First day off work today...

So today is my first day off work. Went to the docs on Tuesday and she signed me off until Nov 5th (start of term 2 at school) but wants to see me in the half term holidays (I'm away in Croatia actually, so can't!) to renew my sick note until Christmas/January. 

Feels strange but I know it's the right thing.

I had Isla on 13.7.12, the last week of the summer term. Her funeral was on 30.7.12 and then we went to France for a week. When we got back, we only had 3 weeks until school started again but I'd already told them I'd be going back in to teach my new class. 

Well, I lasted 4 weeks! It was so hard to be there. My brain just doesn't function properly yet. I have no confidence in myself and have such an awful class I'm constantly shouting and repeating myself, which is incredibly draining. At home, we're trying to move house (sale been going through 6 months now so is very tiring too!), have the follow-up consultation and PM results on Monday and my due date is the 18th October. All these things, I just need to get through. And this Friday is when I was due to stop working anyway for maternity leave. 

Am seeing my counsellors tonight and also going to a Big Noise choir I joined, so should be an evening of mixed emotions. 

Oh, and I also picked up my brand spankers Fiat 500 this afternoon! Photos later!

Coming up - Capture your Grief 2012

Another stunning project by Carly Marie is the Capture your Grief project, where you take photos through the month of October - Pregnancy and Infant Loss Awareness Month. I'm looking forward to this as I like photography! Carly has released details of the subjects for each day. They are: 

Carly adds more details about each day on the blog, so I must remember to check it out regularly!She also reminds me of the October 15th Wave of Light that will be going around the world at 7pm. What a beautiful sentiment - I imagine being in a space shuttle floating above the Earth, being able to see all the little lights rolling across the planet at their own 7pm's!

Prayer flag for October 15th Pregnancy and Infant Loss Remembrance Day

Inspired by the beautiful projects of Carly Marie, I posted a prayer flag to Australia today. I was very proud of it and it felt very special sending it all that way to fly on a beach in Australia with flags from all around the world. Carly is going to photograph each flag she receives before flying them on the beach she goes to in memory of her son, Christian. 

This is my flag for Isla...

The base cream fabric is the one I used for Isla's burial gown, the lace too. The heart is in the fabric I used for the dress I made and wore to her funeral. The bird houses come from the fabric I had chosen to make her nappy bag out of. And the bow is of the ribbon I tied her burial gown on with. A bit of freestyle embroidery and there we go!

I realise it looks like 'Islan' because of my swirly line but still! That's me, gotta make 1 cock-up per project!!

Midnight ramblings...

This isn't me. 
Our story was one of infertility and acceptance and great holidays together. 
Not a stolen miracle.

That's what it feels like. 
An out of body experience. 
I can't believe it was me who saw a positive pregnancy test or a baby wriggling on screen. 
Can't believe I felt her move or heard her heartbeat. 
And can barely fathom it was actually me that laboured and gave birth to a baby girl who had died. 
Its like I'm watching this stuff happen to someone else not me. 
In my real life, I'm supposed to be ok. Happy even. 
But that prospect seems impossible now. Happiness.

If this is my story, then happiness is what happens to other people. 
I'm watching this from afar. It's not really me. 
I don't impulsively buy a stupidly small car even if I've always wanted it. I don't book holidays without planning the ins and outs of all the practicalities. I don't get tattoos up my ribs because really I'm chicken and think it'll look weird when I'm old. 
So this isn't me.
And yet. 
It is. 

It really is me going through all this shit and pain and misery. I'm now the woman who had 4 years of trying only to have a stillbirth. 
Our miracle snatched away from us.
I can never go back to acceptance but I pray with all my might that I can go back to feeling happy again. 

But if it's a happiness without my own baby then I don't want it.

Saying Goodbye.... Exeter Cathedral

What a lovely day of remembering Isla I've had today.Saying Goodbye are a fab charity set up by Zoe and Andy Clark-Coates who've had 5 losses. The service today at Exeter Cathedral was the first of their series of services for lost babies - through miscarriage, stillbirth or in early years. 

There were beautiful songs, poems, hymns and stories. Even the priest's wife had had 3 miscarriages. We rang hand bells for the babies we have lost. I rang it once for Isla but it was heartbreaking to hear them chime so much throughout the cathedral. Even more so, seeing people ringing them 3, 4 or more times. What brave, amazing people. 

Also heard a lovely song by international singer Lara Martin called 'Soothe' - she lost her baby in early pregnancy and performed today. Her song is available for free download for the next 48 hours from her website: http://www.laramartin.co.uk/saying-goodbye/

Lots of tears have been shed today but it felt good. In a sad, heart breaking, emotional way, but still good. 

2 poems really tugged at my heartstrings - this first one really says it all for me: 

If  Tears Could Build A Stairway

 If tears could build a stairway
And memories were a lane
We would walk right up to heaven
And bring you back again

No farewell words were spoken
No time to say goodbye
You were gone before we knew it
And only God knows why

Our hearts still ache in sadness
And secret tears still flow
What it meant to lose you
No one can ever know

But now we know you want us
To mourn for you no more
To remember all the happy times
Life still has much in store

Since you'll never be forgotten
We pledge to you today
A hallowed place within our hearts
Is where you'll always stay.

This next one is more spiritual but still lovely:

What makes a Mother

I thought of you and closed my eyes

And prayed to God today.

I asked what makes a Mother

And I know I heard him say.

A Mother has a baby

This we know is true.

But God can you be a Mother

When your baby's not with you?

Yes, you can He replied

With confidence in His voice

I give many women babies

When they leave is not their choice.

Some I send for a lifetime

And others for a day.

And some I send to feel your womb

But there's no need to stay

"I just don't understand this, God.

I want my baby here."

He took a breath and cleared His throat

And then I saw a tear.

I wish I could show you

What your child is doing today.

If you could see your child smile

With other children and say

"We go to Earth to learn our lessons

Of love and life and fear.

My Mummy loved me oh so much

I got to come straight here.

I feel so lucky to have a Mum

Who had so much love for me

I learned my lesson quickly

My Mummy set me free.

I miss my Mummy oh so much

But I visit her each day.

When she goes to sleep

On her pillow's where I lay.

I stroke her hair and kiss her cheek

And whisper in her ear.

Mummy don't be sad today

I'm your baby and I'm here."

So you see my dear sweet one

Your child is okay

Your baby is in My home

And that is where she'll stay.

She'll wait for you with Me

Until your lesson is through.

And on that day that you come home

She'll be at the gates for you.

So now you see what makes a Mother

It's the feeling in your heart.

It's the love you had so much of

Right from the very start.

Miss? Why did your baby die?

The question I have been asked twice in the last week. 

"Mrs McKillop, why did your baby die?"

It tears me up but only because it's someone - a child - saying aloud the question that goes through my head every second of every hour of every day. 

Feel very sad today basically. It has been 2 months today since we lost Isla. I should be 8 months pregnant and going on maternity in 2 weeks. 

Work is so hard and I don't know how I'm going to keep going with such a difficult class. It's so difficult and draining. I find myself shaking with sadness at times and at others I feel so lost and confused I can't remember what I'm even doing.

Flowers for Isla - part 2

And then this is something I got 'done' last night in memory of my amazing baby girl - it's apple blossom flowers with forget-me-nots. 

It's also got a little star for my fabulous dad, who sadly passed away last year. 

I'm so pleased with it and am really proud of what it stands for. She will forever be with me now in a very visible way. 

Flowers for Isla part 1

Gabriel's garden pick beautiful flowers for babies and children who have left this world. Each flower picked represents one very special child. The flowers are photographed so parents can forever be reminded of their child's everlasting beauty.

The lovely lady who does this believes that our children are watching their flowers bloom in Heaven, and that it is them who guide her to the most spectacular flowers.

This is the flower she has chosen to photograph and release for our little Isla. 

 http://babyangelgarden.blogspot.co.uk/2012/09/islas-flower.html

She also does baby block pictures - how cute is this?!

To blame or not to blame... that is the question...

Having emailed PALs (the Patient Advisory Liaison team) at the hospital about my pregnancy and what happened to Isla, I received a reply from the head of midwifery. 

I met with her the very next day (last Tuesday) and went fully loaded with research documents, medical journals, graphs and statistics, as well as my own record of notes and phone calls made, with dates etc... 

She started the meeting by stating her condolences which I gratefully received. She explained that she has already been looking into our case, as they do with all stillbirths, by looking at my (very lengthy!) notes. She had concerns that she'd already broached with the relevant midwives with regards to what she had read in my notes, but she was greatly concerned by what I emailed about with regards to being told 'No' for the parvovirus immunity test.  

And then came an immediate shocker - she was appalled to read that I was told 'no', as it is the practice of midwives and GPs in the Trust to give all women in high-risk positions the immunity test. She said that she has looked into what technically constitutes a 'high-risk' person but agreed that a primary school teacher was certainly that. I explained that I had told my midwife my job and explained how worried I was about it, knowing someone who had lost their baby to it. I told her that midwives in some parts of the city were indeed giving the tests to teachers, but that my concerns had been poo-pooed over the phone. I showed her the evidence that showed that 2012 was an epidemic year and that the South West was having its worst epidemic ever. And I showed her the RCOG Alert that was sent to all trusts warning them about the parvovirus epidemic, which she agreed had been seen by staff. She said there is a professional expectation that the staff will keep abreast of such things also, but that they were in fact told to give the tests to those at risk. No questions asked! She said she'll speak to the midwife about this specifically. She was also hugely concerned about the second midwife who commented that she'd not really heard of it before and would need to go back and look it up. She will also be speaking to her about that as that is a problem too. 

She said she'd already spoken to my midwife about the events of the day before we lost Isla, when I went to her about my feet and lack of urination. In my notes there is very brief detail. She was shocked (again) to hear that I had specifically mentioned the rapid weight gain, lack of urination and severe bloating at both my 24 week appointment with midwife number 2 as well as the drop-in appointment the day before we lost Isla. She said  it should have rung alarm bells on both occasions, certainly about the weight gain and even more seriously about the lack of urination - even a urine infection can be dangerous for a baby. Although she did say that, having sat down with my midwife to go through the events of that appointment, she hadn't mentioned the lack of urination or weight gain (it wasn't written in my brief notes), and they had come to the conclusion that not admitting me was fine. Had she considered the weight gain and lack of urination better and admitted me, who knows. I explained that it seems reassuring at the time to have your worries allayed but in reality, it was dangerously dismissive and had they not been so, they could possibly have saved Isla her life and me the pre-eclampsia.

I am adamant that I don't want other women to be dismissed so easily, certainly over the phone. Midwives need to know more about parvovirus and they should be testing women as standard or at least those in high-risk positions or those that ask for the test. I am sure that had they taken me more seriously, that Isla would still be here and that breaks my heart, it really does. If they'd scanned me when I was in hospital with a bleed at 22 weeks, they may have caught the hydrops, or certainly at 24 weeks they would have. If they'd sent me in for monitoring on the Tuesday, would it have been too late?

She asked if we want to formally complain. I said that 7 weeks ago I'd have been lawyered up and on to the press, but I need to move forward with my life. But then, when I told Dan about the meeting - he has been very non-blaming since the start - he got really angry and thinks someone should pay. She said she'll write everything down in a letter for us when she's talked to the midwives again, and then we can decide whether we want to make a formal complaint or not. She seemed to be ready for me to complain and seemed also to understand why I would want to. 

I just need to know it won't happen again and that the midwives won't be so dismissive of concerns or the signs and symptoms of such dangerous things - YES, PRE-ECLAMPSIA CAN HAPPEN THIS EARLY ON! I was showing signs at 24 weeks, possibly a mirror-syndrome of Isla's illness, yet no one took me seriously enough. I need them to have learned a lesson, because I've certainly learned a good few million - never take the reassurances of others, even medical professionals, over your gut instinct. That has cost me my baby girl and the sadness of that will ache in my soul forever and ever.