Monday, 30 September 2013

Britmums Live and Paying it Forward

The first blogging network I ever heard of was Britmums. When I signed up I started to meet other bloggers, and started learning a lot too, very quickly. I loved getting to know fellow bloggers. In 2011 I attended Cybermummy, the forerunner to Britmums Live. After this my blogging really lifted, I met a lot of other bloggers, I learnt some key skills and my blog started to really grow.

In 2012 I attended the first Britmums Live and loved it so much, and enjoyed watching my blogging further grow and develop. I was thrilled to be part of the bloggers working with charity panel and met Camilla Batmangelidjh and chatted to her for ages which was a huge honour and an experience I will never forget.

Of course this year was incredible. I was part of the Blogging with Heart panel with Hayley from Downsside up, the incomparable Mammasaurus and the lovely Liska. It was an honour to be able to speak from the heart about what blogging has done for both me personally and the blogging community. And of course the highlight was reading Jimmy Savile is dead, a blog post that really did change my life.

I have spent a lot of time thinking about the experience and now I am closing this blog I wanted to pay it forward, some of the amazing experiences I have had. I have chosen two bloggers and have purchased their tickets to Britmums live.

The first is Single Mother Ahoy. I got to know this blogger through #pbloggers chat on a Sunday night. She was talking about Britmums Live and sponsorship. I decided that I would buy her ticket so she could concentrate on blogging and hopefully doing some charity blogging for Gingerbread.

Secondly I wanted to choose a dad blogger, so I chose Dad Who Blogs. I wanted blogs that had been around for a while, that had varied posts with a parenting focus but also weren't scared to discuss issues close to their heart. Both these bloggers haven't been to Britmums Live before. Coincidentally both these bloggers have had premature babies, but on the later end of the premmie spectrum.

I was going to stay anonymous but I felt I wanted to share these two blogs with you. I only hope both these bloggers get as much out of the Britmums Live experience as I have.

Just a reminder that the early bird rate ends at midnight.

Saturday, 28 September 2013

World Prematurity Day November 17th

Click here to sponsor me


World Prematurity Day has always been really important to me. I know there are seemingly days for everything but World Prematurity Day is one that really resonates with me. Not only is it a day to celebrate, its also a day where organisations from all over the world get together to talk about prematurity, about solutions, about treatments and about our precious babies.

This year like last year, I will be doing my 24 hour social media marathon, tweeting, sharing, chatting, blogging and getting the word out there about what's happening in the world of premature babies and the work Bliss are doing here in the UK, and supporting the partners around the world, all of us working together.

I've also decided to dye my hair purple. Purple is the offical colour for World Prematurity Day, I've always wanted to try something outlandish! I will have hospital visits all week from November 17th spreading the world about Bliss so it is quite a daring thing to do.

If you would like to join me in dyeing your hair purple, or painting your nails, or maybe having hair wraps or wearing a wig that would be great. Like me you can set up a fundraising page and get people to sponsor you. Make sure you get lots of photos to share on the day!

If you would like to sponsor me you can find the link here:-


Please stay tuned for more official Bliss activities, nationally and also around Manchester.



Friday, 27 September 2013

My Preemie App - Review

When Joseph was in hospital I didn't have a smart phone, it was 2009 and whilst of course there were smart phones around, I hadnt joined the revolution. I didn't know anything about apps. Now 4 years later I have had an android phone, and now an iPhone and iPad and apps are an every day feature of my life.

Several months ago Preemies Authors started following me on Twitter. I finally down loaded their app and had a play around with it. I wanted to share my thoughts. Now you can't adjust the year in the app, so it looks like Joseph was born this year!

The app is based on a book Preemies - the essential guide for parents of premature babies  written by Dana Wechsler Linden, Emma Trenti Paroli and Mia Wechsler Doron, M.D. Their story is amazing and I'd urge you to read through how this book came to be. I have a copy of this book lent to me by a fellow preemie parent and will review it another time.

Just a disclaimer that the book is American, and a lot of the content of the app in the guide section is written for a US based audience. This does in no way impede the functionality of the app and if you have a baby currently in hospital I wouldn't hesitate in recommending you spend the £2.99 to down load it.

 Here is the front screen, as you can see the design is beautiful. I love the kangaroo imagery and you can change the colours too. The main sections are a diary, a place to record weight, length and head circumference, a place to record any questions you have, and the memory box, which gives suggestions for momentos you might like to save.

The highlight of the app is the diary. You can create separate diaries for mum, dad and other family members. The diary has prompts where you can load photographs and record key moments. For me its ideal as you don't have to think. I couldn't keep a diary when Joseph was in NICU as I couldn't order my thoughts, something like this takes a few minutes and you are guided through it.

 The chart section is self explanatory, and a lovely momento to keep. Also handy for post discharge too, to check against the red book the health visitors use. Ours kept forgetting to adjust and the chart ended up looking like the Big Dipper at Blackpool Pleasure Beach!

The reminder section is another handy part of the app. Really good for jotting down those in the middle of the night "oh I must remember to ask x in the morning". 

 
The final section is the treasured momentos which is a checklist of things you might like to collect and put away for your baby.

I think the app is beautifully put together, visually its just gorgeous and very "nursery" like, not clinical at all. I personally think its ideal for a new parent because of its simplicity.

I have some other ideas of what I think an app could include, such as specifics on expressing, and charts for mum to fill out. A feeding chart would also be useful, particularly on discharge. This app is very much geared to the new baby and parents navigating their way. It's entirely baby focussed rather than hospital focussed and I think its beautiful. It was so easy to use and I highly recommend it.

I purchased this app, and all thoughts are my own. All images are screenshots and belong to My Preemie App

Thursday, 26 September 2013

Life and Death in the NICU

This is a reflective post, and some of the content is sad. Please don't read if you don't feel that its the right time for you. 



My thoughts this week are up and down, and I wanted to write them down and share them with you all. As most of you know my blogging, campaigning and volunteering lead me to a lovely job with Bliss UK's only dedicated special care baby charity. My job is lovely I get to find volunteers and place them in hospitals and in the community to give parents vital support, ultimately supporting the babies.

I still keep in touch with the broader premature baby community and was delighted to meet Beth who blogs as The Cotton Wife, an Australian mummy and amazing advocate for parents and their babies. I found this post of hers which I absolutely adore, Dear NICU Mum. I would encourage you to read it.

One thing I never do on this blog is share statistics of survival. I never have done and probably, seeing as I am finishing actively blogging soon, never will. There's a few reasons for this, one is that statistics are never fully reliable. Another is that in a sense statistics are meaningless. When I asked Joseph's paediatrician before he was born for numbers and chances she said to me this "the only thing that matters is whether your baby makes it, the numbers are not relevant so lets talk about what we know to be true, and that is that he is alive, he has had the steroids and we are ready, yes he is small, he has a long road ahead but let's stay positive".

When Joseph was born I spent a lot of time on the Bliss message boards. I met lots of different mums, and one of them was Nicky with her son Ethan born at 24 weeks. They had a long road, which had lots of bumps, bends and twists. You can read all about Ethan here. Sadly Ethan's battle with prematurity was a very long one, and he sadly passed away, not reaching his fourth birthday.

Recently I was at a meeting discussing a clinical trial and one of the things we had to do was look at a list of babies who had passed away. I was the only parent of a premature baby the rest were clinicans. "The number of babies is 19, which is much lower than predicted." The room seemed happy. To me I could picture every one. Their data was anonymous all I knew was their gestational age, the age they passed away, and the briefest of reasons. But to me each baby had a face, a mum, a dad and maybe siblings. For all that I know that of the 80 000 babies who are admitted into special care each year in the UK not all of them will come home, or start school, this still hurts. It hurts me that we can't all have the same outcome. And I feel guilty.

I love Bess' letter Dear NICU Mum but at the forefront of my mind today is that for some parents, perhaps even parents reading this now, this won't be true for them, their journey will have a different ending.

I have friends who have left the NICU with their hearts shattered into pieces. Or have left NICU for their hearts to be shattered later. I can listen, I can signpost, but I feel helpless.

In 2010 I attended Cybermummy the forerunner of Britmums. Whist I was standing around feeling lost the most beautiful woman came up to me, gentle with lovely curly hair, and a shy smile and introduced herself as Merry, both of us having been nominated for a MAD blog award in the Inspirational category. Merry lost her son Freddie, a term baby, in the NICU at 11 days old, the year after Joseph was born. She writes so beautifully and I would urge you to read this post on her blog A Patch of Puddles.  There is love and support there, but you have to know where to look.
 
How do we support these parents better? What do we say? What would our letter look like? Do I dare write one?






Monday, 23 September 2013

Mad Blog Awards - Most Outstanding Contribution



This video really says it all.

Watching this its quite sobering the company I am in . Bloggers I have aspired to, some I have helped, all of whom have helped me.

Being in this category for the MAD Blog Awards was amazing and such an honour.

But I knew I think we all knew who the Most Outstanding Contribution award would be given to.

Jennie.

Jennie has blogged her heart out. She has given us Matilda, her blog baby, from birth to her very sad death at just 9 months old. She blogged eloquently, beautifully, painfully.

Unbelievably she has had opposition, she has been hurt all over again, though nothing can compare to losing your baby, part of your heart.

Jennie has done more than that. She has brought a sometimes fragmented blogging community together, working together to help the Lullaby Trust so that mothers don't have to go through this heartbreaking trauma.

Everyone one of those bloggers nominated are outstanding. I can vouch for every one of them. We all have made an enormous and powerful contribution in our areas and beyond.

There are no losers, but there is one outstanding winner.

I love Jennie, I have known her before she was famous, when her twins her still in NICU I have seen her grow and develop as a mummy and a blogger.

I am immensely proud of what she has done. Of what love has done.

However I am proud of every single one of these outstanding bloggers, and I am so very thrilled to have been considered worthy enough to be there amongst them.


Sunday, 15 September 2013

Decisions

As most of you will know, since writing Jimmy Savile is Dead I have been on a journey, to come to terms with my childhood and, to put it bluntly, grow up. I have found the most amazing therapist who as helped me, and have had a team of friends who have also been there for me and guided me and hugged me and wiped away my tears.

Next month is the anniversary of "coming out" as it were, and next week will be my final therapy session. I still have seven remaining if I relapse and need them, but Dr F and I have decided that it looks like I have the tools I need now to continue to improve.

Which brings me to Not Even a Bag of Sugar. I was talking to him yesterday about this blog and everything I have done with it and achieved through it. Finally the confirmation came to me. It's time to think of winding up.

November 17 is World Prematurity Day, and will be third as a blogger. I will do a 24 hour marathon to raise awareness and funds for Bliss then I will call it a day on November 18th.

I am not a "premmie mum" anymore. And writing general parenting blog just isn't me. I am busy with work, and I've had another revelation, I don't enjoy myself anymore. My life is just work, Joseph and online stuff and I need to broaden my horizons again. I need to swim, walk, write, read, crochet, knit, watch movies, see people. And that all takes time.

I am working on migrating the content on Sugar to a website, or perhaps even migrating it to someone who has an existing service for parents of premature babies.

I love Not Even A Bag of Sugar, its been my therapist, my friend, my support. The friends I have made through it have been there for me through thick and thin.

I will still be blogging sporadically at Kykaree and who knows, maybe another blog awaits me somewhere.

It's time to say goodbye to that part of my life, to the sadness, the regret, the guilt that as much as I try to exorcise I still have. I need a bright new future. Working for Bliss is amazing and I love it so much, and its enough. I can give back through that and that's important to me.

Please follow my journey in the next two months and contact me to find out more about getting involved in World Prematurity Day.

Tuesday, 10 September 2013

I Miss You Michelle - World Suicide Prevention Day

Today is World Suicide Prevention Day. 

Suicide is a very difficult topic to talk about, and sadly something that has touched my life too many times. I have lost teachers, friends, acquaintances and colleagues to suicide. I have attempted suicide. I have had suicidal thoughts as most recently as a month ago. This post is to raise awareness. If you think you might be triggered please do not read. There is loads of support out there, I have found Mind Charity and their Elefriends chat room very helpful.  

I have blogged on my personal blog too today. 




My darling Michelle

I am in grade 4 you have just started grade 3, you are new. You are playing on the monkey bars on your own with your soft toys. The teasing has started. I am asked to befriend you. You are blonde, petite and pretty. It's no effort to be your friend. I am only sad that we can't be in the same class.

Our friendship develops, not always close but we always look out for one another. I take your photo on school camp. You are an outsider, like me. There are secrets in your head and heart that I will never discover. I move to high school and the following year you join me, we are still friends. I move to college and you join me there.

One day we walk through the bush together to get our bus. Its the last day of college before half term. You confide how hard you are finding the school work, how lonely you feel, how much pressure you are under to do well. I listen. I reassure you that college is hard, but that you are smart and resourceful and you will get through it.

I worry, I am not sure what I should have done, because you did seem really low, but you didn't really show signs that there was anything wrong. You didn't cry. You did reach out for a hug but that didn't seem unusual.

Half term is over and I return to college. I go to maths class with Mr Elliott, who I love so much. He is so down to earth and encouraging. P and M, my good friends, are in tears. I ask what's wrong. "Oh shit" they say to one another. "She doesn't know". Michelle. You are dead.

You are dead. Mr Elliott rings the school counselling team and sends the three of us to her immediately, excusing us for the rest of the day. The counsellors explain that you appear to have shot yourself with a rifle.

I feel punched to the stomach. P, M and I leave the college and walk. I feel the need to go to church and light a candle. They are locked. We cry. We walk more. I go into a record shop and buy an album. Joe Jackson's Blaze of Glory. Its impregnated in my mind. Even now when I want to think of you, I play a song from it.

Your funeral is closed. No friends allowed. There is no burial plot. There's nowhere to mourn you.

Your inquest is heard and the details are in the paper. You bought a rifle and ammunition at a gun shop. You were 15. It would take many more years for gun laws in Tasmania to be tightened. A man would have to go on a rampage and conduct a massacre for it to happen.

You were under immense pressure to do well at school. You were experimenting with life, parties, maybe drugs.  There were no other reasons given but it was revealed you had attempted suicide previously. Your parents were criticised for not trying harder to get help. But they missed it too.

I know now it wasn't my fault. I know I did everything I could. I was only a kid myself just a year older and didn't know the signs. You didn't really show the signs. Not to me.

And I miss you Michelle. Still Every day.

Kylie

"You better believe it
You know my dream's still alive
You can love it or leave it
But I'm never gonna be 35"

19 Forever - Joe Jackson




Sunday, 8 September 2013

Starting School

"Doctor, what will the future be like for Joseph, what can I expect?" 

"Well, he will be very small for a long time. We find babies like Joseph can really struggle, and you might find he needs extra support at school, or you might have to think about special school. He is likely to have learning difficulties, and you may need to fight for what he needs."

For any parent, their child starting school is a very big deal. Every parent, no matter what their journey feels a curious mixture of joy, fear, elation, horror, even grief, that their baby is growing up and starting their lifelong journey of formal learning.

The probem for me is that I have found my head right back here. I've had to constantly remind myself that he is a big strong, clever boy now.



For those of us that have had the worry of preterm birth, or a poorly child there are additional worries and concerns.

Last week Joseph started school. Our school has a very throughtful "soft opening" programme that I have found really helpful. It started last year with me attending a parent's evening, then they visited Joseph at nursery, and Joseph visited them with the outgoing reception class. The teacher and teacher's assistant came to see him at home, and I told them my main concerns.

I felt listened to and supported and I'm confident that he will overcome any obstacle in his way, just like he has everything else in his short life.

On Thursday Joseph donned his uniform and started school, just two hours. I wasn't home, I was at work, so my husband took him, and admitted tears in his eyes as he left him there.

Tomorrow is Joseph's first full day at school. Because of this soft opening, I feel ready and I know Joseph is! Bring it on!

Footnote: Joseph is what I call a "simple prem" in school terms. He was due in August but born in May, so I felt he was ready to start school with his peers in his correct year, as he would if he had been born in August.

For many parents this isn't as straight forward and I'd urge you to look at Bliss and the new guidance for summer born children.  

The decision on what you do is complex, and Local Education Authorities vary widely in their knowledge of preterm birth and their attitude to education and when children should start school. Do your research and have your conversations early, and liaise with other parents.