo, Benedetto and Gabriele.  Three brothers taken by CHI and all the Mother's whose sons are just out of reach right now.


Thank you to everyone who has taken the time to send me a message, a card, a present.


Yesterday the first clinical study has been given the go-ahead, some research into the management of ladies with this condition.  The first tiny step to stop my situation happening to others.


Today is Pregnancy and Infant Loss Awareness Day.  Today, like every day, I remember my sons.

Friday, 14 October 2011

Three Little Boys & A Mum Without Sorority

I have three little boys, they are my sons.  They don't live with me right now, I will have to wait to see them.  This week I have mainly been missing my little man Gab.  It has been over 9 months since I lost the twins and Vincenzo and Benedetto provide me with a reassuring comfort, you get used to them not being here with you, little Gab was expected though.  I still have to get used to the fact that he wouldn't be staying either.

Naturally I had some time to prepare, and packed away the few bits that I had put to one side for him.  The amount of baby things I am accumulating now is still manageable but just very, very sad.  I have one room with packed baby things and another with the memory boxes, ashes and photos.  Two separate places......

The other strange thing is that I find myself in a fairly unique situation which makes me feel a little isolated.  The first time it happened you meet with many women that have suffered miscarriage and stillbirth and, as is human nature, you seek solace in the sonority that you form with ladies going through similar pain and talk your way through it.  

This time I can't find them, the other mothers that have multiple stillbirths.  I meet ladies with recurrent miscarriage, but that isn't the same, they simply pass their condolences and tell me that they 'can't imagine what I am going through', I wonder where the rare 'recurrent stillbirth' ladies are, are they even called 'recurrent stillbirths'?  I have no idea.  Do they go away and hide or maybe they get rubbed out of existence?  

Either way that's me now, and only they can full appreciate what we are going through, wherever they are, so unless I can find them I guess I have seek solace in my own company......

Monday, 10 October 2011

Angel Gabriele

Our son, you were born at lunchtime and weighed 480gm.  We named you Gabriele.  The weather outside on the day you were born was a chilly, windy, autumnal day, it even rained a little bit. 

I laboured for six hours with you, you arrived quickly and silently, I didn't mind.  The nurses washed and dressed you with care in the outfit that I had brought and personalised just for you, it will be the only clothes I will ever buy for you.  

They then brought you into the room and we spent the day together.  I gazed in awe at how beautifully perfect you were from your tiny fingers and toes to your eyes which were open.  They looked at me without seeing, you never saw my face.  

I stared at you, I thought I saw you eyelids move, I willed your warm little fingers to clench for me, but really I know that you were already gone, far away, further than I can reach right now.

Father Joseph came and we christened you, prayed for you and consigned you to heaven, even though we know you were already there.

I then read you story and it was time for us to say a final goodbye, my whole life with you in an afternoon but it was a beautiful day.

I can see that you were a little fighter and tried to show the Doctors you could make it to 500gm, but you ran out of time, the placenta just couldn't get to you what you needed anymore.  Me and you, we didn't make it, just 20gm short.  For that I will always be sorry but I thank you for being that strong little man with a heartbeat like a little horse.

I hope you know how happy you made us during the weeks when we watched you during the scans, dancing on the screens for us, showing Papa your arms and legs and wriggling your bottom at him, making him laugh.

Piccolo Gabriele be good in heaven, I think that you have a quiet nature, like Benedetto, Vincenzo will always be the boldest, but your face told me that you would be a quiet little thinker.

From today I have to write to three sons in heaven.  My three angioletti.  Mamma and Papa love so very much.


Baby Angel Gabriele our little Fagiolino, cavollino, ballerino....
Born sleeping 09/10/11

Friday, 7 October 2011

Bye Bye Baby....

My baby died this morning, the womb was silent during the scan.  I am 27+5 weeks pregnant and it is 9 months to the day since I lost the boys.  In 2011 I became a mother to three children, none are living, I will hold two funerals.
 
I now wait for the hospital to tell me when they will give me the drugs to induce labour and again I will labour until the baby arrives, finally I will meet my little promised Rainbow Baby at the same moment that I will say goodbye.

So my Rainbow turned into a Butterfly and flew away to be with his brothers.........we are left behind, again, what now?

Wednesday, 5 October 2011

My Rock and Hard Place

I am 27+2 weeks pregnant and am being asked why the Doctors are leaving me in this situation, why won't I be induced.  I will try to explain.

Being induced becomes a bit of a legal nightmare after 24 weeks.

To clarify I am over 27 weeks pregnant now yet the baby is not deemed viable because it is under 500gm (roughly 430gm).    At the same time cannot be considered 'incompatible with life' which would allow you to opt for selective termination or Termination for Medical Reasons because it does not have any diagnosed illness apart from being just too small.

Furthermore, because there is a slim possibility that the baby would survive the birth, if it did would have a high probability of being brain damaged not to mention have heart damage due to the enormous strain caused by severe growth restriction (IUGR) along with all the other conditions that accompany premature birth (moderate or severe cerebral palsy, bilateral blindness, bilateral hearing loss requiring amplification) this in itself is a huge risk.

Thanks to my condition, I grow my babies healthy right to the tipping point but never quite make it over, it dumps my baby just before the 'viable' line  I can see it, it is only 50gm away.

Sadly 50gm is too much, my baby can't put any weight on now the placenta is so clogged up now by all the junk (medical term histiocytes) I fired at the intervillous space (the space in between the finger-like vessels  of Mum and placenta) that's where the space should be full of free flowing nutrient-rich blood, which then flows to baby (click on link above and behold the empty, clear space) it is probably now looking like a car park of histiocytic junk, this is the face of what is killing my baby Chronic Histiocytic Intervillositis.

What this means.  So the basically not enough blood is getting through, hence reverse Dopplers or Reverse End Diastolic flow.  Reverse flow normal indicates the need for immediate delivery, leaving a baby in the womb with this finding means the baby is conserving all the blood it does receive and trying to direct it to vital organs, in a bid to survive.  Everything is sent to the brain and heart, but this is unlikely to be enough and is sure to result in brain and heart damage.  This is also why the fluid levels drop, (often expressed as Oligohydramnios or anhydramnios) there is no more peeing from baby.

So what do I do? 
1)  Wait until baby shows signs of distress and then the heart fails (this could be days, couple a a couple of weeks)? Does this not seem cruel?   
2). Do I deliver and hope that the little doesn't make it through labour or survive a little after and pass away in my arms?  
3). Will I be responsible for pushing for an induction which could result in a severely disabled baby?  
Three impossible choices like last time.

I am what is considered to be between in a real rock and hard place scenario. 

Monday, 3 October 2011

Shopping for Outfits

Today I brought presents for my best friend who gave birth to twins yesterday.  Then later at home I went online to buy an outfit for my baby I don't want this baby to be wrapped in a blanket like the boys were.  This time I have chosen something cute from: Cheeky Chums Online who in addition to their lovely range of premature clothes, also do a line in tiny burial outfits, baby pouches and even nappies.  I don't even think I need to point out how I felt about doing the same thing for completely opposite purposes.

I also brought a casting kit, not sure how I am going to manage to pull myself together to mix the stuff but I will give it a go, this time I want casts of the tiny feet and hands.

I am also contacting a photographer from Now I Lay Me Down to Sleep.

We (me and baby) were also touched by how many visitors we have had.  Today alone we had 1,620 people visit our blog more than we had ever had.  In total over 11,000 visits from people all over the world.  Most haven't left a message, shame, but I tell my baby what a celebrity he/she has become, not to mention Vincenzo and Benedetto, who I hope are watching........

So many people know their story and for me that means they made an impression that will be left behind. 

The Heart Beats On.....

My baby is 27 weeks old and the heart beats on like a little flame in a breeze.  It is so hard to use the Doppler since the sentence was passed on friday, I am so afraid.  But I have to be brave, like my baby.

The last few nights many ladies, who I have never met, have been kind enough to light a candle and say a prayer for my rainbow baby.  They know who they are and we find it an enormous comfort.

I have also done the same, I hold my bump and imagine that I am hugging my baby when I pray.  

I will continue to comfort him/her until the time comes and remain thankful for the time we have been given together.

From the beginning it will be me and the baby, as it will be at the end....that is the bond of Mother and child no matter how long or how short that time is.


I continue to prepare myself mentally for what is to come and know that this baby will change me again.

In the meantime this baby will feel my love everlasting.  We love you baby.....

Friday, 30 September 2011

Time to say goodbye.....

Today we were told there is no hope left.  Dopplers are now reversed and the heart is starting to struggle.  There has been precious little weight gain.  I am 26 weeks and 5 days.  Our baby is dying, we didn't even find out the sex but as it will only be a few more days I know we will find out soon.

I look at how glorious the sky is today, I wish I could hold him/her close while I tell him/her not to be afraid.  Instead I have to have my doppler in hand and use it until I no longer here the heartbeat.

I hope it doesn't hurt in there.

I know that his/her brothers are just waiting to play together.  That is where my family is now.  Heaven can expect my third child any day now......we have another funeral to prepare for, two funerals, three babies all in one year.....

Thursday, 29 September 2011

Waiting for God

Yesterday I took my baby to sit in the sun.  I popped a sunbed in the garden and lifted my top above my bump.

I hope that my baby's little eyes could see the sun and feel the warmth through my belly and find it as much as a comfort as I do.
Three weeks ago I was signed off work and started waiting for God.  Yesterday while I was lying in the sun I talked to my baby, explaining how wonderful it would be if he stayed and how much I hoped that despite him growing slowly if he could just grow a little more before the placenta stops working I promise to take him/her to the seaside and see the sea which makes the sun even more spectacular.

I talked about how the noises we could hear were birds and what they looked like, especially the little Robin who is always around.

I told him/her that I was sorry that I didn't do more to get referred after this happened to the twins, that only now the doctors seem to recognise just how real a chance this had of coming back.  We should have been referred, my baby didn't need to be in this position now.  There are treatments that we could have followed.....if only the Doctors had actually listened....

I then prayed again that this would please turn out well.......because that is all we have left now.

Saturday, 24 September 2011

Day and Night

Sometimes there are no words to describe how it feels, I broke my placenta, again.  No emotion that can encompass the soul destroying nature of constantly having to face bad news.  

I wrote an entry a while back entitled 'Night and Day', I re-read it and remembered how it felt, I cherished every great scan we had and seeing my baby so happy inside me.

Early pregnancy, when everything was wonderful!
Night is back the storm arrived.  The Dopplers read 'absent flow' yesterday. We have been told there is nothing more we can do except wait and hope that somehow the baby will put on a little weight.  

So we back to waiting, being still, unmoving, scared to do anything go anywhere.  We are here, one more day.  We continue to fight, one more week. 

We received so many well wishers, ladies I have never met that have reached through cyberspace to send their prayers.  I thank them all.

I am strong because I know weakness,
I am compassionate because I have experienced suffering,
I am alive because I am a fighter,
I am wise because I've been foolish,
I can laugh because I have known sadness.
I can love because I've known loss.

Hold on little one - We love you xx

Thursday, 15 September 2011

Chronic Histiocytic Intervillositis (CHI)

This is the end result, it is what they will find but due to lack of research they don't know what causes it.  The only group I could find is on Facebook where 50 women worldwide all huddle together after our varying degrees of success with having babies.  Who knows how many more out there have had it go undetected or didn't find us yet?

One of them also hosted the only website dedicated to it and posts medical papers there: http://chisupport.org/.  If you search it on Google you retrieve 2,000 results, that's all.

Limited research, unknown cause.  What is certain is the high probability that it will reoccur and the high rate of fetal mortality.

For a layman explanation you can read this post: My Rock and Hard Place which explains with photos and everything exactly what happens and what it looks like.

So by adding a post I hope to add to the search results.  While my baby and I await our sentence this time.

Wednesday, 14 September 2011

Batten down the hatches....

How can this be happening again?  It was all going so well then, last week the doppler checks showed that something is going wrong again.  The exact same thing is going wrong this time as it did with Vincenzo at this point last time.

I am 24 weeks and two days pregnant they want to deliver but the baby isn't big enough.  That viability question again, baby simply isn't big enough, estimated weight is 400gm.  Needs to be 500gm.  May not manage that extra 100gm before the placenta stops working entirely. I have maybe a couple of weeks, tops.

To say this happened once could be a fluke.  For it to happen twice at exactly the same point means that there is something seriously going wrong here.

I wait, to be referred again to Oxford.  
I pray, that the sickness I feel in my stomach I can push to one side just long enough so that I can eat so that maybe some of it will squeeze into the baby who is fighting so hard.  
I relax and think positive thoughts in the face of everything screaming at me inside the opposite.

I batten down the hatches.........a storm is coming.......a hurricane threatening to sweep away the perfect hope that I had nurtured inside me along with this little one.

Is my third child also destined to be a forever angel?  What an earth have I done to deserve this kind of punishment?

Sunday, 21 August 2011

The Importance of a Heartbeat


Today I was listening to my little baby's heartbeat on my Doppler and thought that I would share that precious sound, it is different from last time and I never got the chance to record my boys' and having twin heartbeats was thrilling.    

This time there is only one but as you listen you realise that it is no less special, my baby's heart beating over mine, much faster, much more sprightly, like a dozen galloping horses in my belly.  


It reminds me how important a heartbeat is really, I believe that most people can't fully appreciate just how much it represents until you the silence of the absence of one is all your left with.  

I do hope you enjoy it as much as I do, and for all those of you that as still waiting for that gift I offer this as a sign of hope.......against all adversity, bad luck and fear here it is, my beating hope....  xxx

Monday, 8 August 2011

A Normal Boring Pregnancy

I realise that the harder I try to relax the more I obsess on how little I am relaxing.  That is the quandary with this whole situation.  I am trying very hard to have a normal, boring pregnancy but I have nothing to relate to, nothing to fall back on, no idea what it means to not reach for the doppler or measure my belly or ponder as to whether my appetite is more or less than yesterday and what on earth that could indicate.

A normal, boring pregnancy?  Is that where you walk around with a certainty?  Without any concept that the end could end with anything but a little baby?  I think I felt that once, the ignorant bliss that caused us to argue over names, furniture, schools.  The runaway train that picked up speed with the passing days and weeks at the beginning as the excitement grew.  But what that means now, today, is not relevant.  It has no relevance at all to now, with what I've seen and what I know so I can never go back, undo, erase, sit back and enjoy.

Instead I obsess, and tick off the days, 147 days to go and there is still a heartbeat, the 148bpm are well within normal for a foetus of this gestation, I think I felt a movement, my appetite is no less than yesterday, I am drinking enough milk, I am mainly sleeping on my left side, I won't strain myself, my belly might not grow more each week, I still feel a little fatigued, I am getting a balanced diet.....I won't buy a single thing, not a single thing, I shall not be finding out the sex.

It might be alright this time, it might be a normal, boring pregnancy.....

Wednesday, 20 July 2011

Night and Day

I felt inspired to write today as the events have left me feeling immensely positive.  I had my 16+2 weeks growth scan today and was delighted to see baby wriggling, happy and an extremely good size.  

The EFW (Estimated Fetal Weight) is 157gm which is already more than Benedetto's birth weight, I just couldn't believe it after I checked, I was stunned poor little Benedetto he was so far behind.

The baby isn't just moving, like the boys did, this baby is positively having a ball in there no wonder why I have started feeling movements!  

In addition my blood pressure is normal and there are no other signs showing anything but good, good, good.

Then a series of co-incidences my dear friend sent me this poem; 

"Mummy, We're a thousand winds that blow. We're the diamond glints on snow. We're the sunlight on ripened grain. We're the gentle autumn's rain. When you awaken in the morning's hush, We're the swift uplifting rush Of quiet birds in circled flight. We're the soft stars that shine at night." 

I was speaking to the photo of the boys telling them that I know they are with me, I feel their gentle, reassuring presence.  They are the whispers at night and what assures this new baby that it is wanted, even when Mummy is sad.  I then glanced outside the window and saw this Daddy sparrow feeding this baby.  Today is a good day.  Thank you. x

Wednesday, 13 July 2011

6 months versus 15 weeks

I knew that the day would come that six months would pass and I would still be without my boys.  They truth is  that they aren't coming back and I will continue to live without them.  It has taken that long for me to really understand that, not so much the coming back bit (which would be a kinda miracle) but the living without them.  Everyday is just another day forward from that moment in time and I live with the memory of what happened and their still, silent faces in my head, its all I have.  I wish I had held them when I had the chance, I touched them and remember the softness of the skin but regret not giving them a final hug, I was too afraid.

I spent the 7th July on a beach wondering what it would have been like having twin boys in my arms, what they would be like now, how much they have grown.  Would they be weaning now?  I don't know, I still don't know many things about being a Mother except what it feels like to carry a child and to lose a child.



So I thought a lot about that all day and in return I became very aware that the feelings inside me were actually probably quickening from the new baby.  As if it was gently reassuring me that 'everything is going to be ok'.  I know I love this baby, that the capacity for love does grow or expand it just feels like with each new opportunity to love you discover a new piece of yourself, a new 'love zone'.  My love for this baby is already in a new zone to the love for my husband or the love for my twins and I do not believe that this is exhaustable.  The capacity seems as vast as the universe.


My hopes for today and everyday is that it will be ok.......

Friday, 24 June 2011

Life is full of Surprises...

.....And my best gift so far this year is to find that my little one is fine.  Just like the Angel cards I pulled the night before told me 'there is nothing to worry about' - that's what it said and it was true!
 
The scan allowed me to see that my body is protecting and nurturing, as it should be, and inside is my baby alive, well and growing.

There is nothing more I could possibly add because the relief is so immense.  I will probably remember forever that tiny moment as the gel was placed on my belly, as I lay there with my eyes closed in silent pray waiting for the words, and then - "there's the heartbeat, let me show you your baby, everything is fine" 

First trimester is over......there is still a long way to go.  12+4 days old......next milestone in four weeks.




Tuesday, 21 June 2011

Back and Beating......

"Where have I been?" I hear you ask.  Truthfully I have been sitting in 'denial' mainly, wrestling with my own consciousness and trying to reassure myself that it is ok to be here 12 weeks and 1 day pregnant.  Yes, I am pregnant - there, I wrote the word. 

Favignana, Italy. April 2011
My last scan was at 8+3 weeks and the words in the letter to from my Consultant to my Doctor were that I was pregnant with a 'viable' single foetus.  That was 4 weeks ago.  In two days I go for my 12 week scan and the last few weeks have taken me closer to madness than I was the first time I was pregnant, a roller-coaster of chaos.  

The self doubt is the main thing but there are flavours of other emotions that get thrown in; guilt, sadness, diffidence, joy, terror.....etc etc not wanting to recognise it as pregnancy for fear of jinxing it.  Strolling around work imaging that no one can see the bump that already protrudes in its 109cm of rotundness.

There is one baby in there this time with enough room, thanks to its brothers, leaving behind a palace of space so, as I endeavour to ensure I take my aspirin and inject myself with Clexane once a day, I have been willing this baby to make itself as comfortable as possible and to grow and to stay.  Do I still speak to my boys, absolutely, every day and I am still writing to them.  A cuddle with them would be amazing right now to remind myself that I can do this - I can do this, can't I?

Monday, 23 May 2011

Please Sign the Petition- Stop the Stillbirth Scandal!


In the UK, 11 babies are stillborn every day. And shocking new research, published last month in The Lancet, found Britain is ranked second from bottom: 33 out of 35 countries in the developed world for stillbirth rates. Countries like Australia – which have invested heavily in research – have managed to bring their rates down. In the UK, they have remained the same for the past 10 years. This is simply not acceptable.

Please.....if you haven't already please take a few moments to sign this petition.


I would really appreciate it......I am sure that my boys would too.


Tiny, Shiny, Secret Hope

Haven't been around for a while.  It have something I can't say to say.  Darn't say - not a whisper, not a hint.  

It is tiny, shiny, secret, beating hope. 

So I am still around, speaking to my boys daily but for just a little while I am not going to be writing too much here.  

 Not until I can......watch this space.  I will be back.


Thursday, 28 April 2011

Believe when it is beyond reason to believe

Today I wanted to take the opportunity to scatter a bit of faith amongst the doubt.  Traditionally the phrase above can be contributed to faith, faith is believing when it is beyond reason to believe.

Faith does not equal religion per se, though it can.  I stand by the idea that faith has to start with believing in one's self.  

Recognising that regardless whether or not destiny and fate are prescribed or already written, nothing is in stone and we cannot know what the end of our life story is.  

We stand side by side with all the other women in the world and we are equal, we are all women.

We still control the choices that we make, what happens as a result of the choices is somewhat more of a fuzzy area, but right now, right here Carpe Diem - we should seize the moment with both hands and make that conscious decision to do, whatever it is we need to do.  

How we find the strength to do that has to start inside, then we can slowly reinforce and fortify that with religion, friends and other influences around us.

I wrote this some time ago from T.S. Eliot and I shall post it here again today: "I said to my soul, be still and wait without hope, for hope would be hope for the wrong thing; wait without love, for love would be love of the wrong thing; there is yet faith, but the faith and the love are all in the waiting" 

Believe

Saturday, 23 April 2011

Barely There Bears

Yesterday evening I met up with her again and she gave me two tiny little handmade bears.  They can't be much taller than 15cm. 

They have 'Benedetto' and 'Vincenzo' stitched onto their tiny feet (I bet she wished I had chosen shorter names) and a little heart on the other.  They have tiny little blue hearts for belly buttons and she told me that when she made them she was very careful to cut them from the same piece of cloth but at the same time make them ever so slightly different.  My non-identical twins.

I was genuinely touched, there are still rare people in the world that will go above and beyond to be amazing and Becky stitched these little guys for me by hand as a gift.

So I am sharing them with you, they have taken pride of place next to my bed and when I am ready will go and sit with my boys......thank you Becky......

Wednesday, 20 April 2011

Due Date in Alternate Universe

I wanted to take the time out today to post to my blog as it is perhaps the only place, aside from me, that might remember that today was my due date.  Somewhere, sometime in some alternative universe I would have given birth to my baby boys today and they would be alive and we would be happy with our double car seats, iCandy double pram, cot etc.

Everything else I have dreamed about.  The other versions of my husband and I are currently sitting in a hospital, he is cuddling Vincenzo while I feed Benedetto, because he is smaller and more hungry than his brother, who is content to be snuggled up to Dad.  

Vincenzo is going to love football, probably support Roma, whereas already I know that Benedetto will always run to me.  

We laugh and giggle about how ludicrous it is for us to be sitting here with our twin sons, beyond our wildest imaginings and how I went to extraordinary lengths to ensure we go to Disneyland "Which of course we will have to do now" I giggle to Sabino, "because there is now absolutely no excuse not too".  Unless of course they both end up preferring Spiderman or the X-men, in which case we will switch Disney for Universal I decide.  That's me, aglow, proud, happy and delighted that I did it.  Did it for us.

We made our family and I got them here.  

But I have to back away from that universe and be sucked into my my version of 'present'.  

That present makes this event historical, already in the past, done, dusted, tucked away, packaged and boxed up.  So I navigated the day at work strongly aware that no one else would remember, or realise. No one did,  like a dirty secret that you can't tell because you get that look again, the forced sympathy and the heart-felt words that people are always compelled to say whenever you mention it.

Yesterday I attended an event in London, Earl's Court and walking up to that place reminded me that the last time I had approached the building it was in desperate excitement for the Baby Show and all the wonderful 'twin things' we were going to buy.  There I was standing looking at the signage for IT Support show thinking that this was not how I envisaged 19th April 2011 being.

At lunchtime today we toasted to better times but in my head I was toasting to my boys - beautiful and giggling with the 'other me'.  

Tonight I went to go and kiss the photo I have of my little men and found myself staring at the bin in the spare room next to a Memory box and cuddly toys.  It is filled will used Ovulation tests kits, and for the second time in two days I thought to myself that I had never dreamed back at the beginning that my life would become this.  

I don't know if my husband even remembered, and didn't want to remind as I know it still upsets him so.

Regardless my wishes to them are to say "Happy Dueday my two little principi you must know that I was thinking of you" :)