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.....