Jeremiah's due date

Sometimes I acknowledge this day and sometimes I don't.  Well actually it was yesterday but Simon was on the computer yesterday evening when I remembered what day it was.  7 years ago I was 40 weeks and 1 day pregnant with Jeremiah.  I'd been in latent labour for a while by then, nearly 2 weeks I think. 

With Eleanor and Elisha, their due dates seem so important because they are their "should have been" birthdays.  With Ezekiel, his due date will be used on growth charts and for his operation dates for the first year of his life.  He will have 2 ages, his actual age, based on his date of birth and his corrected age, based on his due date.

For Jeremiah, Isaac and Malachi, their due dates don't seem to matter at all.  I never expected them to come on their due dates and none of them did.  Although Malachi came fairly close, arriving at 40+2.

Recently I was talking about due dates with Jeremiah.  I was trying to explain to him that Ezekiel was unlikely to come on his due date (didn't think he'd be that far off though!) and telling him when he, Isaac and Malachi were born.  He was shocked that he was born at 11 days past his due date and very impressed that Malachi was only 2 days past his.

Ezekiel Matthew

At 9:47am on 3rd June 2005 I was waiting for a scan that would tell me whether my first child was going to live or die.

At 9:47am on 3rd June 2013 my sixth child, Ezekiel Matthew was born by C-section at Musgrove Park Hospital, Taunton, over a month early.

Most people who know me know that I don't usually do C-sections, or early babies.  I'm more of a natural, overdue, just under 9lb baby kind of person.  But sometimes things don't go according to plan.

I had a lot of waters and last Saturday morning they broke in a rather spectacular fashion.  Despite this being my 4th pregnancy to get this far the midwives wanted to check they had gone so off we went to hospital.  They weren't sure what position Ezekiel was in as they could feel what they thought was a head but they could feel feet as well so they thought he might be breech.  So I was scanned and he was head down, although slightly to the side and one of his feet was by his face.  I still had a lot of water and he had a lot of space to move around.  I couldn't deliver him naturally like that and we had to weigh up the risks of waiting verses doing something.  In the end it was agreed that I would need a c-section but not yet.  So I had steroids to develop Ezekiel's lungs and we did a lot of waiting around and being nil by mouth while emergencies came up, people were bleeped and plans were changed again and again.

Finally on Monday morning I was taken to labour ward.  Simon donned a very fetching set of scrubs and we went to theatre.  Between them, Simon and the anaesthetist took loads and loads of photos.  The surgeon was the same one who did my operation to remove Elisha and had been Ezekiel's consultant since we found out about his cleft lip.  Ezekiel was born shouting but while I was being sewn back together he started to have breathing problems so after letting me have a very brief cuddle he was taken to neonatal intensive care.  I was taken back to labour ward and sent Simon down to the neonatal unit to see what was happening.  I couldn't go and see him until the spinal wore off which was extremely frustrating.  Jeremiah, Isaac and Malachi came after school and I finally got to go down and see him.  The next day I could walk down whenever I wanted which was nice but being on the postnatal ward was awful.  I was discharged on Thursday but Ezekiel is going to be in hospital for at least another week.  He has Isaac and Malachi's paediatrician looking after him so he is in good hands. 

Simon holding Ezekiel in theatre

 

Ezekiel

 



Quick cuddle before he went to intensive care

 

Ezekiel in intensive care a few hours old

 

Ezekiel on day 5 in special care



Long time no blog

Just realised I haven't blogged in over a month.  So here is a summary of what we've been up to.

Isaac did his nativity play at the church with the other children in the reception class.  Much to my surprise (and the teacher's too, I think) he went on the stage with the other shepherds with a huge grin on his face and a lot of waving in my direction.  Timmy the sheep came too, which helped I think.

 

 

We remembered Elisha, born to soon a year before and Eleanor who would have been 7 at around that time too.

 

Christmas came and went with the usual excitement and chocolate consumption.

 

Followed quickly by Malachi's 2nd birthday.  Two years have gone by so quickly.

 

Then the snow.  Jeremiah and Malachi loved it, Isaac wasn't too sure.  Malachi, always wanting to join in with the big boys, insisted on going out in the snow and walking round the garden holding my hands.

 



 

This little one is just starting to walk.  Plodding along with an intense look of concentration on his faceand then falling on his bottom after a few steps.  He is getting there, slowly but surely.

It's been a while

We've just been plodding along as usual, counting down the days until half term.  I phoned school transport and was told that Isaac is not disabled enough to qualify for free school transport but if I send them letters from Simon's employer (saying he is at work at school run time), my GP (saying that I can't walk 9 miles a day pushing Isaac in the wheelchair and carrying Malachi) and Isaac's paediatrician (saying that he can't walk to school) along with copies of the DLA award and blue badge then they would consider it.  I'm not sure if it's worth it to be honest.  But it's only a few letters and a bit of photocopying says the lady from the school transport office.  Yes, added to the other "only's" that I have to do whenever Isaac needs anything.  So far I have phoned the paediatrician who is on holiday and made an appointment to see the health visitor which we had to cancel because Isaac was poorly.

In the meantime we found out that breakfast club is only 70p per day so now Simon is taking Jeremiah to that every morning and I am taking Isaac on the days he is in and collecting both of them.  So now one of my children is always on time for school.  Isaac now has ear defenders for school to try and block out some of the noise.  He took them to school for the first time today so hopefully he will have a better morning than he has done.

Isaac was in the local paper this week.  A photographer went round to all the reception classes in Somerset and took a photo.  So here it is, 15 happy smiling children, and Isaac in a strop.

http://somerset.newsprints.co.uk/view/22486829/st_johns_wellington_recepti_jpg

And Jeremiah's one from 2 years ago, because I'm having a nostalgic moment

http://somerset.newsprints.co.uk/view/16075019/stjohnsreceptionsgwk41_jpg

15th October marked the end of baby loss awareness week and as is tradition we lit Eleanor's candle at 7pm for the international wave of light.  I dithered about whether to light 2 candles this year but I couldn't find one or think of an idea to make one that felt right for Elisha so we just lit the one that we usually light.

Isaac finally told me why he didn't like school.  Apparantly it's too noisy so he is now the proud owner of some ear defenders.  So now he is happy although the teacher is having trouble getting him to take them off when she wants to talk to him.  And he is even more unwilling to play with the other children in his class.  According to him, Jeremiah is his best friend and he doesn't need anyone else.  Not sure what Jeremiah thinks about that!

Malachi is at that in between stage, more toddler than baby now and cruising round the furniture.  He has a cold so he is back on his inhaler again.  He has also learnt to take apart disposable nappies so he is back in cloth nappies for the forseeable future.  He doesn't really have the right shape for cloth nappies as he is very short and rather chubby so finding nappies that fit under his trousers is a challenge.  His 9-12 month trousers are a bit long anyway so we can't get away with moving up a size to accomodate his nappy.

Letter from a 9 year old with Ehlers Danlos Syndrome

This letter is from a 9 year old who has Ehlers Danlos Syndrome and is trying to raise awareness.  Ehlers Danlos Syndrome is what me Simon, Jeremiah, Isaac and Malachi have and most likely Eleanor and Elisha as well.  It is the reason why Isaac uses a wheelchair and Malachi has reflux.  Maddison explains Ehlers Danlos Syndrome a lot better than me so I will hand over to her.


Dear World,

My name is Maddison Parker, I am 9 years old and I have Ehlers Danlos Syndrome. I am wanting the world to understand Ehlers Danlos Syndrome so am sending this email out. I have some questions for you all! I would like to know why no one cares about Ehlers Danlos Syndrome? May was Ehlers Danlos Awareness Month and no-one really cared because I didnt hear anything about it anywhere! My grandma even sent a letter to A current Affair telling them it was the awareness month and again, nothing happened, they didnt even reply!!

A week in my life is full of pain. I'm constantly heating up my heat pack, and needing pain medicine. At school i cant finish my school work because Im in so much pain and all my joints dislocate. In case you dont know Ehlers Danlos syndrome is a connective tissue disorder that makes all my joints flexible, and pop out for no reason. It makes me very tired all the time, I cant play with all my friends because when I run around my joints pop out and it hurts and I get really tired. It doesnt just make my joints pop out but it effects my balance, my eyes, my heart, tummy, skin and even my blood. It is a really painful thing to have. It's not fair!

Im in and out of hospital and my wheelchair. I dislocate my joints every day and have pain all day every day. If I break a bone it takes me 3-4 months to heal when a normal person only takes about a month to heal! And my muscles disappear when the bones heal.

Im sick and tired of everyone saying there is nothing wrong with me because I look fine and that its all in my head. For lots of other disabilities you are trying to raise money to find a cure. But NO, not for Ehlers Danlos Syndrome. As I said before, I am in and out of hospital, I know every corridor of the childrens hospital and the sunshine hospital. Even some of the doctors say "You again!" So I want to know WHY arent you trying to raise money to help cure my Ehlers Danlos Syndrome???? The doctors dont know much about it and cant really help me.

If I could change one thing about the world it would be the way people understand Ehlers Danlos Syndrome! I want to know WHY no-one cares and WHY no-one is trying to raise money to find a cure! WHY don't I matter??

From Maddison Parker

Update on us

This week we have been ill with colds.  Isaac has been even more exhausted than usual.  Malachi woke up on monday wheezing and coughing which of course triggered his reflux.  Malachi's reflux is caused by his stomach muscles being floppy rather than actual acid and now his weight is ok the drs are reluctant to pump him full of drugs that don't do much anyway.  But I thought the gp might be able to do something about his cough/wheeze so Simon took him to the gp and they came home with an inhaler and he had a session with a nebuliser at the dr surgery.  The GP thinks he has a virus which triggered an asthma attack.  We need to give him the inhaler until the virus goes away and bring him back to the GP or call the out of hours GP if he gets bad again.  I'm hoping this will be something that's a one off or he'll grow out of it rather than adding something else to his ever growing list of medical problems but we'll see.  I know mild asthma isn't a big thing but Malachi already has 4 not very big things going on.

I've recently discovered how to check how many views each post on the blog gets.  Most posts are getting 1-3 views but the one about Eleanors anniversary got 7 I think and the one about Isaac using a wheelchair in tesco got 17.  I have no idea why these 2 posts were so much more popular than the others and I'm curious so anyone who read those ones and not the others feel free to comment in the box to satisfy my nosiness.  I'm also wondering who the 17 people are who read the wheelchair post.

 My idle wonderings are mostly due to being on hold with the tax credit people for nearly 2 hours and not knowing how to use the speaker phone.  I'm trying to do my tax credit renewal and I dread to think what my phone bill will be.  I've just had to hang up so I can get Jeremiah from school so will have to do the whole thing again later.

7 years

since my precious first baby was born at 12 weeks and 1 day.  I always thought miscarriage happened to other people, older people mostly.  But 7 years ago I found out it could happen to anyone, even me.

Elisha Matthew

Elisha Matthew Pickard was born on 23rd December 2011 at 13+2 in Musgrove Park Hospital, Taunton.  He measured 19mm long.  He had joined his big sister in heaven at about 8+4

wave of light

Eleanor's candle burning for the international wave of light 2011