Funny Things He Says - Conversations with Joseph

About six months ago, Joseph's nursery expressed concern at his speech. They were concerned he wasn't speaking in sentences and wasn't expressing his thoughts and emotions clearly. I was left scratching my head, as the developmental milestone is that they be forming 2 word sentences together and have a vocabularly of 50-200 words, which he far exceeded. I dutifully toddled off to the Health Visitor for a review, where Joseph proceeded to point to pictures. "That is a paintbrush for painting a picture", "That is a fireman with his fire engine, he is going to put out a fire".  Personally I think they got his age wrong. Any way, no matter as now, at almost 3 Joseph's speech is wonderful.

One thing that makes us laugh is that Joseph speaks very well, but still throws in the occasional pet name. My favourite is when I go to help him with a game or project. One he's had enough of me, he yells "mum, go back to the cannerpoo and leave me alone!" Cannerpoo being Joseph for computer.

Sometimes if Joseph really wants something, he'll look at you with big eyes and say "mummy I want and need" so this morning it was a straw for his milk, "mummy I want and need a straw for my milk, please". It makes his request that little bit more compelling I find.

A really funny thing he says, that I have no idea where it comes from, is if he wants you to play with something he grabs the item, gives it to you and says "welcome to". For example he'll thrust a car at you and say "welcome to the broom broom broom". The other morning, whilst attempting to have a semi-relaxing bath a small boy ran in, threw a small plastic toy into the bath shouting "welcome to the lobster". Ok.......

When daddy returns home from work of an evening, Joseph bounds up with a big grin and says "Daddy, did you have a lovely time?" He's normally greeted with "oh yes of course I did".

I have been starting to explain to Joseph more about his birth, and what it was like. He has started asking for a brother or sister, which is difficult at times. We watched this wonderful programme, the Incubator together on Friday. I was surprised how much he understood and was fascinated with watching the babies in the hospital and he seemed to relate to it, afterall he has seen a lot of pictures of him as a neonate, and has a little board of baby photos in his room.

In fact whilst writing this on a busy Monday morning, Joseph came to see what I was up to and to play with YouTube, his latest fascination. When I explained I was busy he said "calm down mum and let me watch my cannerpoo".

I love my clever little boy, and I am so proud of his speech. He may not be able to jump, but he can read me a story from memory, and keep me entertained all day!

Just a reminder than on A String of Pearls there are two giveaways running. 
Name the Doll Giveaway   
Paypal $250 Giveaway - International

Having an Only Child - Please Don't Tell Me

I am linking this post to Dr Bron Speaks Pick a Post linky. Come and join!

 When I started my blog, it was a place for just to rant, and share experiences, as its grown I sometimes don't let myself go in the same way I did. But as I blogged about earlier in the week, I am finding the run up to Joseph's birthday a bit difficult. If your not a regular reader just to fill you in, I had a rare form of pre eclampsia, that meant Joseph had to be delivered at 27 weeks, in order to save my life, and his. He wasn't "just" early. We did a lot of soul searching, and saw a very good consultant and made the decision not to have anymore children. It's been tough and I want to share my feelings in the hope it helps someone else.

I am finding that I am getting more and more questions about when we are having the next one. I am really surprised just how strong some people feel about it, no one close, all our close family understand. 

Please don't tell me I'm selfish The decision not to have more kids is the least selfish decision we have ever made. Both my husband and myself come from two children families, growing up with a sibling. We always assumed we would have two children. This decision is about Joseph. He needs his mum and dad, he needs a strong family unit. We're not guaranteed to have the same happy outcome again.

Please don't tell me pre eclampsia won't happen again There's a huge misconception that if you get pre eclampsia again, and get pregnant a second time with the same man, it won't happen again. This, quite frankly, is bullshit. Yes, some women don't get it again, this is true, but the biggest risk factor for pre eclampsia is having it in a previous pregnancy. There is a big difference between the late onset pre eclampsia and the swift early onset I had. A lot of people who say this also say "well if you lose weight you'll be fine", and that just isn't true either.

Please don't tell me I'll be monitored closely I was monitored closely in my pregnancy with Joseph. I was on daily monitoring from 24 weeks. It doesn't get much closer than that, apart from hospital bed rest, and what would I do with Joseph. (Please don't tell me to send him to the grandparents!) The only cure for pre eclampsia is delivering the baby, there is nothing else, all monitoring will do is help me have a well-timed delivery.Our specialist estimates we'll get to 30 weeks, I'm not doing that again.

Please don't tell me to be grateful for what I have I don't need reminding. I am immensely grateful for my clever, funny, healthy little boy, he's wonderful. I just would have liked him to grow up with a sibling.

Please don't tell me that there are people in the world who can't have children Infertility is heart wrenching, painful, horrible, and I feel sad for those who are living that life. It was a life I lived for ten years too. Being made to feel guilty because I feel sad that I can't have more children only makes me feel shittier than I already do. I think I am entitled to grieve and have support to do so.

Please don't tell me to foster or adopt At the moment we're not really eligible for either. Adoption is something that we would love to do, but there are so many people out there who don't have any children of their own. I would never want to adopt a baby, as at least I have had one, and there are some wonderful people who would make brilliant parents, and I want them to have a chance to look after and raise a baby. An older child will only be an option once Joseph is older.

Most of the time I am fine, and I can see positives at raising an only child, the greatest of which is we can invest all our energy and resources in Joseph.

But never having another pregnancy? Never carrying another baby? Not having a chance to find out what labour is like? It hurts. 

Funky Kitsch - Fabulous Fabrics for your Family

Sorry, a name like Funky Kitsch had to have a kitsch headline! I love crafting and sewing. When I moved to the UK I felt a bit bereft that I no longer had a Spotlight or a Lincraft to go and shop in. I found it really hard to source fabrics that I loved. I soon discovered that the best way to go was online shopping.

Imagine my delight when I discovered a friend of mine that I had met through Bliss had opened her own online fabric store, Funky Kitsch. The fabrics are absolutely gorgeous. The site is easy to navigate with the fabrics split into interlock (knitted, stretch) and cotton (woven).

Lisa from Funky Kitsch very kindly made up a top for Joseph to wear in Ocean by Znok.

The fabric is really durable yet soft, and the print is so vibrant! I have to show you this, I didn't know which fabric Lisa had chosen, and I went to buy some trainers the other day for Joseph and look what I chose!

Couldn't have matched it better I don't think!

I really love the 100% cottons, and adore the Michael Miller prints.

So do yourself a favour and have a look at Funky Kitsch.

Funky Kitsch sewed me a top to try for Joseph, no other payment received for this post.

Our song

I have been tagged in the Our Song meme by Insomniac Mummy.

Mr Bag of Sugar and I met on the 90 bus, which is sadly no longer with us. This bus meandered its way from Stubbins to Manchester, the journey was about an hour, long enough to get to know someone! We talked for a year before we started dating, which swiftly moved to a period of engagement. We married in September 2008 and of course, I gave birth to Joseph in May 2009. I am so glad we had that long year of chatting, as things moved very swiftly on!

Neither of us are particularly sentimental. We both like similar types of music, our first gig together was Kasabian. We like it reasonably loud, quite political, soppy love songs just aren't us. There aren't even many pictures of us together!

Our second gig was to Van Morrison. It was a lovely, intimate concert at the Bridgewater Hall in Manchester. Suddenly it clicked, and we decided on our first dance song, Van Morrison's Bright Side of the Road, a happy little number, not overly soppy. So I guess that is Our Song.

I am tagging the lovely Katherine from Mummy Pinkwellies , Angela from This is Life and Carie from Space for the Butterflies.

Bliss Buggy Push

A friend posted this on Facebook, spotted at a bus stop in London. It immediately brought tears to my eyes. So simple, yet it says it all. Please read to learn more about Bliss and a simple way you can help.

Having a premature baby turned our world upside down. It altered everything, all my expectations of parenthood, it made me question everything I held close, and I learnt for the first time what true fear is.

Bliss were a lifeline for me in that time. The fact there was a charitable organsiation set up to help parents like me gave me enormous comfort. The message board was a lifeline at times, and an added bonus, I have made lifelong friends who just "get it". I cannot tell you enough just what Bliss means to me.

So what do Bliss do to help parents like me? As I see it there are three main functions of Bliss. Firstly Bliss are there in a practical way to help parents. They give information and support through literature and peer support. You know those Bounty packs you get when you have a baby? We have our own Bliss parent packs with specific information for parents who have had a baby in NICU.

Bliss second function is to help fund research. I have blogged recently about the Honey Dressings Project , this is just one of a number of projects taking place.

The third, and arguably most important, is campaigning. The NHS is under extreme pressure to be all things to all patients. Babies don't have a voice. Bliss gives babies a voice.

All this, of course, costs money. I want to tell you about a simple way you can help Bliss. Push a buggy. If you can get to London the flagship buggy push is happening at Brockwell Park on the 16th June.

There are other pushes happening around the country and we're planning a Bury push in July. If you want to meet me, and the star of my blog, Joseph keep an eye out for details.

Birthdays, Milestones and Memories

These days, for the most part, I don't really think of Joseph's time in hospital, or even that he was premature. It bubbles underneath the surface, and at times comes to mind if I need it. "Oh, Joseph seems a little small" "Joseph doesn't run like the other kids", and its there, in his defence. But, quite often it's all in a box, neatly packaged up.

In the lead up to Joseph's first birthday I played the game....."this time last year". It was horrendous but I couldn't stop it, reliving every moment, every conversation, every sight and smell. I could remember conversations like they were yesterday. And that's trauma. In times of trauma and stress your senses do that to protect you. The inability to turn that off can become post traumatic stress disorder.

At the time of Joseph's first birthday the stuff was everywhere, I don't think I even owned a box. The memories, the fear, the anger, the resentment was there for the world to see. I felt enormous guilt, friend after friend managed fat termies, why did I fail my son?  Everyone was telling me it was over, that I had a perfect little man, slowly emerging from the coccoon of prematurity and becoming a beautiful, strong boy. But I couldn't really see it for all the mess. My mind was plagued by the fact he was so far behind all the other kids I knew, and it was all my fault.


By the time Joseph's second birthday came around, the box was there, and most of the stuff was packed. There was still a bit overflowing, and the lid didn't quite fit, but things were better, and I enjoyed his birthday a lot more than his first. The fear was still there, the late walking, the concerns about his speech and development. Deep down I knew he was fine, but that didn't stop it. The guilt was still there, but not nearly as strong. I was starting to get more perspective.

This year, coming up to his third birthday, I thought I was ok, but I am finding that the lid isn't as tight as I thought, and the tape is getting a little stretched. I am a little more alert than usual, a little more worried, the nightmares are floating at the edge of my subconcious, and the flashbacks are rearing their head again. The birth and death of Luna Bliss Boon has hit me hard, that could have been us. And I am trying not to go there, because there is no good in that - the what ifs, the whys, why not us? And the guilt. Survivor guilt. No longer do I feel guilty for Joseph's prematurity. I have moved on, if I blame myself, then I am blaming any mother who got pre eclampsia, that it's their fault, and that's just stupid.

To a lesser extent its threatening again, the negative emotional build up that occured at Joseph's first and second birthday. I have better control and more mental resources to deal with it, but it's still hard.  I have to keep concious of my thoughts, and follow them, and lead them to logical thought, away from negativity, away from the past, and into our very bright future.

It will always be there, Joseph's prematurity, and that's ok. But it must, for the most part, be kept in the box, safely tucked away.

My Top 5 Wishes for Joseph

This weeks Listography is a lovely one, head over to Kate Takes 5 to read the others too. Today we are are asked to share out Top 5 wishes for our child.

1. Happiness - Joseph's start was a sad one, it was scary, highly medicalised, and not very nice. It was a happy time of course, we had a son, but his life was in the balance. All my hopes and dreams were consolidated to one though, I want my son to be happy. So Joseph I wish for you happiness.

2. Health - When Joseph was born someone handed him a list of premature baby complications and he worked his way through each one in turn. He had sepsis, anemia, a PDA (hole in the heart), high blood sugar, ya da ya da. We were told that his first few years would be marked by hospital admissions and ill health. Joseph is a very healthy little man. Joseph I wish for you continued good health.

3. Humour - Life is serious enough, and I think it helps if you can laugh. Joseph already has mastered the art of the quick comeback. A few weeks ago I couldn't find him. He was in the spare room. I walked in and he was covered in lipstick, mascara and eyeliner. I was ready to shout and he said "don't be cross mummy it's daddy's make up". Joseph  I wish for you humour in all that life may throw at you.

4. Resilience - Sometimes life knocks us for six. Everything is going just fine and suddenly your world turns upside down. The difference between people succeeding and failing is "bouncebackability". Joseph has already shown this. I remember at several points in hospital when doctors thought we might have a sad outcome, Joseph would bounce back. Joseph, I wish for you that you remain a bright, resilient spirit.

5. Music - At many times in both my life and my husband's music has taken on a great importance. We both love listening to desert island discs and pretending to choose our own. I had the great pleasure of learning the violin and playing in the Tasmanian Youth Orchestra. I was seriously crap but I loved it. Playing and listening to music has made me very happy. Joseph, I wish that your life be full of music. If music be the food of love, play on....play on.

Just to let you know of two giveaways on the site I contribute to. Visit A String of Pearls for two fabulous giveaways: Mother's Day $250 giveaway and T is for Travel Name the Doll challenge

Fabulous Bags - Clippy London

Joseph is turning three in a few weeks time. I will blog a lot about his birthday, but in the run up I am feeling a bit delicate, which I will tell you more about in the coming days. Anyway, I really wanted to cheer myself up and saw that Clippy London were looking for bloggers to review their bags. I saw one last year at Cybermummy carried by Lou from Bloggomy, and stupidly forgot to ask her to write down where she got it!

Clippy London make amazing bags that you can personalise yourself. Commonly people use photos, and Calypso, the creator of this bag, has charm kits that you can use to dress them up further. I chose tote bag, to showcase some of my favourite photos. Here is the front of the bag:

On the front I chose 5 photos, with 4 of the Clippy designs to punctuate them. I really love it, and at Blog Camp yesterday found it fantastic, whilst telling the story of my blog, I could show them Joseph. Of course whenever I say he is the inspiration for Not Even A Bag of Sugar, people ask how he is doing now, so what better way than through pictures?

For the back I chose my 8 most favourite photos. I really love these and I think they look fantastic all together.

Calypso who is the mastermind behind Clippy has some amazing products and new releases are coming soon. She also has sticker kits so you can further personalise your masterpiece.

I really love the bag that I reviewed. I can see loads of applications for it, with little samples of knitting, embroidery, drawings etc, you are only limited by your own imagination and creativity.

I'm going to be a regular customer now, for gifts for my nieces, I have four, these are just ideal. I think they'd make lovely gifts for little bridesmaids or big ones!

As well as being pretty, I found my bag great for holding knitting, magazines, and other essentials for my train journey to Blog Camp and look forward to taking it on more adventures.

I received a Clippy Bag to review, all opinions are my own.

Premature Baby News Round Up

I'm going to trial a Premature Baby News Round Up each week. For daily updates follow my Twitter account Not Even a Bag News.

• To start with a lovely story from Liverpool Women's Hospital where Ann Parry a very experienced neonatal nurse has invented a special butterfly pillow. This pillow will be used to help keep baby's airways nice and open, preventing apnoea attacks. It's also thought the use of the pillow will help protect the soft, fragile skull of the developing baby and prevent flat head syndrome.

• I really love this story from Oxford, about the John Radcliffe Hospital and Burton's Queens Hospital that helped save the life of Jacob and his mother Pippa.  It's easy to criticise the NHS, and stories where things have gone wrong are quick to hit the news, but to read a wonderful story of a happy ending, and that illustrates how well hospitals in neonatal networks work together is fantastic.

• One of the things that the UK do through the NHS is offer free dental treatment for pregnant women up until the baby's first birthday. This article from Colorado illustrates why.  Women with perdiontal disease and poor oral hygeine are more likely to have premature and low birthweight babies. If you are pregnant or planning to do so, it's important to see your dentist and keep a good routine of taking care of your teeth and gums.

• There have been a lot of fundraising stories in the news this week, about varying feats raising money for premature babies, but this one from Ireland is my favourite!  I love the idea of these rough tough bikers raising money for tiny babies! The ride tikes place this weekend, so if your in Ireland, please show these guys your support.

• I was very pleased to see this story in the BBC news finally. It covers an important piece of research about milk feeds and premature babies. Babies like mine are often fed intravenously for weeks because it was believed that delaying milk feeds was better for them, but this new research contradicts the current practice, and may lead to less infection, and perhaps speeding up discharge. 

•  Winner of the most sensationalist headline of the week goes to The Sunday Telegraph in Australia, "Baby Chloe Hailes Could be Killed by a Sneeze" and I really want to write "and so could any baby with chronic lung disease or underlying medical conditions." Hey ho, it is good to see that it is making the news and making people more aware I am just concerned that it makes it sound like Chloe is the exception rather than the rule.

I hope you have enjoyed this round up, please let me know if its been of interest and I will keep it up!
 

Return from Blog Camp

Today I attended Blog Camp which was held in the centre of Birmingham in a very smart city centre building, not in a field with billy cans, damper and welly boots, sadly. Maybe next time.

Blog Camp is an amazing event which is free to independent bloggers and an opportunity to eat cake catch up with bloggers old and new and learn more about the diverse world of blogging.

What I love about Blog Camp is that it gets away entirely from definitions of bloggers. All sorts of bloggers attend Blog Camp, the omnipresent mummy bloggers, of which I am one, but food, gardening, craft and more. The first talk was given by the inspirational Bangs and a Bun. I've heard her speak before at the MAD blog awares. Bangs (Muireann Campbell) tells it like it is. Today's talk was about making our blog a brand and getting ourselves out there and heard, which was a really powerful message.

The remainder of the day was split into three sessions with various options. The first session I attended was "How to be Snark and Dealing with Online Negativity" presented by Stuart Heritage which I found fascinating. Stuart is a very experienced blogger/journalist and his presentation was very interesting. It still went over my head a bit, being Australian our take on sarcasm is very different, and we don't have the same way of dealing with things, but all the same, it was a great insight, and really funny. His Luv and Hat blog co-written with Robyn Wilder looks hilarious!

The next session was with Susannah Conway, all about ecourses, designing and presenting them. I have to confess I hadn't come across ecourses before, and what Susannah shared was extremely interesting. Her blog, and her insightful photography is just amazing, and she's certainly sparked an interest in me in learning more about providing ecourses and whether that's something I could do on Not Even A Bag of Sugar.

The third session I attended was about follow and nofollow links, which I won't go into here, but if you want to know more let me know! There's plenty of information out there and it was great to get clarity on it.

The last session brought us all back together and was about the relationship between bloggers and PR. I've only just started dealing more with PR as my rankings have improved and I've been seeking out more opportunities, and I've had nothing but good experiences. It was really interesting to hear the lovely panel of PRs discussing the relationship, and giving tips on how to deal with PR requests.

For me, though, blogging conferences are all about meeting people, old and new. I was delighted to be sat next to Louise who writes a wonderful blog The Girl Behind. I loved her blog post about Toasmasters and am considering joining. I met Carie who blogs at the beautifully named Space for the Butterflies. I got chatting to Carie because she was wearing the most gorgeous cardigan that she knitted. Knitting being my next favourite thing to blogging! I have asked her to do a blog post for me about her favourite knitting patterns for children. Make sure you check out her Pinterest boards too.

Last but certainly not least, it was great to meet up with Angela again from Angela - This is Life, the subject one of my only photos of the day!

It was a great day, and I'd highly recommend Blog Camp for any blogger old or new.

Friday Round Up - Bits and Pieces

It's been a busy week, and I've got a mad weekend coming up with Blog Camp tomorrow, and work on Sunday.

This week has been Real Nappy Week and there has been lots of buzz on Twitter, Facebook and on blogs. It's been really exciting to see so many people talking about real nappies, and the environment. I want to share with you this really excellent vlog by Circus Queen, which clearly shows that using cloth nappies is not difficult. When I am as pretty and as organised as Adele I will start vlogging, until then you are stuck with the written word!

I've been using the Ecoegg this week, and am very excited that I will never have to buy washing tablets again. I much prefer the way the Ecoegg performs as opposed to laundry liquids and powders, and my clothes feel so fresh. I hope I've persuaded you to give it a go. Please go enter my competition! Only a few days left!

The giveaway for a special edition TotBots nappy is open until Sunday, you only need to comment on any blogpost this week to be eligible.

I wanted to end this round up with Baba + Boo. This is a locally (to me) based company selling delightful cloth nappies. My favourite is Cruella du Wee, partly because I named it! I've been using their potty training pants, and will be doing a more comprehensive review and update with how the battle of the potty is doing in the coming weeks!

Also just to let you know I've started a new Twitter account Not Even a Bag News  where I post the latest stories about prematurity and pregnancy. I'm considering doing a weekly news round up on the blog, and would love to know if people would find that useful.

Thanks for reading everyone, and for your continued support and sharing!

The Beauty of Glass - Eco Week at Not Even a Bag of Sugar

I recently became an ambassador for Friends of Glass, a non profit organisation that exist to promote glass packaging and recycling.

I found out about Friends of Glass on Twitter and when I was asked to be an ambassador I was a bit bemused. I am not a manufacturer, or even a retailer, I'm just a mummy blogger. But then, it clicked, I am a passionate consumer of glass.

Meet our coffee jar.

This jar is 3 years old. We buy refills from the supermarket (and send the packaging back to be recycled) and reuse the same jar over and over. Glass is recyclable of course, but the best way to reduce our carbon footprint is to reuse something again and again until it is recycled.

The ultimate in reusing is milk bottles. Weve been getting milk in bottles for two years now. It's so convenient, and I think milk in glass tastes better, and keeps cooler. Its so easy we leave them out the front, they get collected and new milk in its place. I'd love to know how old some of these bottles are.

In this increasingly plastic world, glass is under threat. But it's so important that we as consumers continue to choose glass, so many products are infinitely better in glass, like jam and of course wine. Plastic has its place, but so does glass.

The Friends of Glass website is really interesting, with some great information about the history of glass, and even recipes, for jams and desserts.

If your passionate about glass join Friends of Glass and help keep glass in our supermarkets.

Saving Water - England in Drought

It seems incredulous, writing this post on a rainy Manchester day, that much of the UK is in drought. But unusually low rainfall levels have left our rivers dry, affecting much of England and Wales. As an Aussie it's something I am used to, and I already do a lot to keep our water consumption low. Hot water cylinder company Megaflo has put together some great information on how to save water.

In the bathroom: When brushing your teeth half fill a beaker with water. Dip your toothbrush in this, and use the same beaker to rinse. Don't keep the tap running whilst you brush your teeth.

Time your showers. Set a timer and when the time is up turn the water off! If you have long hair switch the shower off whilst you wash, or if your leaving the conditioner in.

Use a bath appropriate to the size of the human. Use a baby bath. I have a Flexi bath that I used until recently for Joseph.

There's a funny saying in country Australia "if its yellow let it mellow if its brown flush it down" Don't flush the loo after every wee, its a waste of water.

In the kitchen: Have one glass or a bottle for your day's water and don't wash it after every use. Fill a water bottle and keep it in the fridge, don't run the tap to cool the water down. When filling the kettle use a measure, and only boil the water you need for your brew. This is a real energy saver too, its amazing how much more energy it takes to boil a full kettle. On a similar note when cooking rice or pasta only use as much water as you need. Rice cookers and cooking with the absorption method take much less water.

When rinsing fruit and vegetables, or peeling potatoes, fill a bowl with a little water rather than running a tap.

When washing dishes wash them all together, don't do bits of washing up during the day. Don't leave the tap running to rinse dishes. Know how much water your appliances uses, often dishwashers use less than washing by hand.

In the garden: If you've used a washing up bowl use this water to water your plants. Likewise if you can with your washing machine, save the water at the end for the same purpose.

Container gardening is much more water savvy than having plants in the ground, so consider this when planning your gardening. Choose plants that are naturally water savvy. Also terracotta pots, being porous, are less efficient with water, so use crystals in your potting mix, or use a plastic pot and put it inside your pretty pot.

Use plenty of compost and mulch this will make your watering much more effective.

Around the house: Do a good survey of your pipes and make sure there are no leaks. Make saving water a game and get the whole family on board. Kids love nothing more than policing shower usage and issuing reminders to mum and dad if showers go on too long!

Be mindful when washing clothes, fill your machine. I blogged yesterday about the ecoegg, and this can help save water as you can cut your rinsing cycle down.

When washing the car use a bucket, not a hose.

There are lots of ways to save water, and soon they become a habit.

Megaflo is showing its support to helping save water by co-funding a Pump Aid project to develop water wells and flushing toilets for 21 schools in Malawi.  Pump Aid is a charity dedicated to providing clean water and good sanitation to underprivileged areas in Africa.

I was asked to spread the word about Megaflo but have not asked or received any compensation for this post.

Don't forget I have giveaways on Monday's Real Nappy post and Tuesday's Ecoegg post.

Half Term Fun

So Joseph has had two weeks off pre-school, and they have flown by! Since Easter Sunday this is what we have been up to!

Monday - Manchester Museum of Science and Industry

Every man and his dog was at the museum on Monday! Joseph didn't know what to do in the Power room, with all the different trains, engines, wheels and cogs, he was totally in awe of it all! We barely scratched the surface of the museum, which is great, as it means another trip soon!

Tuesday - The Train to Scunthorpe

 We took the train to see some friends in Scunthorpe, its a 2 hour jouurney from Manchester through industrial towns and rolling green countryside. I love the journey! I didn't take many photos as it is difficult with Joseph, who every time sees the phone, says "mum I want to play games on my phone".

It never ceases to amaze me how Joseph can just sleep anywhere! This is Joseph tucked up next to me on the train! At Stockport, ten minutes from Manchester, I put Joseph on my lap to wake him up "Joseph, are you awake" A loud reply "No mummy, I am sleeping!"

Wednesday- A double decker bus ride

Joseph "driving" the bus

 We went into Bury to see if we could find a double decker bus. I was rather impressed to see one going to Ramsbottom, the 472. Now whilst not in anyway a tourist bus, this route is great, it goes up Walmesley Road, should it not be raining, there is a farm shop, called Falshaw's en route, and Park Farms plant nursery and cafe. It then goes right through Ramsbottom and down the other side of the hill back into Bury.

A rather wet view of Bridge St Ramsbottom

We decided it was "far too wet Mummy" to get off in Ramsbottom, so we continued to Bury where we discovered that Greenhalgh's gingerbread dinosaurs had returned from their Easter break.

 On Thursday, we visited our beloved Boomerang soft play centre with dear friends Becky and Lottie. Joseph had a fantastic time. No pictures, as the centre was far too busy.

Fortunately no pictures exist of Friday's disaster. I was sick, and I'm never ill, so we had a duvet/doona day at home.

Saturday - Manchester Museum of Transport

We have to confess, as a family we are total transport geeks.  We had both a vintage bus and a train for our wedding day, as well as a vintage car. I can't believe I had never been to this museum before, it is truly excellent. It's basically two huge sheds filled with buses and a traditional tea room. What's not to love?

It's been a wonderful week!

Erin's Gift - Raising Awareness of Ronald Macdonald House

I am very excited that Anna from Erin's Gift has written a guest post for me. Anna's story, as much as it is very sad, is so inspirational. I first met Anna on Twitter and was amazed at her grace, in the face of such grief, and her heart for others. I have asked her to share the work of Ronald Macdonald House. Anna's Just Giving page can be found here.

I feel very honoured to be invited to write a post on Kylie's blog. I am a relatively new blogger - only starting in February following the death of my beautiful daughter Erin at 22 days old. Now I write my blog in her memory to help fundraising for some wonderful causes in her name.

One of the charities that we fundraise for is Ronald McDonald House who provide free accommodation and support to the families of the seriously ill children in hospital. So far we have raised over £6200 and hope to raise much more as a way of saying thank you for their kindness to us and to help them support other families. I am going to try and explain why the work that Ronald McDonald House do is so important and to do this I will start by telling you a little about Erin.

We found out that Erin may have a problem with her heart in pregnancy as she had Turner Syndrome, a chromosomal disorder, so it was arranged that she would have a heart scan shortly after birth at our local hospital. This scan detected problems so she was transferred to Alder Hey Children's Hospital when she was 1 day old. This was 60 miles from where we lived and tragically she was never able to leave. Due to my own medical needs, I was unable to go with Erin when she was transferred and it was 9 hours before I was reunited with my precious daughter. This seperation was horrendous and I knew that I could not bear to be apart from my gorgeous new born baby girl like that again. This was when we were told about the wonderful Ronald McDonald House. They had accommodation onsite at Alder Hey, only 3 minutes from Erin's ward and we would be able to stay there free of charge for as long as Erin was in hospital. This was amazing to me. As I was shown to our room, private bathroom and shared kitchen facilities I was still in shock and terror at the fact that my daughter was going to need heart surgery. I would not have been able to cope with the additional stress of finding accommodation as well and would definitely not have been able to leave her and go home. Without them I imagine we would have tried to sleep on a chair by Erin's bed or in the car - at a time when we were at our most fragile and under more stress than we had ever experienced before this could only have made things worse.

Erin lived for 22 days - 21 of them spent at Alder Hey. She suffered complications following her heart surgery and spent the last two weeks of her life critically ill in intensive care. There were a number of occasions when she required emergency procedures in the middle of the night and it was at these times that the wonderful work of Ronald McDonald House was really evident. The nurses were able to telephone our room and we could rush over and be by Erin's side in minutes, allowing us to give her a kiss before she underwent further surgery.

I wanted to spend every second I could at little Erin's side: holding her hand; stroking her hair and whispering words of love in her ear, but I knew that I couldn't. As her parents we needed to stay strong and we needed to get rest so that when we were with her we were at our best. If Ronald McDonald House had not been able to provide accommodation so near, I don't know what we would have done. For the entirety of Erin's stay at Alder Hey I was never more than 5 minutes from her side. The precious time that we had with her was never wasted on travelling times and for this I am so thankful. We only had 22 days with our precious little girl so every second really mattered. The work that Ronald McDonald House do gave us more time with our darling girl and therefore more memories. These memories are now the most precious thing I have.



I hope I have explained why Ronald McDonald House are so valuable to families with children in hospital. They currently have 14 houses and ultimately aim to build one at every children's hospital in the UK. They rely on the generous donations of their supporters. You can read more here.

Thank you so much Anna for sharing Erin's Gift with us. Although only here for such a short time, she will be leaving a lasting legacy that so many families will benefit from. 

If you have an amazing story to share, and would like to see it on my blog, perhaps you don't have a blog of your own, or you 







 

The Whiteness of The Lily - Reform the Stillbirth Law

Photo used with permission

I feel so privileged to be a blogger. Us bloggers invite you into our lives to share the happy times, and the sad times. At times there is bickering, the odd fall out, sometimes there are cliques. It's human nature.

Sometimes though, something happens to bring us all together. Kerry, a sweet and much loved blogger has recently gone through one of the saddest things that can happen to an expectant mother. She lost her baby. Kerry has been blogging her journey, and the posts are the most beautiful tribute to her beautiful girl Rihanna Lily. I feel privileged to be walking along this path with her.

Kerry has shared the most heartbreaking news this week. Her baby girl cannot be registered. Her baby girl had to be born, Kerry was induced when it was found that Rihanna had passed away, but she cannot receive a birth or death certificate. Why? Because Rihanna died at 23 weeks + 5 days, not 24 weeks.

I'm not entering into a debate about when life begins, or the current termination of pregnancy laws, that debate is for another day. However I strongly feel that a baby stillborn after 20 weeks should be entitled to have their birth and their death acknowledged by the state. This is common practise in many countries including Australia.

If you agree, there is a current petition, not drafted by us, it already existed, and I would dearly love, that if you feel the same way, that you sign and share.

Thank you

ONE - But We're Not the Same

I have been asked by the inspirational Michelle at Mummy from the Heart to lend my voice to the ONE campaign. I've seen the buzz on the social networks, but had no idea where to start. Sometimes, the problem does seem too big, what can I do?

And I feel guilty. I have the seeds of a post on survivor guilt running through my head but they haven't come out on to the screen yet. But looking at tiny children in third world countries who are on the brink of death just makes me feel such deep grief and guilt.

Why is this? I remember when Joseph was about to be born one of the doctors sat by my bed to keep me company, whilst Corey went and rang relatives and organised things for us and our new, very tiny baby. He looked at me full of compassion and said "you look so calm, you sound so positive, things are really bad you know". And I smiled. I said to him "I am lucky. I could live in Somalia, or the Sudan, or the Congo, or Burkina Faso. I could be dying with no one to help me, no surgeons, no drugs, nothing. There would be no NICU. I wouldn't have a hope of survival let alone bringing a baby home". He left in tears.

And that is the stark reality. I am here because of absolutely fantastic medical care. Joseph was never classed as failure to thrive as we had a team of doctors one step ahead of his inability to gain weight at their required rate. He went from strength to strength under their expert guidance. I had support and help too, even though at times I felt it was inadequate, compared to a lot of mothers, I had it in bucketloads.

I feel guilty and sad that if I had been born in a poor country in Africa, things would have been different. 

So what am I askng you to do? I am not asking you to give money. I am asking you to support an organisation called ONE. ONE are ramping up the action ahead of the G8 summit next month.

The campaign is called Thrive: Food, Farming, Future

The key aims of the Thrive campaign are that by 2015 -

• We could see 15 million fewer children chronically malnourished and 
• 50 million people lifted out of extreme poverty 

The problem is to big for me to make a difference, alone, but together we can have our voices heard. We can affect change.

Please read Michelle's post and look at the other ways you can help.

Fragile Beginnings - Discoveries and Triumphs in the Newborn ICU - A Book Review

I was recently contacted by Beacon Press, who asked if I would like to review Fragile Beginnings - Discoveries and Triumphs in the Newborn ICU by Adam Wolfberg MD.

I will be honest and say that I approached the book with some trepidation at first. I am "just a mum" of a premature baby. I don't have medical training, although I find the medical world fascinating. I did think this book would be out of my reach somewhat.

I received a very pleasant surprise. Whilst Adam Wolfberg MD is a specialist in high risk obstetrics, this book is, essentially, a father's story. His third child, Larissa, was born at 26 weeks gestation, his wife Kelly going into premature labor. The book starts with their dramatic and startling story. I was transported right into the operating room with Kelly and Adam as they welcomed their daughter into the world, my heart in my mouth as the c-section is described in minute detail.

We follow Larissa's journey. Larissa had a brain bleed an IVH Intraventicular Hemorrhage grade IV, the most severe of brain bleeds. Dr Wolfberg had done some research into brain bleeds and premature babies and knew that Larissa's condition could be very grave indeed. The book explores the world of paediatric neurology juxtaposed against Larissa's story.

Whilst descriptions and explanations do get technical, you get the sense the Dr Wolfberg is explaining it to you as he would a parent, in detail, but with layman's terms explanations. I felt that I gained a much better understanding of this common complication of prematurity.

Dr Wolfberg goes on to talk about the discoveries and advances in both neonatal care in general and neonatal neurology in particular. He also goes into great detail about plasticity, the ability of the brain to compensate for what has been damaged, research into this field is very much ongoing and a work in progress.

Perhaps the most valuable, but most difficult section of the book is Chapter 6, Whose Choice which talks a lot about who makes decisions about what actions to take when a baby is born prematurely, and spends a great deal of time and care explaining the moral and ethical decisions made by doctors and parents in a complex legal environment, laws in the States being different, and to my mind, more complex than the UK.

I found this book incredibly valuable as a parent, to deepen my understanding of how neonatal care has developed, and is still developing.

On a personal level, this book reinforced just how fortunate and blessed we are with Joseph, whose journey in NICU, although 5 days longer than Larissa's was uncomplicated in many ways.

I don't want to spoil the book, but Dr Wolfberg follows through Larissa's story up until the present day, she is now 9 years old.

I would highly recommend this book to parents. It is life affirming, and a celebration of premature babies, their doctors, nurses and ultimately their parents.

Fragile Beginnings
Adam Wolfberg MD

February 7 2012

Health/Medicine
Hardcover
ISBN 978-0-8070-1160-7
Available on Amazon UK

This evening 11th April at 7pm GMT (2pm EDT) there is a March of Dimes #pregnancychat on Twitter. Adam Wolfberg MD will be joining in talking about the risks of preterm birth, from both his perspective as a clinican and a parent. I intend to be there so I hope to see some of you tweeting with the hashtag #pregnancychat

The Naughty Corner - Why I don't Use It

Like many people, I have, on occasion watched Supernanny. I have to admit, the first few times I saw it, I thought it was a spoof! Surely pitting parents against their children in a battle of wills with a perfectly dressed but ill-advised so called Supernanny was a joke? I'm no child behaviour expert, but I have 20 years experience with special needs childrens and adults, and the way she was advising these parents to treat their small children, particularly those under 5 appalled me. She broke every rule I have ever been taught.

On one of my parenting forums a few of the parents can spend up to 45 minutes forcing their children to stay on a "naughty step" for up to 2 minutes. The "wisdom" from Supernanny and her ilk is that a child spends as many minutes on the step as they are old, so 2 minutes for 2 years old, 3 minutes for 3 years old etc. Every time they get up, you put them back. To me this is restraint, and if you did it on an adult say with learning disabilities you could be prosecuted!

I do think there is a role for "time out" but not naughty steps and spots and chairs. I take Joseph out of situations. The picture above was taken in Germany at Christmas time. Joseph was over stimulated, over tired and generally grumpy. His grandparents were inadvertantly making things worse by making things confrontational, so I scooped him up into his pram and took him to the park to blow off steam. I have been known to open the door into the garden and give him a football if he is in a rage. Far better to kick a football than me. Redirection is key.

I am reassured that I am not the only person who feels the way I do about the naughty step, you can read more here and here.

Here are my reasons:

Labelling - If you label a child enough times, they will end up reacting to type. If you put a child on a "naughty" step or chair or spot they will start thinking that are naughty and will behave to type thus making their behaviour worse.

Attention giving - children love attention and quite rightly too. If they are not given enough attention they will behave badly to ensure this attention is given, even if its to spend 45 minutes battling over a step. Why not put a stop to this and give loads of positive attention? To me 45 minutes is a waste of everyone's energy.

Objectifying behaviour - If you label a certain activitiy as naughty, say throwing food, the child may then throw food just to get on the naughty step to watch mum and/or dad getting increasingly stressed over trying to control that behaviour.

Withdrawal of love is just wrong - Like it or not, the "naughty step" is a withdrawal of love technique, and I think sends a deeper message. "I don't love you unconditionally, I only love you when you do the right thing. I have seen a key point of the naughty step is to get the child to then apologise and give you a hug. I just think this is wrong. You've forced the child out of the situation, enforced your will to make them sit on a step for 2-4 minutes, and now you want a hug?

There are oodles of positive parenting techniques that work with toddlers. Joseph is, for the most part, a very lovely, well behaved little boy. But he's a toddler. His understanding of the world is limited and at times he rages against it. We learn, as adults, to control our rage, but toddlers act on wild, pure emotion.

Getting to a child's level, speaking gently, redirecting them to a more positive activity, to me is a far more worthwhile process than battling over a naughty step.

I love this quote from Alfie Kohn

I discovered some disconcerting research on the damaging effects of techniques like the “naughty corner” (better known as time-out), which are basically forms of love withdrawal. I also found quite a bit of evidence that parents who refrain from excessive control and rely instead on warmth and reason are more likely to have children who do what they’re asked – and who grow into responsible, compassionate, healthy people. 

I don't want a child who is frightened of me, living in fear of being placed on a naughty step. I want a child who is happy, confident and knows right from wrong. My method may not bring spectacular, immediate results that look good on television, but I am confident I am doing the right thing for Joseph by eschewing this horrible method.

 

The Importance of Milk Donation

On Easter Sunday this amazing article was published in the Daily Mail. The Daily Mail, bless it, is not always known for being supportive of breastfeeding and this article was just lovely, and explains so clearly why donated milk is so vital for premature babies.

When a baby is born prematurely, many mothers can only express tiny drops of milk, however a premature baby needs volumes of milk straight away beyond what many mothers can express initially. A NICU has two options, use formula, or use donated breast milk.

Formula for very early babies has been shown to be implicated in NEC, necrolitising enterocolities, as the baby's gut is not ready to process its complex make up. I'm not dissing formula in any way at all, and most of my readers will know that Joseph was formula fed from the time he was term until the age of one.

Kylie expressing on the unit with my friend Medusa the Medela pump!

In our unit, donated milk was not available, there was no milk bank. So when my supply dipped I had no option but to put Joseph on formula, which made me very sad. If donated milk had been available I would not have hesitated to use it.

In the UK milk banking is confusing, there are seperate milk banks dotted around the country, so again we see that there is a post code lottery when it comes to whether your baby will be offered donated milk at all. I've been looking at the United Kingdom Association of Milk Banking website, to find out more.

UKAMB have some tips for mothers who need donated milk, and also have a campaigning section on their website.

I think the key is raising awareness of the importance of donated milk, and mothers offering to donate, and parents requesting donated milk for their baby, if its needed. Neonatal units in hospitals where there is no milk bank need to know of the importance of donated milk and need mothers like us to ask for it, whether its to donate or to use it. I have heard too many sad stories of milk being dumped when there is over supply, and that milk could be used.

Before a mother donates milk they are screened via a blood test and an extensive questionnaire. Mothers usually can only donate if they are feeding babies under 6 months of age, as "newborn" milk is more appropriate for a premature baby's needs. Donated milk is then pasteurised to ensure it is safe for premature babies.

Donated milk is safe. I had to laugh at a comment on the Daily Mail article (yes, I know, reading Daily Mail reader's comments is bad for the blood pressure)

sick, the thought of someone elses breastmilk being given to my baby gives me the creeps

To me, giving a tiny little baby milk from a cow gives me the creeps! How can milk from another species be right, again I remind you that Joseph was formula fed, so I am not anti formula and totally accept that breastfeeding is not always possible, no one knows that more than me.

If your baby is on a neonatal unit and you are unable to express enough, then ask for donated milk. If you are a mum who is currently breastfeeding, consider donating your milk.

And to finish, I really want you to read this, although sad beyond measure, this mother's story is truly inspirational.

For more information on milk donation and getting involved visit the UKAMB website.

Easter Sunday

Today we had special visitors, Katherine, Little bit and Mr PinkWellies from Mummy Pinkwellies and Sim from Sim's Life.

Lunch was lovely, and it was nice to have a traditional mummy's kitchen natter whilst the kids and dads ate away from us putting the world to rights. I learnt for the first time that Katherine had first read my blog when her little girl was in NICU, which I found really fascinating, and she said she found it reassuring, which makes me so happy. Her little girl is just amazing, and was very confidently marching about our house!

Here are a couple of snaps!

Simnel cake

Lemon cupcakes and chocolate peanut butter cupcakes

Beautiful flowers from the Pinkwellies family

A very tried little boy

Good Friday

This morning started with snuggles on the sofa. Joseph has been extra snuggly this week, since I broke him. I can't believe I broke the toddler. It happened on Tuesday. He got his hand caught in the hinge of the bathroom door. His little fingernail came right off. It was heart breaking. He's still a bit tender, but it seems to be healing well. I hope it grows back soon.

I have been busy cooking and preparing for Easter Sunday, I have a night shift tonight then will sleep in the morning and do some more organising in the afternoon. Look what I made! I did intend it to be a joint project but Joseph wasn't interested. He has enjoyed eating the "glitter biscuits".

We used this recipe which worked really well. The lovely cutters are from Lakeland.

I'm hoping to get a simnel cake made. I finally decided on making a lamb souvlaki type dish for Easter Sunday, as we don't have enough tables and seats, it will be like an indoor picnic, unless the sun starts to shine, then we can head outdoors!

What are you up to this Easter holiday?

No Room at the Inn - the Heartbreak of Neonatal Transfers

A lot of my friends have been affected deeply with their babies being transferred out to other hospitals, often a long way from home. I have asked Leanna from Diary of a Premmy Mum to share her experiences. Thank you Leanna, and your post is very enlightening as much as it is heartbreaking.
 
When Kylie asked me to write a post about Neonatal transfers, the very first thought that occurred to me was 'Am I actually allowed to rant on somebody elses blog? ' - Because if there's one thing that gets me all hot under the collar you see, it's the state of the Neonatal cot space provision in the U.K today.

Just like Joseph, Smidge weighed a teeny 1lb 7oz at birth and required very specialist care. Now don't get me wrong, I wouldn't change the care she received in those early weeks for all the tea and china, I just wish we didn't have to travel 150 miles, stay in four different hospitals and endure five hospital transfers, that's all.

I will never forget those hours in the ambulance across the ice and snow, just a midwife and me and a very squished up Smidge, who had lost all her waters. One day hubby travelled in the car behind, having thrown a duvet and some clothes on the back seat whilst our oldest son Mr. G was temporarily sent to stay with granny by the sea. We had no idea that we were going to be stuck in this unlikely location for over two months.

Typically Luckilly, One-day hubby didn't forget his lap top, which meant he could work from a distance. And, despite many failed attempts to piggy back the hospital wi-fi system, mobile internet was our salvation and he carried right on developing software in the NICU waiting room, just meters away from a battling baby Smidge- That's the finances taken care of then.

Astonishingly, the company he worked for supported this bizarre set up...but I'm not sure all employers would be quite so understanding.

Seventeen days in to our journey,( after the record breaking snow fall finally subsided,) Mr. G joined us, accompanied by our rather exuberant German shepherd, 'Ruby-dog' and One- day Hubby further extended his role. He became a super dad. Yes, he was a software-developing, nicu visiting, home educating, dog walking, some-day wife proper-upper, paying out expenses on two different properties, a financial predicament we are still recovering from to this day.

But as we settled in to our temporary house, Smidge decided it was time to remind everyone that she was in fact a preemie and like most preemies she was somewhat unimpressed with the make- shift womb. A speedy deterioration followed the diagnosis of NEC and she was promptly wheeled into the back of an ambulance for an emergency transfer to a surgical unit.

It was a very low point for One-day hubby and I. Neither of us wanted to leave her side, but poor old Mr. G was beyond bored and despite our attempts to occupy him with numerous new nintendo games,no amount of gadgetry was going to make up for his missing friends and family who were hours and hours away from us.

The surgical hospital was busy. The atmosphere resembled that of Paddington Station. No time for tea and sympathy, Two in, one out...there were lives to save and parents just had to get on with it. The bold primary colour theme was a far cry from the cool shades of blue and lavender at the level three unit, which in contrast seemed like a tranquility of oasis.

Smidge must have heard the surgeons plotting, as she swiftly made a recovery with the help of ye old favourites, the much loved red bag (drip feed) and the bootiful antibiotics.

We'd been trying to get her to tolerate milk for two months by this point, but each time we tried her with the freshly squeezed boobie juice, she would abruptly reject it in favour of the former. I guess she just loved that drip feed more than anything else.

On the plus side at least the surgical hospital would be able to get her feeding properly established, then if anything goes wrong... she'll be in the best place, right?

Wrong. Her bed space was already lined up for another sick baby, and a still unwell and food intolerant Smidge was sent right back to where she came from, the 'assesment' incomplete.

Back at the level three unit, the doctors ummed and ahhed and poked and prodded and a week later they came to me with the 'good news' that Smidge could be transferred to a unit closer to home.

'But feeding has not yet been fully established' came a small voice from me, the parent.

'We know but, we have to make room for our local Mums or, in a sense we will end up putting them in the same position you have been put in. As far as we are concerned she is well enough to travel today'

And as we said goodbye to the unit who bought Smidge so far, I left with mixed feelings. Grattitude, rejection, fear and anxiety. How I wished I was was not taking an intensive care patient 150 miles in the back of an ambulance because once again, there was no room in the inn.

She lasted about a week at the level 2 unit, before green bile and recurrent apnoea prompted yet another surgical transfer. With the duvet's piled high in the back of the car, Once again we set off on what was this time an 80 mile trip to the latest world of monitors, charts and bleeps, the only source of continuity being a singular pre packed suitcase.

It was hospital number four and I was stressed. Actually that's an understatement, I was steaming! wanted to be in my own house, I wanted to sleep in my own bed. I missed taking my son on the ordinarily tedious school run, I missed shopping at my local supermarket and washing up at my own kitchen sink.

I'd also lost faith in the doctors and nurses. I'd given up on trying to have any control over the process.Here we were three months down the line, still with a very sick baby and it all just seemed a bit yadder, yadder, yadder.....

Thank goodness for my i-pod which assisted me in excluding any social stimulus that existed outside of me touching or holding my baby. Everyone else could jolly well consider themselves sent to Coventry, I'd had enough.

As with many things in the Neonatal world, I experienced service provision as being paradoxical in nature. On the one hand it was utterly amazing that the national health service would save the life of a baby born so small, but equally I see that my child suffered needlessly at the mercy of the hospital transfer system, so the gratitude I feel will be laced with anger and with a drive to see things change.

We know these very small babies require specialist care, we know the problems they will likely encounter, but until they are allocated the resources they deserve, vulnerable babies lives will continue to be put at risk through the hospital transfer system.

So,If you're like me and you think early gestation babies deserve the best care they can get, speak to your M.P today about securing resources for Neonates.

Because no baby should be made to suffer because they were born too small.

Rant over.