Saturday 29 May 2010

I'm a freak, I'm a weirdo

As mentioned before I am on a forum for mummies, mostly English, who are having babies, or have had babies. Sometimes I feel like a total freak! One of the mummies had posted about what to take to hospital for her baby, and had listed 5 nappies. Straightaway everyone was saying "oh that's not enough, baby might have 3 changes before she leaves delivery to go to post natal".

Well I thought 5 nappies was ample, in special care, especially in the early days, they change nappies at 6 hourly intervals. Nappy time is called "cares". So 5 nappies is a day and a bit!!!!

And hats! This mummy was advised to take at least 2. Joseph was born in a hat I think! His first weight was 1lb 10z but this was with a trachea tube and a hat, corrected weight (sounds like a racehorse) was 1lb 7oz. You can't buy a hat for a 1lb 7oz baby at Tesco or Boots or even Mothercare! Lovely old ladies lovingly make tiny hats and helmets for our precious bundles, and donate them to special care.

Joseph wore only a nappy and a hat for 6 weeks, so no need to go out and buy loads of vests and babygrows. I did have to go and buy stacks of nappies once he'd grown out of the teeniest ones. It used to really annoy me (and still does) that the micro nappies never ever go on offer, You can get newbaby on 3 for 2 quite regularly. Now I know micro nappies are pretty specialist (though they are a Pampers product) but really, the only people buying these are those whose babies are small or sick or both. Tesco apparently do own brand premature baby nappies, but none of our stores stocked them, and refused to get them in for me. I had no time for internet shopping.

One of the mummies to be on our forum who is training to be a midwife, said she feels its up to the parents to provide for the baby from the word go. Which is totally right and correct.

But when your baby is born 13 weeks, or 10 weeks, or 8 weeks early, that's a lot of extra expenditure, at a time when you may be in a financial bind. Maternity pay starts at the day of birth. I thought I'd work (or be on paid sick) until the middle of July and then go on maternity leave for the last 3 weeks of my pregnancy. But no, because Joseph came so early my pay abruptly stopped.

My husband had to go back to work, so I had to catch buses to and fro. There was absolutely no financial assistance available and my expenditure was sky rocketing. I had to pay £50 a month for my bus fare, I have no idea how much nappies cost me, I had to pay for lunch and coffees and water. On special care there was no access to drinks, although if a nurse had time, she would fetch some water for me.

And we were incredibly lucky really, because I had private health cover I got a rebate for being a public patient, and so did Joseph, so we knew we would get a cushion to help us, once it was all over, but so many families do not have this.

Which bring me to a question, should there be more financial support for families who have a baby in special care?

Thursday 13 May 2010

One is the loneliest number....

When we got married, people were forever asking when were we going to start a family. Being the blunt Aussie that I am I'd grin and say "well we're having sex without contraception we'll see what happens eh?"

Neither of us was expecting much. I'd had miscarriages and various female problems, and I'm on the *ahem* larger side, so I honestly thought it wouldn't happen for us. And that was ok. But much to our suprise, we got home from honeymoon, got back into work, and bang! I fell pregnant with Joseph.

To be honest, I thought I would have had my first child by 26, not 36. I thought I'd have a flock of children, at the very least 2.

So now, the questions are starting again. "When will Joseph have a brother or sister?"

After Joseph was born we went to see the very kind consultant who would have done by regular appointments in the third trimester, I had met her once previously. Sitting in the waiting room was hilarious. Follow up consultations are done in Antenatal, so there I am 7 weeks after Joseph's birth, sitting in a room full of pregnant women. And I should have been pregnant too.

I saw three of the doctors who were involved in my care. Each one came and gave me a massive hug, turned white and said "um, what are you doing here?" Grinning my husband and I both looked at them in turn and said "follow up, its ok, we've not gone again!"

Dr P called us in and we had a chat. She explained what had happened and asked the question. "will you be having any more children?" I smiled and said "80% no, and 20% maybe". The look on her face was priceless. I rescued her "Your looking at me like that would be a really bad idea", she then went on to say that she didn't want to tell us we couldn't have any more, and that it wasn't her place, and if I wanted more children she would work her butt off to get me to 30 weeks.

"oh nooooooooooooooo, if we'd be better of getting a dog just tell us!" we both said!

So the decision was made. I feel like I have had a complete miracle. Joseph could well have died, or be disabled. At the very least we were told that he would have lifelong feeding problems, and chronic lung disease.

We have a very well, very happy little boy In their first year, babies are meant to get 14 colds a year. Joseph has had three. Like the song I posted yesterday "looking at you know, you would never know".

I feel like other people deserve miracles. Maybe there's only so many to go around, I don't know.

I do know I couldn't see another child like that, with wires and machines, undergoing medical procedures, looking so tiny and scared. I could not have another baby that I wasn't allowed to hold. That is the singlemost difficult thing about special care. You know you can't handle your baby, but every fibre of your being wants to throw your breast pump out the window and hold your baby to your breast.

It's hard though. My body has more desire than ever to fall pregnant, I can feel it. I really want that full term birth out the lambing end. I want a non-medicalised delivery, and to hold my baby as soon as he/she is born.

But there are babies everywhere. My best premmie mum friend is having further IVF treatment, I see babies all the time at baby group, and my sister is making a new one as I type! And, in all likelihood, it's a boy!!!!!!!!!

Wednesday 12 May 2010



You got wires, going in
You got wires, coming out of your skin
You got tears, making tracks
I got tears, that are scared of the facts

Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes

You got wires, going in
You got wires, coming out of your skin
There's dry blood, on your wrist
Your dry blood on my fingertip

Running, down corridoors through, automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own
Looking at you now, you would never know

I see it in your eyes, I see it in your eyes
You'll be alright
I see it in your eyes, I see it in your eyes
You'll be alright


Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes
down corridors, through automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own
Looking at you now, you would never know.

Wires by Athlete

This song is a mantra and anthem for so many parents who have a baby in special care. I used to listen to this song every morning in hospital on my iPod whilst I expressed my milk. Tears and milk flowed.

I've been feeling down all day, and it's taken til tonight to realise why. Today is the anniversary of the day from hell.

Joseph was into his 5th day in special care. I went down in the morning, and there were concerns, no one was saying much, except that things were not looking good. By the afternoon I was in a mess, I kept getting updates from different doctors, and really, things were not good. I went up to my room for a late lunch and the room didn't look right. I thought nothing of it and went back to special care.

This consultant came in and said to me "you do not understand what is happening here. You baby could die". Ok, so I was holding his foot and singing 5 little ducks, but what is a mummy to do? I felt so hopeless, I just didn't know what I should be doing. The pregnancy books do not cover what to do when your baby is 1lb 7oz and in an incubator, or maybe I just missed that bit.

The doctor went on to explain Joseph probably had NEC, necrolitising enterocolitis. I did not understand what this meant. Now having been on this journey with other parents, I realise why the doctor thought I was on planet moo moo. NEC is potentially, and often, fatal. Again, not covered in my pregnancy books, and God knows I'd read enough of them.

I went up into my room for a rest and to think, and it really didn't look right. It had been ransacked. I checked the drawers. Wallet - check, iPod - check, camera - check, emergency chocolate - check.

I looked again. The big blue fluffy teddy bear that someone had given me had gone. Vanished. Taken. I called the cleaner and the nursing staff who said I must have misplaced it. It was a foot high for goodness sake.

The bear didn't matter I don't suppose. It couldn't go to special care as it was huge. But to me, it symbolised hope. No one else dared get us anything. Someone had even bought us a sympathy card......No one thought this baby was going to live, except this one lady who had bought a teddy bear. And now it had gone.

I was inconsolable. I could not stop crying. I rang my husband in tears. He rushed in with a beautiful little bear with a pink blanket, for me. The nursing staff got together and gave me a big beautiful dog. A family also in special care came up to me later with their little sons, about 4 and 6, and they had dug in their toy box for a replacement.

As it transpires, a dad to be had stolen it. He was a crack addict (lots of them in our hospital) and was desperate. I felt a little better, to be honest, that it was going to a tiny bubba who perhaps otherwise would have had nothing.

Later that night I went back to special care, and sung to my little boy, only to be interupted by a doctor. They had caught it. The antibiotics were working. Joseph was stabilising.

But that bit of my heart that thought he was going to die will always be that little bit broken.


I hate hung parliaments. Bloody nuisance of a thing. I remember well Tasmania in 1989, I was sitting in the Tasmanian Industrial Commission taking notes on a hearing when the scandal broke, bribery and corruption trying to get a Labour candidate to cross the floor.

I'll have to hang my flag out, I am not a Tory. I am not a Laborite either. I dunno what I am. Like religion, there doesn't seem to be any political group that completely gets me. All the polls I did said I should be voting Green. It doesn't really get Green up in this part of the North, maybe I should run next time.

But this time, with our interesting Tory/Lib Dem combo, I am worried. Now I am a mother I am reliant on a lot more services than I ever have been. The NHS, SureStart, tax credits and child benefit. It's a scary feeling. I really feel I shouldn't have to work, I should receive a tiny bit of support to help me stay at home and look after my own child rather than stick him in nursery for someone else to raise him.

I need my SureStart centre. SureStart, admittedly has lost the plot somewhat from what it was intended to do, and yes, it could do with a bit of a restructure and refocus. But to dismantle the current system and tender it out to charity just seems really scary to me.

When Joseph finally came home from hospital I had a few weeks of neonatal outreach visits, then it all stopped. I wasn't meant to take Joseph out where he could mix with other children. I had no family, my husband was only entitled to basic paternity leave, which he had exhausted. I was all along.

SureStart probably saved me. I have no doubt that at some point I would have ended up a psychiatric inpatient. Our beautiful SureStart worker, Sam, helped me to pick myself up, get help, get treatment and become a parent, instead of a victim. It took a lot to end my pity party and start focussing on the future.

Under the Tory plan it would be highly unlikely that I and many families like ours, would be entitled to any help. We are not on the breadline, on benefits, drug addicts.......we are families, and becoming more and more socially isolated.

If it goes, at least I can say I fought.

Sunday 9 May 2010

They say it's your birthday......


Yesterday Joseph turned one. He has been in our lives a whole year. This marvellous, inspiring little boy.

I was amazed at how much he realised it was all about him. And to see his personality shine through with the other babies. Kate, the photo in the middle, is Joseph's best friend. She has had a difficult beginning, losing her little sister in the womb, and having to be born early as a result.

She cries a lot, and Joseph comforts her, like he did yesterday. And passed her toys to cheer her up.

He opened his presents and played with them all, he was so appreciative of them all.

He worked the room, cuddled everyone, and had a fabulous day, and would not stop smiling.

And neither did I.

It's been the hardest of years, not knowing what he'd be like at 1, or whether, at times, he'd be here at all.

I've had months of feeling terrified and traumatised, and on medication. I was so eager to come off the citalopram wonder drug before his birthday, and I've managed this goal.

I feel like his birthday has just put a wax seal on the year, and I can really, truly enjoy this marvellous little man and focus on the coming years.

Wednesday 5 May 2010

Birth Story

I share regularly on a lovely birth and parenting forum, and it is customary to share your birth story, once you get home from hospital and have some "free" time.

I never really did this. I posted an "oh my god, I've got my baby and I'm traumatised" story, but not my proper birth story. So a year on from the dramatic story of Joseph's arrival here goes.

Wednesday 6th May

After having a good morning and reading week 27 of the Rough Guide to Pregnancy and Birth by Kaz Cooke (the rather diluted English version of Up the Duff), I started feeling rough in the afternoon. Naff. Headachy. Tired. Cue afternoon nap. I awoke (to a bird trapped underneath our bath but that's another story), and still felt naff. I got up, dealt with bird, made tea, Corey came home, and went to bed. But I couldn't sleep. This headache was troubling me. My midwife, the registrar at hospital, and my GP had all said watch out for the headache. Could this be pre-eclampsia? No flashing lights, no swelling, no feeling dizzy?

I decided, along with my husband, that it was better to go to hospital and look like a div. So at three in the morning on Thursday, off we toddled.

Thursday 6th May

We got to the delivery suite, and Michelle, a lovely midwife, was there to meet us. She took me into a large room, and got me settled. She ran some bloods, did some urine tests and did my BP. She said she'd reserve judgement, but that I might have pre-eclampsia.

My husband decided that he'd go to work (pre-eclampsia, of course, being the pregnant ladies man flu) and leave me to it. I still, at this point, thought I was neurotic.

Soon after he left, people start filing into the room. The final person was a beautiful, tiny woman, a doctor. She gently said "Mrs Hodges, you have severe early onset pre eclampsia. It's extremely serious." My eyes filled with tears "No no no, you have it all wrong, I'm neurotic, depressed, out of my tree, I don't have pre eclampsia, I'm fine, I'm just fat with essential hypertension". One of the midwives nearly laughed! This poor doctor just looked at me "you are not neurotic, your ill, and we have to work fast. We have to deliver the baby, probably next week." Then I remembered the last sentence I read before my headache got the better of me. "27 weeks, if your baby is born this week, he/she has a very very very good chance of survival"

I was admitted and taken up to ante natal ward. A series of case conferences would be held during the day. I sent my husband a text, he rang the ward, and decided it might be a good idea if he came back!

I met my consutlant who sent me for an emergency scan. This was the worst 30 minutes of my life. The sonographer, who I'd met twice before for my routine scans, said "I am so so sorry". I thought the baby was dead. She tried to explain what was going on, but it all sounded like rubbish. My baby was dying, and there was nothing I could do about it.

We got back to the ward and I couldn't stop crying. The consultant came in, put his arm around me and said "what's all this?", I said to him "your lying, this baby is not going to make it, the baby has gone". He looked at me and said "no the baby is alive. He is poorly, but so are you, we have to deliver him at 9 o'clock tomorrow, but I tell you this now, I am delivering a live baby, and you must be strong and believe in this baby and yourself">

He proceeded to try and give me options (being the NHS and all....patient choice etc etc), but it was clear, there were none. He was more concerned that I would die at this point, and said I was around six hours away from death.

After this meeting, I met with the doctor who would be one of Joseph's paediatricians, and one of the special care nurses. They explained how it would all work, and what the next 13 weeks would be like as they finished off growing my baby.

After calming down, my husband and I had our evening meal in the room and then we went for a walk. Past special care, to the chapel. I wrote a prayer in the book, and had a weep, and we went back to the ward, ready for me to have a good night's sleep.

Wrong. My latest bloods had come back. 9am Friday morning seemed a long 13 hours away, and I was in serious trouble. I was taken back to delivery suite in a wheelchair and they started working on me. I had lines in, catheters, monitors hooked up to me, I was so terrified. I was to be monitored every 15 minutes, and ecgs done every 2 hours. I was not permitted to sleep.

Corey decided to go home and sleep, ready for Friday. I proceeded to sing, talk and pray with my baby. I tried to read, but the headache wouldn't let me. There was no tv or radio allowed, it was just me and my thoughts, and a couple of machines for company.

It was a long night, and my hubby came back at 4 in the morning. I was prepped for surgery, had discussions with anaethetists, and then the time had come to take me to theatre. The consultant took my husband away to prep for theatre, and I decided to walk into theatre with my head held high.

The anaethetist, who I have spoken about before on my blog, was so kind, and he got the spinal in. I felt strange, cold, nauseated and numb as the block started to take effect.

I lay down, and my husband returned. The screen went up over my belly, and we started to talk about our honeymoon. Shortly after I heard a screech, and a baby crying. I was so cross. I'd had to lie in delivery all night listening to labouring women, and now this. The whole mood of the theatre changed, I could see smiling eyes behind masks. This wasn't any old baby. This was MY baby! And he was alive.

Corey was taken at this point to see our baby, we still didn't know the gender. He accompanied the baby to special care, as I went into recovery.

About an hour later it was confirmed, we had a lovely, beautiful and incredibly tiny baby boy.


I spent the day having more monitoring, and more drugs. I couldn't think about anything other than seeing my baby. I cried for him. Charlie, one of the assistant doctors, came to see me.

"What is wrong", said the biggest, most beautiful Ghanian chap I had ever seen!

"Ignore me, hormones, post op blues, I will be fine".

"No" he said "No, you have to see your baby."

I sobbed "I'm not allowed, our unit is too small for a trolley, I can't sit in a wheelchair, I can't see him today"

Charlie looked at me and said "I will carry you in there myself if I have to" (he's the only man I have ever met who possibly could have done it!!!)

So it was arranged I would see my baby. Charlie said to me "Joseph is a warrior name in my village, he will be strong, he will be ok"

The first time I saw Joseph, I just loved him. Pure, unadulterated love. No fear, no revulsion of this tiny creature, just love.

And a feeling that one day, however long it seemed at that moment. We would be together as mother and son.

Saturday 1 May 2010

Strange Coincidence

A bit of an adjunct to my last post. I was looking at my Bruce Dawe anthology when I just came across this - Katrina. I shall type it here in full.


Katrina, you are now suspended between earth and sky.
Tubes feed you glucose intravenously. Naked you lie.
In your special room in Ward Fifteen. Is your life
Opening again or closing finally? We do not know, but fear
The telephone call from a nurse whose distant sympathy
Will be a measure of our helplessness. Your twin brother's
Two month old vigour hurts us, remembering
Thin straws of sunlight on your bowed legs kicking
In defiance of your skickness, you body's wasting.
Against the black velvet of death threatening
You life shines like a jewel, each relapse a flash of light
The more endearing. Your mother greaves already, so do I.
Miracles do not tempt us. We are getting in early.
Although we know there is no conditiong process which can counter
The karate blow when it comes,
No way we can arrange the date-pad to conceal
The page tornoff, crumpled, thrown away.
Katrina I had in mind a prayer, but only this came,
And you are still naked between earth and sky.
Transfusion-wounds in your heels, your dummy taped in your mouth.

As far as I can determine Katrina was not premature, she and her brother were well babies, however when living in Malaysia, Katrina contracted malaria at 2 months old, and this is about her illness.

Katrina is now a mother herself!

Happiness is the Art of Being Broken

My favourite poet is Bruce Dawe, his anthology "Sometimes Gladness" is my go-to book, particualrly when I am sad, or reflecting on life.

Today I am sad. Through this journey my family have been on with Joseph, we have met some amazing people, both in real life, and also on line.

Yesterday many of us supported a mummy who had a baby at 26 weeks. She was born yesterday, and then, sadly, she died. We say many things "grew wings", "crossed the rainbow bridge", "flew away", but it all means, tragically, the same thing. This little baby died.

And I feel sad. I feel sad for all the babies I have been involved with who have not made it, and for the parents who are devastated, broken, bleeding from the inside.

Yesterday I learned of another sadness, a dear webby friend who has been "missing" for a few weeks. I was hoping she was so much in love with her dear son, she didn't have time for the internet. No, she has been in a psychiatric unit for 5 weeks suffering from puerperal psychosis.

Chemistry can be evil. Brain chemistry, body chemistry.....we can research, we can learn, we can study, but sometimes we just can't stop the chemistry.

I feel the weight of sadness today. I never stop being grateful that Joseph is here and well, but I can't help feeling survivior guilt.

"Thank you for love, no matter what its outcome
that leads us to the window in the dark,
that adds another otherness to others
that holds out stars as if they were first diamonds..."

Definition of Loving
Bruce Dawe