Father's Day

My husband has been quiet about father's day.  It's difficult that it's so close to Griffin's birthday and he isn't in touch with his own father.  It feels like he's missing out on both sides.  We were at church today and the sermon was on the theme of Fathers day, like we didn't get enough of it in all the shops, but this was on the difficulties of dealing with Father's day.  So many people have issue with the day, those who have lost their fathers or have difficult relationships with them.  I do think it's good to have a day to honour Fathers but it's tough on alot of people for alot of different reasons.


We are still trying to figure out what to do on Friday, we have both taken the day off.  Last year we went to Hampstead Heath with some friends and flew kites but I don't feel that it's right this year.  We might go to the beach for the day or go for a picnic in the park.  If the weather is miserable we might just stay in bed and get pizza delivered. whatever we do we will be honouringou r son by being together and thinking abouthim.

Hospital

I suffer from ulcerative colitis.  I've hardly been in remission since I was diagnosed 15 years ago but I thought I was doing really well until they decided that my medication was at a high risk of causing liver damage because of the silly way my body metabolises it.  So it got changed and I got a really bad flare up and was in hospital for over a week.

I have to say that out of all my hospital visits it was the most pleasant.  There was NO queue at a&e (that was quite shocking with it being a bank holiday weekend but I guess the DIY accident prone crowd aren't as active in central London) and I was in a ward within 2 hours of walking in the door.
I did feel a bit like I was in an episode of House, as the attack came on so quickly they decided that I must have had an infection, then as my blood work was coming back still squiffy it must be some sort of virus.  So 2 days of IV antibiotics followed by 6 of IV steroids and the start of a course of anti-virals before they decided that the underlying cause probably didn't matter afterall so just to stick with the tried and tested steroids until my flare was under control and I could go home.
They put me in isolation for the first few days, which was quite nice but I was glad to be in a ward with people to talk to.  Unfortunately the old lady in the bed opposite me died in her sleep that first night.  She was meant to have gone home that day.
I'm feeling that this is not sounding as pleasant a stay as I innitially intended it to but I really needed the break.  In hindsight, I probably hadn't recovered from being ill over Easter.  The year 13s were coming up to their exam so I really pushed myself to be at work before I should have and kept going through the side effects of my new meds.  Being actually stuck in the hospital meant I couldn't feel bad about doing nothing.  I missed the exam in the end but as I had done all the prep the week before a teacher managed to cover me and it went well.
Still off work, my head is like cotton wool, feeling light headed verging on dizzy half of the time, hoping it's a side effect that will wear off soon.
Emotionally I've been a bit all over the place.  It just seems a never ending stream of drama at the moment.

To top it all off my gran is starting chemotherapy tomorrow.

Here's to a peaceful patch!

IComLeavWe

I have just started on my first IComLeavWe (short for International Comment Leaving Week), a monthly extravaganza of blog reading and commenting and connecting with people across the world.  Very exciting.  

Visit http://www.stirrup-queens.com/2012/03/icomleavwe-april-2012/ if you are interested in finding out more or joining in next month.

Seeing off the dregs of a horrid illness.  Was in bed for half my Easter holiday before discovering I had a strep throat infection, a lovely course of antibiotics and another week off work later and feeling much better but still REALLY tired all the time.

In the UK recently, there has been alot of research into vitamin D and it's suspected that the majority of Scottish people are deficient, turns out I'm one of them.  Just got the blood test results through and my levels are half what they should be!  This is with taking a multi vitamin daily and being a fan of dairy.  Reading up on it, it seems that vitamin D deficiency can cause all sort of bad things (several that I suffer from) including depression and liver problems.  With OC being a liver condition, I'm hopeful that fixing my vitamin D levels and tweaking my other medication (long story I haven't gotten into yet) could bring down my chances of getting OC again.  

Probably not, but the wonder of positive thinking will make me feel better about even trying again and it's something I can actually do something about now rather than just waiting and hoping.

I think it's my best ever reaction to a bad blood test result lol.

Headstone

We have come in to a small amount of money which means we can afford to get Griffin a head stone.  I thought it would cost a whole lot more than it does so we should get a short break away as well. :)

We've pretty much decided on a plain, black polished granite with gold lettering but are stuck on what the lettering should be.  It's for my Grandparents as well so I don't want to have anything too kiddie orientated.  We are not particularly religious but my Grandparents were devout Catholics so nothing too secular either.

I hate the phrase 'born sleeping' as I don't like to think of dead people as asleep, sleeping is not dead!

I'm figuring something like...

Here Lies

..... (dates)

and

.... (dates) 

Beloved Parents of

.......................................

.......................................

Great Grandparents of

Griffin

Born an Angel 22nd June 2010

Much Loved Son of 

............................................. 

What do you think?  All ideas are welcome.

Wasn't so hard when I decided to actually write something but feel I should round it up in some way.  It's missing something.

If you buried your child, what does it say on their gravestone?  

90%

My chances of getting Obstetric Cholestasis in a future pregnancy.  I'd conned myself into believing it wouldn't happen again.  Dwelling on the 60 part of the 60-90% chance of recurrence but last week we saw the specialist who told me in no uncertain terms that I should expect to have it again.

I was doing alright, we have been trying for another baby since the start of the year and we had a plan.  A loose trying not to put pressure on ourselves plan, but enough to feel that I was eventually moving forward.  Now I'm not sure where I am.

Can I really put myself through all this again?  I know they will be looking out for me, early screening, the specialist said.  Medication and early induction if it does reoccur.  I'm fortunate to be on the radar of the leading OC specialist in the country, not directly under her care but she will be there to do blood tests etc if my own consultant doesn't take it seriously.  Is it enough?

Can I live with myself if I don't give it another try?

Happy New Year!!!

Being Scottish, the new year never starts on the 1st.  One really can't start anew after a night of no sleep.  So today is it.

I got a bike for Christmas which ties in nicely with my resolution to do more exercise and to try and give TfL less of my money.  The cost of a round trip to work on the tube has gone up by 60p!!!!  Grrrrr...  It's too far for me to start off cycling to work (16 miles and unavoidable main roads) so I have something to aim for.  I'm thinking by the end of summer term would be realistic.

Christmas was alright really.  I had a couple of sad moments but mostly had a good time.  It was a much smaller scale event than normal as my brother couldn't make it and the extended family was scattered across the globe.  Mum was insistent on the whole Christmas dinner thing so there were masses of leftovers.  It was her birthday a few days later so we managed to get through most of it before coming home.

A good friend of mine has a 2 year old and I was never upset by him before but after seeing him this time I was devastated.  Before he was always quite a bit bigger than Griffin would have been but this time they'd both have been toddling about getting under the feet and being fed cake by the bigger kids (at Mum's birthday party).  I guess as he gets older the age gap will mean less.

Other new year resolutions are to cultivate my spiritual side (Starting with meditation, being able to turn my mind off from time to time would be good.)  and to see ideas through more.  I have so many unfinished projects.

Happy New Year and may 2012 be all you hope it can be.

xx

The Return

I hope.

I got so out of the habit of writing that it's tough to know what to write so I'll just go for it.

Today I am grateful for hope.

We had a discussion on hope today in a spiritual discussion group that I'm part of and it was really difficult to pin down what exactly hope is.  The difficulty was in separating it from faith.  We came to the consensus that hope is almost pre-faith. The thing that gets you through the dark when you have can't actually believe that all will be well, but really want it to.

By faith I don't mean in a specific deity or external being but more in yourself and the goodness of mankind.


        Dreams

Hold fast to dreams For if dreams die Life is a broken-winged bird That cannot fly. Hold fast to dreams For when dreams go Life is a barren field Frozen with snow.  Langston Hughes

I feel like dancing

It's been a good day.  I feel I have to write about it as all my days recently have been not so good and I feel like all I've written here has been a stream of misery.

Yesterday I had pre-cancerous cells removed from my cervix and it's been a long road these last six weeks or so since I got the original abnormal smear test.  Waiting for the colposcopy appointment (which did only take 10 days but they were a LONG 10 days) waiting for the biopsy results and then finally the big day where it all gets removed.  It's really quite gruesome but I won't give details.

We are on a month long sex embargo but I'm still on a slight high from the not having potentially fatal stuff growing inside me any more so I'm not worried about it for now ;)

I wasn't at work today as I had a friend visiting so we went to one of my favourite museums, (http://www.geffrye-museum.org.uk) then for lunch and some tea and had a good old wander round and a chat.  Then I met some work folks for dinner and a West End show (39 Steps which is hysterical and extremely well done).

So yeah, things are on the up.  For today at least.

Moving on??

Hey folks,

I've not been around for a while.  I've had a really hard time these last few months, various shit going on that I've just not been able to write.

I'm currently lying on the floor in the room where Griffin died.  On the floor because the bed is in pieces ready to be moved out.  Probably the very last time I'll be in the house.  It's strange.  This is the longest place I've ever called home.  My mum lived here for 4 years and I did on and off too due to ill health on both my and my mum's side.  Then she moved out and couldn't sell cos of the property crash so was renting it out.  When Griffin came along we moved in, for the grand total time of 5 weeks before I ran, grieving to Scotland and back to my family.  This was just over a year ago and I've been back several times in a handy-girl role for the tenants.

The first time going back was tough but as with most of the steps on this road post Griffin it was the anticipation that was worse than the reality.

I wasn't sad about the house sale, until today.  I've moved so many times in my life what's once more?  But this one is different.  I just spent half an hour crying.  I am sad about the flat but mostly because it's the last tangible thing I have from my pre-Griffin life.

I don't like leaving him behind.

The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.

On My First Son

On My First Sonby Ben Jonson


Farewell, thou child of my right hand, and joy ;
    My sin was too much hope of thee, lov'd boy.
Seven years thou wert lent to me, and I thee pay,
    Exacted by thy fate, on the just day.
Oh, could I lose all father now! For why
    Will man lament the state he should envy?
To have so soon 'scaped world's and flesh's rage,
    And if no other misery, yet age!
Rest in soft peace, and, asked, say, Here doth lie
    Ben Jonson his best piece of poetry.
For whose sake henceforth all his vows be such
    As what he loves may never like too much.

Please Vote

OC Support is up for charity of the month this month and it could mean a £200 cash injection.  To put this in perspective, it's enough money to run the help line for 18months.

If you could spare the two minutes it takes to register and vote it'd be much appreciated.

http://www.easyfundraising.org.uk/blog/cause-of-the-month-shortlist-2011/

Thank you

http://lifepoststillbirth.blogspot.com/2011/06/not-rare-condition.html

Also if you would like a mention on my memorial page please let me know.  It's looking a bit sparse at the moment.

For Griff

It's almost like you never were
and all a big bad dream
If only I could waken up
but then you'd not have been.

I couldn't wish your life away
however short it was
and that's the trap I'm living in
because there is such hurt

The hurt and pain won't go away
I don't want them to
When the story's said and done
It's all I have of you

My heart is still in tiny bits
it's often all I feel
I say again, again again
How can this be real?

Hormonally Sound

It's official.  My hormones are in lovely balance.  I'm not early menopausal, don't have PCOS, am ovulating alright and don't have high testosterone or low estrogen levels.

So why am I having such irregular (and stupidly long) cycles?  It's a mystery.  I'll be getting a scan at some point in the next few months but my GP doesn't expect it to reveal anything.  To be honest, I don't think she'd have sent me for a scan if I hadn't had a loss.  Not this early in investigations anyway.  She seemed rather unconcerned but I guess that's how they stop patients from getting stressed unnecessarily.

I'm concerned.  Maybe that's part of the problem.  Living under constant stress can put one's cycle off and living without one's child is pretty damn stressful so maybe it is just stress.  I am happy that there is no problem there but it's frustrating that my body isn't behaving itself for no apparent reason.

These last three weeks have been so long.  Since Griffin's birthday, it feels like the days have dragged, but I don't know where they have gone.  It feels like forever and no time at all.  In fact it all feels like forever and no time at all.  I guess that's normal because I've read similar in other blogs.

I don't know what to make of it all but the anti anxiety drugs I started a couple of weeks back have started to kick in so I'm hoping my anxiety and stress will reduce to manageable levels and I can actually think straight.

On a lighter note I heard a guy in a cafe telling a child (about 9) how he wasn't going to be allowed sweets in the house any more when his little brother was born because they wanted to teach the younger one that raisins were sweets.  So the older brother would have to go outside to eat sweets and to hide them in the bottom of his bag if he had to bring them in the house.

I couldn't help but draw the comparison to smoking, obviously Haribo is the new drug that all the cool kids are doing.

Now What?

A year...

I did think that I was doing well in the lead up to Griffin's birthday.  I cried a bit the day before but on the actual day, I felt ok.  Sad but also that I'd come so far that I thought I could put one foot in front of the other and keep on moving forward.  However, I'm slightly falling apart.  I had a really destructive turn on thursday (b-day+1) where I got really (really really) drunk and it must have brought something up because I've been off ever since.

To the point that I went to the walk-in mental health unit for help.  They were really good.  I should be getting counselling in the next few weeks and they said I can go back whenever.  I'm feeling a bit better by the mere fact that I've taken action and someone unrelated to me is taking how I feel seriously.

It's such an anti climax.  There's not much else to say.

Angel Day

I never contemplated the possibility that my baby might die.  Even when I'd been told about having obstetric cholestasis, it was under control.  There was another couple of weeks before I was in the 'danger zone'.  I was taking the medication and scheduled for induction at 37 weeks.

I was worried about having an actual baby to look after, I was getting really stressed that I hadn't packed my hospital bag yet and about how I didn't have a car seat so I wouldn't be able to get him home.  I'd put off buying things cos I was overwhelmed about what to buy and was worried about spending too much money on stuff.  I was worried about the pain of labour and if I'd be able to breastfeed.  You can imagine the things I worried about but never at any point did not having a live baby.

Even at the point of being at the hospital, one midwife had been concerned about his heart rate, being whisked in for a scan and them saying that his heart didn't sound right.  Even when I asked if I should phone my husband and get him in and they said yes.  Being rushed down to labour ward.  I did think that they'd be taking him out quick smart but that he'd be alive.  I was really worried that he'd be ill, that he wasn't ready to be born, that he'd have to be in SCBU.  My baby sister was born dead at 29 weeks and resuscitated and is a happy healthy 10 year old now.  Babies don't just die.  Otherwise healthy babies don't just die.

I feel naive, that I should have realised that he was dead.  How can I have a dead person inside me and not know?  How could I not realise that I was having contractions for hours?  Even before I left the hospital that morning where I had been for a blood test I was already in labour.  If I had stayed at the hospital or said something I might not be writing this now.  I might be preparing for a first birthday party with baby sick in my hair.  A little ginger monster toddling around and not sleeping for days on end.  I was so worried about not being ready for a small person but I was so much more prepared for that than this.

So now I commemorate his all too short life on the anniversary of his death.

See you in heaven wee man

Fathers Day

Fathers Day is less of an issue in our house than Mothers Day was.   As my husband says, 'i don't need a manufactured day every year to tell me i'm a dad'. He's not one for Hallmark Holidays.


He didn't see his father growing up so Fathers Day was never an aspect of his life until this year.


I also feel that it's eclipsed by its proximity to Griffin's birthday.


My dad didn't go in much for Fathers Day either so I figure we'll manage this one fine.

No More Firsts

Coming up to Griffin's birthday, the thing that gets me is that there are no more firsts.  Just seconds, thirds, fourths and so on for forever.  I feel like this is my last real chance to be allowed to mourn him.  After this there's nothing new.  Having dealt with it all once I should be able to manage it again.

It's been such a long long year, I can't believe it's only been a year but it's hard to comprehend that it's been a whole year without my baby.

I have the 21st (the day he died) and the 22nd (his birthday) off work, as does hubby.  We had real trouble deciding what to do for his birthday but have decided to fly kites with some friends in the park, have a picnic dinner.  On the 21st we are going to the local Sands group.  We haven't been yet, always putting it off or been working or busy in some other way but with this timing I think we have to.

We live too far from his grave to make a trip there.  To be honest I'm not sure if I'd want to.  I haven't been there since the day after the funeral.  I know he's safe and the grave is tended but I don't need to go there to know he's not here any more.  His constant absence is stronger that anything I could have imagined.

I was at a meeting this evening and a woman was mentioning that she had no time to herself as having a baby is just so constant.  My automatic response was 'well so's grief' with a shot of venom and jealousy for good measure.  I didn't say it but it was definitely loud in my head.  I don't like these responses in myself.  I had only just met her and she didn't know about Griffin.  Even if she did, it is constant having a baby and in that instance worth a mention.  I'm feeling much more sensitive about it all at the moment.  Hardly surprising I guess.

In a week, as well as mourning the loss of my son I'll be mourning the loss of his firsts.

By now we would have had a first word, first wave, first smile, first solid foods, first step, so many firsts I can't even imagine.

But now we have our final first, a birthday, anniversary, angel day.  I hardly know what to call it.

Not a Rare Condition

I had a comment on a previous post about my obstetric cholestasis(OC), about how rare it is.

This is a very popular misconception.  OC is not a rare condition, it affects 1 in 200 pregnancies.  This may sound like quite a small proportion but when you consider that roughly 1900 babies are born in the UK every day, it turns into quite a lot of people.  When you consider that it is routine to inject babies with vitamin K at birth which can prevent a brain bleed in 1 in 10,000 babies, we are prescribed antenatal vitamins with folic acid to prevent spina bifida which can occur in 1 in 1000 pregnancies, it seems unforgivable that OC, a relatively easy condition to control and manage, has such a low profile.

Having OC does not automatically lead on to a stillbirth, in a properly managed pregnancy the risks of stillbirth are the same as in a non OC pregnancy.  The important bit of that sentence is 'properly managed'.  If you do not know there is a problem you cannot take it to your healthcare professional and you cannot be 'properly managed'.  If your medical team ignore your concerns or are unaware of up to date research in the area, it cannot be 'properly' managed.

All the baby books and sites say that itching in pregnancy is normal.  It's the skin stretching.  It could be a symptom of a very rare condition that causes itching but will subside after birth.  (Lets play down the risks!!!)

The problem with OC is the lack of knowledge about it.  I have heard stories of women who have scratched the skin raw because of this itch and doctors have point blank refused to do the simple blood test that is required to diagnose it. 

They don't know why it causes stillbirth.  The stillborn babies have no detectable problems.  They just stopped living. In a post mortem it comes up as 'unexplained death'.  As they cannot as yet determine why OC causes stillbirth there are some people still (I'm talking consultant obstetricians here) who do not believe it does.

http://www.ocsupport.org.uk/   For further information.

Remember scratching can be more than just an itch.

Why do they ignore Unsubscribe?

How on earth am I STILL getting baby related emails?

I unsubscribe to every single one I get and have done for almost a year now.  Do they just ignore you?  There have been some that I emailed and explained the situation and yet I am still receiving them.  It was really upsetting for the first while but now I just get angry with them.

Bah!!!!