Saturday 30 June 2012

Explaining Premature Birth to Your Child

I've often wondered how best to approach discussing premature birth with Joseph. I know older children and adults who were premature who weren't told until they we were older, and were shocked and upset. I wanted Joseph to know his start, so that by the time he gets to school, should he need to take photographs in, or it comes up, that he's confident explaining why his start was a little bit different to the majority of his school friends.

I haven't been able to find any books about prematurity written for children so, have just made it up as I've gone along. I am not really a photographer. We have no pictures up in our house, and whilst I take the odd holiday snap, I've never really documeted my life with pictures. When Joseph was born I felt a compulsion to take pictures often. I never went in to the unit without my camera. I felt this need to chart his journey and I am so pleased I did.

I decided to start with this picture:

I thought this was a good start, as he can see that we are with him, and it gives him a point of reference. He is only a few days old here, and looks small, but not poorly. He doesn't have breathing equipment on, although you can see what he calls his "spider legs", the little leads for his monitor.

I have showed Joseph this picture of him, as I think its quite cute, although there is a lot of equipment. He understands already about CPAP that helped him breathe. In his arm is the long line, but I haven't explained that. He also knows about the pads on his chest, as they told the doctors when he needed a little bit of extra help.

I love this photo and have used this one to explain about him being fed through his nose, until he was ready to use a bottle. When I was telling him about my friend's new baby born this week at 25 weeks he said to me "will she have a tube like I did mummy, will she have a special box to sleep in?"

I'm so proud that Joseph understands the basics of his start, and we can add more detail as he gets older. It helps me to feel less anxious about it as well. A friend of mine explained to me that her daughter needed to take photos into school in her first year, and she have her a choice so she could choose how much information she felt comfortable sharing.

If you have had a premature baby, or a preemie in the family, how have you gone about explaining it?

Friday 29 June 2012

Personalised Beach Towel - Review and A Giveaway

We were given the opportunity to review a gorgeous beach towel with Stuck on You. With summer holidays fast approaching, it's time to start thinking about taking some time off and getting away.

The kind people at Stuck on You have given me a towel for Joseph to try, and one to give away (of course with the name of your choice, you don't have to own a Joseph!)

The towel is made of soft 100% cotton. I was really impressed with the quality of the lettering, the embroidery is of brilliant quality and definitely won't unravel like some do. The colours are really vibrant and it washes and wears well. I think they are great especially for taking to the pool and for swimming lessons.I also think they are a nice gift for a special care baby. I often used big towels with Joseph to keep him warm, and it makes a lovely keepsake, and can be used for years.

The size of the towel is very generous, 1400mm x 700mm and is suitable for all ages. They retail at £29.99, are available in 3 colours, and there's a lovely choice of lettering.

Sadly, my great plan of a day at the beach and showcasing the towel in action has been thwarted somewhat by the ridiculous weather we've been experiencing, and the photos are in our garden!

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Thursday 28 June 2012

Breastfeeding a Premature Baby

This week is National Breastfeeding Awareness Week, tweets are being tagged with #NBAW12. Lots of bloggers are joining in with posts and competitions, and I wanted to add my thoughts.

For any baby, breastmilk is the ideal food. It's free, it is tailored to the baby's needs, it is convenient, no preperation required.

For a premature baby breastmilk isn't just food, its medicine. When your baby is born prematurely, you are encouraged right from the outset, to express your milk to give to your baby. Breastmilk can offer protection against a deadly bowel disease called necrotising enterocolitis, and other infections.

Breastfeeding a premature baby is not easy. Initially a baby will not be able to feed directly from mum, babies practice sucking and swallowing in the womb, but won't have this skill til somewhere between 34 and 37 weeks gestation. They have to learn this skill on the outside of the womb if they are born earlier than this.

Feeding a very early baby is complex, and research is ongoing in this area, but generally they start with total parental nutrition and then move on to breast milk, this was the case with Joseph.

Joseph was tube fed my breastmilk for nearly 10 weeks. In our case we couldn't move on from this, and he was introduced formula. I was so devastated as I was completely unprepared for bottle feeding.

I got very mixed messages in hospital and at several points nurses and doctors would tell me that breastfeeding such a tiny baby would be impossible. I know now that this was wrong. It can be done. I wasn't given enough access for kangaroo care, and did not have enough support.

I found expressing for Joseph rewarding in the early days, as it was something only I could do for him. But so hard too. Does this look natural to you? That picture makes me feel so sad in some ways, but so proud in others. When you are exclusively expressing, visiting your baby, managing the rest of your life and trying to retain some element of sanity, its incredibly difficult.

Things are changing for the better in UK hospitals. Many units have specialist consultants, and are eager to support women like me to breastfeed their babies, but there is still work to be done.

Breastfeeding is so important for our tiny premature babies, and the right support for mothers even more essential.

To read more about my thoughts on breastfeeding, please visit this guest post I did for Plus 2.4 Breast Mates series.

Wednesday 27 June 2012

A New Baby Born - And A Discovery


Yesterday afternoon a new baby arrived into the world.

I have discovered, that despite having one of my own, writing a blog, working in support for parents of premature babies, that I am as clueless as the next person.

What to say, what to do, what to think. This dear baby was born at 25 weeks and 2 days. She is a girl, she has a beautiful name. She is loved. She weighs 1lb 9oz, just a smidge more than Joseph did.

The thing is, the reason I know her mum (and dad) is that this isn't the first time they have walked this path. They had triplets at 25 weeks around the same time Joseph turned one. 2 boys and a girl. The boys came home, the girl, very sadly, lost her fight after rallying hard.

None of my resources that I have at my disposal are really of much use. My friend knows what is around the corner, what the journey is like, and the complications that can arise a long the way. No need for a care package with Tommy's resources and the Small Wonders DVD, she could have written them both. And that, I think, makes it worse. Her hope and innocence are gone. And so is mine. I know all we can do is wait, and hope, and pray.

This time my friend got great care, regular FfN tests, a cervical stitch, brilliant monitoring. However, she had pregnancy loss in between. Her triplets early birth was put down to the "multiple factor" initally, but the loss of a baby at 16 weeks proved there was an issue, and a good plan was put in place. But still the baby has arrived. It makes me cross that we can't do better than watch and wait. She had two positive FfN results, but so have friends. And they have gone on to have near term babies.

Pre term birth is still such a mystery, and its just breaking all of our hearts, our big circle of premmie mums that are surrounding this family in love, prayers and positive thoughts. There are no easy answers. Monitoring is wonderful, interventions, however, are few. And contentious. No one really can predict how a pregnancy will go, and no one can stop a pre term birth with any degree of accuracy. Some can be stopped some can't.

It's heartbreaking.

However this much I know. Where there is life, there is hope. Where there is love, there is peace.

We pray, we hope, we love.

And we take each moment as it comes.

The family have given me permission to blog about them today.

Tuesday 26 June 2012

The Funniest Things About Britmums Live

  • Being bombed. I was staying in the Travelodge on the City Road, I had just dropped off to sleep and "kaboooooooooooooooooooooom" the room glowed red, there were flashes around the window, I lept up ready to evacuate the room in my pink satin polka dot pyjamas when there was another bang, and the penny dropped, it was fireworks coming from the Honourable Artilery Company across the road. No evacuation required.
  • Babies. Never in my life have I seen so many well behaved babies in an adult oriented venue and function. The worst offender was Monika's little cherub, who just lay around looking adorable. I spotted several equally wonderful babies, and was disturbed by my ovaries pinging at every given moment. Give me a squawking bad tempered baby any time, they really cement my decision not to produce again, unlike these little dears.
  • Naked men. Well not wholly naked, but at the drinks party were scantily clad butlers showing their stuff to all and sundry. Not my thing really, but they were funny, and it was amusing to see normally staid, sane bloggers turn to mush. My drinks were supplied by a fully clad female waitress. I like my men full dressed thanks. Well, clearly not all the time, as I have managed to make one baby!
  • Playing hooky. I am the sort of person that goes to every single session at these things. However on the Saturday morning there wasn't a talk that floated my boat, so I went and played at the PR stands, and visited TKMaxx too. I loved their set up with Homesense and looking at all the pretty homewares and clothes, and ran into my new best female friend Helen Gunter. Who mistook me for Monika and congratulated me on my new baby! Ha!
  • Getting an autograph. I am a huge fan of Maison Cupcake. It never ceases to amaze me that I never went into food blogging, and Sarah's website convinces me there is no need, as she is the sort of food blogger I would aspire to be, and as she does it so well, there is no point me doing it! I bought her beautiful book Sweet Bitesize Bakes at the Waterstones stall at Britmums Live and got her to sign it! Sarah is also a fellow pre eclampsia survivor and premmie mum.
  • Guessing the winner of my section of the BiB awards! I met up with the gorgeous Lisa Pearson and was teasing her in the afternoon (good naturedly) and the winner is.....and that I had a good feeling. And I was right! Go me! And well deserved too!
  • Worrying about finding my Tommy's crew and nearly falling over them on the street!
  • The expat dinner, and bemoaning the lack of laundries in English homes with the lovely Rachel  and creating ANZAC corner with fellow expat Vegemite Vix who is even more wonderful in real life than on line!
I had a great time at the BiBs and it was pretty wonderful to be out and about enjoying myself. And I totally wasted the free WiFi on the way home by falling asleep in first class!



Monday 25 June 2012

Blogging for the Greater Good - How to Blog for Charity

I spoke at Britmums this weekend, about blogging for the greater good. I know there were several strong sessions at the same time, Pinterest and Facebook being two of them, and I would have loved to have split myself in three. So if you missed the session, or wanted a recap I thought I would put my thoughts in a blog post, as I didn't get to say all the things I wanted to.

Do you have to pick just one charity? Some of my panel members suggested you have to find one charity that speaks to you. I have to say, that to a point, I disagree with this. I think there are different levels of involvement, and its ok not to put all your eggs in one basket. Afterall a lot of us probably donate to more than one charity, I know I do. My main charity engagement is with Tommy's and I can't see that changing, but I do bits for other charities too. Firstly Joseph and I directly benefitted from Bliss, and there are other charities, like Best Beginnings doing amazing things in my field of interest. I also love helping other bloggers and adding to their cause, and I know what goes around comes around and they'll help me too.

How do I approach a charity? There are a couple of ways. I tend to follow my chosen charity on Twitter. Check out their Facebook page too. A charity having a Twitter/Facebook presence is an indication they "get" social media and will be open to working with bloggers. It also gives you an idea of the charity's "voice" and whether it matches your own. You could try tweeting them first. I did this with Diabetes UK. I had an idea for a post already, and wanted to know if they wanted to be named on it etc. Alternatively, send an email. Charities are busy, so keep it short and sweet. Just who you are, why you are interested - share your back story should it be relevant, and don't be too prescriptive. Be open to what the charity suggests.

I am too shy for that, are there any other ways? Yes, keep an eye out on the Charity Connections group on Britmums. The other blog networks like Netmums, Mumsnet and Tots100 also have charity opportunities. Also, keep an eye out for what other bloggers are doing. I recently got involved in #ShareNiger, you can see the badge on my blog, from a social media and donation point of view. I also took part in #dosomethingyummy for Clic Sargent. There are loads of ways to spread your influence and use your skills.

As a blogger are there any benefits from getting involved in charity work? Very clearly there is the "feel good" factor. I adore the work I do for Tommy's and I know its helped women get more information and have safer and happier pregnancies. There are other benefits too. Blogging is all about brilliant content. Often charity posts are a great way of telling a story, and if its a cause your passionate about, those posts will stand the test of time. Have a search for my #dosomethingyummy posts! If your blogging in a group, it will help your stats, if you care about that sort of thing, through other bloggers linking to you etc. For charity work I would use "follow" links, please don't make them "no follow". I can explain more about this if there are questions. You will also make great friends. I got to know Nickie much better through #dosomethingyummy.

Blogging for charity can be as involved or as casual as you like. You don't need to sign your life away and make a massive commitment but of course you can if you want. Blogging for charity is fun, challenging, and interesting. Be open to it!

If you need further help you can find my email address and other ways to contact on the buttons on my blog. 

Sunday 24 June 2012

Meeting a Hero at Britmums Live

When I first saw the agenda for Britmums Live, I was really excited. Last year at Cybermummy my favourite session was the one about blogging for charity, and it changed the direction of my whole blog. I found new focus. So when I found out that the colourful, inspiration and amazing Camila Batmangelidjh was speaking, I was awestruck.

Image courtesy of Britmums
Then, last week, I was asked to speak on the same panel as Camila and I felt sick with nerves. Would I be able to speak to her without turning into a blithering wreck? Would I feel confident to speak?

Camila is the founder of a couple of charities that help London children, the most famous being Kids Company.  When I first moved to England, Kids Company was three years old. I recall watching Camila speaking on television about her life, which is just fascinating, and being amazed by her own personal resilience and her passion for kids other people have written off.

One thing I did know about Camila is that, like Joseph, she was an extremely premature infant. She was just over 1 kilo at birth, and wasn't expected to live, they didn't even place her in an incubator. Camila is severely dyslexic, she does not use computers at all as she is unable to read the screen. Her staff print off things they need her to read.

I had a lovely chat with her and she advised me to watch out of neuro visual issues with Joseph, but was so happy to hear his story. We had an amazing chat about the role of bloggers, she felt a little out of her depth, but I explained that we are here to help and to use social media, so she can use her time where it really matters, with her kids. I also explained that unlike traditional media it is much easier for charities to use bloggers, to get their message across, with passion and authenticity. Authenticity to me was the unofficial theme of Britmums Live, and they don't come much more authentic than Camila!

Camila is exactly how she comes across on television, full of positive energy, quick with a smile and a laugh that just fills the room. She's the sort of person that makes you feel enriched, and ready to go out and help others. I am so glad that I made the first move, and chatted to her.

If you are based in or visiting London please try and find time to visit "Childhood The Real Event" which is an exhibition of art work by 1046 children helped by Kids Company. It is being held by the Royal Academy of Arts at 6 Burlington Gardens.

Friday 22 June 2012

Train Travel without a Toddler

I am going to Britmums Live today, and it comes to mind that its been ages since I did a long distance train trip without a small person!

  • Find your normal carry on bag, take out the essentials, phone charger, wallet, lady essentials, and put them in a small handbag.

  • Pack your overnight bag. Marvel at how much room you have. No Thomas the Tank toys, small persons pyjamas, nappies......what to do with all that space?

  • Pack your shoes, then pack another pair, go on there is room. Pack an outfit for an evening do, pack another one so you have a choice. Bag still only 1/4  full! Plenty of room for Britmums Live goodies.

  • Arrange your transport to the station. Get there half an hour early. Have a coffee in Starbucks, you could even get to read the paper.
  • Find your seat on train. No need to negotiate or worry that your toddler will take up a seat, and have to accommodate them somewhere! 
  • Get out your tablet, plug it in, turn on wi fi, content in the knowledge you won't be opening your Peppa Pig apps!
  • Find your ticket for the conductor in 2 seconds, not having to weave your way through packets of emergency chocolate buttons, matchbox cars and crayons.
  • Check your Facebook, watch a tv programme, enjoy the quiet, read a book, you remember them don't you? Or what about a magazine, without a CBeebies character on the front. 
  • Arrive at Euston, breeze off the train, no "1 2 3 big step", get to the underground and whizz down the escalator, through the queue for the tickets and on to the train, not a tantrum to be heard, well not from your child anyway.
  •  Arrive at hotel, pack your things away nicely, and sit down.
  • Catch your breath for a minute and try to just enjoy the peace and quiet and not feel sad that you haven't got a little person tucked under your feet with a collection of Matchbox cars racing them around your hotel room.

Wednesday 20 June 2012

Inspire - Brilliance in Blogging Award

Britmums are presenting the Brilliance in Blogging Awards on Friday, and I am shortlisted in the Inspire Category, which I am really excited about. Can I let you in on a little secret though? I hate this category. The reason I hate it is that every single blog in the Inspire category is utterly fabulous, and I read pretty much all of them on a regular basis. I want to introduce you to my fellow bloggers, if you haven't come across them already, do yourself a favour and check them out!

A Boy With Aspergers Claire Sarcone is one of the nicest (and maddest) mummy bloggers you are ever likely to meet. Her blog is truly inspirational, and Claire works tirelessly to help other parents who find themselves battling with special needs provision for their children. Claire left me for dead won the MAD Blog Awards in my category last year!

Crystal Jigsaw Kathryn was one of the first bloggers to visit me and comment regularly. She is a deeply encouraging person. What I love best about her blog is the amazing photos she takes of her beautiful farm and her stories of farming life. She is an amazing writer, and a special needs mum to her daughter.

Doing it all for Alleyna I met Alex at the MAD Blog Awards last year. She also has a daughter with special needs (I love how she calls global developmental delay another term for "haven't a bloody clue"), and she's another really encouraging blogger. Her special needs round ups are well worth following up on the Britmums blog.

Down Side Up I really adore this account of life with an amazng girl with Down's Syndrome, and there are some fantastic posts that are well worth reading like What to Say When A Baby is Born with Down's Syndrome. I am really looking forward to catching up with Hayley at Britmums Live and finally meeting her.

Mummy Whisperer How my heart sank when I saw the absolutely stunning Lisa Pearson in this category. Lisa is a magician. She can take stressed out women with too much on their plate and turn them into organised, confident, happy mums with happy children. It's true. She's written a fantastic book, click on the blog to see how to order, and find yourself deeply inspired. She also looks amazing in a fairy princess dress!

Walking with Angels A beautiful blog about raising children, and about grief too, the author's daughter died due to complications from Rett Syndrome, they have started a charity in her name Livvy's Smile and also foster special needs children.

Was is this in the Plan? This is a very moving blog about a family with four children. The youngest, Daisy, has a condition called Costello syndrome. This blog is a very moving account about life with a child with complex needs, and also the oldest child, a son, has Asperger's Syndrome. I really love this blog, its insightful and tells it how it is, and its not always easy.

So you can see I am up against it! But I don't mind at all what happens, as we're all doing amazing things and are all winners really!

Tuesday 19 June 2012

Small Wonders - A Groundbreaking DVD for Parents

I'm delighted to annouce I will be speaking at Britmums Live about Blogging for the Greater Good. Today I was invited to attend the launch of the Small Wonders DVD that has been developed by a small charity called Best Beginnings. The Small Wonders DVD is being released today to parents who have babies on units throughout the country, through Best Beginnings champions. I am so excited to share about this with you today and explain more about it.

Today sees UK based Health Charity Best Beginnings, working with six medical Royal Colleges, UNICEF and more than 15 other organisations, launch the national Small Wonders Change Programme implemented by over 400 doctor, nurse and midwife 'Champtions' within neonatal units throughout England and Scotland to support health professionals in their work with families who have a sick or premature baby, in ways that have been proven to improve babies health.  Small Wonders press release
Nothing can prepare you for having a premature baby. Your expecations immediately fly out the window and your launched into a scary world, full of machinery, alien noises, even more alien terminology, and somewhere, in the midst of all this technology, is your baby. When Joseph was in hospital he received the very best clinical care, don't get me wrong. However, what was lacking was a sense that I was in the centre of his care, I felt at the periphery. I struggled with not being able to hold my baby, with breastfeeding and expressing. I felt there was so much conflicting information, and each nurse would have a different ethos and method of practice. On the Bliss messageboard there were so many people giving me conflicting stories of their hospital care. I felt jealous that other mothers of 27 weekers were having skin to skin contact with babies on ventilators or CPAP, whereas I was told I couldn't touch Joseph. I learnt that in neonatal care, not all units are equal.

Best Beginnings exists to address inequalities in healthcare, particularly for children. I first saw this DVD when it itself was still an embryo, I was involved in road testing and advising on it. It really struck me how different care could be, and how best practice care should work. This was further reinforced at the media briefing today, that parents should be at the heart of their baby's care, and that the Small Wonders DVD isn't just about informing parents, its also showing nurses and other professionals what its like to be a parent of a premature baby.

So how does the DVD work? Its a documentary style following 14 families, charting their experiences right from the moment their babies are born. As mentioned it has two aims, to enable neonatal staff to support and advise parents and to encourage parents to play a pivotal role in the care of their baby. All the suggestions in the DVD are evidence based, such as kangaroo care, and expressing breast milk. It has been divided into 12 chapters, and you can dip in and out, viewing the ones appropriate to you at the time.

The chapters are

1. Introduction
2. Birth
3. First hours
4. Expressing breast milk
5. Holding your baby
6. Your time in hospital
7. Feeding independently
8. Preparing for home
9. First months at home
10. Twins and Triplets
11. Bereavement
12. One year on

I had the absolute honour to meet three of the parents today, the real stars of the Small Wonders DVD - together with their babies, VIcki, Saima and Sinem. I feel through watching the DVD a few times that they are my friends, and as fellow preemie parents, felt an immediate bond to them. Their motivation for participating in the DVD is the same as mine in blogging, to help parents feel less alone, and to inform them in how to advocate for their babies and themselves.

I know that the Small Wonders DVD will be very well received and help lots of parents like me to be at the heart of their babies care.

The DVD has been sent more than 65, 000 free DVDs to 115 hospitals across the UK which will be distributed by the Champions. If you currently have a baby on a unit please contact your hospital who will advise you if they can help. If you find they can't you can contact Best Beginnings directly. 

I am looking forward to bringing you more about this project in the coming weeks.

Sunday 17 June 2012

Happy Father's Day

It's not Father's Day for my dad, that's September, so today is all about Corey, my husband, dad to Joseph.

When we first started going out, Corey said that he didn't want children. I did push him, I was a little tiny bit sad, but at 34 had come to terms with not being a mother. One day, out of the blue, he said "when we have a baby", he changed his mind.

Corey knew I was pregnant before I did, and pressed me to take a test. We were both over the moon, newly married and expecting a baby. It was stressful at times, wondering how we'd make it work, with little family support in a one bedroom flat, but over all we just couldn't wait to see our baby.

When Joseph was born at 27 weeks, Corey really stepped up, he was inspirational. He immediately bonded with Joseph, visiting him regularly whilst I was in HDU, taking pictures, finding out information and keeping me in the loop. He maintained going to work, looking after me, and our new, poorly son. He was fantastic.

As time has gone on, he has really grown as a dad. It's his job to teach Joseph about football and cricket, they go to the park together, play together and have a ball.

I am so proud to have seen Corey mature as a dad, and he's awesome.

Happy Father's Day.

Friday 15 June 2012

Diabetes Awareness Week and Ben's Story

This week is Diabetes Awareness Week. In this post I want to do two things. Firstly I want to share with you a very powerful video. I want every parent to be able to spot the symptoms of Type 1 Diabetes. It is important. I first learnt about diabetes at the age of 7. I was on holiday with my parents on Cape Barren Island and we were watching the ABC in the afternoon, when it was cold and rainy outside, and they showed a documentary about children living with diabetes. It really shocked me, how these children had to live and it made me sad for them. I had asthma, and I knew how debilitating that could be, but this just was a whole different level. Diabetes doesn't have to be a sad story, but its important to be Type 1 Aware. 

Secondly I wanted to share with you a story about a young child living with diabetes and I am thrilled that a good friend of mine, Joanne has agreed to share her son's amazing story. Please watch the video first.

Friday 9th July 2010- a date that I will never forget. My son Ben was 2, it was a hot summer and I had noticed that he was drinking a lot of water, even out of the bath taps. He was also weeing continuously. I
had a 2 month old baby, my husband had been abroad for 5 weeks of military training and I was
exhausted and didn’t realise what was happening to Ben. He had lost weight, he was looking very
pale, he was vomiting and was exhausted.

I took him to the GP on that Friday morning knowing that he had all the symptoms of Type 1
diabetes. I was fully expecting the GP to say that he was fine. Ben has his first finger prick glucose
blood test at the GP- the result was Hi- too high for the meter to process. We went straight to A and
E resus .

The rest of that day was the stuff of nightmares. I had to hold my little boy down whilst they did
repeated blood tests and gave him injections. He cried, screamed and kicked and my heart broke.
His blood sugars were over 30 (normal is 4-7), he had ketones and the acid in his blood was rapidly
increasing and that would have been fatal.

Ben spent the weekend in hospital and we all started on a journey of rapidly learning about Type 1
diabetes, insulin and injections. We had to learn how to treat him when his blood sugar drops too
low (hypos) which can lead to fits, coma and death if left untreated. Within a few days Ben quickly
got used to having the injections- at least 5 a day.

I had advice from a lovely doctor- to allow myself to grieve for the loss of the healthy normal life my
son had. I cried most days for that first year- I used to look at my peacefully sleeping son and know
that his life had changed forever, his little fingers savaged by constant blood tests, his skin sore with
the injections. Danger was forever round the corner.

As Ben was so little it was so hard to get good control of his blood sugars. The insulin came in doses
of ½ unit increments and we needed much smaller doses to be able to control things well.

13th December 2010 is a date I remember for much happier reasons. It was the day that Ben started
pumping insulin. A pump works in a much more similar way to the body’s pancreas. It gives Ben a
background dose of insulin 24 hours of the day and then it gives him a larger dose when he eats. The
benefits to Ben are just amazing- his blood sugars improved dramatically and he no longer looks grey
and ill. He has one needle every 3 days when we swap the cannula of the pump instead of 5 a day.

But it is not the total answer. Ben still has to have multiple blood tests every day- up to 20 a day.
He has lots of hypos and every night we set our alarm clocks so we can check his blood sugars
throughout the night. Every night there is a real risk that Ben will a hypo that will lead to fits, coma
and death. We have on many times found his blood sugars to be dangerously low and on one
occasion he was so low he was scarcely conscious and could only just swallow the sugar he needed
to save his life.

Everything he eats needs to be weighed and the carbohydrates measured. The weather, activity and
illness all have a dramatic effect on his blood sugar levels. He can’t go round to friends’ houses to
play as other Mums don’t know how to look after him, he can’t go to holiday camps or anywhere
without an adult who has been trained to look after him. Diabetes turns simple illnesses into
medical emergencies. A vomiting bug last year caused him to end up in the High Dependency Unit in

There is no break from diabetes, no holiday, no respite, everyday is a relentless cycle of checks,
blood tests, insulin and weighing food. It’s always on my mind, there is not escape. I drop him off
to school in the morning and just hope he’s going to be safe. I’ve held him as he cries and says he
doesn’t want diabetes anymore and wants to be like the other boys at school. He asks why the
doctors can’t cure it now Mummy.

Along our journey we have been blessed with meeting other families with Type 1 children through
the fabulous organisation Children with Diabetes and the support that we have been given by other
people who truly understand what we go though everyday has been immeasurable. We are also very
proud supporters of the charity Juvenile Diabetes Research Foundation that works tirelessly to find a
cure for Type 1 and for better treatments until that time. Hope is in a cure.

Thank you Joanne for sharing Ben's story. Hope IS in a cure. If you would like to help in a practical way you can donate or fundraise for JDRF or Diabetes UK. Follow the links provided.

Thursday 14 June 2012

The Walking Thing....Again

And its all just a little bit of history repeating........

I cannot believe that I find myself writing about walking and Joseph yet again. I thought this was all sorted and I just want to bash my head against the nearest wall. I was looking back in my archives and found this post, and I right back there again.

Yesterday I had trip to Joseph's preschool to have his review, he has two a year, which I personally don't feel is adequate but hey ho, that's what the local authority thinks is reasonable and who am I to argue with authority.

Overall the review was very positive, Joseph is coming on in leaps and bounds, his social skills and communication skills are improving very quickly, and his numerical ability is great. I was very pleased to hear that he is doing so well.

However preschool have noticed that his walking is immature. For some reason they hadn't documented my conversations relaying back meetings with orthotics etc, and hadn't noted that he is hypermobile in his hips and knees and to a lesser extent his ankles.

I feel really frustrated, because she started mentioning physio, exercises, even making adaptations to the room layout to accommodate him! I had no idea that this was such an issue, and what is really frustrating is that no one else appears to care that much. Physio signed him off once he took his steps, as did his neonatal consultant, and orthotics just say to let him develop normally and he'll improve over time.

The preschool coordinator has suggested we go back to the health visitor, which I will do today, but now I have no idea what to do. We don't have a named health visitor anymore. The team at the sure start centre don't really seem to know what to do with Joseph and his weird walking. I don't know whether to go back to the GP and ask for a consultant referral, or just return to orthotics. It's just really baffling me.

And, what's underpinning this for me is that I can hear Shirley Bassey singing in my head. I know, scary isn't it. When I was a child the very same issues beset me, and it feels like history repeating. I walked later than Joseph. Was never particularly physical. I'm still hypermobile in my hips but it doesn't affect my day to day life at all. I still kinda do the weird robot walking to an extent, over compensating in my pelvis in case I wobble and fall.

My gut instinct is that Joseph needs more encouragement to be physical, and choose physical activities that interest him. I am going to look for a street dance class for him, and start looking for a ball skills class too. I just think that because he knows he's not as physical he chooses more sedentary tasks that he is good at. See there it is history repeating.  Reading age of 7 at 11 years old, but couldn't catch a tennis ball one handed, so sent to a special school. Yep that was me.

Joseph needs me to be on his cheer squad, to find creative ways around this, and help him develop at his own speed.

Wish me luck. Any advice gratefully received.

Wednesday 13 June 2012

Ask the Oracle - Night Terrors

It's late at night. The house is quiet, and everyone is sleeping peacefully, even the cat. Suddenly there is an ear piercing shriek, that turns into prolonged screaming. You sit bolt upright and leap out of bed, adrenalin racing, your heart beating so fast you can feel it. You look into your child's bedroom and check for intruders. Gingerly you go in and see your beloved little one bolt upright screaming, their eyes wide open. Whatever is the matter?  

The fabulous Kate at Kate Takes 5 has started something amazing, answering problems that other parents are having with their children. She has been asking around for people to contribute to dilemmas that she hasn't had experience of herself, or is looking for a different perspective. When she asked for someone to write about Night Terrors I immediately responded, as we have been on quite a journey with night terrors.

Emily at Family Four Fun is having problems with Master E and night terrors. You can read all about it here. Master E sounds very much like Joseph, and I'm happy to share our experience. I am no expert, or oracle but here goes.

What is a night terror? Night terrors are part of a broader range of disorders called parainsomnia. Parainsomnia is basically just a term for abnormal activites that occur during sleep, and covers other issues like sleep walking, sleep talking etc.

What happens in a night terror? Here lies the inherent difference between a nightmare and a night terror. Nightmares occur in REM sleep, that lighter sleep where the imagination goes on flights of fancy. Night terrors occur in the deepest, dreamless sleep. So this is the main difference. The upshot of this is that a nightmare is remembered, and a night terror is not.

In a night terror the child may appear awake. In our case Joseph's eyes are nearly always wide open. The screaming is loud and incessant. But its important to remember the child is still asleep. And although the rest of the house is awake, the child is still getting refreshing sleep even though it doesn't seem like it.

What action should I take? In all the reading I have done, the advice is the same. Do not wake the child. The child is still asleep, and although it sounds horrifically frightening, they will have no recollection in the morning of their nocturnal activity. You can try patting them or soothing them, but this is for your benefit as a parent, not the childs! The best thing to do is calmly wait for it to finish. If you wake the child, they may become agitated, or frightened by your own reaction, and importantly they will be awake, and missing out on sleep.

One of Emily's questions was whether to question Master E to find out what is causing him stress and worry. Night terrors occur in deepest sleep so may not be related to any specific concerns. They can occur in times of high anxiety, I had a few episodes when Joseph was in hospital, but can occur at any time.

Why do some children get night terrors? That is a really good question, and sleep is still largely a mystery to researchers. There is some evidence to say they tend to run in families.But its not purely genetic as not all children in the same family will get them. I get them from time to time, as did my maternal grandmother. Sometimes things can trigger them, like teething, post nasal drip and underlying medical conditions . They can also occur at times of bursts of development. Joseph learnt to sleep crawl during a night terror before he could actually crawl whilst awake!

This is happening often and disturbing the household is there anything I can do? Try keeping a sleep diary, from evening meal onwards for a couple of weeks. Note the time the episodes occur, anything that is going on that is outside the norm. Some doctors advise waking the child before the terror occurs. In our case Joseph would wake at 2am each night, so you can try waking say at 1.45 with a drink and resettling. This should then send them into REM sleep and the night terrors may not occur. It's not foolproof, but its worth a try.

If they persist then go and see a doctor, taking your diary with you. More often than not night terrors will go of their own accord, but it's helpful to get anything underlying ruled out. In our case the night terrors were put down to post nasal drip, where the snot runs into the back of the throat. Once we used a saline nasal spray before bed, they tended to settle down. In older children hayfever can cause postnasal drip so an antihistamine at bed time could be something to try. Nocturnal asthma can also cause confusional arousal/night terrors.

When will they stop? I have found that night terrors come and go. Joseph hasn't had one for a while, but he does sleep walk, and sleep talk as well. The sleep talking is a lot funnier than the night terrors! They might disappear completely, change into another parainsomnia disorder, or carry on. It's important to remember that the child is not upset by these and has no recollection.

I hope that's proven to be somewhat helpful, and thanks again Kate for asking me to write this post.


Tuesday 12 June 2012

Great Expectations - Dashed

The Britmums blog prompts are back, huzzah, and this weeks could have been made for me. The prompt is "What You Never Expected When Expecting".

1. I expected pregnancy to last 8-9 months You do, don't you? Most pregnancies go to term so why would you think it would be any different for you? Even when I knew things were going pear shaped, I thought there would be something "they" could do, bed rest, medication, something. I never ever expected to have such an early baby.

2. I expected morning sickness to, well, be in the morning The man (has to be) who came up with "morning sickness" should be shot. At very close range. Without a blindfold. After having been forced to eat 7 packets of gingernuts. I felt sick from the moment I woke up til I went to bed, with a "window" between 11 and 3 where I felt reasonably. I lived on fish, salad, loads of veggies. I was concerned that I wanted to eat well and not waste time eating rubbish. Good call as it turns out.

3. I expected pregnancy to be a happy, healthy time complete with glowing I wanted to glow, dammit! I wanted to be proud of my body, to revel in my changing shape, to enjoy this growing life inside me. I didn't expect to feel like utter rubbish, to beat my 4 pregnant colleagues all due in May/June, and to have a premature baby. I never glowed!

4. I expected to be treated with respect and kindness One of the biggest let downs of pregnancy I had was to learn how patronising doctors and other health professionals can be. I had a couple of incidents where I thought to myself "is this for real? I am a mid 30s woman of reasonable intelligence how can you speak to me like this?"

5. I expected health professionals to all sing the same song from the same hymn sheet This is related to my last point, but I found health professionals all said different things, and had different backgrounds and opinions, and it made me feel really unsettled. I learnt that its ok to question, and ask for second opinions and I'm so glad I did that. Can you believe a doctor actually said it me "Mrs Hodges you won't get pre eclampsia". Hmmmmmmm

6. I expected to attend and enjoy antenatal classes I couldn't wait to attend my classes, and was really looking forward to attending with my husband, and I know he was looking forward to it too. I couldn't wait to make new mummy friends. No matter as I got a great bunch of friends from NICU and now social media so all's well that ends well.

7. I expected bump pics, bump painting, bump casts, the works I was so excited to be pregnant I started looking at casting kits and specialist photographers. I feel so sad I never got a single bump picture, much less a keepsake from that time.

8. I expected to be scared of labour I never had one of those, but I thought going into labour sounded really scary. I did think I'd end up with a section, and was very surprised at the happy memories I have of Joseph's delivery. I am really grateful that all the staff worked hard to make that delivery as happy as they could.

9. I expected pregnancy to be a time of learning and self development and I was not disappointed. Though at the time feeling sick and terrified every day was pretty horrible, I had a great counsellor during pregnancy who taught me to trust my body and my instincts. He also taught me self hypnosis and guided relaxation which I still use now.

10. I expected to come home with a baby and I did. My heart goes out to all the women I have met on this journey who have not taken their babies home. And as sad as I may be about my expectations being dashed, I can only learn from what happened to us, and work to help others. All of us who are pregnant expect to bring their babies home, lets work together to make that a reality.

Monday 11 June 2012

Campaigning for Bliss - What is it All About?

If you read my blog post yesterday you will know that I attended a Bliss Campaigner's Training Day. I started to think about campaigning in the run up to the last election, and emailed my local MP David Nuttall. Bliss make it so easy and if you want to get involved in even just a small way visit the website and find out how.

Joseph and I meeting David Nutall MP for Bury North last year

I met with my MP at Westminster in November last year, but since then have gone a little cold. The main reason being is that as well as having a lot on in my own life, neonatal services in the Greater Manchester area have gone through a gigantic shake up, and now I am ready to get going again.

So just what are we campaigning for exactly? Bliss' latest campaign is SOS Save our Specialist Nurses. So just why is this so important and why do they need saving?

Not all nurses are equal. All nurses are vitally important, but as you can appreciate within nursing are a number of specialties. Looking after the smallest, sickest of babies takes special training, experience and qualities. Not only are you nursing that baby, but you are looking after the whole family, and training them, so that in time they can take over the care of that baby.

One of our amazing nurses give Joseph a bath
 When Joseph was spending his 24 days in the Intensive Care Unit we had a team of amazingly brilliant nurses. They stayed calm, they taught us his care, they anticipated problems. The biggest thing that three of my favourite ones did for me, was tell me when I needed to fight. There were a couple of times where there were controversial things being suggested, and they would give me a heads up as to best practice, and give me information.

What is a specialist nurse and why are they under threat? A specialist nurse is one who has done post qualification training in neonatal care. A nurse can work in a unit without this, but usually under the supervision of experienced staff. The Neonatal Toolkit, a Department of Health and NHS document, states that the benchmark is that 70% of nursing staff should be qualified in specialty. Some units are hitting this benchmark, but worryingly this is not the case for all units.

What is happening now under the current financial pressures is that the NHS is being asked to make efficiency savings and cut their expenditure. This part of the Bliss campaign website explains more about how this is being done.

My next steps as a campaigner are to ask my MP to find out our updated figures for the number of specialist nurses in our units. The figures I currently have are before reconfiguration and I need to know how this has affected that figure then act accordingly. I hope to meet with my MP in the lead up to November's activities, and see how we are doing, and where we need to go from here.

Campaigning is as involved as you want to make it. If you just want to send emails or letters, then that is fine, but I would urge you, that if you care about the care these tiny babies receive, that you join me in campaigning to save our specialist nurses.

Sunday 10 June 2012

A Busy Time - An Update

Apologies for the radio silence over the past two days. I was whisked away to the Norfolk coast for a few days, to relax and recharge. The weather was typically British, but in between the showers, we managed some fun times like donkey rides on the beach and stuff. Unfortunately my smartphone is still out of action so not much in the way of pictures for me until I have it sorted.

Whilst I was away I went to London and visited the lovely Lissy Green at Bliss, who is immensely passionate about volunteering, and I came away from the meeting full of ideas and inspiration. And, she has put a daft idea in my head about doing a half marathon next year, but we'll see. My poorly knee is still bad so off to the doctor this week. It would be an amazing achievement, and if I pick somewhere pretty to do it, that would be a good thing.

I then met with the amazing Vicky and Dawn at Tommys. I'm really excited about seeing them both at Britmums Live, which is less than a fortnight away! If any of you are coming to Britmums, look out for them, and come and say hi. Tommy's are just fabulous to work with from a blogging point of view and I'd have got a lot out of blogging for them, and learnt so much.

Saturday was spent with some amazing parents, all of whom campaign for Bliss, getting our politicians to stand up and take notice of the tiny lives we fight for. There is so much pressure on neonatal care in terms of the NHS rationalisation and changes, and small babies get easily forgotten. I've come away with renewed focus and determination to get on with more campaigning and fact finding in our area, especially after all the changes with the Making It Better NHS initiative in our area.

I was really inspired by the other parents, and their determination, their stories, and their desire to do something for other babies and parents, finding themselves in a neonatal unit. I hope to bring you news of our progress. I am also hoping to persuade some of the others to join us in blogging, as its such a great way to bring a positive message about premature babies to the world.

Normal service has been resumed, and I'll be bringing you lots of news in the coming weeks I am sure!

Wednesday 6 June 2012

In The News - Mental Health and Premature Birth

I was alarmed this week to read in The Telegraph an article titled "Premature babies more likely to suffer mental disorders as adults." How to terrify a parent in one easy step. Concerned, I read further, and have look at some other source articles as well.

About this research: The babies studied were born between 1973 and 1985 and experienced their first episode of mental illness by 2002. The study looked at every person admitted into a mental health facility and then investigated the circumstances of their birth. The mental illnesses identified were severe depression, schizophrenia, psychosis and bipolar disorder.

What were the findings: The research found the risk was greater for babies born before 32 weeks of pregnancy. They found that these very premature babies had twice the normal chance of schizophrenia than term babies. One of the researcher Dr Nosarti states:

‘The strongest association we found in this study was to mental health disorders known to have a strong biological basis, such as bipolar disorder, further adding to the theory that neurodevelopmental differences in those born prematurely may play an important role for later mental health.’
Are there any recommendations: Personally the Telegraph article, and others in a similar vein including on the BBC website really annoyed me because it didn't report the recommendations arising out of the research. Dr Nosarti goes on to say that very premature babies should be monitored carefully and offered additional support and intervention as appropriate. We know that the outcomes for serious mental illness are much better if its picked up and treated proactively, and in the community if at all possible. 

What I think: I think first of all we need to bear in mind that a lot has changed in early intervention, and pregnancy care since the last of these babies was born in 1985. We often think of corticosteroid therapy as essential for lung development, but improved lung and respiratory care means better brain development. Also back in the 1970s and early 1980s neonatal care was vastly different than what we have now. Parents often did not have the opportunity to interact with their tiny babies, some weren't even allowed on to units at all,  now we have kangaroo care, developmental care, and parents and babies are encouraged to bond very early. I know Dr Nosarti is concentrating on biological factors, but I do think sound developmental care of neonates makes a difference to brain development, from what I have witnessed and read. I'd love to see this research repeated in 20 years.

I was reassured by the BBC quoting Andy Cole from Bliss, who says

some of the people in the study were born "40 years ago and that neonatal clinical practice to limit neurological damage has been transformed over the past four decades, with significantly improved outcomes seen today."

I think, like many of the other studies, this information is useful for professionals, and if its used to be proactive in ensuring our premature babies get excellence in care well into adulthood, then that can only be a good thing. It also needs to be taken into account by professionals that prematurity can have lifelone effects, and should not be discounted as a factor, throughout the life of that child. However scaremongering, and making already worried parents more fearful than they already are, is a bad thing, and I do think this could have been much better reported by the UK press.

Tuesday 5 June 2012

Lunchtime - Rebecca Cobb - Review

The kind folk at Macmillan sent us a lovely book to review called Lunchtime, by Rebecca Cobb.

The book we were sent is hardcover, which is my preference for reading, we find it much easier to read hardcovers to Joseph as he perches on our laps.

 From a parents perspective, I love the illustrations. They are hand drawn, there is lots of white on the page so the illustrations of the small girl and her animal friends are vibrant and really stand out, making it easy for a young child to follow the story.

There's a great ratio of words to pictures on the page, and the story is short and snappy, so perfect for 2-5 year olds. The story is quite funny for grown ups too, particularly, like me, if you have been waging the fussy eating war, or the "I'm too busy to eat mummy" war as we have, it's a reassuring read!

We often have dinosaurs sitting at the table, who threaten to eat Joseph's food if he doesn't eat it first, so I think he related to it well. 

Joseph responded well to the story, and laughed at the animal characters. He repeated the words, which is a sure sign of acceptance. The illustration style reminded me of "The Tiger Who Came to Tea", so I wonder if that's what lead to Joseph willingly accepting a new book!

I would highly recommend this lovely book, and I think its one of those that would become a firm favourite and because of the way it is written will become one of those books that makes the transition from a book that is read by the parents to being independently read.

Lunchtime by Rebecca Cobb
First published 2012 by Macmillan Children's Books
ISBN 978-0-230-74952-8

Sunday 3 June 2012

Life begins.....

Well how did that happen? 40! Is it me, but when I was a kid 40 seemed impossibly old, but now I don't feel a day over 21!

I'm quite zen about turning 40, it's just another number, isn't it? And milestones are always nice to reach, and pass, quite sobering to think the next stop is 50!

What is really weird is I have friends on both side of the pond who are grandparents at 40, and I'm the mother of a toddler/preschooler, so grandparenthood "should" be a while off for me yet (please Joseph!)

So much has happened in the last 10 years since my last milestone birthday, settling in to my new country, meeting my husband, having a baby, starting a blog (which in some ways is a lot harder than making a baby).

Thank you to all my friends and family who have mopped up my tears, shared my joy and carried me through the last 40 years, and here's to the next 40!

I leave you with one of my favourite songs, sung by a favourite artist of mine, that mentions my date of birth!

Saturday 2 June 2012

The Diamond Jubilee - A Republican's View

by lizsmith on Flickr  
Don't get me wrong, I am very fond of our Queen and Royal Family. I swell with pride when I pass Buckingham Palace. My beloved grandmother was a Royalist, and always wanted me to move to England, she'd be thrilled that I live here, have married here, and have a child. Her sister attended a Buckingham Palace Garden Party well before I was even thought of. Much to my own amusement I went to school with a now Princess, Princess Mary of Denmark, she was in my year, in my school!

In 1999 Australia held a referendum asking if we would ditch the monarch and accept a President as our head of state. Like many other Australians I voted no, to retain the consitutional monarchy. It stuck in my throat to do so, as I believe strongly that the Royal Family are expensive, are figureheads and don't serve a political or governmental role in Australia. However, the model that was proposed was inadequate, and undermined our Constitution, which works just fine. I didn't think a President, that was not popularly elected, was enough difference to warrant such a change. The referendum was a missed opportunity.

So in our house, there are no celebrations tomorrow. No flag waving, not even a Victoria sponge in sight. I grew up with a urban myth perpetuated by my mother and I'm not sure how true it is, that my mother was in labour on the 2nd of June with me, and was determined I would not be born on the anniversary of the Coronation, and held on until 1.03am the following day.

I do feel somewhat churlish that we are not celebrating today. I wonder whether in future years my son will be disappointed that we didn't mark the Silver Jubilee, although they did make crowns at preschool today! I've walked passed shops full of tat for the past month, and resisted the Jubilee cupcakes and teapots and other paraphenalia. I was, however, tempted by a Queen and Prince Philip set of garden gnomes.

I have to say, I can't imagine the United Kingdom without the monarchy, I can't visualise what a republic would look like, and I don't think I'll ever see the demise of the monarchy in my lifetime. However in my heart, I remain a republican Australian, so no jingoistic flagwaving from me today. Besides which I'll be at work!

I don't want to rain on anyone's parade and hope for those who are celebrating it's a happy day full of sunshine, cake and Pimm's!

Friday 1 June 2012

Syria #tippingpoint

What am I? I am a mother. I am a blogger. I am a care worker. I live a nice little life in a western country. I can go to bed at night, pretty sure that I am safe. I have enough food to feed my family, enough money to cloth my child. I am not a politician, a human rights lawyer, an international aid worker.

What do I have? A tiny corner of cyberspace where I blog about my son, about pregnancy, about babies, help out the odd company, blog for charity, cry, work out my feelings etc.

You know what else I have? A community of caring bloggers who want to make a difference. Britmums have brought to my attention that today is a call to action for Syria.

photo by Jungle_Boy on Flickr
I feel so sad about Syria. It seems to have just been brushed under the carpet but a couple of months ago a neonatal unit was shelled and innocent babies, who already had the fight of their lives on their tiny hands, died, in their incubators. This killing has to stop. Someone needs to make this stop.

If you want to learn more there is a video here from one of the survivors of last week's massacre in Houla, it's incredibly sad.

I know that I blog a lot about charity, and sometimes I worry that you might all start getting charity fatigue, or bogged down by sad stories. And there is a lot of sadness in the world, alongside immense joy too.

But this is too important to ignore. 49 innocent children killed in Houla, in their beds, living their lives, not out protesting or causing trouble. And what is so upsetting is that aid agencies cannot get in to where they are needed to help the survivors. And what is certain, is that if you are a child living in Syria, you are not safe. We need to make these children safe.

I'm not asking for your money, I am asking for your voice.  A simple thing you can do is sign the Save The Children petition.

If you blog, I'm asking you to add your voice. If you tweet, then use the hashtags #tippingpoint #syria #stopthekilling

I'm just a mum. But I have a voice. And I want you to listen, and I want you to act.