Not Even a Bag of Sugar

Boomerang Play Centre - Our Favourite Place to Play

2012-02-24T07:42:00.000Z

We are huge fans of Boomerang Play Centre, which is located not far from where we live in Bury. Unusually for a soft play centre, Boomerang is a charity. The centre opened, after lots of hard work, in June 2011, to provide a place for all children from all abilities to come and play.

The centre is divided into three rooms. There is a beautiful sensory room with a waterbed, a ball pool, and lots of different lights. It is a very calming place to be unless some mother brings their two and half year old monster who insists on doing backward flips into the pool, in which case she should swiftly remove him into one of the other rooms!

This is the awesome interactive mat. It has several different scenes that come up in rotation, this is a disco dance mat. It also becomes a fish pond, a meadow with flowers, a football pitch and a frog pond, amongst other things. It truly is amazing!

The third room has a big play gym, as well as floor play. There are xylophones on the wall for music play, a huge ball pool with beautiful clear balls like bubbles and two slides.

In the corner is a little cave, a mirrored room with twinkly star lights. I love this little corner, and sometimes Joseph will sit with me and sing "twinkle twinkle".

Boomerang is a lovely place to play for all children, not just those with special needs. It's great for babies, and especially babies born prematurely, everything has been carefully thought through. There are ceiling track hoists throughout if your child needs them, and the toilet is fully accessible, with a hospital bed for change times. The seating area is seperate from the play area, so kids are always fully supervised by their parents, which I love. I'd feel very comfortable bringing a baby here, and there were lots when we visited.

The cafeteria is exceedingly reasonably priced, and there are things for the children to do whilst you have a lovely hot coffee. The kids food choices are very good as are the adult ones!

Entry is £4. At busy times there is a limit of one hour, and you are advised to ring in advance as sometimes the centre is booked for exclusive use, or some rooms are out of action with private bookings.

Boomerang Play 0161 764 4842.

Twitter @boomerangplay

This is a non-sponsored post, we just love Boomerang!

12 is the Magic Number

2012-02-23T07:52:00.000Z

12 is the Magic Number - a Meme

I've been tagged by the lovely Sunniva Anne who blogs at the Kitchen Mechanic in this meme. Because I am, of course, utterly fabulous, I have also been tagged in a similar one, although its 11 questions, by Claire Sarcone at Mummy of Many Talents . Now because Sunniva Anne was first I will follow her rules and questions!.

You must post the rules Post 12 fun facts about yourself in the blog post Answer the questions the tagger has set for you in their post and then create 12 new questions for the fellow bloggers you plan to tag Tag 12 people and link to them on your blog Let them know you tagged them

1. I've just come back from a "knitting and numeracy" course at our local children's centre.
2. I have discovered that I've been knitting incorrectly since I learnt when I was 10. Whoops.
3. I started knitting a jumper for Joseph before he was born and lost heart when he came early. I turned it into a tiny blanket!
4. I regularly write for A String of Pearls, and find it daunting at times, but lots of fun
5. I enjoy cooking soup, and that's what I'm doing whilst I type this.
6. My husband never annoys me.
7. I am not good at lying.
8. I never seriously consider moving back to Australia.
9. I'm terrified of potty training Joseph, and don't care if he's in nappies til he's 12.
10. I really miss having extended family around me.
11. I enjoy travelling all over the place to visit our far flung family.
12. It still amuses me that you can drive to Europe from England.

Here are Sunniva Anne's questions:

What is your favourite “Must Read” Blog? I try to read blogs on a regular basis, but I regularly visit Typecast and its my go to blog for blogging quandries.

Tea or Coffee? I prefer the taste of coffee to tea, but drink both.

What is your preferred form (if any) of exercise? Long walks.

What is the last book you read, that you already want to read again? I'm not a good reader of books, but probably the Time Traveller's Wife.

What is your favourite meal of the day and why? Our evening meal, all sat together, sharing food and ignoring the toddler.

What is the first word that pops into your head when you read “shenanigans”? Um, rumpy pumpy aka sex

What’s the most northerly place you have ever been? Glasgow I think. Scratches head. Geography not a strong point.

Which do you prefer? Dark, White or Milk chocolate? Dark chocolate

Do you prefer hand-made or bought presents? Definitely handmade.

You can invite five people to dinner party, two real, two fictional one dead, who would they be and what would you serve to them? Clive Stafford Smith who is a humanitarian lawyer, Germaine Greer the feminist, Pollyanna as I love her, the Gruffalo and Peter Ustinov. I'd serve a seafood platter (mice for the Gruffalo) followed by zucchini slice, tomato pickle and salad, ending with a big pavlova.

What would your dream job be? Human rights lawyer in the deep south of America

What time zone would you rather be living in? Difficult one, this one is just fine.

Here are my 12 questions

1. If you were baking purely for enjoyment, what would you make?
2. What 3 songs would you take with you on a desert island?
3. What book do you wish you had never read?
4. What is your all time favourite item of clothing?
5. If I gave you £100 to spend today what would you buy?
6. What country would you love to visit?
7. What piece of advice would you give a child - doesn't have to be yours?
8. What is your favourite chocolate?
9. Who is your least favourite celebrity?
10. When at a restaurant what part of the menu do you look at first?
11. What is the best photo you have ever taken?
12. What's your favourite thing to do at weekend?

Now I am being naughty. If you read this and fancy doing it, your tagged!

Ring of Roses - Mums of Premature Babies Working from Home

2012-02-22T08:03:00.000Z

One of the things I want to do with Not Even A Bag of Sugar is create some resource pages. My plan is to have a page of premature baby product resources, a page of charity links, and also a page promoting the work of mums who have chosen to work from home. If you would like to have a little promotional advert on my page contact me. It is free and always will be.

My first mum that I am featuring is Laura, mum to Rose. I met Laura through Bliss, and am in awe of the beautiful things she makes and sells on her Ring of Roses Facebook page. Here is their story.

My pregnancy was not easy from the start, I bled from 8 weeks and was hospitalised on many occasions but they couldn’t identify any reason for it. Eventually, I was diagnosed with placenta previa. They ran through the risks with me and put me on bed rest. Unfortunately, 22 weeks saw a big bleed, and the phrase ‘not viable’ was used, I became more and more disconnected with my unborn baby, I didn’t want to love someone who wouldn’t make it.

At 29 weeks, I was scanned and told that my placenta had moved! I was very relieved and despite losing my plug, I managed a couple of weeks of ‘life after bed rest’. Unfortunately at 32 weeks I thought I had wet myself in the car, on investigation, it turned out that I was bleeding, and badly. I made my way to hospital where my uterus contracted (at least I had one!) and stayed that way. Hooked up to monitors, all I could do was lie and wait as my body spontaneously gushed with blood and doctors decided how best to manage the situation. It was explained that it was a balancing act, leave baby in so I could get both steroid shots, but not leave her there too long so that both of us end up in trouble. Somehow I made it through the night, I was eerily calm, pressing the buzzer with each gush and refusing all pain relief. About an hour after the second injection (they are 12 hours apart) there was a pop and a huge gush – and the midwife happily announced that I’d wet myself...I’m sure you’ve already guessed, it was my waters. A second gush came and a doctor confirmed that indeed my waters had gone. The room was then a buzz with medical staff, forms for me to sign and talk of ‘risks’ ‘complications’ and ‘NICU’. The c section was like an out of body experience, I remember the surgeon peering over the screen and happily saying ‘OK, let’s have a baby’ and me thinking ‘this woman’s on crack’.

My beautiful little girl was delivered on 2^nd September 2010 weighing 4lb 4oz. She breathed unaided for 8 minutes before encountering difficulties and being intubated. I was in recovery when this happened and was told that they couldn’t take me to see her at that point because she was being worked on. My response? ‘OK’! I was eventually wheeled through to the world that is NICU; beeps, alarms, smells, feeding tubes, canulas, ventilators, CPAP... None of which I had a clue about. My little girl was snuggled up with tubes and wires, all I can clearly remember was that she had lots of hair and a hat on that I would never have chosen for her (her clothes became somewhat of a distractive focal point to me during our stay!).

As any prem parent can relate to, it takes a while to adjust to life in NICU. I was blessed with somewhere to stay for the entirety as the hospital had a patient hotel with suites specifically for NICU parents. I became more established with my little girl’s routine, expressing 3 hourly day and night, doing her cares, doctors rounds, tube feeds and weigh ins. Somehow, I managed to miss that she was losing weight, and a lot of it. When she got down to 3lb 6oz, they added fortifier to my milk, only confirming to me that I was failing her yet again, even my milk wasn’t good enough for her. I had no emotional connection with her, but I did do kangaroo cares (whilst double expressing, a prem Mummy triumph!). Her name was chosen on around day 3. Her middle name is Joan, after my Grandma, and her first name is Rose, after the flowers we had at her funeral. It’s a fitting tribute to the most wonderful woman I have ever known.

We came through the NICU experience relatively unscathed despite being treated for suspected sepsis and having her feeds stopped. She took her time coming out of the incubator into a cot as she couldn’t maintain her body temperature, and she had the odd brady and apnoea, but she tolerated (another NICU term) her feeds very well. No surprises there, as she loves her food now! After 17 days, we were discharged with our 3lb 15oz little bundle.

The next 6 months were pretty awful. She didn’t sleep. At all. She breastfed for an hour and a half at a time only to start again an hour and a half later. Then she stopped gaining weight and had to go onto prem formula. She stopped breathing on me (thank goodness for resus training) and it became apparent that I had no bond with my daughter. Her needs were met, but I didn’t love her. I received some wonderful support from the ladies at BLISS when i finally realised I’d missed my ‘rush of love’. Although I’ve accepted that I’ll never have ‘that’ moment, I am still insanely jealous of those who have experienced it.

I am pleased to say, that I am now totally and utterly in love with Rose! She is the most wonderful 17 month old; caring, funny, cheeky, sunny natured and finally starting to learn to walk. In terms of her development, we’re getting there. She didn’t smile until she was 17 weeks, roll until she was 9 ½ months or crawl until just before her first Birthday, but I was a very lazy child and they think she’s following the familial line. She’s been referred for ongoing reflux problems, and there’s some worry over her gross motor skills and speech, but when she’s at nursery, she just looks like any of the other toddlers her age.

At the same time as Rose decided to start crawling I got made redundant from my job in CAMHS. I was devastated as I loved my job, but the new hours which were available just wouldn’t work for me. I was then left in a difficult position: I had limited childcare (Thursday and Friday) and I was now a single Mum, so I needed a job which I could make the hours work for me, and around Rose’s needs. Thus, Ring Of Roses was born! I went to art college when I was younger and my Mum is also an artist, so it was natural for me to venture into this area of work. I had developed a technique whilst at art college, which allows me to transfer images onto different surfaces, and after some experimentation, the first of my products began to develop. The range has continued to expand and I now have a wonderful following on Facebook with steady orders flowing in. I have also been lucky enough to secure another job 2 days a week to support us whilst my business becomes more established. My ultimate aim, is to be able to donate 10% of each sale to BLISS, as a way of saying Thank you and a way to help them continue the wonderful work that they do.

My Little Survivor - #dosomethingyummy

2012-02-21T07:03:00.000Z

It's the final week of the #dosomethingyummy link up, raising awareness for the children's cancer charity CLICSargent. I cannot tell you how much I have enjoyed this link up, and a huge thank you to Nickie at Typecast for all her efforts. I hope these link ups have inspired you to #dosomethingyummy. I hope to do something yummy from 10th - 18th March. If you blog, please link up this week. You don't have to write an epic. Just write from the heart, even if its just a paragraph or two. Lets make this last week a big one.

The prompts are great ones again, unfortunately vlogging is not my strong point and I am not sure Joseph is quite up to it yet anyway, so I have chosen the first prompt. Tell us your story of survival. What did you overcome? For regular readers you may know this story already, but my heart felt it needed retelling.

My teddy bear 40 years old this year - a symbol of survival

My baby was born 5 days ago. My milk has come in. My boobs are in agony. My head is all over the place. I feel elated, depressed, excited, fearful, alone, overwhelmed, I just can't find any space to think and clear my head. I haven't been outside since I entered the hospital in the wee small hours of Thursday morning. It's now Tuesday.

I walk into the neonatal unit to take yet another pot of milk my baby can't drink. I put it in the freezer. A doctor comes. I can't really hear what he's saying, but it isn't good. Yesterday Joseph was fine, today he is critical. So fast. So unexpected. And I can't see him. Another x-ray. The NICU is in lockdown and will be for a good hour or so. I go up to my room and try to read, but its useless, the words aren't making sense. I turn on the television. It's all garbage about corrupt politicians and duck houses. Nothing is making sense.

I go back to the unit. Another doctor comes to me. I am still not understanding it all, but it definitely isn't good. I hear the words "suspected NEC". From my brief knowledge of premature baby complications I know this is really not good. I hang on to "suspected". Suspected means it might not be, doesn't it? I go and see my baby. He looks sick. He has no energy. He's not kicking. His tummy is distended. His skin around his umbilicus is black. I pray. I go back to my room. I cry. My husband comes in, finally. i find it barbaric he is restricted to visiting hours when we are in bits and could lose our baby.

We go down to the unit. Corey looks scared. We have decided the best approach is to be positive. I am serene, like the proverbial swan paddling like mad under the surface. I sing to my baby, I talk to him. Worry will get us nowhere, I decide. I don't want Joseph to feel any anxiety. I want what little energy he has to be diverted to getting well. To living.

My husband decides we should go to the cafeteria, get some fresh air and try and eat. As I enter outside my head spins, the air hits my nostrils. I feel a little cold, even though its a warm May day. My skin has not been in contact with fresh air for 6 days and it feels very strange. We sit in the cafeteria and chat, having a drink my tea tastes like metal. It's horrible. I eat some chocolate, having been told by one of the consultants that it is good for milk production. I can't taste it, and its texture is like chalk. I feel numb. I can't seem to process anything around me properly.

In the afternoon the important consultant who has been brought in to see Joseph comes to see me. He puts his hand on mine. He tells me I am too calm, that I don't understand. He tells me my baby is dying.

He's just told me my baby is dying.

How do I process this? What do I say? I stare at him. "My baby is a survivor, he is a fighter. I have done my job, I have brought him here safely. Now you do yours and don't you dare give up on him because I haven't". I leave. They are working on him. 4 big pairs of hands around his teeny bird like body.

I feel sick. Did I just say that? Should I have said that? Should I have left? What if he's right? What if I am losing my baby? Oh God Oh God, please please please give me strength to get through this. Please give Joseph strength to get through this. I can't lose him, not now. I slowly walk up the stairs and go back into my room.

What happens next is a blur. My room has been ransacked. Joseph's teddy bear has been stolen. I lose it. Big time. I can't stop crying. I am frantic. I furtively check through my drawers. Everything is still there, money, iPod, phone, camera. God, the camera, thank God they didn't steal it. Midwives come and see me, hold me, cuddle me. They realise this isn't about a lost bear. This is about a baby. A baby I could lose. My notes are read. Everyone is worried. That I am officially, clinically losing the plot. It is decided that I need a psychiatric evaluation. I agree to this. But I am confused. I have no idea how someone in my position is supposed to act. But it appears I am getting it wrong. I want my mum. She is in Australia. I want this to stop. I just want to hold my baby. I want my baby.

At midnight the doctor comes to evaluate me. She wants to alter my blood pressure medication. I refuse, I explain to her this one was chosen as the other can aggravate asthma. I explain my mental health history and what is happening today and why I am so up and down. She smiles. She says I am not mentally ill and she doesn't know how I am meant to process all this either, and to try and sleep. She tells me she is sorry. She has tears. I put my head down and sleep, amazingly, comes.

Later, much later, I go down to the unit. As I walk down the corridor the automatic lights start coming on. It's dark and quiet. It feels like the light is anticipating my movement, like the ward knows I am coming. I ring the bell and am let in. It's the wee small hours. The machines that were going mad earlier beep reassuringly. Regular, monitoring beeps. Not scary beeps. Blood tests are back. Joseph is rallying. His infection markers have improved. He looks a little better. The night registrars come to me and tell me that there is a long way to go. A very long way, but things are looking better and he is stable.

Joseph is looking better. I don't give up praying. I keep singing. I keep as serene as I can.

I believe. I believe in my team, in my baby and in God.

And my faith is rewarded.

Joseph is a survivor.

And, so am I.

Life's Little Treasures App for Premature and Sick Babies

2012-02-20T08:00:00.000Z


Image courtesy of Life's Little Treasures

I have recently learned about this fantastic app created by Life's Little Treasures, an Australian premature baby charity.

I have to say I am very much a newcomer to the world of smartphones, having only acquired one recently. It amazes me how much information you can have at your fingertips. I wish I had had one when Joseph was in hospital. Mine very cleverly instantly uploads all my photos and video to Google+ which saves me loads of time, this alone would have been wonderful.

One of the hardest things about NICU is the terminology, and the numbers, lots of numbers, and keeping track of information when you are under immense stress is not easy. Grams of weight gain, mils of milk intake, oxygen saturations, it is dizzying. Carrying a notebook and pen became essential for me, but how great it is to have a neat electronic way of recording the numbers and seeing your baby's progress.

Some of the many features that the Premature Baby Journal app includes are:

Records baby’s birth details
Keep journals for multiple babies
Converts actual age into corrected age (weeks)
Tracks weight, feeding, expressing and temperature in graphs
Tracks milestones and allows you to upload photos
Records number of feeds, time of feeds, amount of feeds and method of feed
Records total feeds given to baby per day
Records number of expresses and amount expressed by mother
Set alarm for when next express is due
Record your feelings of all family members in journal section
Set reminder for questions to ask to match the doctor’s rounds in hospital

And of course, you have that information in the years to come as well. I often now wish I had a better record of Joseph's time in hospital, especially as people as me questions, and over the passage of time I have forgotten some of the detail.

Currently the app is available for iPhone users and plans are in progress for an Android version. The application costs a very small amount, less than £3. There is also a free app available of NICU words, which would prove invaluable I am sure, to any person thrust into the world of NICU.

This news article from Channel 7 shows the app in action.

Cubby Kits

2012-02-19T09:00:00.002Z

“What a brilliant idea!”

If either a lack of inspiration or a lack of pva paint, glue and glitter prevent you from doing arts and crafts with your little ones, CubbyKit is here for you. All boxed up and with free delivery, the hard work has been done for you, so that you can get straight on with the business of creating fun projects with your child. CubbyKit themes have been carefully selected and our activities are tried and tested.

So how does CubbyKit work?

Join up at www.cubbykit.com by selecting which age range you’d like. CubbyKits come in two age groups: 3-4 years and 5-6 years. Every month your CubbyKit arrives at your house addressed to your child and contains 3 separate activities with all the materials you need. Everything is measured especially for your kit, saving you time and reducing waste. Our themed picture guides enable you to produce creations you and your child will feel proud of and play with for hours. We include extra crafts bits and bobs and plenty of ideas.

Drawing on memories of fun from their own childhoods the creators of CubbyKit have designed Kits with a different theme every month: it might be Outer Space, the Olympics, Kings and Queens or the Great Outdoors. All ideas are inspired by projects children will revisit when they start school. So you’ll be giving them an introduction to those ideas whilst enjoying easy, hands-on fun together. You can be assured that before CubbyKits are sent out, they have been reviewed by advisors and tested by children themselves.

Lisa, mum of two and CubbyKit creator says she believes that the educational aspect of CubbyKit is what makes it so exciting. “Each CubbyKit encourages children to immerse themselves in something new which will complement what they learn in school. Whether they are exploring the wonders of Outer Space or playing traditional (but home made) instruments from around the world, they’re using their own imaginations to get there”.

At £19.99 a month or £199 for 12 months (a saving of £39.89 or 2 months free), CubbyKit is great value.

To meet the creators of CubbyKit, see inside a sample Kit and to subscribe today, visit www.cubbykit.com or email cubby@cubbykit.com for more information.

Above post is sponsored, and I have received a Cubby Kit which I will review at a later date.

Happy Anniversary - Two Years of Not Even A Bag of Sugar

2012-02-18T08:00:00.002Z

I cannot believe it's been two years since my first tentative post here at Not Even A Bag of Sugar. When I first started blogging I had no idea what I was doing. Unbelievably I didn't even know there was any such thing as a "mummy blogger" and much less a supportive, loving, slightly mental community of mum bloggers, from all walks of life.I had not idea there were rules, and that I was breaking loads of them!

About the name: Reading back through my posts I realised I'd never explained about the name of the blog. When Joseph was first born lots of people said to me "oh he's not even a bag of sugar, is he?" It really upset me. I felt like Joseph was being dismissed just because he was small. I hated that term. I decided that as it was said so often, I may as well "own" it. So it became the title of my blog. And now, I adore it. Lots of people still say "oh he wasn't even a bag of sugar" and it's a great lead in to say "well that's my blog title, here have a card, go and read!"

Any regrets? I am really proud of where my blog is at now, and I sort of wish I had known what to do earlier in terms of improving the ability of Google to pick up my posts, and reaching out to other mum bloggers. I do sometimes wish I had reached out to charity earlier, however, I am quite pleased that I let the blog grow quietly over time, just starting with family and friends.

What has been the highlight of the last two years? In blogging terms, there have been many, but I think really the turning point for me was Cybermummy. I realised that I could do a lot more with my blog, and that I could improve my skills. I also realised I had something valid to say, and that I was on the right track with what I was doing.

What has been the low point? I think there have been two. After a couple of months I lost my way, and nearly gave up. I should have used Twitter to find more support and get help. The other was a damn steep learning curve as to how to handle negative comments which occured on a post that actually gets the most views on a weekly basis! I have left them there because it's a reminder of how green I was!

What do you think Joseph will think of it when he is older? I do hope Joseph is proud of me, and proud of himself, and can read posts with fondness. I do expect some "oh mum how could you" moments!

What advice would you give a new blogger, particularly a parent of a premature baby? For the first few months, just write. Tell your story with integrity, in your own words. Don't write for an audience per se, just write, get it out there. You can, although I haven't, remove or rewrite posts later. Don't worry about matrices, lists, stats etc, for the first 8 months I didn't even know stats existed!

What about a blogger who has lost heart? Be honest with yourself. Do you enjoy blogging? If you don't, maybe walk away, or try something new like a picture a day, or writing fiction. Dont feel constrained. Reach out and find some mentors. There's loads of support and help out there, look for it.

Where do you see the future of Not Even A Bag of Sugar? I'm not sure, I'd like to think I'd be blogging still in one year's time, beyond that, I am not sure. I'd like to look at my skills and learn more, maybe some more HTML and improve my photography. I'd also like to support more new premmie bloggers, as I think there are some wonderful ones out there already, and some waiting in the wings. I do think blogging is so powerful, to help one to make sense of things, to get and give support, and to just share stories, and get things out there into the public domain.

What has surprised you the most about blogging? The one thing that never ceases to amaze me is that you never ever know who has been reading your blog. I was stunned to see a quote from me in the Guardian after Cybermummy, and I've had approaches from various sources which have surprised me.

What would you like to say to your readers? Thank you so much for all your support, comments, votes, hugs, words of advice, both on blogging matters an with Joseph, and most importantly my struggles over accepting that we will always be a family of three. I have been overwhelmed at the love and care I have been shown.

There are some really special people I have met through blogging, and I've made some lifelong friends.

I am so happy that I have become a "mummy blogger", and look forward to seeing where things go in the coming year.

Circle of Moms - Don't Just Vote for Me!

2012-02-17T07:41:00.000Z

Circle of Moms is an application that runs alongside Facebook and is something I used a lot when Joseph was small. I discovered that they have a bloggers network, which I have now joined.

Circle of Moms run regular contests, where people vote for their favourite blogs in certain categories. I have been nominated in "Moms with inspiring families".

You can vote every day, but you can also vote for as many blogs as you like. There is only an advantage in coming in the top 25, no prizes for 1st place, so I would urge you, if you are voting, to vote for the blogs that speak to you.

I have been in tears, some of the stories are just so sad, and there are blogs just as, or more, deserving than me in the top 25 and I've been voting for loads!

One of my friends, Jennie, has also been nominated for her lovely blog Edspire. Another lovely blog is Sleepless Nights, written by a Tasmanian mummy blogger.

If you blog, keep an eye out for categories on Circle of Moms that you can enter. The incentive is that the top 25 blogs are interviewed and the quotes used on the website, and may increase your readership.

I think the loveliest thing about these sort of awards is reading more blogs and meeting other bloggers. I am surprised that there aren't more premature parenting blogs on the list, so come on and join in!

Blogging for Charity - Blog it Forward

2012-02-16T11:48:00.000Z

Regular readers will know that I regularly blog about charity, in particular Tommy's and Bliss . More and more, charities are finding that using bloggers is a fabulous way of getting their message across, it has become the new "word of mouth", blogging, liking, sharing and tweeting are the buzz words that help charities raise awareness and funds.

When I first started blogging, I really wanted to work with charities in my area of blogging and had absolutely no clue as to how to go about it. The turning point was last year's Cybermummy conference, when I attended a workshop about "Blogger Activism". The main focus was Save the Children, and the work they do with bloggers, which is truly inspirational. Their current campain is #nametheday, which is a fantastic way to get started with charity blogging.

I put up my hand to ask how I would go about contacting charities like Tommy's, because I really wanted to work with charities who I felt a connection with. A representative for Tommy's just so happened to be sitting there, and we had a chat, and from then on I have worked closely with Tommy's. It's been amazing, and I've had some fantastic opportunities like going on ITV's Daybreak and national BBC radio. Never in my life did I think blogging would lead to such places.

I'd really urge any blogger who is wondering how to go about blogging for charity to visit Britmums for ideas and support.

If you just want to dip your toe in, join a linky like Typecast's #dosomethingyummy for CLICSargent, where you post on a topic then link it to her blog. It's a great way of getting started, and giving something back.

Charity is more than just fundraising, although that is essential, it's about engaging people and informing them, it can also be about entertaining them too. The CLICSargent campaign has been fantastic, and some of the posts, particularly this week, have been so much fun and very heartwarming.

I would like to make another special mention about Tommy's. Vicky, the PR I work with, is just the loveliest person, and so easy to deal with, and I now consider her a friend. I have so enjoyed blogging to help Tommy's with their aims and objectives. I am so proud of the work we have done around "Having a Premature Baby", and the Healthy Pregnancy Plan. I am sure Vicky would love to hear from other bloggers too, who would like to be involved.

I would urge any blogger to get involved with charities, and if you have a favourite charity look them up on twitter or Google and just reach out. I am pretty sure they will snap off your right arm, and the beauty of it is you can get as involved as you want, even one blog post, or bake sale, or run will make a massive difference.

Blog it Forward!

Strength in Numbers - #dosomethingyummy Week 3

2012-02-15T07:35:00.000Z

It's that time of the week again, my post for Typecast's #dosomethingyummy link up for CLICSargent. I am really pleased I have joined in, as I have learnt a lot about CLICSargent and the very practical support they provide for children and their families going through cancer. I do hope you have enjoyed these posts.

I would love to see Nickie reach 50 this week and have tagged Stacey at Nobody Said It Was Easy, Katherine at Mummy Pinkwellies and the lovely Mummy Beadzoid.

The prompt I have chosen is why is getting together with other parents is so important to me?

When Joseph was born, he was taken away from us, and put in a plastic box, in an intensive care room. Our hospital was small and whilst the room could take 3 babies, when there was a very poorly baby in the room, they shut the ICU room to new admissions. There was a very strict rule not to look at other people's babies, and not to ask intrusive questions.

My husband and I would walk straight into Joseph's room, sit by his incubator and just look at him. We were lonely. We wanted to share our joy, to talk to other parents in the same position as us, to just talk about other stuff, the weather, cricket, music, anything to distract us from what was happening. We could see people avert their eyes when we walked passed us in the corridor. Occasionally I would see a little glimpse from another parent, and then they would turn away again.

We both felt bitter that we had missed going to antenatal classes. I was looking forward to NCT classes as well as our NHS ones, but of course, there was no point once Joseph had been born. I felt very keenly that I didn't have a pre-existing tribe of mothers, and now the hospital rules was making it hard for me to form that tribe I so desperately needed.

In desperation Corey and I wrote a note and gave it to the nurses. I can't remember the wording now, but it was something like "please come and talk to us!!!"

Over the next 10 weeks I met many new parents, and their beautiful babies. People seemed so happy to know that they could talk to us, and could come and see the smallest baby in the unit! I wanted to show him off, not because he was tiny, but because he was ours. We made him, and we loved him. Not being able to feel and share joy was really hard.

By the time our journey in hospital was coming to an end a group of five of us had formed, Rebecca, Tash, Sharon, Lesley and myself. We met weekly for coffee and cake and still see each other regularly.

To me, sharing with other parents is so important. Parenthood, whether your baby was born early, on time, or late, is really hard, and its impossible to appreciate just how much, in an instant, your life changes. My mummy (and daddy) friends are so important to me, to share the joy and the pain, to learn from each other.

For me that circle of mummy friends is massive, and spans over the internet and real life.

I feel so grateful that I have gone from being that scared new mum of a baby in an incubator, to a happy mum, who loves to meet up for a natter, to share parenting experiences, and importantly eat cake!

Listography - Mugs

2012-02-14T07:27:00.000Z

I was struggling as to what to post for Valentine's Day, as Corey and I are probably one of Britain's most unromantic couples, and I stumbled upon this week's Listography. Perfect, thanks Kate.

This is my everyday mug of choice, we have a set of four. The blue is comforting and classic.

In a previous life we had a lovely coffee machine and had proper espresso on lazy Sunday mornings. I still have the espresso mugs, cool aren't they? Another TKMaxx find!

Slightly cheating, as I've only ever used this for dessert, but isn't it gorgeous? A charity shop find.

This is my afternoon mug of choice. It came in a giveaway bag at the Baby Show, and is from Cosatto. I love this mug! The dog curls right around the back of the mug.

This was the first present I ever bought my husband. We had just got together and I went on a weekend with some girlfriends to Amsterdam, and I saw these and fell in love! And we're still using them 6 years on.

Happy Valentine's Day husband!

Rawr - Dinosaur Boots from EMU Australia

2012-02-13T08:11:00.000Z

Much excitement last week when the delivery man knocked on the door with a parcel for Joseph, some lovely boots from EMU Australia, that we received following my post about their fabulous get together in Manchester.

Joseph's first proper pair of "ugg" boots. In Australia "ugg" is a term for sheepskin boots, it's only in recent years that it has become a brand. I always had them as a child and am so happy he has his first pair.

Now I must confess that generally I consider "uggs" to be inside boots, like slippers, however they are waterproof and robust, and the quality of the sheepskin makes them very supportive. Joseph is hypermobile and needs good support. And let's face it, its flipping cold at present so the nice sheepskin keeps him warm and toasty!

The children's boots retail at £80, which is somewhat of an investment, however with "ugg" style boots, I think its fine to order a size larger than the child's current size, as they are close fitting and there are no "mechanics" inside the boot to squish developing feet. I actually like plenty of room around the feet. In Australia and on the Continent its rare to find children's shoes in width fittings.

Thank you so much EMU Australia, and next winter I will definitely purchase the shark boots for Joseph!

*Disclaimer - we received a pair of children's boots from EMU Australia, all opinions are unbiased and my own.

Once Upon a Wartime - Imperial War Museum North

2012-02-12T13:04:00.000Z

I have loved the Imperial War Museum since it first opened in Manchester in July 2002, coincidentally, the same year I arrived in Manchester. Now I know a war museum may not be the first place in mind when you think about a day out with young children. I have just returned from a lovely couple of hours with Joseph, and would urge you to go and visit!

The Museum is situated in Salford Quays, further coincidence, where I used to work. It's an absolutely stunning building, and inside is spacious with plenty of room for little legs to run around. The current exhibit, running from the 11th February to the 2nd September is Once Upon a Wartime.

The exhibit tells the story behind 5 powerful children's novels - Warhorse by Michael Morpugo, Carrie's War by Nina Bawden, The Machine Gunners by Robert Westall, The Silber Sword by Ian Serallier and the Little Soldier by Bernard Ashley. The exhibits are very interactive. Joseph's favourite was the Welsh kitchen recreated from Carrie's War, complete with little cakes and a tea set.

What I really loved about the exhibit is that it caters for every age group. If I had say a child Joseph's age and an 8 year old, I could have occupied them both happily for a couple of hours. There is a "trail pack" with activities to get older children thinking about what they are viewing and looking at issues like loyalty, separation and identity. I found the stories incredibly moving. I read Carrie's War over and over as a child, and am working through Michael Morpugo's books. I am looking forward to reading Little Soldier, which is more a contemporary story of war.

The museum is very careful, in all its exhibits, to tell the human story behind war. It is very much a place of education, and of peace, not war, making sure that we all grow to understand the impact of war, on everyone, from the oldest to the very youngest.

I found it interesting today, particularly viewing the Carrie's War exhibit, that when I read this story as a child, I thought very much of Carrie's perspective, being sent away from her mum, but discovering this new world in Wales, that in many ways was much nicer, and more suitable for a child than the London she left. But today, for the first time I thought of the mother's perspective, and it broke my heart. How must it have been, to know you needed to send your child away to safety, but not knowing if you might never see them again? I couldn't imagine putting Joseph on a train, sending him to people I had never met, with war raging. It's unthinkable.

During half term the museum has a children's area with craft activities, story telling and a play area open every day from 11 - 4, which is suitable for very young children upwards.

I would urge you to go and visit this great museum and admission is free.

Listography - Top 5 Phrases That Drive Me Crazy

2012-02-11T13:54:00.001Z

This week's Listography from Kate Takes 5 has had some great responses and I thought I'd chime in too! I have to admit, that some of these I have probably been known to use......

The top 5 phrases that drive me crazy

1. There's an elephant in the room - Oh my word, is it going to stampede, what if it poos? Who cleans it up? What do we feed it? I had never heard of this one until my husband said they were doing an elephant in the room exercise at work. "What do you think you are?" I replied. "A zookeeper?" Unless you are, in fact, a zookeeper, do not say this phrase. It's annoying.

2. At the end of the day - I have long distinguished career as a pain in the neck. When in first year university I was concerned about changes in education in Tasmania and had a meeting with the state minister for education, Peter Patmore. The meeting went for 30 minutes. He said "at the end of the day" 27 times. A very long day.

3. Has Joseph caught up yet? - To whom? Is it a race? Are the other people standing still? I have no idea, so please don't ask me. You could ask "how is Joseph doing?" that, I can answer.

4. I'm going to have my ears lowered - Yes, my dear husband I am talking about you. No you are not having your ears lowered, they are stuck fast on to your head. You are having your haircut.

5, Is it not? Can you not? Will you not? Have you not? - and endless variations on this theme. Now I know there is a lot of internet debate about the use of these little creatures. "What creatures?" I hear you ask.

These ones. ''''''''' These little creatures, the often spotted apostrophe. Now whilst sometimes these creatures crawl about in unexpected places "potatoe's on offer" for example, there are times when they are necessary. "Isn't it? Can't you? Won't you? Haven't you" are all appropriate uses of the apostrophe.I cannot bear it. And for the toddler it is very confusing. A lady who works at pre school says every snack time "do you not want....." if the toddler at all pauses before taking a piece of banana etc. So now Joseph said "I don't want" instead of "I do want". Confused? I am, and lets face it motherhood has addled what little was left of my poor brain.

Ah that feels ever so much better. Thank you Kate

Cancer.....is really expensive - #dosomethingyummy

2012-02-10T08:09:00.001Z

You will, I hope, have seen my posts about Yummy Mummy Week hosted on Nickie's blog Typecast .

I want you, my reader, to know and understand why this is just so important, why we need to support CLIC Sargent.

When Joseph was born, we were sent into a new world, of beeping machines, lines and ivs, expressing milk, of living half our lives in a hospital. It was crippling emotionally and physically and financially. We were lucky of course there is maternity pay so although my wages ended 3 months early, we still had money coming in. But our expenses were huge. However, we knew it was for a finite period of time.

Money is a tough subject, and when it comes to illness it seems almost crass to talk about it. But we do need to talk about it. Hospitals are expensive, the parking, the meals, buying special clothing and creams. I saw it with my own mum. Some things are just very very dear.

Then things like nursery fees if you have other children and can't be there all the time, the consideration of one or both parents having to stop work or reduce hours. Often additional equipment, or simply being home more often has a massive impact on utility bills. Bills require payment, they don't wait.

The practical support CLICsargent provide is essential to these families. As much as we like to think "it's only money" bills need paying.

Please support Yummy Mummy Week and help families like the one in the video, because when cancer strikes your child, money should be the last thing on your mind.

My Favourite Kitchen Gadget - My Slow Cooker

2012-02-09T08:05:00.000Z

No you are not at the wrong blog! I don't normally blog about cooking, however, I'm posting this today because this week on my Facebook page I was asking people what they did for meals whilst their baby was in NICU. It came as no surprise to me that people resorted to take aways or sandwiches. It's a difficult time, and whilst some of us are lucky to have family close by who can cook for us, lots of us manage the journey with little or no support. I found I used my slow cooker often, I could quickly chuck in something in the morning, and when we got home, voila, a nice home cooked meal. So yesterday I conducted an experiment with my slow cooker. £5 worth of ingredients, 10 minutes preparation time, and a lovely wholesome meal at the end of it.

This is my slow cooker, if you look carefully you'll see its called a "curry cooker". I think the funny branding and the colour put people off and it was a bargain price! I've had it a long time and I love it. You can see it has three settings, low, high and keep warm. I use low for most functions.

Here is my beef, which I bought at Lidl, there's a kilo here in total which is ample for 4-6 adults, you can freeze what you don't eat.

Here we have carrots, celery, some leftover celeriac, a beef stock cube, some garlic, 2 onions and a tin of chickpeas. You can vary the veggies, the meant, the stock, add herbs, spices, a tin of tomatoes etc. I also added half a cup of water.

Everything thrown in ready to go. I'll do a little list of tips at the end!

Here it is, beef and vegetable stew with chickpeas.

My slow cooker top tips:

Whilst you can brown the meat first, there is no need. Browning doesn't "seal in" the juices, all it does is give a browning effect. I find it does give a slightly richer finish, but that can be compensated for with herbs and stock. I find if you brown the meat then you add unnecessary oil, waste another pan, and take more time.
Use less liquid that you think. Some people worry that slow cookers will dry out their food, but actually the opposite can happen. Because you are cooking at a low ambient temperature, you won't get the same reduction in liquid than you would in a conventional oven or stove top. You can always add more, but you can't take away!
If using prepared beans or chickpeas, add them in the last half hour and turn up the cooker to high. You can also add frozen peas, corn or other veggies this way. If you put them in too early they will turn to mush.
If things are looking too wet, remove the lid for the last half hour to an hour. You will find if your adding chickpeas etc they will absorb some liquid.
Pre-prepared curry pastes and sauces will add to your repertoire with little effort.
Slow cooker meals are ideal for children and babies. If cooking for small people, use a low salt stock cube or omit entirely.
You can of course use beer or wine in the slow cooker.
If your sauce is too runny and leaving the lid off hasn't done the trick, remove a cup of liquid, thicken with a teaspoon of cornflour dissolved in water, and boil on hob, then add back into the slow cooker.
I've found that the slow cooker is so useful, especially when Joseph was home and tiny, I could throw something together during his nap, and then I had the rest of the day to do other things!

I hope this has been of use. I first used a slow cooker when I lived at home, and I've always had one.

What are your favourite slow cooker meals?

Amby Nature's Nest

2012-02-08T07:59:00.002Z

Following my post about My Favourite Baby Items, was a lovely discussion on my Facebook page about what items we wish we had had. I've invited my friend Carly to talk about her experience with the Amby Nature's Nest. Quite a few of us mentioned if we'd known about this, we would have bought one!

Thanks to Lisa for the photograph

I'm Carly, mum to Liam and Georgia, one with medulloepithelioma & leukodystrophy, the other with suspected Russell-Silver.

In a previous life I was a special-ed teacher. I live with a dog, Jonty, in the city of Cambridge, and I get my kicks helping medics research rare diseases.

I feel I owe a small thank you to the Nature Nest. When my daughter was referred to hospice care after a diagnosis of “general global malaise” and organic FTT*, one of the first things we were introduced to was the Amby Nest: a small off-white sling hanging from a slightly odd looking metal base.

So loved was it among the nurses, that a tea break was sacrificed to help us set our baby girl up in it, and (as any self-respecting nurse will tell you) that is not a sacrifice to be taken lightly.Given the off-white nature and the, ahem, circumstances (what was racing through my mind was just how the thing got to be so un-white), I was yet to be convinced of its magic. It didn’t take long before both the magic and the convincing took place.

After gushing to the nurses that my tiny, innocent looking daughter was actually the loudest, most scream-y child around for 50 miles, the nurses were just about to tell me not to be so silly when the tiny darling seized the moment. She woke up, and began to wail to high heaven (for reference, her cry had always sounded much like an unhappy cat). Me: 15, Nurses: Love. Child is in fact devil incarnate (as cited) and I am proved not to be neurotic. However, the nurses were just as keen as the tiny pink ball of screaming, and proceeded to place her in the Nest. The wailing stopped. Birds flew again. Waterfalls continued to flow. 15-all, the nurses had levelled.

It was then that I started to understand just why the Nest was so important and just how useful it would be to us. The importance and usefulness of it was confirmed to me on that first stay, and continued to prove itself during our stay, and then again, later, when we took our baby home for her last few days. The Nest held her in a way that comforted her; a position we had only been able to replicate in slings which had to be wrapped around us and were very impractical for both us and her nurses. With the Nest, she could have the comfort of weightlessness and feotus-ness (note: I’m coining that word), the nurses could have easy access to care for her and I could see her easily to make sure she was safe and happy. She slept in her Nest, in a literal hug, as she would have done in the womb.

I am one happy Nest-convert. Were I ever lucky enough to have another baby, I’m sure an Amby would be on my shopping list.

Although, I never did find out just why it was so off-white.

*FTT = failure to thrive

Postscript The Amby Nature's nest meets all European safety requirements. However, the Amby was recalled from the US in 2009. Reference here: http://www.amby.co.uk/site/pages.php?fid=0,18

The Empty Desk #dosomethingyummy - Writing Prompt Week 2

2012-02-07T07:44:00.002Z

I was stunned at the response to my first article in this series. Thank you to all who read and commented. This week Nickie at Typecast has three new prompts. I have adapted one of them. This is very loosely based on an experience I had at school, names and the situation have been altered somewhat. What happens to a family when a child is diagnosed with cancer? How do siblings and parents cope? I have altered this to what happens to their classmates.

If you blog, why not join in, if you don't blog please share the posts around your networks. Do Something Yummy runs from the 10th -18th of March, click to learn more, and think of something you can do to help. Every little you can raise will make a big difference.

Sunbeams dance on the dust particles in the classroom. We all look clean and fresh, new shoes, new uniforms, ready to start another school year. The classroom that has been shut for the summer holidays smells musty. Grade 3, half of us are still only seven, the other half eight years old already. It seems weird how much everyone has grown over the summer the boys seem so much bigger than me.

As we sit down at our named desks, one is empty. There is a gap where Anna should be. Everyone looks, and goes quiet. Children start to natter, where could she be? Maybe she’s gone home, someone whispers, she’s not from Australia, somewhere else....Holland, South Africa, Zimbabwe, no one seems to remember. Rumours start to circulate; maybe her dad has taken her, has anyone seen her sister?

Our teacher walks in, and very quietly sits at her desk. I have met her before, a kind, gentle teacher. She looks at us all, commanding us to be quiet but without saying a word. Finally she speaks “Good morning children”. We all chant back “Good morning Mrs B”. She reads through the roll call. She doesn’t call Anna's name. Yet her desk has been set up, pens, paper everything where it should be. We all look at one another.

We can see the teacher seems uncomfortable. She coughs. She gazes out the window at the playground, a eucalyptus tree waving in the breeze, if you concentrate, you can smell its scent through the open window. We are all silent.

Very slowly and quietly Mrs B speaks. “Children, over summer Anna has not been well. It isn’t easy to explain this to you, but she has leukaemia. Anna is having a treatment called chemotherapy and will be in hospital for a long time”. We are shocked. A boy puts up his hand “will she die?” Mrs B chokes back a tear and says “We don’t know. She might die, this is true, she is in the best place and having treatment we all have to be strong, be positive and support her anyway we can”.

Mrs B gets out lots of paper, and coloured pens, and glitter. We make cards. Butterflies and smiling faces, a few days later we read Sadako and the Thousand Paper Cranes. The girls all get together and start folding beautiful cranes out of pretty paper that one of the Japanese parents has brought in.

School life goes on. Towards the end of the year, Anna comes back. She looks different. Cancer treatment has taken its toll. She wears hats, beautiful, colourful hats. Sometimes baseball caps. The boys steal them and hide them, making her cry. We are all angry with them. We have endless talks from teachers on bullying and caring for one another. Anna is wrapped up in her friends love. We protect her from the bullies. We report them. They are punished. No one can touch Anna, we love her.

Anna tells us about her treatment, months in isolation. That a lot of the time she is not allowed many toys, or craft items. She is bored. This is long before sophisticated computer games, even video is still somewhat of a novelty. She describes endless days of treatment and doctors. She tells us that of her treatment group, all her friends have died. Anna is the only one left. We are sad, but we are grateful, she is here, she is alive.

We learn, so young, the fragility of human life. The way childhood can be snatched in an instant but a disease so unpredictable, so vile, that we are scared to speak its name. Our own health feels fragile at times, could it be us? Could we get so dreadfully ill?

Slowly but surely as years pass; we don’t talk about it anymore. It’s over, for Anna. Every year though, her mum throws a party, a remission party, the family marked for ever. By cancer.

It’s over thirty years now, Anna is in remission, with children of her own.

Anna -1 Cancer - 0

Call the Midwife - Too Close for Comfort - spoiler alert!

2012-02-06T08:21:00.000Z

Call the Midwife is a BBC dramatisation of the memoirs of Jennifer Worth, a midwife working in the East End of London in the 1950's. I have been enjoying the series the stories are interesting, and the characterisations very strong. I haven't read Jennifer Worth's memoirs but they are on my to read list.

Last night's episode had two main stories, and it made for sobering viewing. A well-off, fit young woman went to the local clinic, with a headache, and feeling strange. She was made to feel uncomfortable by the other women there, from a different social station to her own, and didn't stay.

A week later she was due to go to her normal consultant's appointment, and her husband was driving her. She had a massive eclamptic fit in the car, and was rushed to hospital. She was 27 weeks pregnant. The baby died, just too small and the lungs too immature. The mother went into complete organ failure and subsequently died.

And yes, I know its a "story" made dramatic for television, but it is based on fact, and for me, was very sobering.

We have come along way in the 60 or so years since then. We have monitoring for every pregnant woman, here in the UK with blood pressure and urine checks standard at every appointment. We have amazing research being conducted all over the UK (and the world) in specialist centres. If the worst does happen we have awesome neonatal care, and acute ante natal care.

Women like me, 60 years ago, didn't stand a chance. The woman may have been saved through timely delivery, but would not take home her baby.

Now we know what treatments can help keep full blown eclampsia at bay. We can care for tiny babies.

However, babies and mothers still are at severe risk of pre eclampsia and it is so important that we are not complacent.

ASK about pre eclampsia - Attend all appointments, support the research, know the symptoms.

My Favourite Baby Purchases

2012-02-05T09:00:00.001Z

Due to my history of miscarriage, I was very wary about buying baby goods, not for superstitious reasons, but because I was scared that I would have loads of stuff to deal with if things went wrong. However at 20 weeks I bought a posh changing bag and a few newborn clothes. The week before Joseph was born we were given some John Lewis vouchers and we bought a few toys and a bouncy chair, but that was it. I am glad, looking back, that we didn't go out and buy loads as what we did buy was different, I think, than if we had had a termie. Here are my favourite things we bought!

This was Joseph's Pure crib purchased from Mothercare. We didn't feel comfortable with a moses basket, as we though the cat might use it, and I wanted him in something that was firmer and more like the cot he was used to in hospital. It made me laugh when I went to buy it, the salesman tried to convince me he'd only be in it six weeks. I smiled and said "no I think it will last longer than you think". He was in it until he was one!

This is Joseph's bouncy chair. I found it so useful and am really glad I bought the one I did. My criteria was bright and non gender specific, and quite simple. It did have a toy bar, but nothing flashy or loud. We used it loads in Joseph's first year, he couldn't sit unsupported until 12 months, so it was great to have, and I'm glad I got that one. It's a Cosatto and I adore their products!

I started looking at slings when I was pregnant, and found a great slingshop in Hebden Bridge (which I think now has gone) and had a very creepy conversation about the benefits of babywearing and premature babies! I really wanted a carrier style, but she convinced me that wrap slings are much better, and I am a complete convert. Joseph was always so snuggled and looked so safe in his sling. This particular one is a Kari-Me.

Three for the price of one in this photo! We bought the car seat at the 11th hour, just before Joseph came home. I was pretty sure I wanted this one, as I knew it was compatible with a number of different pram systems. In a perfect world, I would have used a proper pram or carry cot, but for my husband, with his disability, this was the ideal solution for us. Also in the picture is the Quinny Zapp. As I baby wore it didn't worry me using the car seat on the pram base as he was never it for that long, and we found it very convenient. The third item is the Bumbo seat. I kind of thing that babies shouldn't be encouraged to sit until they are ready, however for premmies who are weaning on actual age, it is much easier if they are sitting up straight and less of a choking risk. I used to plump up the Bumbo with muslins.

The last picture is our high chair, another appearance by Cosatto . I got the highchair once Joseph was 7 months, kindly purchased by the in laws. I had quite a criteria. Adjustable height, 5 point harness, washable cover, and reclinable. I also didn't want to spend an absolute fortune on it. This one fit the bill and was fabulous. The only downside was the size of the base but the new Cosatto 3 sixti is much smaller, so they have certainly listened to feedback from parents.

What baby items could you not live without?

* Totally non sponsored post!

Sometimes Grief - Adapting After Preterm Birth

2012-02-04T08:13:00.001Z

I read this really interesting article yesterday posted on Facebook. It's title is New Moms May Grieve Preterm Birth, but Adapting Quickly is the Key. It's based on research conducted at the University of Michigan, which followed 74 babies born before 36 weeks gestation.

The main finding of this research is that mothers who have resolved their grief are three times more likely to have securely attached infants. The article does not go on to explain how they measured attachment, which I am curious about, or how they measured if grief was resolved.

I found it interesting that when sharing this on Facebook, one of my fellow premature mum friends commented that she was concerned this would put more pressures on mothers to overcome their experiences and "get over it", for fear of damaging the way in which their child is attached to them. I didn't see it that way, but I see her point now.

So where does that leave us? What the article suggests is that paediatricians work with mothers on resolving their grief, and this has to be taken in context of the US system which is so very different to the UK system. In the UK it is rare that you have a close relationship with a paediatrician, unless you child is quite ill, and many premature babies are not. So that recommendation, I would argue, is not going to work in the UK, unless babies are more closely followed up by paediatricians, which I don't think is practical, given the cost of such a measure.

I found it fascinating that there is no correlation between gestation or the wellness of the mother or infant and grief over premature birth, which confirms what I have said for a long time. What we have in common whether our baby was born at 24 or 34 weeks, is the unknown. No one can tell us how things will be. In our case our consultant wasn't very experienced with 27 weekers and put the fear of God into me that Joseph would never eat, would be in an out of hospital with Chronic Lung Disease and be a generally sicky and difficult baby with long term problems. For me, that was a huge source of grief feelings for me, that I'd failed to keep Joseph safe and he was facing an uncertain future.

I remember feeling awful in NICU when comforting mums, I would go over and give a new mum a hug when they came into the unit. Often they would ask about gestation and weight, and then feel shocked and guilty that they felt so sad about their own situation when our own was so much "worse". I never saw it that way. No one wants their baby in NICU, not for 3 months, not for 3 hours. I saw it that our grief was the same. Our unit took mainly later gestation babies.

What I think we need to do, as compassionate parents as well as health professionals, is look at how we help mothers (and fathers) with grief. So much of aftercare is left to chance. The baby is well, is discharged, the mother and father are left to carry on. I felt completely on my own with Joseph, and very scared of what the future held. I felt robbed of normal experiences, and quite bitter as to what had happened to us. I also found that my Health Visitor had no interest in us. She said she had no experience of premature babies and she left us to our own devices. I really struggled. I was lucky to have a good GP and a fabulous Surestart centre but it was up to me to fill that gap in service provision. Not every mummy (or daddy) can do that.

I went through all the classic stages of grief as described by Elisabeth Kubler Ross.
Denial - Yes I've had an early baby, but it could have been worse we're fine now. There's nothing to be sad about.
Anger - I had this in bucketloads. I was angry that no one believed me I was ill, angry that my baby could have died. Angry with the whole situation. I was angry at my husband for going back to work, and being so sanctimonious about it all. For a long time I thought he should have taken sick leave and supported us emotionally.
Bargaining - This one was complex for me, but for a while I just wanted to have another baby, to make up for this pregnancy that I stuffed up, that if I could just have a term baby I could feel better about this one.
Depression - Whilst I didn't have classical depression, I was very sad. I felt so sad for the suffering I put Joseph through, for the things we had lost. I felt deep guilt that this was all my fault. And, in my case, this was coupled with Post Traumatic Stress Disorder so spent a lot of time being stressed and anxious too.
Acceptance- For me, this took about a year. I moved through those stages,not chronologically, and not necessarilly neatly, bouncing around the stages, at different times. Once Joseph turned one corrected I started to feel much better, and every time he met another milestone, I started feeling better.

I don't know, whether in terms of the research, this would be considered quick or not as its not covered in the report. I certainly feel Joseph has a strong and healthy attachment to me for the most part. I did have a lot of help from my Surestart Support Worker in the early days, and she worked hard with me to make sure I saw the reality of Joseph and to live in the moment.

I am wondering what we can do to help mothers, and fathers, with their grief. How we can help them get to the point of acceptance. Would more support, closer communities, talking through things with peers and or professionals help with moving through those stages? I think its very important we talk in terms of acceptance, as it is unreasonable for us to ever expect any one of us will "get over it".

I know in my case I was desperate for peer support, and several ladies on Bliss in particular really helped me, but I didn't have anyone I could have a cuppa and a cry with, who truly understood. It's one of the reasons I still blog, in the hope that I can be found, and I can be that virtual shoulder to cry on. I don't do this for money or recognition. The emails and comments and social media messages saying "thank you, I feel so much better for knowing my feelings are normal" is what I do it for.

If you have had a premature baby do you felt you went through grief? Did it resolve for you? What helped you? Would anything additional have helped?

Promoting Products and Resources for Premature Babies and their Families

2012-02-03T09:00:00.000Z

Hello readers, you will notice that there have been some big changes on Not Even A Bag of Sugar. I've been prompted to look at my blog with fresh eyes. I started to notice that the blogs I favour in terms of reading and going back to have larger blocks of text, less clutter, and have black writing on a white-ish background. Hence, the big change. My sister installed the previous look to the blog and I really loved it, but feel now that I've outgrown it, so thank you Penni for all your help!

I'm planning quite a few more changes, there are two in particular I'd like your help with.

Firstly, I'd like to create a list of tried and trusted suppliers of things that you have bought for your premature or sick baby. It doesn't need to be clothing, or even premature specific. I'd especially like to showcase the small businesses, the Facebook pages, the unsung heroes, as well as the larger companies.

My rationale for this is people often ask me "what can I buy?" "where can I buy it from?" and it will be nice to have resource for people to utilise for either their own baby, or for buying gifts.

Listing will be free of charge, and will sit in a seperate page on the blog. If you have a business that would like to be featured what I would like is the following:

One picture, can be any size I can resize as required.
A short (100 words or less) piece about your business and what you provide
Your weblink or Facebook page details

From time to time I will do a feature post about a business on the page.

The second thing I would like to do is compose a page of resources. A lot of information can be found on websites like Bliss and Tommy's and I certainly include those, but I have become aware there are loads of smaller charities doing some amazing work, and they deserve to be talked about and promoted.

If you are, or know of, a charity that would like to be featured, please let me know, and I am looking for similar information, a picture, a short blurb, and a weblink or contact details.

Please feel free to share this post as much as you like. I want to make it as comprehensive as possible. At the moment most content will be UK based, however I am open to looking at businesses that operate elsewhere.

My email address is notevenabagofsugar (at) gmail.com

Hologic ‘Miracle Unit’ Award - Let's Get Baby Friendly

2012-02-02T08:00:00.000Z

As any regular reader of mine will be aware, I am passionate about Tommy’s and the work that they do. You might be aware of the Tommy’sLet’s Get Baby Friendly Awards held each year. Voting is quick and easy, and you can do so here.

As well as the regular awards, there are 5 additional awards. The one I’d love to talk to you about today is the Hologic ‘Miracle Unit’ Award.

When I was pregnant, I had a lot of appointments at our hospital. Our neonatal unit was off a main corridor and every time I walked past, I would say a little prayer for the babies and the parents, as well as the staff. Sometimes I would see a transport incubator go in the doors, or come out empty towards theatre, and I’d feel a rush of compassion for those families going through the fear of premature birth, or complications. I never thought for a minute that one day, I’d be on the other side of those doors.

When you have a tiny baby or a poorly one, you place your baby in the hands of these people. The work that they do, their passion and dedication is amazing. With the birth rate increasing, these units are under more pressure than ever before. Premature birth rates are increasing too, and our expectations are high. This area of medicine is truly inspiring, and the work that they do deserves recognition. I believe every unit is a miracle unit.

Tommy’s wants to recognise these units, and invites you to nominate a unit close to your heart for this award.

The prize is amazing, a box of Hologic Rapid fFN® tests, and one year’s use an fFN® test analyser. I know many of my readers have benefitted from this test which can predict the likelihood of a mother entering into pre-term labour.

To nominate a Miracle Unit, send your reasons why to awards@tommys.org before 20^th February 2012.

Congratulations - It's a Baby

2012-02-01T11:13:00.003Z

When Joseph was first born, I felt so strange. I really felt very sorry for anyone who came to see me, because my head was just all over the place. I didn't know what to feel.

The day Joseph was born was so strange, he was born at 10am, I didn't see him, and then he was just taken away. I went back to the delivery suite where I'd been the night before, and was put back on monitoring. I had someone with me at all times. But not my baby.

I think, looking back, I was surprisingly calm. I remember being a bit sad at one point, and tears slipping down my cheeks and one of the doctors comforting me, but I just lay in bed, with my husband popping in and out as he went to see his son. A son.

One of my regular doctors came on shift at 9pm. She gathered me in a hug and said "congratulations". I think it was the first time it had been said. I just blinked. I didn't feel congratulations were at all in order. I'd failed. I had failed in my primary duty of care, to keep my baby safe inside for 9 months. Congratulations? I didn't even know if I'd take my baby home at that point, it seemed a bit, well odd.

But in days to come, I longed for people to congratulate me. And it started happening, slowly but surely, as people got more confident, and Joseph got bigger.

I did a quick straw poll on Facebook last night. I asked: "A question for mums of premature or poorly babies. When you had your baby did you want people to say "congratulations"? " I gave the option of "yes" "no" and "not immediately, but after a few days/weeks, yes".

Of those who responded the vast majority said "yes", only 2 said a direct no, and only 1 said "later".

So, I think its safe to assume, that with a new baby, regardless of gestation, it is best to say "congratulations". I'd be interested to hear other people's thoughts on this.

With You Not By Me - A Post for #dosomethingyummy

2012-01-31T10:08:00.000Z

Yummy Mummy Week is a fundraising campaign run by CLIC Sargent, the children's cancer charity. It takes place from the 10th - 18th March. The lovely Nickie at I am Typecast is hosting a series of writing prompts, and I am very pleased to be joining in. Last year I attended my first ever blogging conference, Cybermummy, and Nickie read this post , intensely personal, it was the absolute highlight of the day, and fair to say, not a dry eye in the house. I have chosen the prompt imagine your child can't be home with you. This is based on Joseph's time in NICU

Hastily grabbing a pot of freshly expressed milk, I start my short trip down the stairs to the neo natal unit. I am stopped by one of the grandmothers, here supporting her newly delivered daughter.

"Good morning, how's little Joseph getting on today?", she asked kindly. "Well thanks, not much change, I am going home today". Her face changed, she looked at me, shocked. "What? You can't go home, you have to stay here, with your baby, or take him home with you. You can't possibly leave him here all on his own." Tears welling in my eyes, I hastily explained that there are no facilities for parents to stay and this is what is expected. "Well that is just cruel, you should not be leaving your baby here, with strangers".

I carry on and walk into the unit, gazing at my baby lying in his little box, oblivious to my presence. I drop my milk in the fridge, and proceed back to my room, packing away the pyjamas, clothes, and cards that I have amassed in my week long stay. My husband arrives and takes me home.

The next day, I get up early, express again, put the milk in my cool bag, and pop into town on the way to the hospital. I need a changing bag. I go to our local bag shop and look at the bags. The owner, not known for his stunning interpersonal skills, approaches.

"Oh you don't want one of them, that's a changing bag, you know, for a baby". I smile "yes I need a changing bag now, I've had a baby". He looks at me wide eyed, incredulous. "What? You? When?", through gritted teeth I reply "last Friday, he's just over a week old". I divert my attention to the bags, checking every detail, looking at the stitching, the little dogs on the front, the price, thinking to myself "just go away, go away go away", he says it, I know it's coming "so why isn't he here then, where is he?" I explain. He tells me I am a bad mother. I should be with him. Every minute. I buy a bag (I really shouldn't have done) and I leave.

I go to the unit, I sit by my son's incubator and I try, very hard, to swallow the tears that are welling in my eyes. I quietly open the porthole door and stroke his foot. I talk to him, I sing to him, and then I leave. Without my baby. Alone.

Every day I make the journey to the hospital. Usually alone, splitting the visits with my husband so that Joseph has me there in the morning, and Corey there at night. Every day I smile, I put on a brave face. "How's Joseph today?" people ask me, "oh just fine", I say. Yes I know what people are thinking. "If he's fine why is he in hospital?". It is so hard to explain, the need to grow, to be protected, for medication, for tube feeding. It sounds so dramatic, so acute, but it isn't. It's normal. Our new normal.

For 76 days, my baby is not with me. I go home alone. My husband and I tiptoe around each other. We are tired, we are drained, we are parents, yet we are not parents. We go out for meals, we go out for Sunday lunch, trying to have some normality and some company. We are driving each other insane.

We see people out with their babies. One day, whilst out shopping for our baby sling and toys, we sit and have a meal, there's a mum and dad cooing over a baby. We smile, as my milk leaks into my breast pads. "How old is he", my husband asks "Oh he's six weeks, born on the 8th May", they grin, proudly. "Oh same day as our son", my husband says. You can see these parents gazing at us, looking around. There is no baby.

Quickly I explain "He's in hospital, he was born at 27 weeks", then realising we now look even more daft, sitting eating Sunday lunch, talking about our baby, who is not here, when we should be there with him. They look uncomfortable, they finish their meal and they hot tail it out of there.

Walking around with a hole in your heart, a great gaping gap in your family, it's hard. "What to Expect When Your Expecting" doesn't talk about this. There is no chapter "How to Behave When Your Baby is Not By Your Side", and maybe there should be.

There are whole communities of parents who know how it feels, to have a baby but not a baby. And there are communities of parents facing much, much worse. And we think of them, and we support them, and we raise money so that we can do something to help these special parents, and these special kids. It is all we can do.

Why Choose the Pixie Harness?

2012-01-30T07:50:00.001Z

Last week I introduced you to the Pixie Harness, this week wanted to tell you a bit more about it and how it works.

So what’s the issue with a standard seatbelt? A standard seatbelt is designed with the safety of the driver or passenger in mind, but not necessarily the unborn baby. As I see it there are two pressing issues. The first is that there is a specific way of wearing a seat belt in pregnancy. Professor Serpil Acar found that 87% of women wore their seatbelts incorrectly in pregnancy.

Also an issue, and one that Steve, the creator of the Pixie Harness picked up on, is the area of non-compliance of pregnant women in wearing seatbelts. Pregnancy is not a comfortable time, and many women have issues such as symphysis pubic dysfunction, and thus experience pelvic pain, and it can be tempting to not wear a seatbelt, especially on short journeys. However, not only is it illegal, this practice is dangerous. A little bump in a carpark that we may not think twice about, can have a devastating impact on the developing baby inside.

Why the Pixie? There have been a few attempts to make seatbelts more comfortable in pregnancy, however the Pixie is quite unlike anything that has been seen before. In addition, it meets all safety regulations for both the UK and Europe, unlike the other “solutions” out there. Having worked extensively in the disability field, I have first-hand experience that 4 point restraints are the safest method of keeping a person secure in a moving vehicle, whether it be a car or a wheelchair, and this is just how the Pixie is designed. To me, it makes perfect sense, once your baby is born, it will spend the first couple of years of its life being secured in such a way, whether in a car or a pushchair.

How does it work? Does it need to be professionally fitted? The Pixie is so convenient. The harness is fully adjustable to your shape, and is fitted on to the standard seatbelt, so no mucking about with taking your car into a garage. It’s much easier to use than say a standard group 1 car seat! It can then easily travel with you (and to that end comes in its own mesh bag) so that you can take it with you if you are travelling with friends, or in a taxi.

The way the Pixie protects the unborn baby is that in an impact, the force is spread throughout the upper body, and completely away from the developing baby and placenta. The vertical of the seatbelt goes through the back of the Pixie in a metal clasp, so it is this that prevents you from going too far forward.

You can see more about how to fit the Pixie here.

Why I love the Pixie Harness: Steve is a problem solver. He saw the potential and very real problems of seatbelts in pregnancy and he sought a technological solution to solve it. Steve investigated this thoroughly, and has ensured the device complies with all the European and UK regulations in this area. He has literally thought of everything, down to the carry bag so that you can easily gather it up and move it from one place to another.

When I went to see the device I was so impressed with its design, its comfort and its ease of use. It really is an amazing piece of technology and I think, as women and as mothers, we are fortunate to have people like Steve thinking of us and finding solutions.

I’m also proud that this device was conceived in Bury, further proof that Manchester is leading the way in innovation and safety.

If you have any questions, please post them here, on Twitter or the Facebook page.

A String of Pearls - I'm on the Team!

2012-01-29T23:31:00.001Z

I am very excited to announce that I have been asked to be on the team of A String of Pearls, an ezine by women for women.

I met Jane through Twitter, and was flattered when she asked me to write about the riots last summer.I was overwhelmed at the response and really enjoyed the departure from writing about our journey, although it will always remain at the heart of what I write.

I look forward to writing different articles and pieces than I do here, and meeting some new people. I'd love you to follow my journey there and you can subscribe here.

A String of Pearls is a delightful read, full of diverse and interesting articles written by women from all walks of life, from all over the world. I love the photography, and we are keen to showcase this, so if you are a keen photographer, even only on your camera phone, do get in touch.

Nice to See You - But What on Earth Are You Doing Here?

2012-01-29T10:03:00.000Z

I read this post from the beautiful Cafe Bebe this week and it really made me smile. At her babies 8 week check her GP offered his congratulations, that she is pregnant again. I reassure you dear reader that she most certainly is not!

When Joseph was 6 weeks old I was asked to go in to my GP for the standard antenatal check, but also the consultant who had overall management of my pregnancy also wanted to see me. The GP appointment went without a hitch, they just took my blood pressure and offered their congratulations, and were most understanding that going for my post natal check without my baby wasn't the easiest thing. They even made sure they saw me on a non-clinic day, so that I wasn't surrounded by cooing mums and bouncy babies.

The following week I went for my consultant check. Now there isn't anywhere for a recently delivered premmie mum to wait but in antenatal. So my husband and I sat down and waited.

Firstly, Dr C, the big Ghanaian doctor who helped deliver Joseph, came into the waiting area, saw me and ran over and scooped me up for a big hug! He was so lovely "oh I am so glad to see you, how is Joseph, and please, please tell me your not pregnant!" I grinned at him and said "no, no just a check up!", with obvious relief he wandered off.

Then Dr B came in, for some reason, although he never treated me in pregnancy, he and I had become quite friendly and he always popped in to say hello. He walked over, scooped me up for a big hug, asked how Joseph was and said "if your pregnant again I'm changing specialty to geriatrics!" I smirked and explained again.

Finally Dr A came in. Now I credit Dr A with really setting my care on the right path. When I was seen at 24 weeks, she put me on a daily monitoring plan, and spotted that the medication that was recommended by the senior consultant was not suitable for me, as I am asthmatic. She also reassured me that I was welcome to come to delivery at any time to be checked over, and that I wasn't paranoid, but at risk of pre eclampsia. She was in charge of my care the night after delivery, and was so kind. She had tears in her eyes as she said "I am so sorry this has happened, but so grateful that we had you on a good care plan".

She walked into the waiting area, and gazed at me with suspicion, she looked utterly terrified, and didn't smile. "Kylie, why are you here", I cruelly patted my tummy and looked at Corey. The colour drained from her face, I grinned and explained. The sigh of relief could be heard all around the waiting room, and all the other still pregnant women laughed! By that point I'd become a minor celebrity as the medical team all knew me!

But, in all seriousness, I do know women who have had premature babies who have been "caught" whilst their babies are still in NICU or shortly after discharge. I don't think expressing breastmilk gives the same protection against preventing pregnancy as standard breastfeeding (my periods returned bang on schedule 4 weeks after delivery), and often we either don't get the "contraception after childbirth" talk, or are so shell-shocked about what has happened, it is inconceivable that you will ever have sex again!

So if you are going through NICU, or recently delivered, or in fact pregnant, have a think about what contraception you will use.

The Pink C

2012-01-28T08:57:00.002Z


My mother in 2010 before diagnosis

“I’ve been recalled following my routine mammogram” she said. “Fuck”. I thought. “Right”, I said.

And so she went, on the other side of the world, for tests. “I’m sorry” he said. “We’ll operate”.

So it was removed. The lump.

“I’m sorry”, he said. “It’s worse than we thought”.

She went to the oncologist. She had the chemotherapy, followed by radiotherapy. My mum.

She lost her hair. She got a wig. She kept positive. I was scared. My mum.

She asked her radiotherapy oncologist “How do I know if its gone?”

“When you die of old age” he said.

90 bloggers, 90 words about breast cancer for Kate on Thin Ice. Join and link up.

Our Busy Week and Joseph's Friday Funnies

2012-01-27T16:48:00.000Z

Since Christmas our weeks have just got busier and busier. So busy I didn't even blog yesterday - horrors! My to do list is getting bigger by the day, and my time seems to be getting shorter! I have worked almost every night since last Saturday and am working all weekend, which is great for the pennies, and I am enjoying it.

This week we finally made it to The Chocolate Cafe for the first time in ages. We used to go every week, in the heady days of maternity leave, when we had time, money and babies who stayed where you left them. We used to spend 2-3 hours, now I am lucky to be in there for 45 minutes, but we had a lovely brunch, just Joseph and I, following a trip to the shoe shop and toy shop.

We came home, and Joseph proclaimed, "I am not tired, I am going to watch television". Despite my suggestion that he might, in fact, be very tired, he was insistent. Here he is 10 minutes after this statement.

Joseph's words and sentences are coming on in leaps and bounds. Some new children have started pre school, and I introduced myself to one of the mums this week. Joseph popped out from behind my legs, extended his hand and said "well, I am very pleased to meet you". I have no idea where he gets this from!

On Thursday was our eight monthly trip to orthoptics (the eye people, not to be confused with orthotics, the feet people). I started preparing Joseph a few days ago for our trip to the "eye doctor", and that she gives out stickers. Before we left I said "what will the doctor give you?" "He grinned and said "the doctor gives out cuddles!" Bad mummy had forgotten to practice with the line drawings they gave me, but Joseph excelled himself, the highlight being when she showed a picture of a mug Joseph grinned "mummy's cup of tea!".

The lowlight of our week is teething. I am so sick of teething, it seems to be taking forever and he's finally getting a proper molar, but still has three more to get. So funny now he has words "Mummy , get the magic Calpol please". Mummy thinks its magic too!

To leave you with my favourite funny of the week, Niow Niow was washing her paws this week, and Joseph copied, licking his feet. He paused, looked at me and grinned "mmmmm delicious". Yuck!

Vitamins, Children and Twitter Doctors

2012-01-25T13:47:00.000Z

Last night I read an exchange on Twitter between television's Dr Christian Jessen and a mother, who was asking for advice about multivitamins and children. I follow Dr Jessen's feed, but I have no idea why! Must hark back to when I didn't have many followers and I collected "celebrities".

OH DEAR RT @Redlottie: @DoctorChristian what do u think about giving supplements to toddlers - Ive just started my 3yr old on a multivitamin

Now I got chatting to Redlottie and it was clear she was giving her child a children's multivitamin, how you would get a 3 year old to take one of those horse tablets is beyond me anyway, and Dr Jesson subsequently responded appropriately saying "kids vitamins are ok". He didn't explain why, or give any links, much less apologise. However before his clarification, some people on the twittosphere had given this mother a hard time "give the child vegetables", "get the child off the Wii and outside". Now I give my child vegetables every day. Whether he eats them or not is a different matter entirely. And is there enough sun light in the UK to supply a child's full requirement of Vitamin D? "Well generally it is thought not. Vitamin D is available only in small amounts in fish, eggs and dairy products.

The subject of vitamins is confusing. I now know that the official advice is to give vitamin drops or chews up until the age of 5, and here is a good fact sheet put together by the British Dietetic Association, that clarifies the issue nicely. When I went to get advice from the pharmacist, several months ago, about which ones were most suitable, she had no idea of the change. She'd had to look it up on her own NHS website for guidance. She was somewhat embarrassed that she had not been informed.

To me, the confusion lies in how professional people are informed of guidelines and changes therein. I know doctors and pharmacists (even ones who are not on telly) are incredibly busy people, but to me, this is a change in guideline that affects every child under the age of 5 and surely that's a big number of patients.

For parents of premature babies, giving vitamins is a way of life, particularly in the first year. It made me chuckle that Joseph had to have folic drops once a week, but only on a Friday. There's nothing magical about Friday, but it's an easy way to remember - "folic friday". Joseph also had to have Sytron, which is an iron supplement, Joulies Phosphate (which on discharge was harder to obtain than crack cocaine!) and Dailivit. I stopped the Dailivit once he was on nutriprem 2 as it has enough added vitamins, and he's now back on it again, in line with the guidelines. Once he is 3 I will give him the nice vitamin chewy sweets instead.

I think its so important than in this age of doctors on the television, and on Twitter, and on medical advice in ever newspaper and magazine, that we, as health consumers, are clued up enough to find the sources of correct information, and are critical of what we are told.

I felt yesterday was an important lesson, that just because a doctor says something, doesn't mean it is correct.

My Desert Island Discs

2012-01-24T10:00:00.001Z

One of the more bearable things my husband has introduced me to is Desert Island Discs on Radio 4 on a Sunday morning, which we listen to without fail every single week. I love it! I enjoy listening to the choices and the stories behind them, of famous people that we know, and people we don't. Some of our favourites have been scientists, authors and charity workers that we haven't been familiar with.

As I listened to Vikram Seth this morning, whilst doing the ironing, I wondered what my 8 desert island discs would be.

"Well Kirsty, my first disc will have to be "Stop Crying Your Heart Out", and I have chosen the version Noel Gallagher sang on an Australian television show, The Panel. Although I willingly moved to England in 2002 I found my first few months really tough, and this song gave me solace, and hope.

Going back to my childhood, my next disc is "Walking on the Moon" by the Police. As a child growing up in Tasmania, this was on the television and radio often and was the first pop song I ever really heard. It's still a great turne.

I have struggled choosing the obligatory classical piece that I am sure a lot of your guests choose so that they appear more intellectual and intelligent than perhaps they are. I have chosen Pachelbel's Canon in D, and don't care that it has become populist and pops up everywhere. I love the simplicity of the melody and the complexity comes from the way in which it is repeated and other instruments join in.

The next piece comes straight from my teenage years. When all my friends were listening to Madonna and the Pet Shop Boys, I was listening to Australian music. My all-time favourite bank is Hunters and Collectors. This song "What's a Few Men", is inspired by the awesome memoir "A Fortunate Life by A.B. Facey, one of my favourite books.

I was brought up on Australian country music, and its something that living here in the UK, I really miss. Whilst you may sometimes here Amercian country music on the radio, the Australian variety is often forgotten. There are so many songs I could include here, but I've chosen Anne Kirkpatrick's "Many Mothers", as I feel its a universal song, and more appropriate now than ever.

Now my sixth track is for my son Joseph. There are many songs that I relate to from Joseph's birth, and as my regular followers and fans know, Wires by Athlete is a very important song to me, and one that I couldn't really omit for this programme. It just happened to be on my iPod, when Joseph was in hospital. It became my prayer "looking at you now, you would never know", I hung on to that song with all my might, and one day - it became true. I will always be grateful for Joseph, and for this song for helping me get me through.

On the subject of prayer, I have chosen a hymn as my seventh song. Now although my regular church going days appear to be behind me, at least for now, church music is very important to me, and I still sing hymns quite often. Perhaps the hymn that I love the best is "Be Thou My Vision" that we chose for our wedding. (Unbeknownst to the current Mr Hodges, it was also sung at my first wedding!)

My final track is one that resonates with most Australians, and it is "Down Under" by Men at Work. Whilst I have lived in the UK for ten years this year, I am still very much an Aussie, and this song still makes me smile and feel proud, never mind that half of Men at Work are Scottish!

So thank you Kirsty for the opportunity to share my tracks with your listeners today. I know you are going to allow me the Bible and the Complete Works of Shakespeare and I am allowed to take one other. I have chosen to take The Vernacular Republic by Les Murray, one of Australia's best known contemporary poets, and want to have the whole thing memorised by the time I get rescued.

My luxury item is a struggle, but I've chosen to take my son's Mucky Coat Blanket. I won't need warmth on the island, but I will need comfort, and I am sure Mucky will do the job admirally.

If all my discs were to be washed away and I could save only one, it would be Stop Crying Your Heart Out, as that song reminds me to keep strong, and not be scared, most appropriate for being all alone on an island."

Do you listen to Desert Island Discs, who is your favourite person who has been on the show? What would your Desert Island Discs be?

Car Safety and Pregnancy - The Pixie Harness

2012-01-23T08:00:00.000Z

I don’t drive, and in my everyday life and am not in a car very often, maybe a couple of times a week. When I went to book in my pregnancy with the midwife she explained how important it was to continue to wear a seatbelt as normal throughout pregnancy. I didn’t really understand the correct way to wear a seatbelt.

At 24 weeks I was in Germany visit my mother in law, we were in the back seat of the car together going on an outing, she happens to be a midwife, and she looked at how I was wearing my seatbelt and explained it was all wrong. When we got home she showed me the RoSPA guidelines We then went back into the car to try and get the seatbelt to sit properly. We failed. I’m not sure whether it was because my bump was covered by a layer of fat, or what the issue was, but the lap belt just wouldn’t stay put across my pelvis and we couldn’t get the vertical belt to sit nicely between the breasts. In a car accident, my baby would have been in danger. I assumed as I got further along it would get easier, but of course, with my pregnancy ending at 27 weeks, it was no longer an issue and I thought no more about it!

One Sunday night a week or so ago I learnt about the Pixie Harness through Twitter, and went on the website to see what it was all about. I started turning from sceptic to a believer in this product and wanted to learn more. Imagine my surprise when I discovered that Steve, the inventor of this harness, has his premises literally up the road and around the corner from my house!

Image - Pixie Harness

As I spoke to Steve I was immediately struck by his passion for this device, and his diligence. He has been developing this for years, he showed me various prototypes and went into minute detail about how he developed the harness. This is a premium British product, and manufactured in the same way as racing harnesses. It is designed to take the impact away from the bump, thus protecting the baby and importantly the placenta.

No one knows how many babies are lost due to accidents each year, as the death of a foetus is not reported, much less investigated. But undoubtedly babies are at risk due to car accidents, and as Steve explained, it can often be a low impact accident that does the damage, a bump in a car park that we might not think twice about, for example.

I will blog further about this device in coming weeks, and just wanted to introduce you to it today. But before I go, I did want to talk a little about cost. It’s the first thing I noticed when I visited the website and wondered, really, if I wanted to blog about the device at all. Pregnancy and the babies first year is an expensive time and I did query whether this was too much to pay initially.

However, as I learnt more about what has gone into this device, and how it has been produced, I was reassured, and further, I started looking at it this way: we insure our cars, none of us like to think that we will have an accident but we diligently pay our insurance year upon year. We pay a lot of money for car seats for our babies, toddlers and children and don’t think twice about making sure they are appropriately restrained. Surely it makes sense to ensure our children are appropriately restrained from the moment we know about them.

Additionally, how many days long is pregnancy? About 280, so let’s say you start using this at 12 weeks, that’s around £1 a day, and if you have another pregnancy, you can bring that down to 50 pence a day. When you look at it that way, I don’t think it’s too much to spend, particularly, like many women, you are driving every day.

Later in the week I will blog more about how the device works, how it fits into the car (which is so easy even I can do it!) and answer any questions you may have, with the help of Steve.

If you have any questions, you can tweet them to me or to Steve, or leave them in the comments box below.

Pixie Pregnancy Harness
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Pre eclampsia - Myth busting

2012-01-22T12:05:00.002Z

I am not a doctor or researcher, and as always this is my opinion and based on my experience and reading. If you have specific concerns please talk to your midwife, GP or consultant.

Obesity causes pre eclampsia - undoubtedly obesity increases your risk of pre eclampsia. Researchers believe that the risk of pre eclampsia in obese first time mothers is around 12%, but in healthy weight mothers, the risk is 2%. Obesity puts you at a higher risk, but there is not a direct causative link. Research can be read here. Slim women can, and do, get pre eclampsia too.

Pre eclampsia is rare - 4 million women world wide are affected by pre eclampsia every year. It is said in the UK it affects 1 in 10 pregnancies. Of course it varies in onset from very early, like me, to term pregnancies. It also varies greatly in severity.

Pre eclampsia occurs only before the baby is born - Pre eclampsia, and full blown eclampsia can occur after birth, so it is important that monitoring continues in the immediate post natal period.

Pre eclampsia can be treated - Whilst there are things doctors can do to lessen the impact of pre eclampsia such us magnesium sulphate infusions, they are very much short-term in order to facilitate safe delivery of the baby. The only definitive treatment for pre eclampsia is delivery of the baby. However good antenatal care is absolutely vital.

Pre eclampsia is just a complication, its not serious - in the last reporting period of the Confidential Enquiry into Maternal and Child Health, 2002-2004 14 women died in the UK as a result of pre-eclampsia and eclampsia. It is essential to attend every appointment in pregnancy, and to ask for more if you feel you are at risk.

Pre eclampsia is just harmful for the mother - sadly, and getting figures for this is nearly impossible, pre eclampsia kills more babies than it kills mothers. Pre eclampsia prevents the placenta from working properly and nourishing the baby. Pre eclampsia is potentially life threatening for mother and baby.

Pre eclampsia only occurs in first pregnancies - it was often said that if you had a second baby shortly after your first, with the same father, you could not get pre eclampsia a second time. This has found to be totally false. In a subsequent pregnancy you should be getting much closer monitoring, and preventative treatment. The greatest risk for pre eclampsia is having it in a previous pregnancy.

I am passionate about preventing pre eclampsia, and importantly, the serious complications. It's a vile, evil condition that is indiscriminate and potentially devastating. It's the reason I support Tommy's, and you can read about their pre eclampsia research here.

The final thing I want to say, is that if you have been affected by pre eclampsia, it was not your fault. It just isn't. There is nothing that can be done if your pregnancy card is marked by this condition. I see and hear so many times "it's all my fault", and it just is not. It wasn't my fault and its not yours.

Lets work and support one another to prevent the devastating impact of pre eclampsia, through research, information and support.

Pretenders - Online Betrayal and Heartbreak

2012-01-21T14:03:00.001Z

I know a lot of my readers are mothers and fathers of premature babies. A lot of us seek and give support online. It makes sense. All though prematurity is not uncommon, it is uncommon enough that we are all spread out through the country. Some of us have children who are poorly and can't mix with other children, although some areas have fantastic, strong support groups, not all areas of the country, and indeed the world, have these sources of support.

My friend Mummy Beadzoid (Christina) wrote this lovely piece about a facebook group, that I am a member of, and love very much. This week something happened, so sad and shocking, and I won't go into explicit detail, only to say that a "member" who had been sharing the journey of her little girl, had made the group aware her baby had died. Only, as it transpired, this woman did not have a baby, and had used photographs that were on a blog, not dissimilar to my own.

Now when I started sharing photographs of Joseph on line, and on the blog, I was a little worried about privacy, future embarrassment, and paedophiles. The fact that someone might poach my photos and pose as the mother of a premature baby in order to get sympathy, or to play out some strange fantasy, never entered my head.

I have no idea of the motivation of this woman (and lets face it, we don't know if she's a woman, she could be anyone). I assume its the symptom of a much deeper problem, and she clearly needs some help.

For those of us who support others, and receive support online, it's deeply shocking, and deeply upsetting that our trust can be breached so deeply. That someone can do this with such little thought of those they are betraying, and, indeed, the family of the little baby who's photographs were used to perpetuate this set of lies.

I have my blog, and my photographs, out in the world in good faith. This episode has upset me so much, and I felt that I wanted, in fact needed, to blog, as a warning to all of us in premature baby, and babyloss circles. Not everyone is "on the level". We need to have our "bullshit radar" about us before sharing our innermost thoughts, and certainly before giving any financial help (I am not aware that this person is trying it on, however have heard of other cases where money has been obtained fraudulently).

My heart goes out to the owner of this group. Danielle is a kind, warm, giving person, who has struggled after the birth of her daughter, and gives of her time and her experience freely without question. She has a group of administrators around her who are just the same, warm, open, giving people.

I'm not going to remove my photographs, and I'm not going to dwell on it. I am not going to stop supporting others on line, or close myself off, as I feel that way, these "pretenders" have been victorious.

I post this as a cautionary tale, and in support of the wonderful work Danielle has done, creating and nurturing this strong, caring group.

UVQ6S2XRDW95

One Cheeky Monkey

2012-01-20T16:03:00.001Z

One characteristic Joseph has always had, is that he is absolutely hilarious. Now he has discovered that words make sentences, he's just a scream! He also has mastered the deadpan delivery, that I can't seem to do.

The other day we were walking back from my friends house, and we were near the road. "Hold my hand mummy" he said as we neared the road "be careful mummy, be careful near the road". Yes thanks son I'll be careful.

His new game is to sing "Little Miss Muffet", only our little miss muffet doesn't sit on a tuffet eating her curds and ways, she eats a carrot. Cue laughing and giggling as I stumble and then tickle him until he gets it right!

Joseph is learning new ways to embarrass me every day. The other day I made him walk a long way, and we popped into the supermarket to get baking supplies for my gluten and dairy free baking adventure. Yes, a winning formula with an overtired child who has walked that bit too far. He started to get really fed up and shout "take me back to my mummy!". Some rather suspicious looks from passers by!

Perhaps my favourite Josephism from the past week is when I was dancing the other day to my Just Dance game which I do when he is in bed. He came down from his nap and said "what were you doing mummy?" and I explained I was dancing. He grinned and said "try again mummy", so I did another one. "Oh mummy, another one another one" So I ended up doing an additional hour of dancing. Now whenever he is bored of the telly he passes me the Wii remote and says, "Mummy dance for Joseph". I've lost 5lb in the last two weeks, so I guess I have to thank my pint sized personal trainer!

I shall leave you with Joseph's dinosaur arrangement that he did the other day whilst waiting for dinner.

EMU Australia - Merino and Premature Babies

2012-01-19T07:44:00.002Z

Last week I attended a wonderful event in Manchester at the Place Apartments, hosted by EMU Australia. A room full of EMU products, ranging from swaddling blankets for babies, to gorgeous coats for their mums and dads, and of course, lots and lots of glorious boots. But EMU's range is more than just their fabulous boots.

As well as learning about products I met some wonderful bloggers, Angela and Anwen, they are such lovely women with fabulous blogs, and it was really great to meet some local bloggers.

Talia hat and mitten set

I really want to tell you about EMU's baby range, because I think in the UK little is known about merino wool. Merino challenges us about what wool is like and its properties. Superfine merino is really soft. Spun and knitted or woven it is so soft. I just wish I could convey to you by words just how adorably soft the swaddling blanket, hat and mittens and sleeping bag were that I touched (and couldn't put down!)

Merino is easy care. So don't worry, you can machine wash it, its durable, so should last you several babies if you have more than one, it's odour reducing and stain resistant. All important qualities for baby wear.

Ingal Farm Wrap

For a baby born low birthweight and premature there are some additional qualities that are important. You can read more about merino and babies here at Merino.com . As a mum there are two important features of merino that I think are essential for premature babies, and that's why I really want you to know about them. The first is that merino allows your baby to regulate their own temperature. It's an amazing fabric, and we all know how important temperature regulation is, especially here, where there is such a variance in the temperature of our houses especially this time of year.

Merino is incredibly soft and it protects the baby's delicate skin. I truly wish the swaddling blanket had been around when I had Joseph, it was just so supersoft and snuggly and a great product. The fact that as well as being soft, the fabric is durable makes it a sound investment. Once the baby is no longer swaddled, it can easily be used in a moses basket or pram, or on the floor as a playmat.

Kioloa Sleeping Bag

My favourite product is the sleeping bag, available in indigo and stone as well. It has an opening for a seat belt, so fantastic for travelling. It's supersoft like all of the merino range, and of course machine washable. The size is very generous so should last a baby a long time.

EMU is of course synonymous with footwear and there was a great array on show, from baby, to toddlerhood and into childhood. I grew up wearing ugg-style boots, but back when I was a child/teenager they were our slippers, we wouldn't go out wearing them with skinny jeans, or trendy jumper dresses, but its great that now you can!

I hope you have found this post informative and will consider using merino products for your baby! If you have any questions, please ask, EMU has given me a lot of resources to refer to.

And before I leave you with some images of the footwear, let me tell you my personal reason for loving merino. My grandfather ran a sheep farm in Tasmania. Merino is a very important Tasmanian product, and wool farmers have had a tough time over the years. EMU uses Australian merino. The sheep are treated with respect and kindness. It's really important to me that these farmers' expertise and compassion is recognised and rewarded.

Disclaimer: I was invited to an event in Manchester, where I received wine, cake and nibbles, my opinions are my own.

Max's Birthday - Gluten and Dairy Free Baking

2012-01-18T14:37:00.000Z

Joseph's little friend turns 3 today. I was chatting to his mum who was at a bit of a loss as to what to do for Max's birthday "he can't even have cake".

Now cake is one of the essential food groups as far as I am concerned, and couldn't imagine a child's birthday without it. Max is gluten and dairy free due to severe allergies, he is also nut free, a lot of the commerical gluten products either contain nuts or can't guarantee to be nut free. So I set about trying to bake some treats for Max.

Twitter really came in useful, I have no idea what I'd do without it at times, I asked a few weeks ago for some help and got loads of help and advice. Several Twitter folk suggested Pure spread, and one suggested to look at the recipes on the site.

Scrummy Biscuits - vanilla

Butterfly Cakes

Pavlova

The first two recipes come from the Pure start. The cakes weren't gluten free, but I substituted the gluten free flour with great success. I used plain flour but added 2 teaspoons of baking powder instead of one. The cakes are so light and fluffy with a tender crumb, and I think they're better than my normal vanilla cupcakes.

For the birthday cake I'd decided on Pavlova which is just my normal recipe, as it only contains sugar and eggwhite its naturally gluten and dairy free. My only issue was what to fill it with, normally a pavlova is filled with cream. My neighbour suggested soya cream, but it can't be whipped so that was no good. I did a bit of a search and found Alpro Vanilla Dessert, and used three tubs of this topped with the fruit you can see in the photograph.

My neighbour was amazed at the goods I produced, and surprised how "normal" they look and taste. I've really enjoyed my foray into gluten and dairy free baking and looking forward to exploring further!

Having a Premature Baby - Tommy's Guide

2012-01-17T08:27:00.000Z

It's no secret to regular readers of my blog that I love Tommy's the Baby Charity. Until Joseph was older I had no idea how important Tommy's is to all pregnant women, conducting research, providing information and looking after the needs of pregnant women to reduce prematurity, stillbirth and miscarriage.

I first found out about the plans for the Having A Premature Baby over 12 months ago, and was asked to tell our story. My story appears in short vignettes in the book, alongside the stories of other parents. It's quite amazing to see quotes from me appear in this guide, and I am so proud of it! The guide is produced with thanks to the Asda Foundation.

So why do I think having a guide like this is so important? Whilst a lot of premature births are spontaneous, many women know they are at risk. This guide is non-threatening, its is reassuring, but above all, it is informative. Just seeing pictures of how your baby might look, and a guide to the equipment used is invaluable. Unlike me, who had been in a NICU a few times before I had Joseph, many women have never set foot in one.

Very often I am approached by women who are supporting other women, by grandparents, or people who have been told their baby may be born early, and asking for information. I have struggled at times, as to how much and what to tell people. Now I can send them to Tommy's where they can obtain this guide free of charge (just covering their postage costs)

The 94-page full-colour-book has six chapters:

Explaining premature birth
Reducing the risk of premature birth
The birth – before, during and after
Your baby’s time in hospital
Taking your baby home
Looking after yourself – parents’ wellbeing

You can read more about the guide on Britmums here, and I have told our story for the Indpendent Online today too.

Breastfeeding in Public - What's All the Fuss About?

2012-01-16T08:44:00.000Z

Ideally, I should be putting a picture of myself breastfeeding on this post! Joseph did breastfeed on a few occasions but I never got a picture of him doing so, which makes me sad. But, we never really fed in public. Or did we?

I've grown up around breastfeeding. My mother fed my sister, I remember my aunt feeding my youngest cousin Charles, and assume she fed the other three as well. Most of my friends breastfed. I am not sure of the figures but think its possibly more prevalent in Australia than here.

Expressing is a bit of a different ballgame, but it never bothered me expressing on the ward. This picture was taken in the dead of night, I'd gone down to see Joseph and express by the cotside, well, because I could! It made more sense than sitting in my room feeling miserable.

When I expressed I'd do it by his cotside with screens around me, or in the breastfeeding room if it was free, or shut away in the family room. I didn't really want people seeing my boobs being sucked in and out by a machine, its not particularly natural and its certainly not sexy.

But when it came to feeding, I was really shocked by our unit. We were expected to draw all the blinds, and put screens around, and there was a general expectation not to feed during visiting hours. I found it baffling. Surely in a maternity unit, you would expect to see babies feeding at the breast. Breastfeeding is initmate but is it private? Surely that's up to the mother.

I read this article today, posted by the lovely Mom in Israel. If you don't follow her, you really should, her own blog and the blogs and articles she links too are fascinating.

Now I am sure most breastfeeding women don't breastfeed like she is shown in the picture, but hey, more power to you if you do. But lets just say, if you feed like this in Tesco cafe you are possibly putting yourself in the line of fire. Most of us breastfeed discretely, certainly more discrete than I have seen some displays of affection in said cafe.

It saddens me in the 21st century we are even discussing this, that we need to see nurse ins in New York, Brighton or Debenhams. It's stupid. Personally, I lay the blame with the newspapers and magazines in this country have turned the boob into an object of desire, and not a functional feeding mechanism.

It's time to change.

Not a Silent Sunday

2012-01-15T18:57:00.001Z

Blimey, what a day. Last night our "stray" cat Niow Niow was sick. She vomited several times, cue much wretching from the delicate little flower that is my husband as we cleaned up time and time again. We thought we'd see how she got on overnight. Unfortunately a scene of devastation awaited us when we came downstairs this morning, Cue a phone call to the after hours vet practice, and off we went, Niow Niow, Corey, Joseph and I, a family trip to the vet. I can't drive, Corey can't talk about a sick cat without crying, so we all have to go to the vet.

So £100 lighter, we left the vet with omeprazole (finally I am an omeprazole mummy - often used in premature babies with severe reflux) and some rehydration fluid, and none the wiser as to what was making our pussy poorly, only to be met by a £70 fine for parking illegally. Apparently it was permit holders only but nothing to say that that I could see, so a quick email to appeal - wish us luck.

The cat lay about feeling sorry for herself most of the day:-

But has been most compliant taking her liquid omeprazole, and is now starting to eat. Hooray. The vet remarked how healthy and well she looked for a stray, raising his eyebrow at me. After a full year and a bit, I think we need to bite the bullet and say we are a two cat family!

Joseph had a mad moment this afternoon, whilst the football was one, and nothing would please him so I knocked up a batch of chocolate playdough, which went down a storm! Joseph had great fun making little cakes, and didn't even eat any of the dough! I was most impressed

We rounded off the day with a lovely meal of meatballs, mashed potato and vegetables. Joseph ate carrots. I'm so proud!

So as not to leave anyone out, here is Corey, Joseph and the non poorly pussy, Atticus Woo.

I am so glad its Monday tomorrow, time for a rest!

Cake a Difference - 6-12 February

2012-01-14T10:27:00.000Z

This year I will be supporting Bliss by baking cakes, cupcakes, large cakes, any sort of cake, and selling them to raise money for this important charity.

Bliss is very dear to my heart, because without them, I don't know how I would have coped when Joseph was in hospital. Their literature was the first thing I read to help me guide me through the maze of having a sick, small baby. Their family support helpline was there when I was scared, angry, frustrated - their volunteers and paid staff helped me to ask the right questions, to care for my self, to be there for my baby.

Behind the scenes they fund research, which directly helps babies like mine. Without their research babies would not have the receive high quality, evidence based care.

Bliss cannot do these things without money, and that's where you come in. There are two ways I would like you to help.

Bake a cake, or a few! And sell them. You could have an event, you could sell them at work, to your neighbours, to parents at school. You could have a Cake A Difference tea party.

The second way is order cakes from me. If you live in or around Manchester you can order cakes from me and I will bake for you and deliver (within reason) or you can collect.

I love to bake, and over the coming days will come up with a price list, however if there is a cake recipe you have seen that you have always wanted to try but never have the time, why not get me to bake it for you!

Cake A Difference is a great way of getting together, with tea and cake, and talking about Bliss, our babies, and the fantastic work they do. I will be sharing more about Cake A Difference over the coming weeks.

I Wasn't There - One Born Every Minute

2012-01-13T15:25:00.000Z

I am addicted to One Born Every Minute, and have seen every episode of every series, this being the third one. Having done a Facebook status about it on Wednesday night, I can see that many mothers of premature babies avoid it, and quite sensibly so. I find it interesting, and fascinating, they show a variety of different mums and their experiences, including life inside the Special Care Baby Unit, usually at the end of the series.

This week took me by surprise. I had just finished an hours exercise so maybe my adrenalin was all over the place, and I'd missed the first ten minutes, but as soon as I started watching it I was in floods of tears.

It suddenly hit me how different my experience was to those women. I never had a contraction, no one every looked at my lambing end to check out my cervix, I didn't labour. My baby didn't come out my vagina, and I didn't get to hold him.

And that's it, that's what ultimately had grabbed me. My baby was born, and he was taken away. And I was not there. I was not there as they worked on him, ventilated him, checked him over. I was not there as they took him away to special care, I was not there when they trialled him without ventilation. I saw him for 5 minutes in his first 24 hours of life. And nothing can take away that sadness. Nothing. Not the millions of kisses and cuddles I have had since, I was not there.

Unfortunately, these feelings have had a knock on effect. Since Christmas Joseph has been incredibly unsettled, and I have found it really hard to deal with him, particularly at bed time, as cries "mummy I need you, mummy come back" the old feelings come back and I want to just hold him forever and never let him go, which isn't healthy.

Yesterday something happened that put it all in perspective. I ran into an old friend I used to live next door to when I first arrived in the UK. I can't go into too much detail but this friend lived in supported housing as she has a mild learning disability. We lost contact when we both moved house, but are back in touch now. She had a baby six months ago, a girl, she was 8lb + and she delivered her on gas and air, and I am so proud of her. But, due to her disability the baby was taken away and is subject to a guardianship order.

I missed my baby's first days, but I can hold him forever, my friend can see her baby one day a week.

It puts it all into perspective.

Baby Milestones - Software for Parents

2012-01-12T09:19:00.000Z

This week I learnt about Baby Milestones from Gurgle. I gave the free trial a go, because I wanted to see whether it was something I could recommend to parents of premature babies. One of the reasons I wanted to review Baby Milestones is because as a parent, I have found I haven't kept notes or a baby book, as at the time I didn't know about specific baby books. I do have all the information on Facebook though and now with Timelines I can look back and enter it in!

I love how easy it is to enter information on Baby Milestones and its pretty software too. One comment I had initially is that the images on the software are clearly bubbly, big, term babies which could be a bit upsetting, especially to a new parent, but once you start importing your own images of your baby, these are replaced.

The software is pretty impressive I think. You can use this software for trying to conceive and it helps chart your most fertile times and then you can enter a pregnancy, and use it to chart your pregnancy. The instructions that I read explain what to do if your pregnancy ends, in a very sensitive manner, and it appears this has been well thought out. You can easily chart twins and more on the software too, which I think is great, and additional new babies too.

Once your baby is born the software tells you the milestones to look out for. My first concern is that you cannot enter the date of birth and expected due date, however I have raised this with the team looking at the software and they are looking into this issue. So it is up to you as a parent to make sure you correct this yourself, either by lying about your babies date of birth, or remembering to look back to the appropriate month of your baby's development.

Having said that, however, the milestones are very broad, and I found that for a lot of things Joseph would have fit the appropriate milestone, albeit at the last moment, for a lot of things, other than his sitting, crawling and walking.

Another thing I love about it is that you can use it as an appointment diary, which is really helpful for parents who have a young person who has a lot of appointments. I really love that you can store all your baby photos and videos, you have everything all in one place rather than files of this and files for that and information written here there and everywhere!

One thing I would like to see, and wish I had the skills to develop, is an adjunct program for parents of premature babies where you can record our special milestones - the day baby came off ventilation, the day baby came off CPAP, when tube feeding was removed, the first breastfeed, the first bottlefeed, when the baby came out of an incubator..... These are the milestones that are special to me and I am sure are special to a lot of you, and I would love to have recorded.

So having used the software retrospectively these are my suggestions for parents of premature babies using this software.

If using it in real time, particularly if you have used it to chart your fertility and/or pregnancy, enter the date of birth and forget the software until your baby reaches term, then look at it again. In my opinion, it would be too much of a trigger to look at what your baby "should" be doing.
Until the software has the ability to enter the expected date of delivery with the due date, consider entering the due date for the milestone calculation, but be prepared that you may need to adjust that further. It's easy for me now, to realise Joseph was 3 months behind again physically from his expected due date, but at the time it was tough going, especially as Joseph was such a late walker even by 27 weeker standards!
Upload images straight away to get rid of the bouncy babies! Although they are very cute, but I think its nice to have your own images.
I think using it retrospectively once your baby has closed the gap somewhat is a great application of the software, especially if your purchasing this software for a new additional baby.
If your baby has another condition as well as prematurity I would advise perhaps not using this software, and indeed there is a disclaimer when you first use it that it is intended for babies who have been born at term, with no conditions.

Overall I think this is a lovely piece of software, it costs £14.99 and considering you can use it right from when you start to try to conceive until the baby is 5 and you can use it for more than one child, I think its a worthwhile investment.

Disclaimer: I approached Baby Milestones to trial this software, I have received no payment and my opinion is completely unbiased.

The Madness of Children's Television

2012-01-11T10:00:00.001Z

This week, and we're not through it yet, has been really interesting in the world of children's television. The first one was a "typical" Daily Mail article about Peppa Pig, entitled, is Peppa Pig making our children naughty?

I couldn't really believe it, even for the Mail it was fairly ridiculous and looked like it had been thrown together by someone cruising parenting forums looking for a "filler" story. It just is hysterically bad, and made me laugh.

One father spoke of his despair at how his four-year-old son had taken to splashing in what he gleefully called ‘muddy puddles’ on his way to school – copying Peppa’s favourite pastime.

Of course, no child has every splashed in a muddy puddle have they? Oh the horrors and evils of children's television. I personally love Peppa Pig. A lot of the shows feature grandparents, and with both sets absent from Joseph's everyday life, I truly believe Peppa has helped him understand grandparents and their role. One of my favourite episodes is about compost. I think Peppa is a wonderful programme, but I don't mind if you don't share that opinion, but don't let your kids watch it! Easy fixed!

The other big thing was Waybuloo. Waybuloo has been a constant for Joseph, it is not without controversy, however. Waybuloo features yoga, and has some principles that may be considered New Age, and some Christians are very much against it. Personally I love Waybuloo, as its relaxing and calming. It's a staple of the bed time hour. Last night I was cooking when I heard a strange voiceover on it. Cbeebies announced that they had made changes, cut 10 minutes off it, and put Dave Lamb as a narrator over the top of the track (he of Come Dine With Me fame)

I was quite alarmed, it changed the whole nature of the show, and made it sound ridiculous. I almost expected deeply sarcastic comments about the state of the bungle berry juice.

I even tweeted about it. And I wasn't alone, tweet upon tweet, in the most part up in arms about it. Today Cbeebies announced that they were reverting the bedtime hour and Waybuloo to its original state.

I am so pleased that they listened to reason and changed back again. Children are creatures of habit, they don't like sudden abrupt change.

And neither, it would appear, do their parents.

Baby Essentials at TKMaxx

2012-01-10T17:08:00.001Z

Now regular visitors to my blog will know I don't often blog about products or shopping, but every now and then something comes along that I really believe in and I want to share with you. Tomorrow, Wednesday 11th from 1pm - 2pm there is a Twitter Party taking place in conjunction with Britmums and TKMaxx talking about those essential things you need to buy for a new baby. Twitter Parties are so much fun, a good gossip, some prizes, and you may even make new online friends. I urge you to pop along and have a look, the link will give you more information about how to take part. TKMaxx have some fabulous new arrivals in store - baby gifts, clothes and essentials. You can read more about it here.

TKMaxx invited me along to the Manchester Arndale store to look at their fabulous nursery range and do some shopping. I have a load of expectant friends at present, so it was very timely. I was very kindly given a gift card to use. Having a baby is expensive, it is estimated a new baby costs £3000 in the first year. Every little helps and if you can get great brands at great prices, then it makes sense to check TKMaxx out.

I am a confirmed TKMaxx shopper, having discovered it when I first arrived in the UK. At first I found it a bit bewildering but soon grew used to the concept. I love the fact that there aren't rows and rows of identical product, and there is loads of choice. I have to say, in the 10 years I have been shopping at TKMaxx I have noticed the organisation of the shop floor improve vastly. Today I was particularly impressed by how neat and tidy everything was and how it was easy to find what I was looking for.

I was amazed by what I saw today. Several brands of microwave steriliser and bottles, oodles of clothes, different types of sleeping bags including some leading names, amazing changing bags, blankets, towels, mobiles, even a highchair, all at prices much lower than you would expect to see in neighbouring shops on the high street.

I found it really hard to decide what to buy, and this selection is what I decided on.

Here is a run down of what I purchased. Most items are for a baby shower I have been invited to, and I am so excited. Can you guess what flavour my friend is having?

Bath towel: This is no ordinary bath towel, coming in its own bag, so great for taking to the pool. It's a double duty towel with a velcro closure cut out so you can wear the towel around your neck so you can place your baby straight into the towel, no clenching teeth required. The towel has a hood, so can be used as a normal baby towel as well.

Swaddling blanket: When Joseph was in hospital the nurses used to swaddle him to calm him down, and to do some tasks like medication. I found I couldn't use a square, no matter how many times I was shown, so bought a swaddling blanket, similar to this one. It looks very snuggly!

Sleeping bag: TKMaxx has a huge range of sleeping bags in lots of sizes and lots of well-known brands, I was spoilt for choice. I chose this one as the design is gorgeous and the fabric is really soft. I chose 6-12 months size as I think its the most versatile. For us it was great value as Joseph was in this size for 18 months!

Blanket: Another area where I was spoilt for choice was blankets. The shop assistant was laughing at me. My favourite had Eiffel towels on it, but she judged it too girly! So I chose this blue grey one. I love blankets for babies, for the pram, for an impromptu play mat, and for when the weather is either too warm for a sleeping bag, or the baby needs additional warmth. I also prefer blankets for day time naps.

Changing bag: My final purchase was a changing bag. I was gobsmacked by the choice, and it was incredibly difficult to choose a great bag, but I wanted something neutral, washable, with some pockets but not too many and I think this one is perfect.

TKMaxx is definitely worth a look for nursery items either for your own baby or for gifts. If you've tried shopping their before and found it bewildering, do try again, you might be pleasantly surprised!

Don't forget the Twitter Party tomorrow!

TK Maxx is providing as prizes eight £100 TK Maxx gift cards and one Grand Prize £200 gift card (which can buy a lot of babygros…or a discounted designer outfit for yourself). To be entered into the random drawing, tweet a tip or comment during party on Wednesday 11 January before 14:00.

#babyessentials Twitter party
Weds 11 Jan
13:00 – 14:00
Prizes: 8 £100 TK Maxx gift cards and 1 Grand Prize £200 gift card

Come join the conversation! Whether you’re expecting your first child, are a new parent or an old hand or are shopping for friends, this party promises to be a eye-opener, with candid baby-buying advice.

Living With Disability and Why DLA is a Godsend

2012-01-09T11:08:00.001Z

The twittosphere is abuzz with news of the Spartacus report, which you can read here. I do not know a lot about the proposed Government reforms regarding Disability Living Allowance (DLA), to be honest, it scares me. As much as I know is that in 2013 everyone currently on Disability Living Allowance will be reviewed, and as a result many people will lose their benefit. This blog provides excellent and in depth insight into the changes that are proposed, and I would urge you to read and support Bendy Girl.

I don't talk about my husband much. He doesn't read my blog, not because he doesn't support me and what I write, but because he is a Luddite. If it's not on paper, it doesn't exist! He doesn't use Facebook or Twitter and certainly is not a blog reader.

My husband has a serious and life long congenital disability called Arthrogryposis Multiplex Congenita. He does know and support the fact I am writing about it today. This disability affects him every day. I met and married Corey knowing about his disability and fully accepting him, but we cannot hide from the fact that, at times, his disability makes a huge impact on our lives.

DLA is a fairly unique sort of payment, I had never heard of it until I met Corey, but it is awarded on a sliding scale, to people with a disability, living in the community. It is non-means tested, and an acknowledgement that regardless of your income, disability can impact you financially. There are two components to DLA, mobility and care. Corey gets both a mobility and a care component.

I think some people are under the misapprehension that if you have a disability automatically you get extra support and help from the NHS and the council, but this is not the case. We don't get any additional help for Corey, if we need assistance, we use the DLA payments we get to help with the additional costs of living with disability.

Corey's disability means his hands are fused, he has limited function in his wrists, so there are a lot of household tasks he cannot do, and personal care tasks. His knees are also fused, and he cannot kneel, therefore many tasks are outside his reach. Even changing nappies is very difficult for Corey, he can't do it on the floor, and he doesn't have the strength or stability to lift a baby on to a changing table. We did nappy changes on our bed, but even that is hard for Corey.

Corey's biggest issue are his feet. His toes are bent under his feet, it is painful for him to walk, his toenails are constantly assaulted when he walks, he is prone to infections, both fungal nail and skin infections. Somewhat unbelievably, he is not eligible for specialist footwear provided by the NHS. He has to find boots that will fit him, which are expensive, and due to the way he walks, do not last very long. We are on the constant hunt for the pefect boot!

DLA helps us keep Corey healthy and mobile, and helps offset the impact his disability makes on our lives, and I am very grateful for it! Without DLA Corey would not be able to work, and would be able to claim a lot more benefits.

After having Joseph, the impact of Corey's disability became a lot more apparent. He gets very tired, it isn't fair of me to ask him to do night feeds and nappy changes. However, Corey does do the washing up everynight and hoovers and washes the floors. Lately under this cloud the government has put over people with disabilities has made him feel nervous about mowing the lawn, or hoovering the front room, in case someone tries to say he's not really disabled. I find that sad.

I'm eager to find out more about these changes and learn more about the campaign to ensure that people who really need it, do not loose their DLA.

Pinterest Addict - And a Pledge

2012-01-08T12:03:00.000Z

I am addicted to Pinterest. It's a fantastic way to collate pictures, ideas, recipes and inspiration. You can repin other people's pins, you can pin your own stuff from the interwebs, its fantastic. It's visual, its pretty and its fantastic. And, unfortunately, addictive.

One of the worst aspects of Pinterest addiction is collating fab things to make and do, and you never do any of them. And that is what has happened to me.

My favourite board of my own is this one. I've got a few fab craft ideas to do with Joseph and now is far more interested I pledge to try a few and report back over the coming weeks.

I also pledge to make him one birthday present a month until May. I have created a board with some of the ideas I've gathered previously, and again will keep you updated, as long as you don't tell Joseph! Shhhhhhhhh
I have loads of fabric and trimmings and am looking forward to using my stash.

Joseph's main two birthday presents will be a toy kitchen, and a balance bike. The rest of his gifts will be either home made or from our local NCT nearly new sale. I want to make some toy food especially, and get some preloved kids pots and pans.

Joseph is currently learning his letters and obsessed by numbers so am looking forward to making the bean bags and the letters. I also want to make the travel car mat as we do a lot of appointments and travel and it would be great to have something easy to take for him to play with.

Do you use Pinterest? If you would like to use it and want to be invited, please let me know!

What do you plan to make this year?

Why You Should Blog

2012-01-07T09:08:00.000Z

When I started this blog, I knew suprisingly little about blogging. I thought I'd write for myself, my friends and I knew I might get the odd google hit. I knew nothing about statistics, and in fact had been blogging for 9 months before I ever looked at the Stats tab! I didn't know anything about a blogger's relationship with PR, about working with brands, that charities might be interested in what I have to say, nothing.

Over time I have been completely floored by the interest in my blog, and have been stunned to receive a number of compliments, and approaches. This year I want to work on improving my writing, and on working with others, and am excited already to have been given some marvellous opportunities that you will learn more about in the coming weeks.

However, despite all this, my basic reason for blogging is intact, to tell stories, sometimes my own, sometimes based on research, sometimes other people's stories. And that's why I think you should blog too, if you don't already.

This week I read a post on this blog, written by a fellow mum of a premature baby (and a term one too), who I met through Bliss. I was so pleased to read I had inspired her to blog. Blogging is such a lovely way of sharing things, stories, recipes, craft projects, which I know Rebecca will have lots of, as she is a very dynamic and creative person.

I love to blog, and love to write, and I love to read blogs, although I don't always comment, which I must make more of an effort to do this year, it makes me happy to see new blogs popping up all the time.

Now with mobile apps, fancy phones, tablets etc, blogging is more accessible than ever, and a great way of making a record of thoughts, feelings and events. I'd highly recommend it, particularly to someone who has had a premature or poorly baby.

There are so many avenues to get started, if you need a hand to get through the start up process, give me a shout. Hoping to read a lot more blogs about our special little people this year!

Milk Dumping - How to Look After Your Milk

2012-01-06T12:01:00.000Z

This picture appeared on my Facebook news feed today, and it prompted me to blog about this important issue. For the mum of a baby in NICU, milk is very precious, every drop of it.

Like many mothers of premature babies, I expressed milk for Joseph. It was very important to me to breastfeed him, and when he was born early I knew what I would have to do.

One evening I was told by a nurse that all my milk was to be thrown out. I had expressed about 6 pots by that time. I had stored it in the fridge for 48 hours, then transferred to freezer when I realised how much he was on. I was told this was dangerous, so I tipped all that precious milk out.

I didn't think to question it, until I saw another nurse telling a mother to store it in the fridge first then transfer. Then I realised there were no hard and fast rules and every nurse had a different practice. It was incredibly frustrating and heart breaking.

Another time I saw a nurse with a pot of my milk about to tip it down the sink. I managed to fly across the room and stop her. She said it was out of date. We checked the date, she hadn't read the calender properly and in fact it was fresh milk from that day.

The way our unit worked was that we had a communal milk fridge and a milk freezer. Each mum got a certain amount of space in which to store their milk. As Joseph was on restricted feeds for a long time due to NEC (necrolitising enterocolitis) I had oodles. I found it was safer to keep it at home. Unfortunately I didn't own a freezer that was suitable (it is recommended you don't use a small freezer on top of a bar fridge. My neighbour Rita came to the rescue. She gave me a key to her house, and I'd run in there and pop my milk in, and then grab it in the morning.

The best piece of advice I got was from an agency nurse. She said "no one cares about the milk as much as you do, it is your job to take responsibility, keep an eye on it, and make sure it is being used correctly". I have heard horror stories of babies being given wrong milk, of milk going missing or being thrown out if the baby leaves the ward or moves hospital.

Nurses are very busy with a lot to manage so its in your interests to take care of your liquid gold as if it was indeed gold.

Taming the Toddler

2012-01-05T15:29:00.000Z

Since Christmas time, Joseph's behaviour has really changed. He is so much louder than he was, I guess because at Christmas time we had a house full of people of different ages, his sound was absorbed somewhat, and he had to be louder to be heard. Joseph's gentle "no thank you" or "not yet mummy" have been replaced by apocalyptic screaming. I am finding it hard to deal with at times.

However coupled with this, Joseph is becoming a lot more vocal, with a massive increase in his vocabulary and an improvement in his sense of comic timing, he is at once a joy and a delight as well as being a bit of a terror at times!

A lot of my friends use the "naughty corner" or "naughty step". I hate these techniques and its not something that I think would work for us. Most of my issues with Joseph aren't things he does, fair enough for pulling the cat's tail, biting etc, but most of my issues with Joseph are when he shouts, or is stubborn, and I don't think the naughty step works in those instances.

Joseph is just trying to find his way in the world, and although is a lot more verbal than he was, still cannot articulate his needs. So rather than punishment, I think we need to find a way of negotiating these difficult times together.

Joseph is also getting his 4 back molars and going through a growth spurt, and I think these two things are also impacting on his behaviour. This morning he had a massive paddy, no idea what over, and once he was a little calmer I sat him on his high chair and he ate and ate and ate. Why he couldn't just say "mummy I'm hungry" or as he said rather cutely on holiday "mummy can I have something to eat please?" our longest sentence ever!

I am hoping this phase is short lived,! Toddlers! So wonderful, but at times so frustrating!

It's Always Nice Travelling....

2012-01-04T08:18:00.000Z

To quote my husband, who says this everytime we get home from an adventure "it's always nice travelling, but its always nice to get home", we arrived back yesterday, after 10 days in Germany.

The passage home was interesting, we had a very trouble free drive from Herford to Rotterdam, arriving exactly when Sally SatNav said we would. We got to the boat at 6.30pm, our sailing wasn't til 9, but we were able to board straight away. The "Pride of Hull" has a lovely kids play area, and Joseph had a ball, playing with new friends, after a picnic in our cabin, kindly provided by my mother in law.

It was apparent that our journey would be affected by the storms sweeping the UK, but the plan was to set off as normal, hot tail it over the North Sea and then deal with it once we got closer to Hull. Every hour or so during the night Joseph would wake, pat his tummy and say "oh no" and go back to sleep. Both he and I felt quite woozy, but no sickness, which was great. Until we got off the boat and Joseph vomited all over me on the way down the steps to the car. Cue me stripping at the car, much to the amusement of fellow travellers, to change my top! Needs must.

Our drive to Manchester went without a hitch, despite the high winds. Joseph was so happy to get home and to see our cats! He took every toy out and played with it, and hasn't asked for his Christmas toys at all, which are still in a sack!

We are so glad to be home, and I now need to get my blogging head back on, and get organised for the year ahead. And not to mention my healthy eating and exercise head!

New Years Resolutions - Goal Setting for 2012

2011-12-31T15:08:00.000Z

I am really looking forward to 2012. We have been very blessed in 2011, with good health, and happiness. It's been a wonderful year, with very few lows and lots of highs. I feel ready to take on some big challenges next year and here are my goals/resolutions for 2012.

To lose 100lb (from my original weigh in, I think I have lost about 14 Christmas indulgence not included)
To raise £1000 for Tommy's
To have a fantastic cake bake for Bliss and encourage others to join in!
To save £1000 by year end towards Christmas 2013
To be a better blogger, not so much my own blog, but a better member of the blog community, comment and support others and get involved in more events.
To do more craft projects and make at least one thing per month.
To maintain a tidy house, and cut down on clutter!
To recycle, remake and reuse as much as I can

What are your resolutions?

My Resolutions 2011

2011-12-29T16:14:00.000Z

I didn't make complicated resolutions on New Years Eve last year. My resolutions were simple. The main one was to put the past behind me, to concentrate on Joseph as he is now, and to stop living in the past. I think I have achieved this, and have succeeded in using what happened to us for good, rather than getting upset and dwelling on it.

I also resolved to work hard on my blog and on sharing our story, and I have certainly achieved that. I am so pleased and proud of the reception Not Even A Bag of Sugar has had. I haven't quite worked out what my direction is now, and will be thinking more about this in the coming days. I certainly hope to deepen my relationships with the community of charities, parents and families of premature babies, and to help, in whatever small way I can, raise awareness and provide support.

I didn't make any resolutions about weight last year but will be doing this year. The last time I resolved to lose weight was in 2005, when I lost 30 kilos. I know this time that resolutions are not enough, this needs to be a lifelong commitment, and I hope that I am ready for this challenge.

I wonder, how did you all do with 2011's resolutions? Did you bother making any? Did you keep any?

I wish you all a peaceful time as we commence the New Year full of hope and promise.

Nightmare After Christmas

2011-12-27T07:18:00.001Z

Just to set the scene we are in Germany for Christmas. My husband and I are room sharing with Joseph. We tried various options, a toddler ready bed, a mattress on the floor and bed sharing, however the only thing that Joseph will settle in is a cot. It's a standard cot and he can climb out. It's positioned at the end of our bed so if he does climb out he has a soft landing.

Last night Joseph settled well. We had a nice evening with extended family, eating. For the record I had one glass of wine and a cup of tea. We went to bed at 11.

During the night I had a very vivid dream. This isn't unusual for me, but I don't usually have great recall. This dream was like a movie.

I was pregnant again but with Joseph. I had known him as a little boy, but found myself pregnant again but totally the same pregnancy.

I relived the whole thing from discovering the pre eclampsia to going to theatre. This is where it changed. When we got to theatre there were two other women waiting. An argument was taking place as to who should go first. One woman was at 39 weeks. She had had ten late miscarriages and stillbirths. No live babies. They wanted to deliver as they were concerned that this baby may not survive down the birth canal.

The second mother was also an elective section. She had tokophobia (fear of childbirth) due to previous trauma. This baby had downs syndrome and was to be given up for adoption at birth.

Then there was me. The discussion was taking the direction that these two babies were term and deserved priority over my tiny baby who may not live anyway. Whilst I was poorly death was not imminent and I could wait 90 minutes. The consultants were adamant my baby would be disabled anyway and another hour or so would make no difference.

I was distraught. I explained that Joseph would be small, would need hospital care for a couple of months but would make a full recovery. All the medical staff laughed. They made a complete mockery of me. I then explained I knew this child. He was 2 and a half, walking and talking. He is fine.

They then referred to my notes, and saw depression and anxiety. They said when the baby was delivered, if it survived, they would call social services to have my mental health assessed and decide whether I was a fit mother.

I began to sob. I could feel my toddler in my arms. He was crying out "Mummy, mummy, mummy". He needed me to fight for him and nothing I could say or do made any difference to these people who had made their minds up that the life of the term babies was more important than the life of my premature baby.

I woke up, looked down, and there was Joseph, frightened, lying in my arms, asking for cuddles and kisses. I'm not sure whether I had been sleep talking, or called out, or whether it was just coincidence.

Most spooky indeed.

Homesick at Christmas

2011-12-20T08:45:00.000Z

I've lived in the UK for nine and a half years, about 3 x longer than I thought I would last, and this is my 9th Christmas in the Northern Hemisphere. I never go home for Christmas. I actually really love Christmas here, and it all makes sense, the lights, the snow, the Christmas songs. I love the traditions, that although adopted in Australia, make much more sense here. How lovely to have all the Christmas lights when its dark by 4pm, to wrap up warm and have mince pies and mulled wine whilst doing your Christmas shopping. I have embraced Christmas here.

However, I miss my family. I miss them all year round, but never so more acutely than at Christmas. I miss my mum and my auntie cooking Christmas dinner. Huge spreads of cold meats, salad, and always two puddings, the obligatory Christmas pud, then something more fitting. An ice cream bombe, a gateaux, a fruit salad perhaps.

And I miss the weather. If I was a mega millionaire (with no care for the environment) I'd have a superfast jet, spend Christmas Day here, then get to Australia in time for Boxing Day!

This is the first year of Joseph's life that he won't get to Australia in the New Year, financially its just not possible, and I have decided I want to work towards spending Christmas in Australia in 2013, so this coming year I am going to save, and try to bring some extra money in towards this goal.

Tasmania has some lovely traditions. The Toy Run, where bikies ride from one end of the state to the other, collecting toys for children less well off. The Giving Tree in the ABC studios in Hobart, where local people buy gifts for people who may have nothing to open on Christmas day. The parades through Hobart and Launceston with floats and people all dressed up, and my favourite, Carols by Candlelight. I used to go to the one in City Park in Launceston every year.

New Year's Eve makes so much more sense in a warm climate, as much as Christmas is best celebrated in a cold one. Barbecues, going to Hobart and walking around Constitution Dock looking at all the yachts that have finished the Sydney to Hobart Yacht Race, watching the fireworks and seeing the New Year come in with people you love. Here, I never go out on New Year's Eve, preferring to have a few quiet ones at home in front of Jools Holland's Hootenanny!

I'm really hoping that I can pull this one off in 2013! Bring on the challenge!

Facebook and My Premature Baby

2011-12-18T21:37:00.000Z

Ages ago I read this great post by Mummy Pink Wellies about how Facebook got her through the birth of her daughter, and she got great comfort and support.

I've recently received the new update and have Timelines, which is just amazing, it breaks down your information into months. I watched the video this morning that explains it, and it was amazing, it followed this man from his own beginnings, his courtship, his marriage, the birth of his child, the child being in an incubator, and it just sums it up for me.

Joseph's journey was well documented on Facebook. I will now be able to update his baby book with exact dates things happened as they are all on there.

My first update was at 9:32 am on the 7th May 2009 "Kylie Hodges has been admitted in to hospital, suspected pre eclampsia, prayers and positive thoughts please". Followed at 15.47 "Kylie Hodges has got pre eclampsia. Likely to have c-section tomorrow, scared is an understatement."

My blood runs cold reading this now, but it was just the easiest way. I was in hospital, phone calls are expensive, especially to Australia and Germany and it was a swift way of updating everyone. Reading everyone's messages of support makes me well up in tears. It's clear a lot of people hadn't realised I was only 27 weeks along!

It's funny reading on through his stay, how my every day life, of several buses a day, dealing with the hospital bureacracy, and handling the whole situation of a baby who doesn't live with you is reflected on my updates, and most heartwarming to read the little messages of support.

Moving on to nearing homeward, I can see in my status updates my sense of humour shining through. On our first night rooming in, on the 19th July "Kylie Hodges too half an hour to work out the tv in her room. Working out the baby is proving somewhat more tricky."

And on discharge day at 14:48 "Kylie Hodges is still waiting for the eye doctor. Any of you practice opthalmology in your spare time?" Obviously getting rather desperate! The staff even suggested we stay another day! Um no, I don't think so!

And finally on the 21st July at 17.42 "Kylie Hodges is on the sofa with her little man".

I am so grateful for Facebook, I felt so supported and cared for. Through Facebook I have met and got to know many parents of premature babies, and have offered and received support. I have met experts, joined groups, and it has strengthened my knowledge of having a premature baby, here and around the world.

I will always be grateful to Facebook and dread to think how my journey would have been without it.

And I'm ever so grateful for this update so I can look back on it all, and give thanks to each and everyone of you who cared for me, cried for me and cheered me up when I felt so lost.

Give a Truly Precious Gift this Christmas

2011-12-17T17:21:00.000Z

At this time of year there are so many pressures on us, timewise and financially. It's a busy time of year, and often quite stressful. However to balance that, it's also a time of year where we think of others, maybe even people we have never met.

Think of a gift that will cost you nothing, save maybe an hour of your time, will not cost you any money, but might just help save a life. Blood.

When Joseph was in NICU he, like many other premature babies, needed a number of blood transfusions. The medical team lost count at 8 transfusions. I have to say, I had always thought of blood transfusions for adults, or children with leukemia, but had never even crossed my mind that tiny babies might need one or several.

Bliss are working with the National Blood Service to ensure lots of people give this lovely precious gift at Christmas time especially.

An amazing fact is that one donation can provide enough blood for four individual doses for a premature or sick baby.

If you are interested in becoming a donor please visit the National Blood Service website or call 0300 123 2323 to find out more.

Even if you have previously been told you can't donate, please ring and check, as the rules do change from time to time.

Christmas Shopping with a Toddler and How to Survive It

2011-12-16T13:17:00.000Z

With money being tight, I knew I'd have to wait til this Friday to do the last of the Christmas shopping, gifts for my Mother in Law and two nieces. I thought it would be quite straightforward as Joseph was meant to be in pre-school. Unfortunately they decided to close for today, so I had no option but to take Joseph. I would normally resort to on line shopping, but with us leaving for Germany mid week I didn't there'd be time.

I was very much dreading taking Joseph and thought it would be a nightmare, so here are my tips!

1. Plan in advance where you want to go, and have an idea of what you want to buy.
2. Try and pick somewhere not too far from home, we are fortunate that our town has had a huge spurt of regeneration and has some great shops.
3. Explain a few days in advance to your toddler what you are going to do. I find Joseph's understanding is a lot better than his speech. I showed him pictures of Grandma, Ella and Livi, and explained we were going shopping for their presents.
4. Choose a quiet time of day and the best time for your toddler. Like me, Joseph is a morning person, and fortunately the shops are at the quietest.
5. Stay focussed on the task at hand, but prepared for little toddler breaks.
6. Rewards! This morning Joseph was excellent in the first two shops, and we got half the presents done, so we stopped for a gingerbread snowman, Joseph's treat of choice.
7. Review, outline what you have done and what you still have left to do, its helpful for both of you!
8. Have a treat at the end. We went to the quietest coffee shop in town for a coffee and bagel, and an apple juice and sandwich.
9. If you are on public transport try and synch your times, we have only have one bus an hour now, but we managed to get done and dusted in two hours, with a snowman and lunch stop!
10. Work within your child's limits. I know that for 2 hours, I need a pram for Joseph, it's also handy to put stuff in, now is not the time for heroics.
11. Round off the trip with lots and lots of praise, Joseph now loves being told he's done an excellent job and I am proud of him.

And so it is all done, presents bought, now just for the endless wrapping! Now that, I am not attempting with a toddler!

Joseph - My Year in Review

2011-12-15T09:00:00.000Z

I find it quite atrocious that my mother seems to forget that this blog really is all about me! So it's only fair I get to tell you about my year!

After Christmas mummy and I chilled out at home getting everything ready for The Big Trip. I don't remember much of January, except it was cold and we didn't get out much. There was all this white stuff on the ground, and mum didn't enjoy pushing the pram in it, and I still hadn't found my feet. Well I had, I knew where they were all along, there just seemed to be much better things to do with them than walk on them.

On Valentine's Day mummy and I gave daddy a fantastic gift, we left for six weeks. We went on a big plane (my finest moment was calling a Catholic priest Daddy, mummy went very funny colour) and landed in Melbourne. Then we got on a smaller plane and went to Tasmania. I got to play with my Grandma and Grandad, and drive them mad. I tried to learn to walk, I could push Grandma's washing trolley, and even walked with Grandad's walking frame.

I spent some time with my Auntie Penni, and her lovely kids. I was a bit miffed to discover I was no longer the littlest and cutest, that title had been handed down to my little cousin Avery. I got to go to the zoo with my Auntie Laurel, and I ate lots of cake, and discovered watermelon!

We arrived back in England in late March. I was very busy when I got back. I had to see the physiotherapist, who thought I was really funny. Although I was 22 months and not walking, she wasn't worried, she thought I was too clever. The first thing I did when I got to her room was jump on a tricycle and push myself around to look at all the cool toys. I also had the see the orthoptist, who looked at my eyes. I didn't want to play ball, until the end, when she got the cool stickers out, much more interesting than boring tests. The only one I like is the 3d test, because I pass it, and mummy fails it! Silly mummy!

Then after all that I had to see the orthotist (how silly that the eye person and the foot person nearly have the same title), and she thought I was very clever too, and didn't need fancy shoes, which somewhat miffed mummy as the special shoes are free! My feet grow very fast! Mummy goes a funny colour every time we go to the shoe shop. I don't think she realises money grows on trees!

Finally on Mother's Day I decided to do some steps for mummy, she cried alot. Which was very silly, and as I upset her so much, I decided not to do it again until 2 weeks before my birthday, and then after that I walked nearly all the time! Mummy stopped crying then. We had to go and see my consultant in June, and she decided not to see me anymore, which is good, because I hate going back to the beepy rooms (neonatal unit)

We had a lovely summer holiday in August in Great Yarmouth, with my other Grandma and Grandad, and my three other cousins. I was very cheeky and nicknamed my older cousin Charlie. I called him Lola, everyone found it very funny.

In September mummy got rid of me for a couple of days a week. She took me to this huge room full of strange children and stranger adults and just left me. I hated it at first, and took my mucky every day. I used to cry and clutch to my mummy saying "don't go don't go". Mummy never listened and kept leaving me. She said it was called pre-school and it was to help my development. Hurrumph.

Then she confused me, by putting daddy, me and herself into another plane at the end of September and taking me to place called Rhodes. I loved it there, it had sunshine, and never rained. I ate lots of nice food, played in the pool and got lots of attention.

Then we came back, and mum kept putting me in that horrible building, but after a while, I started to like it, and now I love going to preschool.

We've been to London a couple of times this year, which has been very exciting. I learnt to sleep in a big boy bed whilst staying in a funny hotel in London with mummy. We got to go to a huge building, mummy said it was called Parliament. They had lovely green chairs, but it turns out you are not allowed to colour them in with pen. Mummy cleaned it quickly with a baby wipe, much to the amusement of our local MP, is there nothing those things can't do (baby wipes not politicians, I haven't worked out quite what they do yet)

It has been a very busy year, mummy says the best thing about this year is my talking, that I have got better and better, and am very very very very very clever!

I am looking forward to Farmer Christmas coming in his very special tractor, that daddy is taking to the car wash. I love going to the car wash, its very exciting. And we are going to a place called Germany for Christmas, and that should be fun. I haven't been there since I was little.

And now I am big!

2012 My Blogging Resolutions

2011-12-14T13:11:00.000Z

The blogging prompt this week on Britmums urges us to make some blogging resolutions for the coming year. Maybe resolutions made in mid-December are more likely to be kept than those made on New Years Eve. Who knows?

Earlier this week I published a round up of the year in review for my blog. It's been a really exciting year, and lots of fun, and I have learnt an incredibly amount about writing, working with the media, with charities and its been a year of personal discovery for me as well.

The first resolution I have is to consolidate, to keep doing what I am doing, but do it better. I tend to blog hard and fast, rather than spending ages over posts, and have to say, that the ones I have written straight from the heart get much better reception that those I have spent a long time over. I do have problems with attention to detail and I need to get better at the "boring" stuff, link checking, typing errors etc.

The second resolution is to work closely with the charities close to my heart - Bliss, PiggyBankKids, and Tommy's. Note these are in alphabetical order! I love sharing the work of these charities, as a lot of people don't know of their existence until they need them, or benefit from them.

The third resolution is somewhat out of my hands, but I would love some more radio and print media exposure in 2012. I love radio, and have really enjoyed going on BBC Radio Manchester and Radio 5 Live, and now that there is more national radio based in Manchester I am hoping for further opportunities in this area.

The fourth resolution is to deepen my writing on other platforms. I plan to do some more in depth pieces for A String of Pearls and also for Think Left. I am hoping for more opportunities to show case my writing.

I think this year I have realised just how much I enjoy blogging, and I can't wait to see how things evolve for Not Even A Bag of Sugar.

I am hoping to attend Britmums Live, work commitments permitting, and just waiting to see how things pan out in the New Year work wise. I so enjoyed Cybermummy, and I can't wait to meet new bloggers and meet up with new friends too.

The Guilt of the Preemie Mum

2011-12-13T09:00:00.000Z

Motherhood and guilt, it would seem, go hand in hand. If you type "mother guilt" into google as I just have there are reams and reams of articles about the guilt that comes with being the mother of a child.

Having a premature baby, however, can bring us into a whole different relm of guilt, because, in our minds, as mother's we have fundamentally failed the first rule of motherhood. "Keep your baby safe until its time to be born".

I do not think I have met a mother of a premature baby who has not felt, very keenly, this acute sense of guilt. "It is all my fault", "I am responsible for this". It is a very difficult emotion to deal with. Sometimes it can be reinforced by comments from doctors, nurses, midwives, family or passers by! Once you have had a baby you become public property and advice and comments come from all directions.

I recall a fellow mum of a premature baby seeking advice from her GP about her baby's reflux. And he said, somewhat off-hand "well its your fault for not keeping her in long enough". He did apologise, thankfully, and it wasn't until he discussed the issue with his wife, who yelled at him, that he realised quite how hurtful his comment had been. He had merely been matter-of-fact, that the reflux was severe as the baby had been premature, but hadn't realised that the way he said it was accusatory, and very unhelpful.

When I was towards the end of my NICU journey with Joseph I had copped a few comments from different sources, and was feeling very sorry for myself and talked to my favourite nurse about how guilty and how responsible I felt. One of the nurses sat and listened, and she gently said "I've only met one woman who could really say it was her fault. She had had a number of premature babies, and each time she'd pierced her membranes with a knitting needle, so unless you have done that, move on, it is not your fault".

What also helped me was meeting other mothers of premature babies. Would I say to one of my friends "this was your fault?" and the answer is a resounding no I certainly would not. I wouldn't say to a pre eclampsia mum "this was your fault" as it quite clearly is not. Pre eclampsia is a pretty indiscriminate finder of folk, thin, fat, normal weight.... None of us knew when we decided to get pregnant that this was our future, or any of the other complications that can cause prematurity.

On my travels I found this piece about mother guilt . The last point is just perfect, and I want any of you struggling with guilt to read this and change your self-talk.

Change "Guilt" to "Regret"
A simple semantics change could make a big difference. "Try substituting the world 'regret' for the feelings you now label 'guilt,'" Adams says. "Regret requires no expiation--simply the realization that you did the best your could in the situation..........."

I regret that I had pre eclampsia and that Joseph had such a tough start as a result, but I am no longer guilty.

This wasn't my fault, and it wasn't yours either.

The Year that Was at Not Even A Bag of Sugar

2011-12-12T15:09:00.001Z

It seems odd to be doing a round up now, as the end of the year seems miles away to me! However, it isn't, and with our trip to Germany looming, I am bound to be busy.

In January I signed up with Bloggymoms Blog Dare and blogged every day in January. I noticed my readership increased and it helped me find my voice, somewhat, as a blogger. I found that I got more comments and readers when I blogged about controversial topics, and found that people were really interested in some of the nitty gritty issues around premature birth and pregnancy complications, which surprised me somewhat.

I then neglected my blog for a couple of months to travel to Australia to see my parents. I decided that it was ridiculous stressing myself out, and things quickly returned to normal once I got home.

The amazing thing that happened in June was attending Cybermummy. I felt like a little sponge sitting and soaking up information, tips and making contacts. My favourite moment was asking at the "blogger activism" workshop "how would I go about blogging for say Tommy's" and a voice saying "they're over here!" I've enjoyed working for Tommy's on a few things this year, their pregnancy plan for a happy and healthy pregnancy and the premature baby guide, and look forward to deepening my association in 2012, and raising £1000 for their important work by running 10k in London in May.

My first notable mention in the press came following Cybermummy, in the Guardian no less. It was a quote from a blog post

"I didn't identify as a mummy blogger initially. I thought a mummy blogger blogged about the school run, or about long lunches with their mummy friends, or activities they do with their children." In fact, she writes: "I was struck by how many mummy bloggers have a similar background to me, mummies with kids with autism, with verbal dyspraxia, other mums with premature babies. Blogging seems to be a legitimate way of dealing with social isolation, with dealing with difference. We are the modern-day storytellers, and blogs tell our stories."

I felt really proud when I saw that had been included, and it made me realise that you just never know who is reading your blog. I always thought it was my sister who was the writer, and it made me feel that my writing deserves an audience too.

In August I was asked to do a guest post from the amazing e-zine A String of Pearls. I wrote a topical piece based on the riots in England, that shocked us all. I was amazed by the response my piece, The England They Don't Want You to See attracted. I have also written a post on my work for Bliss, and look forward to deepening my association with A String of Pearls next year.

September was one of the highlights of my year, I was asked to be involved in the media launch of Tommy's 5 point pregnancy plan, which was just amazing. I found it such an eye opener. I appeared on ITV's Daybreak. I was somewhat disappointed that I wasn't interviewed longer, and think it's a direct result of my mishandling that Christine and Adrian find themselves removed from this gig! (no not really)

I then took part in radio interviews for the BBC, the best being on the health panel on Radio 5 live with Sheelagh Fogarty. It was just amazing to be in the studio around a desk with well known people, and I felt really pleased with the performance.

The end of September saw the MAD blog awards. Not Even A Bag of Sugar had been nominated, and much to my surprise, was successful in being a finalist. I didn't win, that honour went to Clare from A Boy With Aspergers. Claire is an amazing blogger, and mum, and if you are going to lose to someone, it may as well be someone fabulous! And I have won two prizes on her blog this year! So thanks Clare!

I've been featured in the Bury Times this year, and also on the Daily Mail website. I rounded off the year talking on BBC Radio Manchester for Bliss about the cuts to neonatal services. Now more than ever I am passionate about this, my best mummy friend recently had to go to Liverpool to have her premature twins delivered as there was no room at the inn at our local hospital. Once it shuts, with the other closures, I think this will become all too common.

The ultimate highlight was our trip to Parliament in November. Never in my life did I think I would enter Westminster, that iconic building, with my little boy in his buggy! A low light was him drawing on an expensive looking green leather chair, however a quickly produced baby wipe removed all evidence.

It's been an amazing year for my blog and I look forward to a bright year ahead, which I will blog about tomorrow.

Supporting Mums of Poorly and Later Gestation Babies

2011-12-11T09:36:00.000Z

When Joseph was going through hospital, we were fairly unique within our Special Care Baby Unit. Joseph was the only sub 30 weeker for the most part, and by far the smallest baby. The first mum I befriended had an 8lb baby with complex internal problems. I quickly learnt that in medical terms, sometimes gestation means nothing. Any baby can be in trouble for all sorts of reasons. I saw just as many term babies come through the door as I did premature babies.

One of my favourite moments was when Joseph was in HDU there were three other babies. An extremely important specialist was brought in, his entourage were temporarily delayed at the desk, so he came into the room to determine which baby he had been brought in to see, I watched his eyes scan the room and he came directly to our incubator. Suddenly three junior doctors whooshed up to his side and said "oi, you leave our Joseph alone, he's fine, its this one you have come to see", he looked at this enormous baby and said "oh, well I wouldn't have picked that one". Whilst it was sort of funny, it worried me that even doctors can be guilty of assuming that the littlest is the poorliest.

I have noticed, particularly lately, some conversations that have disturbed me. Mums who have had very small babies in hospital for a long time criticising those who feel traumatised, though their babies were in just a short time. And this worries me. Surely as mothers who have been through difficult times we should be empathetic and understanding?

Length of stay is not always an indication of how poorly a baby is. In my previous job, a large part of my role was managing length of stay (usually of adults) but I learnt that things can delay discharge which whilst are medical in nature, are not severe. So for example Joseph's length of stay was 76 nights, he was critically ill for the first 25 of these. The rest of these days were Joseph learning to breathe, suck, maintain his temperature, all of which are important, but didn't make him poorly, just underdeveloped. Whilst not ready for discharge, he wasn't a "sick" baby.

But contrast this to a baby born at term, who perhaps was in foetal distress, delivered by ventouse, crashed at birth and needed to be resuscitated and then have 5 days in special care to receive treatment. Is that any less a traumatic experience for the mother, just because the stay happened to be 71 nights shorter than ours? Babies who need surgery often are in a much more critical condition than Joseph was, yet their stay is shorter. I think we need to completely get away from this concept of the longer a baby is in the poorlier they are.

Clearly there are babies who are in hospital a very long time, who are indeed, very poorly, and I wouldn't wish to minimise the trauma and stress these mothers go through either.

Often mums who have had a traumatic experience are worried about talking to me. "I feel bad even discussing it because your situation was so much worse." I never feel that way, in fact I felt and still feel very blessed. When I got to hospital that day, and was diagnosed and told Joseph would be born the following day, I knew exactly the path we would tread, before a doctor even came and spoke to me. I knew Joseph would be in at the very least until around his due date and anything else was a bonus. I knew he would be in ITU for about a month, then HDU for a month, then Special Care Nursery to finish him off before he would be ready.

Joseph had his "blip" around day 5, and was critical for a time, and whilst NEC is evil, it's very common and it is not unusual for babies like Joseph to either have NEC or conditions similar. For the rest of his stay his "complications" were very ordinary ones for which there was a clear treatment plan.

Contrast this to a mother who has reached term, goes into labour and then it all goes pear shaped. You expect to deliver a healthy baby, and get home within a few days. If it all goes wrong, its very distressing for all concerned, and that family are launched into the unknown.

I hate competitive parenting at the best of times, but I think sometimes those of us who have had premature babies can be just as bad as the term mummies comparing how brilliant their babies are!

I strongly believe that many term mums or mums of premature babies of later gestation, fail to get help and support because their experience isn't recognised, or its minimised. I do feel that as mothers, not just as mothers of very early premature babies, we have a responsibility, as much as we are able, to empathise and support all mums, equally, without judgement.

To me, the absolutely most traumatic part of our whole journey was being separated from my baby, not being able to be with him at birth, coupled with the fear that perhaps I may not be bringing a baby home. And surely, that unites all of us whether your baby is in the unit 7 hours, 7 days, 7 weeks or 76 days.

Visitors and the NICU

2011-12-09T09:00:00.000Z

I wanted to blog about this, as its something I am asked about a lot in various ways, usually something a long the lines of "my friend wants me to visit, but not see the babies". Sometimes this is personal preference sometimes it is unit policy. So let me tell you about our unit.

Our special care baby unit changed its rules halfway through our stay. The first element stayed the same throughout, and that is visiting times were 3pm - 4pm and 7pm-8pm daily, with very little room for flexibility. There was sound reason for this, babies need their rest, and often procedures were taking place, and consultations. In baby units everything takes place "in house", x rays, blood tests, minor surgical procedures take place within the unit, babies do not go out.

Initally you could have 2 visitors + 1 parent by the cotside, and you could "relay", so for example have 2 grandparents, and 2 aunts and then swap.

Under the new rules only one parent and one visitor were allowed with no swapping, so that made it very difficult for people with large families. For us it was no problem. So that's reason one, it may be that the mother and father don't want friends visiting, and to use their visiting slots for relatives.

The second thing is, it can be very difficult to manage visitors expectations and prepare them for the reality. Let me tell you a story about one of Corey's aunts. She really wanted to see Joseph in week 2. I hadn't really prepared her, because she had had a very early premature nephew an earlier gestation than Joseph, so incorrectly assumed she would be ok.

In our unit they used to do Joseph's line change at 3pm, I did warn the unit that we were coming at 3 and to do it at 2 or 4. Now a line change is relatively straight forward, two nurses would go through the notes from ward rounds, check the dosages, refresh and change any of Joseph's IV lines that needed it, and renew all the syringes. It's quite technical as 1ml out can be the difference between a therapeutic dose and a deadly one, so they used to draw all the blinds and have total silence, just their voices.

We walked in this day, and the nurses had just started they drew the blinds in front of us, my heart sank. Then I turned to see tears streaming down the aunties face "they're working on him, they're working on him". I explained it was just normal procedure, and apologised, suggested we go and have a cup of tea and come back. She wailed "they just tell you that, this is serious, he may not make it". And with that she decided to go. And I was stood there. Alone.

After that day I banned visitors. I lied, and said NICU didn't allow any, and that once he had stepped down perhaps they would relax their rules. We invited a few close friends later on, and the beauty is that these people had followed Joseph's journey on Facebook and were prepared somewhat for what they would see.

As a parent its hard dealing with a sick baby, and dealing with other people's emotions is sometimes more than we can bear. For me, Joseph was my normal, the only newborn I'd had a lot to do with, and I didn't have the ability to empathise at that time, I couldn't see beyond my own drama, and I don't apologise for that, it was needs must at the time. There are also very practical fears of cross infection too, the more people coming and going, the higher the likelihood of a baby catching something.

If you are asked to visit, either parents or the NICU I think its fine to take a gift for the baby, perhaps just a small one, saving a bigger one for their homecoming. Little soft teddies or blankets, or even muslin clothes, I used them for everything! Even swaddling blankets. One of my favourite gifts was from Jenni, who bought me lovely blue printed muslins.

A gift for the parents is always welcome, sweets, chocolate, snacks, homemade biscuits, magazines, it doesn't have to be lavish, but if you do want to go a bit lavish, Crabtree and Evelyn handcream, particularly La Source, never goes astray!

The Day You Were Born

2011-12-08T08:23:00.000Z

The personal blog prompt over at Britmums this week is all around birth, either telling the story of how we found out we were pregnant, sharing the news with our partner or our birth story. This blog is built on my birth story, and I've shared all this on my blog before.

What I think about often is how I will tell Joseph the story of his birth and his start in life on the NICU. This is one idea of how I might do it.

Dear Joseph,

You were born on a hot Friday on the 8th May. Most babies are in their mummy's tummy for 40 weeks or so, to grow, to learn how to suck and feed, to get ready for life in the outside world. Sometimes, for lots of reasons babies are born early.

I had become poorly, I had an illness called pre eclampsia. We had some tests and the doctor found out that you weren't growing anymore, so you had to be born.

Your daddy was there, and lots of doctors and nurses. They had to cut my tummy open, and pull you out. You were born upside down!

Because you were very small, and hadn't finished growing, you had to go with the doctors and nurses straight away into a special part of the hospital called the Special Care Baby Unit. You had to have tubes and wires to make sure that they could look after you properly. You had to be fed into your tummy with tubes, because you hadn't learnt to suck and swallow yet. You had to live in a plastic box called an incubator, to protect you from infection, to keep you warm, and to provide you with special air with extra oxygen.

Every day you got a little big bigger, and a little bit stronger. We were so proud of you. After a while, you moved into a different part of the unit, and we were allowed to cuddle you whenever we wanted to. My favourite sort of cuddles were "kangaroo care" and you loved these. I would pop you onto my chest and you would go to sleep. Every day we were excited to see you, I would sing to you, and read you stories.

After 10 weeks, you were strong enough, and big enough to come home with us, it was a very special day!

You made lots of special friends, and you are still friends with Max, Izzy, Kate and Emma who were all born too early as well.

Your birth was a little different to lots of other babies, but it was a very special time for your daddy and I, and we are so very proud of you.

Lots of love

Mummy

Breastmilk Fortifier - A NICU Mum's Perspective

2011-12-07T10:00:00.001Z

Like many expectant mothers, I had intended to breastfeed my baby. I thought I'd deliver naturally, baby be put on my chest for skin to skin, it would find my nipple, and we'd work at establishing breastfeeding.

Having a premature baby introduces you into a whole new world of infant feeding. Joseph was fed through his umbilicus to start with, then after a few days a long line was inserted to feed him directly into his stomach. Joseph was fed a special non formula feed, known as Total Parental Nutrition.

All the while, I pumped my breast milk and stored it, I knew at some point he would be weaned off TPN and onto milk. Milk was used for mouth cares, and for comfort.

At 24 days the long line was removed and Joseph moved on to expressed breast milk via nasogastric tube. After a couple of weeks I was approached by a nurse, stating that due to Joseph's poor growth, his milk would be fortified. I burst into tears. It hadn't been explained adequately, I felt they were adding "poison" to my milk. I felt it was a criticism of me personally. Our unit didn't have many very low birthweight babies, so didn't have fact sheets, or the training to explain to me the rationale, and indeed what this stuff actually is.

The nurse kept saying "its just extra calories", but I wanted to know where those extra calories came from, and no one could tell me.

So just what is breast milk fortifier and why is it used? Breast milk fortifiers are also known as HMF or human milk fortifier. But you must be aware, they are not, for the main part, made from human milk. They are usually made from cow's milk. They contain additional proteins, electrolytes and calories, and are added to human milk to increase its strength. A company in the US does make a human derived version but it is astronomically expensive.

Growth isn't just weight + length. Often we forget that when we talk about preemie growth we're talking about internal organs, the brain, they body systems. If there are not sufficient calories then this internal growth can suffer, and the baby can have very severe problems.

It has been proven again and again that breastmilk is best for premature babies, however it has also been proven that in some circumstances, it is not sufficient on its own and a little help is required, through the use of fortification. In our PCT and I think throughout the UK, it is common practice to stop fortification before discharge, although in some circumstances I am sure it continues.

I do think that it should be a choice, and it should be explained, particularly if you have a family history of lactose or dairy intolerance, all avenues should be explored. I do also think that it is not necessary in all cases, however on our NICU I know it was carefully assessed and during our stay Joseph was the only baby who had fortified milk.

Bliss information on fortifiers

My Best Posts

2011-12-06T09:00:00.000Z

This week the Britmums blog prompt is What Are Your Best Posts This Year?

I have to say, blog wise, I've had a stonking year. Although in blog world I may not get the views and publicity that others get, in my own little way I've made a big impact in ways that matter this year. I have beautifully loyal readers who comment, and support me in many ways.

Here are my top 5 posts.

Being Mum to a Premature Baby - This post was written hastily one afternoon, after reading a few things on Facebook. I paused for a minute about how things are different for us that have had early babies and been with them on NICU. This post has received more shares, and feedback than any of my others, and I'm really proud of it.

Raising an Only Child - I've really struggled this year with the decision not to have any more children. This decision was made very early on, when Joseph was still in hospital, with my husband having a vasectomy when Joseph was six months old. Absolutely the right decision for us, but one that I had never had time to come to terms with. This post is regularly found by people searching on Google, and I am so pleased that I've written about this, and hopefully, helped others.

Reasons not to Have Another Baby - It never ceases to amaze me that my miserable posts get the most interaction! This post was another one during my struggles, and was very well received, and I know it helped others too. I am really pleased that I have taken the step to blog about the harder side of my life this year, and I know its helped me. Sometimes I come across as so happy and positive, which I am, but sometimes to my own detriment. Sometimes I need to reach out and ask for help.

From RAGS to Riches - Following some of the other posts where I was struggling, I decided to go and see the GP to ask for counselling, she was awful, and I came home feeling so angry, and resentful. I have since discovered that she wrote on her notes "has asked for counselling, lists too full, will review in three weeks". And she never ever did. So the referral wasn't made. Fortunately I have all of you to look after me and be my therapist!

Having a Premature Baby - It's Not All Bad - This was a lighthearted post with a lot of contributors, it's one that is still read often, and shared, unfortunately all the feedback and shares were on my personal facebook page not on here!

I hope you've enjoyed this recap, I look forward to doing a further round up of a year at Not Even A Bag of Sugar later in the month.

Enough. Enough is Enough

2011-12-05T09:00:00.002Z

One of my Facebook friends shared this incredibly powerful video.

Watch it first, please.

Watching this I had tears streaming down my face. I am Jonah. Ok I am not gay, or a teenage boy, but it started when I was 6, my teachers called it teasing.

My nickname? "Spaz" Because I was sent to a special school because I couldn't catch a ball or run like the other kids. It was only for a day a week, but it was enough. I was singled out. I only went for a year. But the damage was done. I was marked.

It was more than name calling. It was physical, I was hit, I was punched. I was ostracised. My school bag was bombed with paint, my lunch was stolen more times than I care to remember. I was left out of games, out of school activities.

I became bookish. Surely a "spaz" is stupid, so I set about learning, and trying to be the best I could be. That made it worse.

Kids introduced me to new kids as spaz. And you know what, in grade eight it got a whole lot worse.

Boys start being driven by hormones, the bullying took a sexual edge, I was completely ill equipped to deal with it. I retreated further into myself. I was scared.

By the time I got to the end of grade ten, I'd had enough. I was up to the back teeth of being scared, or being intimidated. I found my voice. I found my humour. I stood up to them. I won.

I have concluded that the main reasons I was bullied was because I was small, not just in stature but in personality. I didn't "need" them, I had my close friends, and I had my books, and my inner resources I didn't need those people in my life.

And looking back now, I am grateful for that experience, as it built my character and shaped me.

However, I am one of the lucky ones. I survived. I thrived. Bullying is a horrendous experience. Looking at Jonah I don't think its entirely about his sexual orientation. He is bright, he is resourceful, therefore he is a target.

Bullying now scares me more than ever. At least when I was a teenager I could go home, shut the door and I was in my sanctuary. Now its not like that, bullying can break through into our sanctuary via phones and the internet.

And it has to stop.

Enough is enough.

I Want A Hippopotamus for Christmas

2011-12-04T10:00:00.003Z

I missed the blog prompt last week on Britmums, so thought I would do it today for your viewing pleasure. The prompt is "All I Want For Christmas..."

I posted earlier this week about being a bit bah humbug this year. To be honest financially we are still very tight, my work has gone quiet for Christmas, so we are being frugal, which is fine by me. Joseph has plenty to open this year, and that's my main concern. We are not giving gifts to each other this year.

My favourite Christmas song is the title of my post. I love this whimsical song, and it always makes me smile.

So if you happen to see one in your travels, send a hippo my way!

However in all seriousness here are my Christmas wishes.

1. Restraint to eat sensibly and keep up with the exercise. We will be in Germany for Christmas this year, where restrained eating is not easy at the best of times, and with my in laws, who are always generous with the food, and the drink!

2. A great pair of running shoes and some decent tracksuit bottoms.

3. A Richmond Tigers t-shirt, and Dear Santa, if you can help Richmond in the pre-season that would be ace!

4. A return ticket for 3 to Australia.

5. A kiss and a cuddle from my 2 favourite men!

6. And a serious one, for all the mums, dads, grandparents and siblings with babies in special care this Christmas to have a blessed, and calm day with their beautiful babies.

What do you want down your chimney this year?

My Ten Parenting Rules*

2011-12-03T12:35:00.000Z

1. Do not overthink children's television. Your toddler does not care than Makka Pakka only comes up to Upsy Daisy's knee, that the Ninky Nonk and Pinky Ponk appear to have no driver or pilot, that the Tomliboos door is far too small for the house, so why should you? No good can come of rationalising In The Night Garden.

2. There is a time for chocolate buttons. Whilst I am not advocating bribing toddlers with chocolate on a regular basis, to get one to sit still long enough for a haircut, or to encourage the taking of medicine, sometimes a mama gotta do what a mama gotta do.

3. There is a time for children's television. It's carefully designed, it's on all day, and on a wet, miserable day, there's only so much play dough and drawing a child can do.

4. Indoor play areas are a necessary evil in Britian. Don't go looking for dirt, or worry about the food choices, lighen up!

5. Think really hard before you criticise another parent, who is just doing the best they can.

6. Toddlerhood is incredibly traumatic, that's why people are so judgemental in supermarkets - they have completely forgotten that they once own a toddler terrorist too, Post Toddler Amnesia. They fantasise that "back in their day" their daughters wore crinoline frocks, their sons wore sailor suits, and they were perfectly behaved treasures. They are wrong. Don't take it on board.

7. Nothing is as difficult as you may imagine, I've done long plane trips and train trips, and the thought is always worse than the reality.

8. You can fight the food fads or you can just accept that the only fish you will be getting inside your toddler is in the shape of a finger. And that's ok.

9. A child cannot be ruined by too many cuddles, kisses or stories, its a lack of these things that ruin a child.

10. It's ok to ask for help, to have time out, to admit that sometimes you are not coping. Support is there, sometimes from the unlikeliest of sources.

Health Visitors and My Premature Baby - Might Be a Rant

2011-12-02T09:00:00.007Z

When Joseph was just a week old a little slip appeared through our letter box, announcing that our Health Visitor would be coming to see myself and Joseph at home the following week. I frowned in confusion. He wouldn't be home. Oh well, I thought, perhaps they mean just me. I thought about it some more and a couple of days before the visit rang to let them know that Joseph was born 13 weeks early and certainly would not be home at 2 weeks old. There was no answer, just a machine so I left a message.

I got a phone call about 30 minutes before the alotted visit, the Health Visitor wanted to know whether she should still visit. "Um yes! I have missed my hospital visit with Joseph to see you". The first thing she said when she arrived was "I know nothing about very early babies", so I asked for someone else, she said no one had much experience at all and I may as well stick with her.

Well, at least I wasn't disappointed. Once Joseph was finally discharged we had another visit, and then that was it. My only input was when I took Joseph to weigh ins. Like most mothers, I had times where I left weigh ins in tears. "What are you doing wrong? Why has Joseph only gained this much and not that much?" etc etc. I learnt to be thick skinned, and to make sure I went at a time when I could have a good moan with other mums afterwards.

Then, at 6 months actual we were asked to take Joseph for his 6 month development check. I rang and asked for it at 6 months corrected. They argued "oh we don't see much difference with premature babies" they said. "I'm sorry Joseph was 13 weeks early, he's going to fail if you do it now", I managed to win that one, he still failed at 9 months old, for not being able to sit.

With weaning, my Health Visitor had no idea, she wanted me to wait til 6 months corrected even though the expert literature advises weaning on actual not corrected age. It was just so confusing. I am actually still waiting for her to visit, she was going to come and help me with weaning and give me advice and support. I guess that ship has sailed!

And now, 2 and a half years on, it's happened again. I requested a 2 year development check, which is pretty standard, they are so busy they didn't do it until 2 and a half, just a few weeks ago. Again, he has failed, this time for walking, the Health Visitor was disappointed with his walking, his gait is not what she would expect in a 2 and a half year old. She said he needed appliances, exercises and basically implied I had been neglectful by not pusing harder earlier.

I just feel like banging my head in frustration. Joseph is not a normal 2 and a half year old. Well, he is a normal 2 and a half year old, he loves the Octonauts, Thomas the Tank Engine and dinosaurs. He loves to eat gingerbread and chicken nuggets and chips and couldn't give a hoot about vegetables. He throws tantrums, the next minute he hugs and kisses you, so yes he is a normal run of the mill toddler.

But Joseph was born at 27 weeks. He will have some delay, it's no surprise to me, and I don't think it should be to a Health Visitor. To put her mind at rest, I agreed to take Joseph for a follow up at orthotics yesterday.

And guess what, Joseph walks funny as he has only been walking 6 months, no action required.

Sigh.

I just feel disappointed. When Joseph came home I was terrified, I had no idea what I was doing, and was looking forward to the input of the Health Visitors, and have been very disappointed. The team want me to go fortnightly for weigh ins so that they can keep an eye on us, and really, I wonder whether I should just be non compliant and see what happens.

I'd love to hear your stories, especially positive ones!

Christmas is Coming......Bah humbug

2011-12-01T08:00:00.000Z

I have a giant fit of the scrooges this year! We are travelling to Germany for Christmas so we're not decorating the house, my mother in law is cooking the cakes and puddings so no smells of dried fruit and spices are permeating the house. We're only buying for Joseph, and his presents are bought. Money is tight again this year, I've been clever with Tesco points and nearly new sales to try and maximise our funds.

I've been royally told off for getting song words wrong, by my increasingly stroppy 2 year old. It's not "twinkle twinkle little star" anymore, its "twinkle twinkle Christmas star". Can't believe nursery have changed to Christmas versions of everything already. Not even "5 little monkeys" is safe. Nope, its 5 little snowmen jumping on the sled. Just wrong. The decorations are up and Joseph is excited already. he just can't wait for "Farmer Christmas" to come, on his tractor maybe?

I dunno if its just ageing, but it all seems so.....crass. I'm not a card carrying Evangelical Christian, but where is Jesus in all this? It appears to me that he's disappeared in a see of cynical advertising, tinsel and pressure.

Our first Christmas I felt immense pressure. I was a new mum, I was still poorly with PTSD, I was over anxious about bugs, about Joseph being overhandled, it was all too much. My husband's family hadn't seen Joseph since he was little, all the extended family were there, it was just too much to bear, and all the "dressings" of Christmas were a welcome distraction. Last year we had a lovely, intimate Christmas with good friends, which was just lovely.

I am sure I will get into the spirit of it, and I think the top and bottom of it is, I am a bit homesick. We've been spoiled, every year since Joseph has been born I've been able to get home shortly after Christmas, and it won't happen for a long time now, unless something amazing happens.

Please, help me find soe Christmas spirit!

Jake's Story Part 2

2011-11-30T09:00:00.020Z

Mandy's story continues from yesterday....

Jake at 1 week old

At LGI the following morning we both felt sick as we waited for the consultant to see us. Finally we were called in to the room and I was in tears before I’d even got onto the bed to be scanned. We explained what we had been told and then the scan began. Amazingly the fluid levels had risen slightly. Afterwards we were told that there was now a very small but significant chance that we could have a healthy baby. Dean mentioned 50% but the consultant immediately said no it was much lower than that but there was a small chance. On hearing this our decision was made. We would continue with the pregnancy, I would be on bed rest for the remainder of the time and we would return to Pontefract the following day to put a care plan in place.

We left Leeds feeling slightly more positive although we knew we had a testing time ahead of us. At Pontefract the following day it was decided that I would attend the day unit twice weekly for blood tests and swabs to screen for infection. I would also have fortnightly scans and consultant appointments.

The next several weeks were one huge long scare. A week after making all these decisions I began to bleed and was admitted to hospital. We were shown around SCBU, given steroids and survival rates for a 24 week baby. After 4 days with no contractions I returned home only to be readmitted several times in the following weeks. By now I was losing fluid almost as fast as it was being produced and it was nearly always mixed with blood. I was on a constant countdown to 28 weeks as this is the stage that our SCBU accepts premmies. Before this time and I would need to be transferred.

Once I reached 28 weeks I relaxed a little but when I was 29+2 I woke in the middle of the night with regular contractions. I rang labour ward and was told to get there immediately with my bag as SCBU was full and I would need to be transferred if I was in labour. On examination they found my cervix was long still and not dilated. The contractions continued though for a couple of days so I was kept in as a precautionary measure.

On the Saturday I was allowed home. I was very uncomfortable and finding it difficult to walk properly. I put this down to the fact that there was no fluid protecting the baby and that meant it would be bumping against me. The contractions continued and became even more regular the following day. We were going to have dinner with my Mum and Dad at their house. It was a treat to be going to lie on a different sofa for a change! When there the contractions were 10 minutes apart but as the hospital hadn’t been worried the day before I decided not to worry either. Whilst eating dinner they became more regular to the stage where they were every 3 minutes. At this stage my Mum insisted we went straight back to hospital.

On arriving in labour ward I was given a speculum examination. This is the only type of examination they will do if your waters have gone to avoid infection. The doctor said I was in labour and at least 2-3 cm dilated although he couldn’t see fully. We were both terrified. We were sure it would be another false alarm ? it was much too early for our baby to be born. The next bit of bad news was that SCBU was still full and they would need to find a cot and transfer us ASAP. This couldn’t be done immediately though as I was contracting too much and had to be given drugs to slow the labour down. I was also given antibiotics in case an infection had set in. Dean was rushing around phoning people. We didn’t even have my bag with us as we’d come straight from my parent’s house. My Mum and Dad arrived with my bag at roughly the same time as the ambulance. We were relieved to hear there was a cot at St. James only 20 miles away. We were transferred with flashing lights and sirens in an impressive 19 minutes!

I was devastated that we’d had to be transferred. After spending several weeks in our local hospital I felt like I knew the midwives and was confident that I would be well looked after. Arriving in a strange hospital when you’re in premature labour is an extremely frightening experience. The first midwife looking after us did little to ease this. She just kept asking why I wasn’t asleep and gave me 2 co-codamol for the pain! I explained that I was in a lot of pain and it was only much later that I got an injection of morphine. Although this helped she was still insistent that I should be asleep. I kept saying the pains were worse and more regular but she didn’t examine me or do much to ease my worries. I wasn’t even offered gas and air!

At 7.30 am the nurses handed over and the new midwife came in to see me. I told her I was in a lot of pain now and felt that I needed to be examined. She said the doctors would do this when they did their rounds at 9am. At 7.50 am I said I could wait no longer and needed to push so she gave in and finally examined me. On doing so she said the head was right there and the baby would be born very quickly. However, I still couldn’t push as she hadn’t set up and she needed to call the paediatric crash team. This all happened very quickly and with 3 pushes our beautiful son was born at 8.06am.

First cuddle

It was only when he was born that the fear closed in on me. What if our baby had no lung tissue as we had been warned? What if he didn’t live? Then we heard a cry. I know everyone says that is the best sound in the world but it really was for us. After all this worry our baby was here and alive! The paediatricians quickly showed us Jacob Lewis before whisking him away to NICU.

He was in hospital for 52 days and is now 4 years old and is at school. The only ongoing issue with his health is asthma. He really is a miracle ... I hope someone gets some inspiration from our story.

Jake's Story - Part 1

2011-11-29T09:00:00.002Z

My friend Mandy submitted this story to me for World Prematurity Day. The response I had was over- whelming so I decided I would post this story at the end of November to mark the end of Prematurity Month. Here Mandy tells the story of her pregnancy, and the birth of her son will be in part 2 tomorrow

Our story of prematurity is all down to PROM (premature rupture of membranes) I have chosen to focus on the pregnancy rather than our journey through NICU.

We don't know when Prom happened to us - I have guessed at 17 weeks as that is the time the doctors presumed it happened. It could have been much earlier however we just know it was between 12 and 18 weeks. I hope this story helps someone going through this horrendous time. Please feel free to contact me. Apologies for the length of the story but I know from reading others that details are important when you are in this position ...

On December 13th 2006 I found out I was pregnant. After several months of trying to conceive we were absolutely delighted. The first few months of my pregnancy were uneventful, just the normal morning sickness and tiredness. When I reached 18 weeks I received a phone call which was the start of the most terrifying time of our lives. It was a nurse to say our triple test results indicated that our baby could have spina bifida and we would need a scan later that week to find out. That Friday we went to Pontefract for the scan and after about 20 minutes of scanning the radiologist went out the room. When she came back she said that we needed to go and see a midwife downstairs in the day unit. I was now beside myself with emotion although when we got downstairs the news was fairly inconclusive. The midwife said that the scan showed the baby had hardly any amniotic fluid surrounding it and they could not see clearly so we needed to be referred to a specialist in Leeds. The next appointment was the following Tuesday. After a very sleepless weekend spent reading up about low amniotic fluid we went to Leeds feeling very pessimistic. All the internet sites we looked at gave a very poor prognosis for a baby in low levels of amniotic fluid so early in pregnancy. I read that a way to help raise these levels was to drink as much water as possible. In our mind this was the only way I could help this unborn baby we already loved so much survive. So for the remainder of the pregnancy I drank between 3 and 5 litres of water a day.

Jake at 12 weeks

At LGI the consultant scanned me and the news was not as bad as we were expecting. Our baby looked perfectly fine to her (no spina bifida) but she could still not see very clearly as the fluid levels were still low. She was not worried about this, however, and said they would keep a close eye on me but they thought the outlook was not too bad. We left feeling quite positive with our appointment booked in two weeks. In these two weeks we got back to some normality and, as a teacher, I returned to work. I had taken the few days off between the last two scans as I didn’t feel emotionally able to cope with work.

When the day arrived for the next scan we were quite relaxed and we decided that my husband didn’t need to attend this scan as he was using up his holiday allowance extremely quickly! Accompanied by my Mother in Law I went to Leeds on the train and back to LGI. As soon as the consultant began the scan I knew something wasn’t right, the doctors mumbled between themselves before finally telling me there was hardly any fluid again around the baby and this was very bad news. We were told that there were three possible causes of low fluid levels and they needed to find out which one it was. We were told that the first thing they needed to do was a chorionic virus sampling (CVS) test to rule out a genetic problem with the baby. Earlier in the pregnancy I had been opposed to any such testing but now it seemed like a necessity. I rang Dean (my husband) in tears and we decided I would have the CVS test done there and then. I was terrified that our baby would be harmed and we were very lucky that the procedure was uneventful and the following day the results came back showing there were no genetic problems. Another cause of low AFI (fluid levels) could be lack of kidney function or bladder problems but again the scan had shown this not to be the case.

Jake at 18 weeks

We now had a two week wait until we saw a consultant. In this time we were both confused as to how I could have low fluid levels as the only remaining possible cause was premature rupture of membranes (PROM). We were sure this wasn’t the case as I would have known wouldn’t I? The day finally arrived for the consultant appointment at Pontefract. We naively presumed that this would be a very quick appointment as he had never scanned me and did not really know our history. We guessed (wrongly) that he would just say the consultant in Leeds at the next day’s appointment would give us details and put a care plan in place. So considering this we decided Dean should go to work that day and have the next day off for the important appointment. This was a bad decision, which we both regret now. The consultant that day absolutely devastated me when he told me the chances of us having a healthy baby were very slim and the best option may be a termination. At this stage I was 23 weeks pregnant and our baby was moving around. He also said that I was now given the diagnosis of PROM and as such I was at a high risk of contracting a serious virus, which could harm the baby and make me infertile. I asked as many questions as I could think of through my tears and my Mum was a fantastic support. The consultant said I could go home to ring Dean and make my decision but they would get me into labour ward that day to deliver if I decided upon a termination. I was adamant that I would never terminate this precious baby but the prognosis for our baby was so bleak. We were told that he would definitely be premature and probably within the next week or two, he would probably have pulmonary hypoplasia and he would probably have many limb abnormalities due to being so squashed.

Devastated at the news I went home. I rang Dean straight away. All I could say was “they want us to terminate but I’m not, they have said the baby will probably die.” Dean came straight home, equally distraught. When he got home my Mum explained everything that had been said. At this stage our opinions began to differ for the first time. Dean said he had to think of me and if I was at risk of contracting a virus, which would not only make me infertile but could threaten my life he had to prioritise me. These factors never crossed my mind. This baby was my priority and there was no chance that I was having a termination. Dean was very opposed to terminating the pregnancy but felt like he was stuck in the middle and did not know what to do. We spent a long afternoon and evening discussing our options, crying and researching on the internet. In the end we decided we would wait to see what happened at the scan the next day and get a second opinion, thank goodness we did.

Jake at 19 weeks

Mandy's story continues tomorrow.....

Weekends on NICU

2011-11-28T16:46:00.000Z

I got involved in a bit of a discussion about this article today on the BBC news website. In a nutshell it says statistics show that there is a spike in death rates at the weekend in NHS hospitals. I would love to know if such figures are available for NICU but doubt there are. The main reason for this is that there continues to be a culture of "normal hours of work" for senior consultants, Monday - Friday 9-5.

I find this baffling and somewhat infuriating, that younger, newly qualified doctors, are supposed to do all the difficult hours, with little experience, and often little sleep, and few opportunities for quality supervision, whilst the consultant who has "done their time" can work "normal hours", medicine just isn't like that.

I remember always feeling nervous on Friday afternoons, when the unit was slightly less staffed, and there were less experienced doctors around. I always hated it when blood tests would come back on a Friday and Joseph would need a transfusion, or new antibiotics, I could just see things going pear shaped when there wasn't anyone experienced around to sort it out.

And indeed, I recall a weekend where things were dreadful (and the consultant came in immediately I might add) but there weren't the additional support staff around and some facilities were closed, and I could see the registrar becoming more and more stressed. On this weekend it was all hands on deck, helping one another out.

And one of the doctors on Twitter suggested that consolidating services in large hospitals is the answer, instead of having lots of small units dotted about, and that the problem is that "we the public" see closures of units and consolidation as "cuts" rather than improvements.

I do accept consolidation and modernisation is necessary to a degree, and our local hospital has been a victim of this, and the unit where Joseph was born and raised will be closed. His (@DrGrumble) feeling is that in larger units this will change, and there will be more experienced staff on duty at unsociable times, which I truly hope is the case. However I have some serious concerns about this "bigger is better" philosophy and wonder if its truly what will happen. I guess for our area we will only know once it starts unfolding.

However, weekends in NICU wasn't all bad. Often times I'd be given more freedom to get Joseph in and out of his incubator on my own. I would get "forgotten" about and Joseph would have longer kangaroo cuddles. An obvious benefit of weekends was that my husband was around, and we could tend to Joseph's needs together, and have time out together, I wouldn't have to sit on the Kylie Hodges memorial bench, outside the nurses quarters!

Every weekend I still spend a minute or so reminiscing about our time on the unit, and the excitement of driving up together to see "our magic boy".