Wednesday, 26 December 2012

The One Where I Make An Announcement

When Joseph came home from hospital, I was a bit of a mess. I found it really hard to make sense of what had happened. I felt bitter and jealous. I found getting support really difficult. In my area of the UK there wasn't a strong support network. I floundered.

I started my blog purely as self indulgent writing to help me make sense of what had happened. As I wrote I was heartened by the support I received and the messages I got that helped me realise that my feelings were pretty normal.

Over time my confidence grew, I joined blogging networks, attended conferences, and joined some of the rankings like eBuzzing and Tots100. I was nominated for a MAD blog award and later a Britmums award.

I started working with charities like the March of Dimes in the US, with Bliss and with Tommys. I spoke to media and wrote for newspaper blogs. I found my voice.

But what I found most was support, friendship and love, often from the most surprising of sources.

Every single one of you who has read, hugged, encouraged and supported me, whether in real life or online, has helped me more than you will ever know.

I have grown so much as a person, in confidence, in personality, and most importantly as a mother, to use the experiences of Joseph's premature birth to grow and develop.

I am excited to announce that on January 17 I start work for Bliss in their brand new Manchester office as a Regional Volunteer Coordinator. I am so proud that I am now a Bliss employee, and to work for the charity that has given me so much. And to enable me to achieve one of my objectives, to make face to face, peer support much more available in our region, a goal Bliss shares too.

As a result I have decided that Not Even A Bag of Sugar will no longer be as it is now. My hours of work will be demanding and its time to work on my two important careers, motherhood and with Bliss.

I would like to thank each and every one of you, there are too too many to mention individually here, but I appreciate you all so very much.

Over time I will be creating a website to collate much of the content of Not Even A Bag of Sugar, and hopefully some more projects are in the pipeline. I hope to continue personal blogging in some way and will let you know once that has started.

Thank you again for all your kind support and love that you have shown Joseph and I over the past 3 years.

Kylie x x x

Sunday, 16 December 2012

Twelve Twitter Tweeples

That I would love to have over for a dinner party.

Sheldon - who belongs to @Daniel___Bsc sporting the hat and scarf I knitted for him


I love Twitter. I really really do. It took me a while to come to grips with it and now I have a beautiful bunch of people, some of whom have become the dearest of friends.

I was rereading this marvellous post, Twitter is Like by Dorkymum (who can't be on the list as I've met her in real life already and know she would be the consummate dinner party guest!), and came to thinking that some nights lately Twitter has been like a fun, lively dinner party for me. So what an amazing way to introduce you to some of my favourite folk on Twitter.

So my first criteria for guest selection was that I haven't met these people in real life (yet) which is why there are some ommissions.  This may be another post! I have managed to have an equal split of men to women, which was unintentional, but rather clever! These are all people that I interact with not just follow. I hesitate to say no "big name" celebrities, because there are a couple on here who are quite well known. These are all people whose opinion I value, who make me smile, laugh, and think. Several of them are people I can call on when I am sad or lonely and are real friends.

Daniel My dear friend Daniel needs little introduction if you have read my blog in the last few months as he has guest posted for me. Daniel is so funny, quick witted, intelligent, insightful and caring. He also does not "do" parties and would be a bit grumpy at being invited I think. So it's just as well that two of his close Twitter friends are friends of mine too, and they can call sit together at the end of the table! They might even lead him astray.

Professor Francesca Stavrokopoulu Francesca would make a fabulous dinner party guest, though would possibly break rules, I doubt, like one of my other guests, she would stay away from religion, and possibly not politics either. Francesca would bring a depth of conversation to the table, and my I say, probably a bit of silliness too, when partnered with her double act.

Stamatina sister of Francesca, Stam is great fun at parties, and I know this as I have seen the pictures! Together with Francesca she would be guaranteed to cheer Daniel up and include him in the party, whether he likes it or not. Only thing is, I would possibly lock the vodka up until all the food had been consumed.

Becca whilst Francesca would definitely break the religion rule, I am relying on Becca to break the politics one! Becca is a great Twitter friend, quick witted, clever and writes an amazing blog. She is the type of person who makes you think things in a different way. One of the things I love about Becca is her ability to challenge people's perceptions about prettiness, disability and periods.

Odette is a lovely Twitter friend, and would help to keep order at this end of the table, in fact I am relying on her. Odette is so inspiring, swimming, golfing and has lovely dogs! I trust her to deepen the conversation and reign in the religion and politics somewhat!

Ranj Singh I often say I followed Dr Ranj before he became famous! My definition of fame has changed since having a child. You are not truly famous til most under 5s know your name. Dr Ranj would definitely bring a lot of fun to the table, not trusted to stay off politics, particularly if we get onto the NHS. And he can even sing the poo song if he wants, but perhaps wait til after coffee and chocolates...

Shelly It's not a dinner party without a fellow Tasmanian! I met Shelly as she is a fellow Richmond Tigers fan, and we've really hit it off! I am hoping Shelly brings some treats from home. She is guaranteed to bring her lively sense of humour, and we'll drive everyone nuts with Tassie in jokes and Aussie culture.

Dan will also bring some Aussie flavour to the table. Dan provides some great financial advice in his blog but is so much more than just a financial planner.  Dan is witty, interesting, and also very caring. He can chat on a wide range of topics, and I am also relying on him to steer the conversation away from politics and religion.

Tattoed Mummy is one of my long standing tweet mates! A prolific tweeter, and a lovely combination of fierce, friendly and funny. Not to be trusted to keep to any rule, she would certainly be great fun at a dinner party. Might possibly fight Stam for the vodka so I will be sure to have plenty in supply.

Bobby Ghaheri MD is just one on his own. I mean with someone who has on his Twitter bio "I pick noses and clean earwax" just has to be the ideal dinner guest. I am going to have my work cut out for me at this dinner party catering for vegetarians, Paleo eaters and everything in between I fear. Sat firmly at the bacon end of the table, bacon ice cream anyone?

Hisham Rana MD was one of the first people I ever followed on Twitter, found through a retweet about medical issues. He is my go to person for the latest research, and he is great fun too. Although I am not sitting him with Bobby, that is just asking for trouble. Sorry guys! And no talking about cars at the table, unless you bring me a nice one for my hostess gift!

Rev Richard Coles you have to admire someone with so many followers who operates such an interactive, supportive account. I count him as one of my Twitter friends, someone who inspires, provokes thought, but is never preachy. Another not guaranteed to stay off religion or politics, and I am still deciding whether to sit him next to Prof Francesca or at the opposite end of the table, though I gather they have as much that unites them as divides them.

So there you have my 12 Twitter Tweeples I would invite to dinner. Who are yours?




Saturday, 15 December 2012

10 Fun Festive Things to Do Next Week

I wrote on Thursday about my problems with Christmas and that this year I want to enjoy the lead up and have fun. So I thought what better way than to plan some activities and I have you all to keep me honest! I will blog about what we do as well so you can share the fun!

We're going on a (Polar) Bear Hunt



One of Joseph's favourite books is We're Going on a Bear Hunt. We'll read the story Sunday night then first thing Monday we'll start our hunt. Our local Garden Centre has an awesome Christmas display.....with polar bears! Hopefully weather permitting we'll walk, if not there's a bus right to the door! Joseph hasn't been there at Christmas since he was a baby so he won't remember, which will add to the excitement.


Magical cupcakes and sausage rolls



Christmas is all about giving. We have two treasured elderly neighbours that live nearby. Firstly Pat, who was a Salvation Army Officer, we will make her some cupcakes with an angelic theme. Secondly Ernie and his grown up sons. They are not cupcake people I don't think, so we will make them some yummy festive sausage rolls. We'll do our making in the morning on Tuesday and our giving in the afternoon.


Make a snow man

I have started this today, snow or no snow. I have a great pattern for a papier mache snowman, that we can fill with treats as a pinata. I'll do the papier mache and then we'll pain him or her on Wednesday. No photos yet as it is in a very embryonic stage and looks a little scary!

Sing Christmas Carols

Joseph loves to sing and one afternoon this week we'll dust out the Christmas songs and have a good sing song!


Make a Chocolate Log

On Friday we're going to make a chocolate log, to have over the weekend before Christmas. A bit untraditional but there is so much rich food on the day that I thought it would be nice thing to make and to share with the neighbours too.


Glitter snowflakes

I bought some love cutters from TKMaxx, and I'm going to make some glitter playdough in white for Joseph to play with. He loves play dough!

Christmas Cookies

On Thursday we're going to bake some tree decorations. The tree is up and looks lovely but some biscuits would finish it off nicely. I didn't want to do these too early as I appear to have a 3 foot high rat living somewhere between the living room and the kitchen, and wanted some on the tree on Christmas day!

Animal hunt

Weather permitting on Friday we're going to go to Heaton Park and take photos of the animals and then catalogue them. Joseph adores animals and he will enjoy going to the farm park and finding them!

Christmas message

With all Joseph's extended family living abroad, this week we are going to record a Christmas message and Daniel, my friend is going to help us edit it, or talk me through it, as he is a whizz and I have no clue! It should be great fun as Joseph loves to talk! (not my child clearly)

Card delivering

Also this week we are going to take a twilight trip to Stubbins, the village where we used to live, and take some cards and gifts. One of the houses is always spectacularly lit, so we'll go and visit that too.

I am really excited about this last full week before Christmas and look forward to spending it with Joseph and getting in the festive spirit!

Thursday, 13 December 2012

Tis the Season

Christmas is hard.



I am trying to be enthusiastic, but I am finding it difficult. I find myself singing "Tis the season for tears and tantrums" to myself whilst rocking in the corner. Joseph doesn't yet quite get the concept. He thinks all toys come from Argos and its up to me to buy them all! I am hoping next year he believes!

He has discovered superheroes in a big way. The other day he said "Mummy can I go on Skype and ask Father Christmas the iron man question?" I stupidly asked "What's the iron man question Joseph?" and he looked at me as if I was 3 and he was 40 and said "can I have an iron man for Christmas". I have a feeling he is just humouring me.....

But on this journey I've been on I kind of realised something. I lost my first baby at Christmas 17 years ago. (that's a bit scary, I could have a teenager sitting exams....). It was one of my first adult Christmases and I think since that happened, my innocence for Christmas went away. Shortly after that miscarriage my marriage ended.

It's not with self pit or self indulgence that I write this. For many people Christmas isn't a happy time. It's lonely, sad, tainted with memories, of missing relatives, of grief. That's life, isn't it? Life is pain, as Wesley says in the Princess Bride, and anyone who says anything different is selling something.

So this year, I am determined. I am going to put sadness behind me and have fun. I have started by doing a mad project that hopefully I can blog about tomorrow, Royal Mail permitting! I am making plans for next week, as Joseph has the week off. We are going to the local garden centre where there are amazing Christmas displays, working on a Christmas pinata, and doing some festive baking.

I am going to have fun this year, enjoy the lead up, and relax and enjoy the day.

Tis the Season to be jolly after all.

Sunday, 9 December 2012

PTSD, Paroxetine and PSY

I had a lot of response to yesterday's blog post, particularly privately. I wanted to explain a bit more about PTSD and the medication that I am on. This is personal reflection and my experience only, its not a clinical article. For accurate advice please contact your own health professionals.


Last night I was playing on Twitter, as you do, having a banter-type conversation with two friends. One friend referred to me as "sexy". I panicked, and initially felt very uncomfortable. Now the old me would have over reacted, deleted and blocked that person. But the new me approached things slightly differently.

Let me explain. When we are in a traumatic or difficult situation all our senses work to protect us and determine whether to use "fight or flight", that basic survival instinct. As a little girl the man who I was afraid of would often refer to me as "sexy" before doing something I didn't like. That word would trigger a response, the hairs on the back of my neck would stand up, I'd start to breath quickly, sometimes my asthma would flare up and I could hear myself wheeze, my airways constricting. I'd start to dart my eyes about looking for an escape, wrack my brains looking for a way out. Sometimes I would be able to make excuses and get away, sometimes I would fail.

When I was a little girl, to panic at that word and put a plan in order was an entirely appropriate reaction. The emotions and physical responses it would trigger would alert me to the trouble ahead, and enable me to react in a way that would try and keep myself safe from harm.

Now I am 40 that response is not appropriate, its an overreaction. The person who called me that yesterday is a Twitter friend, who I chat to occasionally, and he was just being playful, he didn't mean anything at all by it, it was just friendly banter. I was frightened because of past associations I have with that word, it wasn't his fault. Someone else possibly would have been flattered.  It's up to me to change what I associate with that word, to change it from something dark and frightening, to something more positive.



The medication I am on slows that firing in my brain that says "danger, delete and block - protect yourself". It enables me to step back and go "hang on a minute, is this a real threat or am I just perceiving it as one". It also enables me to have a laugh at myself and move on.

One of the things I have learnt previously is EMDR eye movement densensitisation and reprocessing. However there are other ways to reprocess fears and negtive emotions. My therapist taught me a variety of techniques but one is to associate something else to a trigger. So for me the word is "sexy" which to me means "danger", "scary", "not safe". So what could I do to help myself think of this word in a different way? As in the pictures, I can change the colour, that shape, the way the words look.

And as for sound, the answer is Gangnam Style. Genius. How could that music, that dancing and my good friend PSY singing "Hey Sexy Lady" be frightening. It isn't scary, its silly, and it makes me smile, laugh even. If I repeat the word, in my head (even I am not going to attempt to sing Gangnam Style, for all that my first real boyfriend was Korean), it changes the meaning and makes it funny, approachable.

There are ways to desensitise from these feelings, with or without medication. It could be preventative. As NICU parents its something we can do for new parents beginning our journey.  I always suggest buying NICU mums a lovely smelling moisturiser, or better still a range of them so there are always different scents, and a positive feeling, of soft sweet skin. I often suggest buying blankets for babies, so they can be used in hospital to help counteract the white sterility and bring a little bit of home in to the hospital. Later on once home it could be that you need to work to turn those beeps of the monitors into something else, rather than symbolising a hospital stay incorporate them into a song, or another sound like jingle bells. The song NICU at Nite does this really well, look for it on YouTube.

I'd urge anyone struggling to seek out help, there is lots around, you just have to look for it.

Saturday, 8 December 2012

The Drugs Don't Work.....

Um yes they actually do.

So it's been six weeks since I wrote that post, Jimmy Savile is Dead. Six weeks is a long time in politics, the media, and as it would turn out at NEaBoS Towers. (I'm loving the anachronism, I can't remember who coined it, if it was you, please own up!)

So initially I had commented on a few blog posts anonymously, then after consulting a very dear friend of mine, decided to open up on my blog about things that happened a long long time ago, which was very cathartic. But, my readers, that was only the start of the story.

Following the post a lot of memories came flooding back, and emotion, and with that anxiety. I decided to go and have a chat to my GP who was highly sympathetic and supportive and suggested I tried Paroxetine.

I approached my very caring employers and they gave me the number for their Employee Assistance Programme, and I have commenced a course of counselling, which is helping enormously.

The Paroxetine has not only stemmed the anxiety, its given me better clarity of thought. It's also helped me slow down a bit, and take time to enjoy things again, like being a mum. Hence the lack of blogging, as I am sleeping more, spending more time with friends, and a lot more time with Joseph. I am cheered enormously by my friends and the support I have received.

What is also amazing is the IBS has gone. I am no longer bloated, I am beginning to lose weight, and bought size 18 jeans for the first time in six years. I thought it was just coincidence, but have discovered that even in the absence of psychological symptoms, Paroxetine is used in persistent IBS, so hooray for Paroxetine, it's really helped a lot.

There's a lot of stigma around mental health, and around anti depressant and anti anxiety medication. Some brains just don't work effectively and need a little help. For me it appears to be just from time to time, and I anticipate working to come off these sometime, probably not for 12 months or so yet.

If you have arthritis, you take anti-inflammatories, for asthma you take inhalers, it makes sense that sometimes if your brain is broken you take the meds. And give them a chance.

Life is looking brighter and I am greatly looking forward to 2013 with new challenges and a renewed focus.

Friday, 7 December 2012

Christmas Shopping Challenge at TKMaxx

Regular readers of this blog will know that I love shopping at TKMaxx. I love the variety, the brands, the layout, the thrill of finding something amazing. I was given the opportunity to buy gifts for 6 of my nearest and dearest family and friends with £200 to spend. I was so surprised at the amazing gifts instore and the prices, I actually managed to buy 8 gifts.

My local store in Bury is so organised, bright and welcoming. I felt excited as soon as I walked in, and immediately started finding some amazing pieces.

Here is group one!
Grandma
A lovely beanie, infinity scarf and socks - £26

Grandad
Purple shirt with a shaving mirror - £27

Joseph
Chainsaw man playset and power ranger - £15

Sister in Law

Purple handbag and treasure box - £33

Now for group 2

Nephew
Dinosaur tracing set and pirate puzzle £11

Husband
2 cotton shirts £37

Niece
2 jigsaw puzzles £12

Niece
Cosy socks, nail varnish and make up brush £24

I was really spoilt for choice instore, and am really glad I set myself a time limit of 90 minutes or I might still be there! There are also amazing home decoration ideas, foodie gifts, kitchenalia and loads more to choose from.

If your looking for some brilliant individual gifts this Christmas definitely check out TKMaxx.
 

Thursday, 6 December 2012

Premature Birth in the News



Yesterday was one of those days when as a parent of a premature baby you catch your breath. It was everywhere. Myself and many other parents were called upon by the media to give our "soundbites" short little insights into our world. A world of tiny babies, of highly medicalised beginnings, and for many parents, uncertainty and ongoing problems.

The reason for the buzz about preterm birth was the release of new date from the EPICure project. You can learn more about the project on the NHS website here. EPICure looked at data collected from maternity and neonatal units in 1995 and then 2006. I have a few issues with the EPICure methodology and just how much it is relied upon, but that's a post for another day.

EPICure looks specifically at babies born between 22 weeks of pregnancy and 26 weeks. The article I have linked to gives more specific information about the data but in essence the study found that survival rates have increased over the period of time from 1995 to 2006
  • 9.5% increase in survival (1995 to 2006) for babies born at 23 weeks
  • 12% increase in survival (1995 to 2006) for babies born at 24 weeks
  • 16% increase in survival (1995 to 2006) for babies born at 25 weeks 
The main reason for the increase in survival rates has been reported to be the delivery of steroids to the mother to improve lung development. I do think there is greater awareness of pregnancy problems, and as mothers to be become more aware of developments in this area, they are a driving force behind good care provision and proactive management.

Sadly the range of problems that can beset a premature baby remain unchanged, and the rates of complications like retinopathy of prematurity are going up rather than down, although it could be argued that this is due to better screening protocols than actual real increase.

What is undeniable is that preterm birth rates are not going down, and that the likelihood of these babies going on to have long term health problems remains a constant risk.

My concern, as a parent, is what is being done to prevent premature birth? We need more research, much more money spent on real solutions to pre term birth, better education of mothers to be about issues like infection, pre eclampsia, and rupture of the membranes. We need to get better at talking about risk and management of that risk.

Women are intelligent, resourceful, resilient, we can cope with the real facts. So many times I have heard "oh I don't want to hear about what can go wrong, I don't want to be frightened". And thought I can understand, sure knowledge gives us power to make decisions and fight for good care.

We deserve it, and sure as hell our babies do too. 


Wednesday, 5 December 2012

Ultimate Christmas Song Meme

Yes I am still here. Life has been very busy at Not Even A Bag of Sugar towers, with work, play and Christmas preparations. So I interrupt my silence to bring you my entry in Mummy Alarm's Ultimate Christmas Song Meme

1. The Christmas song that gets me in the mood for Christmas



This was one of the first Christmas songs I learnt to sing at school, and whenever I hear it I know Christmas is coming.

2. The Christmas song that reminds me of my childhood



Growing up in Australia, though we had the traditional Christmas Carols, we also learnt some Australian Christmas songs, and this is one of my favourites.



3. The Christmas song that I could listen to all year long



This is such a calming and uplifting piece of music, and when sung beautifully is just perfect, too good just for Christmas.

4. The Christmas song that gets me rocking around the tree



Not really into Christmas rocking, this is as close as I get!

5. The Christmas song that my kids love the most



I can only apologise, I love this song, and Joseph adores it too!


6. The Christmas song that I always sing from the top of my lungs



When I was a little girl attending our country church on Mt Nelson, only the adults were allowed to sing this. So now I am a grown up, I sing up loud!


7. The Christmas song that reminds me of the true meaning of Christmas




I love this song, it tells the Christmas story simply and beautifully.

Hope you are all having a peaceful and enjoyable lead up to Christmas.


Friday, 23 November 2012

Six Songs of Me

I love bloggers who break their own rules! Kate runs the great Listography which I join in from time to time, this time its 6 Songs of Me. Usually Listography is five things, but if you can't break your own rules, then really, life is no fun at all. And, late edit, I have 7 songs. So shoot me.

1. What was the first song you ever bought?
I've always been an album purchaser rather than song buyer, but I did buy singles a few times and I can proudly say my first one was "Dominon" by Sisters of Mercy, a song I still love now. And no I wasn't a goth, sadly.



2. What song always gets you dancing?
You can take the girl out of Tassie.......I first heard this song at a school social in grade 8. I even managed to dance with a boy I liked (who soon forgot me, story of my life) but when I went back early last year, I heard this song come on in a pub and I was 13 again, dancing with my friends.



3. What song takes you back to your childhood?
I have always loved music and this one is a hard choice. I decided on this one in the end, as this is probably the first pop song I ever heard, and the video is just beautiful.




4. What is your perfect love song?
My enduring favourite love song is this one. I could have chosen the original, but I love this version by Australian comedy group Doug Anthony All Stars, for its simplicity, three voices and a guitar. The lyrics never fail to make me cry.



5. What song would you want at your funeral?
I have often thought about what I would want played at my funeral, is that morbid? I am pretty sure that this would be the last thing played as my coffin disappeared behind the curtain for the last time. I learnt to sing it at school, play it on the guitar and violin, and I just love the lyrics. Every expat Aussie has their Peter Allen moment I am sure.




6. Time for the encore. One last song that make you you.
This was a difficult choice, but for me it had to be a Manchester song, one that I knew and loved when I lived in Australia. This song is so sad, yet has an element of hope to it too, in the melody if not the lyric. Manchester is my spiritual home. When I moved here, things felt "right". My life began when I arrived here, when I walked along Deansgate, up through St Peter's Square, into Picadilly Gardens it all felt familiar. This song encapsulates all that is amazing about this city I have grown to know and love.




Here is my cheat song

Unless you've been living under a rock, it's been 5 weeks since I "came out" and talked a little about things. I've been undergoing counselling and am on medication for anxiety and post traumatic stress. This song is my victorious song. When life threatens to swamp me, and memories are getting me down, this my anthem.


Thursday, 22 November 2012

Justin's Annual 2013

It's hard keeping up with a 3 year old boy and their fads. So far we've got Iron Man and Spider Man and Power Rangers vying for attention. However, one person Joseph always goes back to is Justin, whether as Mr Tumble, one of the characters in Gigglebiz, on Justin's House as himself or even old episodes of Tikkabilla. Justin Fletcher has been a constant during Joseph's short life, going back to babyhood when we used to watch Something Special snuggled on the sofa.

I love Annuals, and its a lovely tradition to carry on with your children. This Annual is bright, colourful and full of activities. Joseph has enjoyed both reading it with us, and on his own too, and loves the stickers.

The Annual is widely available and makes a lovely stocking filler for Christmas, or perhaps something to entertain an excited child on Christmas Eve, snuggled up in new pyjamas waiting for the other jolly man to arrive!

You can pick up the Annual at supermarkets and bookstores, and its currently on offer at Amazon

We were sent an annual to review, all opinions are our own.

Saturday, 17 November 2012

Music and NICU - My top 5

Anyone who knows me will know that I love telling stories with music. When Joseph was in hospital I had lots of relevant music on my iPod quite accidentally. I have never had the heart to remove any of those tracks! Now this top 5 has been collated with some help from my Facebook page and Twitter.



1. Wires by Athlete has to be first. I had this on my iPod and didn't even know it. It was written about a premature baby. It came on random when I was expressing one morning. I had milk everywhere, mixed with tears. I listen to this song now and it brings all those emotions flooding back.

 

2. To Make You Feel My Love by Bob Dylan via Adele has always been a song I've loved, and maybe its not a natural NICU song, but I think the lyrics are appropriate. When you have had a premature baby you worry that they may not feel your love, stuck in a plastic box, suspended in a half life. I felt like Joseph had to make his mind up, and this song just summed up the guilt and regret I felt.



3. The Scientist by Coldplay via Glee this song was on my iPod too (not this version I just love it), and I felt it just hit the spot. "Nobody said it was easy, nobody said it would be this hard" just summed up how I felt. I just wanted to go back to the start and make this pre eclampsia history, and start afresh. When on Day 5 I was told that Joseph would not be coming home I felt that line "questions of science, science and progress, don't speak as loud as my heart". My heart was screaming that Joseph would be ok, even though the science was saying no.

 

4. Run by Snow Patrol via Leona Lewis I really love this version, there's something very soothing about Leona's voice. I love the line "you've been the only thing that's right in all I've done.....and I can barely look at you but every single time I do, I know we'll make it anywhere away from here", a perfect song for NICU. I will always associate this song with our time, especially towards the middle, when things got tough.



 5. Rule the World by Take That via Eliott Minor was the first version I ever heard of this song, it too was on my iPod, and I love it so much. "The stars are coming out tonight they're lighting up the sky tonight, for you, for you", it's just so apt and I know it resonates with a lof you as well

I love hearing about the music that speaks to you, please share your NICU songs.





NICU Fairy Godmother



Today has been crazy. It's been wonderful but manic. I have been online since midnight it's now 10pm that is 22 hours! Keeping me company have been some amazing parents, I've met loads of new people, heard some incredible stories, and reignited some old friendships. The community we are in is amazing. We are united across timezones, continents and countries. We have one thing in common, we have given birth to babies born too soon, too small, too sick.

When I was going through NICU with Joseph, I felt alone. I had friends come from time to time, bright beacons in a dark time. Those moments stand out like gold. The friend who came the night before Joseph was born with magazines, slippers and toiletries. A friend who posted a lovely NICU suit that she found on Etsy made by an Australian woman. Someone dropped a couple of boxes of empty birthday cards on my doorstep, these have come in so handy!

As we were chatting today I came up with the concept of NICU Fairy Godmothers. Mothers who have been through NICU who can spread some cheer, hope and light. Whether this be online or if it could translate into something more tangible. Not so much hardcore support, but little glimmers of hope in dark days on the unit, or once you are home with your baby.

Someone who can appear with a cut lunch, or a casserole, or a little care package. Someone who can run an errand, or do your laundry. Someone who can drive you to the hospital, or pick up a prescription. And bake cake. Cake definitely enhances breastmilk production.....

Online, I'd love to see a team of fairy godmothers who can send a little message, befriend a new preemie mum, just say hi and give a virtual hug. 

Definitely something to think more about!

Just The Beginning



I am so proud to host this beautiful post by my good friend Jane. I had the pleasure of staying with Jane and her family earlier in the year, and was totally entranced by Harry, who is an absolute star.
Her story illustrates that having a baby prematurely is often the start of a long, sometimes frightening, often frustrating journey. Here is their story.

 
My son Harry was born at 24 weeks and five days weighing 1lb11oz. He was a fighter from day one and although there were days when it was touch and go, after four months in NICU he came home weighing just short of 7lbs. I was over the moon when he came home and immediately got stuck into taking Harry to the normal baby groups and meeting other new parents. The only differences then between Harry and other babies his age was that he was smaller than them and that he was on oxygen. It sounds na├»ve now but it never crossed my mind that he would have long term problems. 



However, as time went by it became clear that Harry’s development was significantly delayed and that he was falling behind other babies his age. We saw various Paediatricians and Consultants and it became clear that Harry’s early birth had not left him completely unscathed.  In the past 18 months we have been through and MRI scan and genetic testing to try to determine the cause of Harry’s global developmental delay. The tests did not lead to a concrete diagnosis for Harry. In some ways I see this as a good thing as it means Harry is not labelled and there are no restrictions on what he may achieve. On the other hand, a diagnosis would have made the future clear. Not having a diagnosis sometimes feels like we are drowning in a swamp. 

So, I have had to adjust to having a child with additional needs. This article sums up well how I feel about this. It is isolating having a child with special needs. There comes a point when it becomes impractical to go to toddler groups as your child does not fit into any of the normal categories and the questions become very hard to answer sometimes. It is also hard watching my full term son meeting milestones much earlier than his brother. 

There are good things about having a child with additional needs though. It does make it all the more special when Harry does meet milestones. Harry didn’t walk until he was three but it was a very special moment when he took his first steps. It was also truly amazing hearing him utter his first words. After everything Harry went through to stay with us, it has made me treasure him all the more. Having a premature baby and watching him fight to survive taught me to not give up on things so easily. Having a child with additional needs has taught me to be more patient. After all life is not a race. I have learnt that it doesn’t matter how long it takes to get to your destination, it’s enjoying the journey that counts.

That Bloody Hodges Woman

This is inspired by something that happened one morning in the Neonatal Unit. There were three junior doctors all sitting in the nurses station, two with their backs to the door, one facing the door. I had arrived earlier than usual, and bypassed the station to go to the milk fridge. I was sorting the milk when I heard this conversation.

Fierce? Who me?


"Oh, she'll be here soon", Dr A says, looking at the clock.

Dr B looks at him "no she's on a day off today, sister won't be back until tomorrow, relax man". Turning to a game on the computer.

"No no, not her she's a pussy cat compared to that bloody Hodges woman, she'll be here any minute, just in time for my rounds".

Dr C raises his eyebrows "Kylie? She's lovely. You just don't know how to speak to her. She just cares about her son  She is his mother and his advocate, its her job, nothing personal, I get on fine with her".

I pause around the corner, wanting the ground to swallow me up. I daren't move any further lest I am rumbled. I can't leave the unit, as I am expected for kangaroo care. I am frozen to the spot.

Dr A sighs as he continues "I don't know what her background is, but she leaves me for dead. She asks questions that are well thought out, like a university professor. She knows the medications, the numbers, she makes me feel stupid. I feel like I am always under scrutiny, she scares me".

I start to move, I can't really hide behind the pillar forever, though I want to. 

The other doctors smile. Dr A straightens up. "that bloody Hodges woman...." he pauses, "Is standing right behind me isn't she".

I smile tap him on the shoulder and say "Yes its me that bloody Hodges woman, and don't you forget it!", with a big grin.

That was a turning point. From that moment I felt everyone start to relax and treat me more as an equal that someone to be patronised. Parents are an integral part of the team, which everyone needs to understand and respect.

And we can be fierce, we can be scary, we can be overprotective. However, with empathy and understanding, we can work together.

Because we all want the same thing, a healthy happy baby. 


Dear NICU Nurse

This post was inspired by chat I had on Twitter this morning with A Party of Seven a wonderful blogger who just so happens to be a NICU nurse.

Dear NICU Nurse,

I am in awe of you. As I watch your fingers dance over my baby's tiny body, deftly moving between the wires and the tubes, I give thanks for your skill and your expertise. Ignoring the beeps, watching intently the movements my baby makes, the colour of his skin, you make sure my baby is safe. As you silently, carefully measure such tiny amounts of medication, checking each one off with a colleague, I marvel at how calm and methodical you are.



I appreciate when you come to me in the morning to give me an update. When you quietly whisper in my ear that the consultant is considering a medication change, a procedure, the addition of fortifier, giving me a heads up to the discussion that is to come. When you leave me a little note on a piece of hand towel, or a leaflet about a complication. 

I thank you for the way you carefully teach me to give breastmilk to my baby in a syringe. You teach me how to wash his impossibly small eyes with a cotton wool ball that in comparison looks like a giant cumulonimbus cloud. You show me how to lift his bottom up to change his nappy, but not too far lest some sausage like poo should shoot across the incubator hitting the perspex barrier to the outside world.

You patiently teach me about developmental care, explaining why you must cover his incubator with this giant cloth. You keep the nicest sheets, the ones with cat and the fiddle on them, tucked away so that I can make his cot look homely. You make sure his clothes are kept separate and not mixed with the hospital laundry, never to be seen again.

But I resent you. Try as I might to appreciate your skill, your kindness, your empathy, your experience, there are times when I could push you out of the way and scratch your eyes out. You are not trying to do my job, my logical self knows I am my baby's mother, but my heart sees you as competition. You are standing between me and my baby. You tell me when I can touch and I cannot. When I can see him and when I cannot. When I can hold him and when I cannot. You are the gatekeeper.

Today, though, you have come to me. You have touched my shoulder and whispered in my ear. Today, you see, you have given me the news I have been waiting for. It's time. It's time for my baby to come home. He will not be yours anymore, but you know that he has never been yours, you have done your work until the time that he becomes ready to be mine, to be ours, to be at home with us, his family.

And I see you now, for the caring professional that you are. You were never trying to be me. You were being you.

And I thank you.
 
 


 

Bliss - What They Mean to Me

You will have heard me talk about Bliss on numerous occasions. Before Joseph was born, I used to support a number of charities, but I had never ever directly benefitted from a charity before. Suddenly I felt very dependent on Bliss.

You see our unit, being a smaller Level 2 unit, didn't have Family Support Workers or counsellors. We had the nurses but very often they were very busy, and didn't have the time they would have like to spend with us as parents.

The very first contact I had was with their Parent Information Guide. I drank in every word, getting glimmers of hope, but also a very clear picture of the obstacles ahead. I hung on to that booklet and referred back to it often.

The next contact was on Day 5, broken and weeping I rang and spoke to a lovely parent volunteer who had stood where I had stood, who reassured me, who spoke to me gently and helped me regroup. Joseph was critical at the time, and I was terrified. I will never forget that lady's voice telling me that things could be ok. Not that they would, but they could be.

My husband rang them when he was worried about me. I lost the plot for a bit, the endless worrying, the ups and the crushing downs, and the medication I was on for my blood pressure, as well as the pressure of expressing breast milk, all had a dire effect on my mental health. I felt a huge pressure to be calm and happy all the time, which made me very difficult to live with.

I rang Bliss a number of times during Joseph's stay, and afterwards as well. Now Bliss have even better systems in place, including the new Bliss Buddy system where parents can be matched with a Buddy, like a mentor, before they take their baby home. Someone who can be a "go to" person and give vital reassuarance and support.

Through the Bliss message boards I have met loads of premmie mums who have been a constant source of support and deep friendship. Without them, I have no idea how I would have coped.

I am proud to be associated with Bliss and proud to be a premmie mum. 



So Who Am I And Why Do I Blog?

In February 2010 I started a blog, with this tentative post. I had absolutely no expectations. I thought some of my premmie friends might be interested in my thoughts, and maybe my family. I knew absolutely nothing about blogging. I didn't know anything at all about parent blogging or mummy blogging. I just felt so traumatised by having my son at 27 weeks due to pre eclampsia some 8 months earlier, and everyone seemed to be sick of hearing about it. I felt I needed somewhere just to go with my thoughts and a blog seemed like a good idea.

It wasn't until the lead up to Prematurity Awareness Day 2010, as it was known then, that I realised that blogging was quite a powerful thing. Beverley at the March of Dimes asked me to join in a blog hop. I was so green back then I didn't even know how to put a badge on my blog, I didn't have the first clue about HTML and she walked me through it on Twitter!

I attended Cybermummy in 2011 and that's when my blogging started to reach a new level. I found my "voice" and started building my social media skills especially Twitter. I attended the Blogging for Charity workshop and was so inspired by Sian To and some of the other bloggers I met. Imagine my delight in 2012 when I was asked to speak at the very same workshop!

I love social media. For parents of premature babies its such a lifeline. We are spread out all over the place, often we don't want to go out and mingle due to infection control, or we are nervous about meeting people face to face. Social media is a great way to get to know other people in the same situation, and get advice and support.

I never expected that charities like Tommys or Bliss would be interested in blogging, and I've been amazed and overwhelmed by their supportiveness and the inroads we have made in social media involvement with the true stakeholders, parents. When I looked at some of the Twitter chats yeseterday, I felt immensely proud of what we have achieved, and that we have active parents using social media to raise awareness.

I never expected, on this blogging journey, that I would see my name on the Independent website, thanks to Tommys for putting me forward. I never expected to be on BBC radio or ITV television either. I just thought all I would do is blog my heart out.

I have had immense support, from Britmums, I cannot tell you how supportive they have been of me, sharing posts, promoting Twitter parties, offering support. They are just amazing. If you join no other network, make it this one. And thanks to Netmums and Mumsnet too, for sharing posts and offering support too.

I have had immense support from the parent bloggers community, especially Nickie at Typecast. There have been many many others, always willing to help. I have felt supported, cared for and loved.

I am not special. I am just one mummy who decided to start a blog. I never set out to be an "expert" or better than anyone else. I am just enthusiastic, and passionate. I love to help other bloggers, and I'd love to see lots and lots of premmie mums blog, and there are loads out there that I will share with you later today.

Blogging has given me so much, its given me a voice, a passion, and so much joy.


Did You Kangaroo?






The hardest thing about having a premature baby is not being able to hold them. A mother's instinct is to hold your child close, to feed them, to love them. When they are born prematurely you can't do that. They need to be kept in incubators, safe from infection, in a controlled environment.

It is becoming increasingly clear that kangaroo care has enormous benefits for the baby and the parent. There is a lot of evidence that kangaroo care teaches the baby how to regulate their own temperature, and also improves neurological development too. In developing countries in particular, where babies are born at later gestations than Joseph, kangaroo care can eliminate the need for incubators. Kangaroo care is natural, free and the easiest thing in the world.

The doctors at the our hospital laughed, that I was Australian, and doing kangaroo care. Never mind the fact that Kangaroo Mother Care originated in Colombia and has nothing to do with Australia at all.

When I held Joseph like this, for me, it was healing. I felt like a "proper" mum. I didn't want to ever let him go. We didn't get kangaroo care until he was one month old, but now I know that we could have been doing this at a much earlier stage.

I would urge any parent with a baby in NICU to push their staff. I wish now I had challenged this more. There are lots of resources to help but the most powerful one is the Best Beginnings Small Wonders DVD.

Kangaroo care is healing, it is sacred time, and the fact it benefits both the parents and the baby is wonderful


My Little Fighter

When Joseph was a day old I was by his incubator and one of his doctors was examining him, talking to me whilst he was doing it. He leaned in close to check his skin tone and suddenly "thwack!" that board you can see on Joseph's arms hit the doctor's face. "Well, this one is certainly a fighter", he said, smarting a bit, from shock more than anything!

At first, I didn't like that description, "fighter". To me a newborn's life should be peaceful, snuggled in a mother's arms, not lying in an incubator fighting. Infections, fighting to breathe, fighting to maintain temperature, there are so many things these tiny babies have to fight in order to survive.

And, along with that fight, comes guilt. This was "my" fault. I should have kept my baby safe, I have failed. If I was only a better mother, then this would not have happened. My baby shouldn't have to fight, this should have been my fight.

Stop. You learn, hopefully, that there is no leverage in that line of thinking. This is how it is. This is reality. Joseph knew it, and really I knew it too, that this had happened and we just had to fight, taking each hurdle in our stride.


It's funny, when I was working through Joseph's photos there are so many with his fists up in a fighting pose, though this one is by far my favourite. Joseph put up the fight of his life to stay with us against the odds.

He inspires me everyday. Whenever I think "this is too hard, I can't go on" I think of my tiny 1lb 7oz baby thwacking that doctor on the head thinking "just leave me alone, will you?"

When you really get to know a preemie, you are blessed. Every one of them I have met has a truly amazing spirit.

I am blessed.

Best Beginnings

Sometimes you just take a photo. You have no idea that one day you will look back at it with absolute amazement.

I had no idea, until I owned one, just how small a baby could be. In this picture Joseph is way under his birth weight of 1lb 7oz. I don't actually know how small he got, I was always too scared to know his weight.

I give thanks every single day for the care we both received. It wasn't always perfect, this is true, but it was wonderful. The NHS saved my life, and gave me my very much wanted and dear son.

There are three things on World Prematurity Day that I am really passionate about. The first, that I will blog more about today and you will see reshared and retweeted, is care for mothers and preemies in the developing world. Regular readers will know my favourite statistic, that the introduction of kangaroo care around the world will save 500 000 lives. That's basic mothercare, that is free.

The second thing I am absolutely passionate about is Family Centred Care. That is why I am proud to support UK charity Best Beginnings and its Small Wonders Programme centering around the Small Wonders DVD. I was proud to attend the launch of this DVD, having helped on the testing panel. I love it, and have met some of the mothers who were featured on it.

The third thing is about prevention. We know so little about the reasons behind premature birth. The numbers are huge, and they aren't really going down, and we need much better care for pregnant women to prevent prematurity from happening in the first place. I just know there are answers there.

Every mother deserves to take home their baby. There were times in our journey where I thought we would lose Joseph. But, he is here, he is healthy and we are a happy family. Everyone deserves that outcome. Everyone.




Friday, 16 November 2012

Bliss and World Prematurity Day

Tomorrow is World Prematurity Day. Bliss and I will be holding a Twitter party from 1pm until 2pm and would love you to join us. Look out for the hashtags #Blisswpd and #worldprematurityday. Join in to chat about the support our tiny babies and their families need from Bliss and how Bliss achieves this. I would love to see lots of you there, and we will be sharing stories and pictures. If you have a few minutes spare please watch this lovely video.

Also today, over on The Independent is a piece from me called Motherhood Interrupted which I would love you to read. 

I am also featuring over at Mummypinkwellies today and would love you to visit me there too.  



Perhaps unusually I knew about Bliss before I had Joseph. I used to subscribe to a magazine called Candis, and at the time it was a charity partner with Bliss. I learnt about the vital work they do providing information and support to families with premature or poorly infants. I would donate a little bit of money where I could. I never thought in a million years that one day I would directly benefit from Bliss.

What I have noticed in my journey is that units vary wildly throughout the country as to how well they support families. I know units are really keen to get better at family support, but with so many demands on resources, it is not always possible for units to support families in the way that they would like. Bliss fill this gap with staff, with volunteers, with information written in plain English, that not only covers the baby's time in hospital, but beyond into their early years. Bliss also helps fund research projects, and campaigns to ensure babies are on the politicial and NHS agendas.

My first contact with Bliss was when Joseph was just born, and I was given the Patient Information Guide, which outlined everything I needed to know about Joseph's stay, and the possible complications we encountered. The booklet was reassuring and helpful and I felt that Bliss was there alongside me.



Both my husband and I phoned Bliss on a number of occasions, to have things explained or just to have a cry with people who understood just what stress we were under. And importantly, to get some hope. Bliss gives hope. Bliss have paid staff but also have a huge team of volunteers who have sat where you are sitting, by the side of an incubator with hope in their hearts, fear sitting alongside, and tears stinging their eyes. Not one of us will experience the same NICU stay but we do have a bond and understanding that when times are tough, you can use as a really powerful resource. Speaking to parents who had been there was amazing for me. It gave me hope that one day, this would all be over and I would get to be a proper mummy.

When you have a baby so early, or poorly, your head gets filled with statistics, information, medical jargon. Sometimes the fact you have actually had a baby gets totally lost. Speaking to a parent with similar experiences helped me to get my baby back, to really learn what life might be like after the unit, and get some tips for getting through each day.

Now, I am in that position to give someone else that support and that strength, and that is such a powerful thing. I give thanks everyday for Joseph, and the experiences we've had, that whilst I wouldn't wish them upon anyone, I am a stronger, more compassionate person as a result of everything we have been through together as a family.

Thank you to everyone of you who have offered to tweet, share on Facebook, blog and help raise the profile of our cause, our special babies. 


Thursday, 15 November 2012

Why You Need to Be Concerned About World Prematurity Day

There are two twitter parties taking place for World Prematurity Day. The first of these is on Friday as part of the #borntoosoon network, Tommy's are taking part in the Global Twitter Relay at 1pm on Friday. Please join us to talk about preventing premature birth and find out some exciting news about developments in this area.  Tomorrow I will tell you more about Saturday and about the work Bliss are doing for World Prematurity Day.



It's natural, as the owner of a my own premature baby, born at 27 weeks, that World Prematurity Day should be of concern to me. But it should concern you as well.

Pre-term birth is a public health issue and even a feminist issue, and let me tell you why. We know that pre-term birth is more likely to happen, from a global perspective, where women have less power. Where women have poor access to health care, to sound nutrition, where women are impoverished, where women work too hard, and have high stress levels, where women are encouraged to give birth too young, and have too many babies too close together. That is indisputable. 

Many of the treatments of complications that cause prematurity, and most pointedly treatments that can save the life of a baby are simply not made available in many communities around the world. Some of these things are very cheap or indeed free. There is no reason why in every community, kangaroo care cannot be taught to mothers of pre-term infants. It's basic mothercare, and can save the life of a fragile baby. The Born Too Soon report estimates nearly 500 000 babies can be saved through this alone. 

On a local scale we know too that pre-term birth affects young mothers, mums who take drugs, mums who have poor access to ongoing education. We also know that pre-term birth happens for no identifiable, easy preventable reasons too. Research into pregnancy complications and pre-term birth is very poorly funded.  Even in the UK we see huge discrepancies in care from one NHS primary care trust to another. And that isn't right.

Pre-term birth means a lot more than just small babies. Babies born prematurely often have poorer long term health outcomes. Also, some of the conditions and factors that cause pre-term birth adversely affect the health of the mother, often catastrophically, infection and pre-eclampsia don't just take babies. They take mothers too.

Pre-term birth carries huge social and financial cost. It is right that we invest in these tiny lives, but surely we need to look harder at what we can do to reduce the risk of pre-term birth in the first place, and if pre-term birth does happen to have the very best in care available at a local level.

What pre-term birth has taught me, is that I am passionate about the health of women and babies everywhere. I think its wrong for any woman to be denied access to good antenatal care and preventative treatments. If you think its wrong, join me. Send a tweet, retweet others, share on Facebook. There will be stories galore for you to share and discussions to join in. Let's make this day matter.




Wednesday, 14 November 2012

1 Baby 30 Seconds - A Guest Post from MummyPinkwellies


K at MummyPinkwellies has blown me away with this beautifully moving post for World Prematurity Day, she has worked tirelessly to make this day a huge success. I am so grateful to her for her energy, passion and knowhow. She is a perfect partner, and inspiring mum, and I am so glad our experiences have brought us together. 

Also today, over on Mama Baby Bliss there is a guest post from me about World Prematurity Day.  

When Kylie asked me to do a guest post over here for World Prematurity Day I jumped at the chance. Then she suggested I write something about Angels or Spirituality having recently written this post and I got writers block. I find that this always happens when I’m directed to write something, or have a deadline. Usually I can write fairly easily, it just flows, but I started this post 3 or 4 times before I wrote what you are about to read.

Then, as I was deliberating over what to write I read a post on Facebook about a preemie who’s story I had been following. She had sadly died the day before. It caught me out, as this kind of story mostly does. I read it and sobbed. Sobbed for the tiny fragile little girl that had fought so hard in the short time she had lived, sobbed for her mummy, for her family, sobbed because sometimes life is so bloody unfair.

Then literally as I was recovering from that news I then saw this post on World Prematurity Day’s Facebook page





I was staggered. I know the figures, I could tell you them in my sleep. 15 million babies are born prematurely each year, 1 million of these don’t make it. But I hadn’t added it up. Premature birth kills 1 baby every 30 seconds. That’s unbelievable. It’s epidemic. It’s huge!

For me, it means there are 1 million more angels created every year, because yes I do believe in angels. I don’t understand why God takes, or allows to be taken, some and not others. I don’t even try to understand, that is a question we probably won’t know the answer to until we move on to the next world ourselves. I just know, in my heart, that there is a God and I have faith that angels exist.

I don’t know how I would have coped if Littlebit hadn’t have made it. I can’t even begin to imagine it and I don’t want to try to. It’s too devastating.

I know I probably would have hated God, to begin with at least, for taking her from me. But I hope, eventually – probably a long time later, that I would have taken strength from the fact that she was in heaven, with all my loved ones who had passed before, and that she was looking down on me and watching over me for the rest of my life.

I know that she would live on in my heart. Forver.

“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.” Anne Lamott.

I really hope I’m right about angels. Awful though it is that these poor helpless babies don’t make it, heaven must be a joyous place with them all up there.

Please join us on Saturday 17th November to raise awareness for these babies. The more people who know about prematurity, how it happens and how, in some cases, it can be prevented then the more lives might be saved. Wouldn’t it be wonderful if some of these angels stayed with us here on earth because we shared the message?


Image courtesy of  "Timeless Photography" via FreeDigital Photos