Wednesday 31 August 2011

If I'd Known I Was Having a Premature Baby

I wouldn't have put off that bump shot. I wanted to wait until I looked very pregnant, not just podgy. As a result no pictures of my bump exist. That makes me sad.

I would have spent less time thinking about prams and sleeping arrangements and newborn clothes, and more time putting a plan in place. It was so stressful when he was in NICU wondering when I was going buy stuff, and having to leave him to go looking at shops.

I would have enjoyed my pregnancy more. I hated it so much, and then by the time I started relaxing and enjoying it, it was over.

I would have researched breast pumps, supplementary nursing systems and how to feed a premature baby. I would have been better informed for the struggle ahead.

I would not have bought a single pregnancy magazine. They made me feel worthless and a failure.

I would have looked more into the realities of maternity and paternity leave and been better prepared financially for what was ahead.

I would have thought harder about going home. At around 14 weeks I seriously considered going back to Tasmania to have the baby, and sometimes I wish I had done that.

However, had I known, I would have been scared. I never thought I would be tough enough to get through having a baby in hospital 10 weeks. And I am glad I know that I am not strong enough to do it again.

I am so happy I did not know, and so happy to have my lovely boy.

Tuesday 30 August 2011

A Blog Post about Blogging

It seems a bit weird to blog about blogging, and to be honest there are loads of resources out there to help you improve your blog, and to get it "out there". I am so excited that at the moment there seem to be more blogs springing up than ever, and so many of these are showcasing the life of a premature baby, and I think that's exciting.

So, a blog post about blogging. I started my blog on Blogger for one simple reason. That is what my sister used, and as a regular reader I felt comfortable with Blogger. One of the main other options is Wordpress, which has enhanced functionality, and I think, a slightly better look to it. Some really clever people go self hosted, using either or which gives higher functionality again. I have considered it, but I like to spend my time blogging and supporting my blog through social networking, and haven't got the brainspace or technical expertise to do it myself. So I am quite happy plugging away as is, for now. I did look into hiring someone to help me set up, but the cost was prohibitive.

A lot of people ask, how do you promote your blog? Initially I didn't promote it much I just typed away, and put the odd post on Facebook. I also put the link on a couple of forums that I visit regularly. Eventually I joined Twitter, and started tweeting my posts. However just tweeting posts isn't enough, and I will talk a bit more about Twitter. I also joined Networked Blogs, which I think is very nifty, every time you post it publishes it to Facebook and Twitter without you having to lift a finger, which I find really useful. The bulk of my readers come to be from Networked Blogs.

I have learned, the exceedingly hard way, that it is important to label your posts, for two important reasons. Firstly readers can click on topics they are interested in and find related posts. Secondly, it enhances Google's ability to find you. I am quite proud that my Google hits have gone up since I painstakingly labelled posts I had neglected to do. So if your new to blogging, label. Don't put it off!

Twitter is a great blogging tool, but it is time consuming. Just putting your posts on there can help a bit but the best thing to do is to support that by reaching out and making friends, starting conversation and joining in. I've found a huge community of people on Twitter, and its a great way to get your message out there, and to keep it relevant to what people are talking about.

There are increasing ways to measure your online influence such as Peerindex and Klout. In addition regular readers will notice I have joined the Tots 100 and Wikio indexes. I did this for one reason, to track my own performance. I don't see blogging as a competition sport. I love to blog, but to be honest, one thing I miss about working, is being measured. It takes me by suprise as I hated being listened to and scored on calls at work, and appraisals leave me cold, but I wanted a way of measuring how I was doing as a blogger.

And, that's one of the reasons I use a few tools rather than one, they all have their limitations, and to be honest, at the end of the day, if my blog has helped one person to come to terms with the premature birth of their baby, then I am happy, and my job is done. The measures are just a bit of fun, and also to keep me accountable.

If your blogging already, what are your top tips? If you haven't blogged I hope I have inspired you to give it ago!

Monday 29 August 2011

Joseph's Song - Oh Mammy's Monday Musical Meme

So it's Oh Mammy's Monday Musical Meme time again. I so enjoyed the meme post last week, and this week I really wanted to blog about this song. I think there are two sorts of parents in the world, those that relate to this song, and those who, very happily, don't. The song is Wires by Athlete. I have chosen this live version, as I think with the live strings its just beautiful.

During my pregnancy I watched a lot of programmes about childbirth on Discovery Home and Health. Very often an advertisement for Great Ormond Street Children's Hospital would come on, it would make me cry, this song, images of small children hooked up to wires and machines. However, the most powerful element was the voice over from mum's talking about their children. This mum said "second to thinking he might die, not being able to hold him was the hardest thing". My heart just went out to her, and I wondered how I would cope if my child was that poorly, that sick.

And like a bolt from the blue (which is what eclampsia means) there I was. Sitting in a hospital ward, with a baby with wires coming in and out. On my iPod I had the Radio 1 Live Lounge version of this song. Everytime I went up to my room after seeing Joseph, I put on my headphones and listened and cried my heart out. But I hung on to the last verse "looking at you know, you would never know". And I just hung on to that, like I would hang on to a bible verse, one day, there will be a time when no one will believe me.

We are here. So often people look incredulous when they ask what he weighed. If I show pictures, sometimes you can see a little tear.

I am so grateful to Athlete for this song. I wonder if, as a band, they have any idea that there is a group of mothers who lived this song, and love it, I wonder if they know how many people find meaning in this song. I don't think of it with sadness now, I think of it as the song that gave us hope.

Joseph's song.

Sunday 28 August 2011

10 things you didn't know about me

I have been tagged by Mummy Pink Wellies in this fantabulous meme. Note the sarcasm. I couldn't find a Silent Sunday this week, so I am doing this instead. Oh the joy.

I dunno, I think I'm pretty much an open book, so I am not sure there is much that you don't already know about me and I have to find 10 things.

10 things you might not know about me

1. I loved debating at school and whilst our team never won, I often used to win debater of the week. I just love a good argument.

2. I played violin in the Tasmanian Youth Orchestra String Group, which I loved. I have great memories of music camp and concerts. I was slightly disappointed as I wanted to be a country and western style fiddler rather than classical, but my music teacher wasn't keen!

3. I got engaged at 20 and married 3 months later at 21. And then was divorced by 30.

4. I used to be a disability support worker and once got a wheelchair stuck up the Tamarhorn with someone in it!

5. Until the age of 38 I had never owned a house and always rented, and loved renting. I don't really "get" home ownership!

6. My nana lived with us when I was a teenager and she was my best friend. I still miss her and think about her every day, and she died a long time ago when I was in my second year of university.

7. I studied a Bachelor of Business at university, and all my lecturers used to think I was a lost fine arts student, and tried to redirect me. I should have listened. I think it was the tie die pants that did it.

8. I got a distinction for my thesis but never passed my degree. Business statistics was my nemesis. I just could not pass it.

9. I did a months' mission work in Fiji when I was 20 and it rocked my faith to its core, and made me question everything. It's where I learned that people with disabilities are at particular risk in countries such as this, and I still think about some of the disabled children that I met, who would now be adults.

10. I absolutely love cricket. I have been to test matches here and in Australia, and it's one of the main things that my husband and I had in common when we first started courting.

I'm afraid I am not mean enough to tag anyone, but if your reading this, and feel inspired to do this yourself, consider yourself tagged!

Saturday 27 August 2011

23 Week Babies and the Abortion Debate

Every now and then a story comes into the press, such as this one, about a wee little miracle, born before 24 weeks, and straight away, there's a line about lowering the gestational age limit of termination of pregnancy, currently at 24 weeks in the UK. I wanted to write more about this, and to discuss the issues as I see them. Personally I feel that these are two seperate issues, and I dislike how in the press they are linked together. I know people who have had early babies are often asked by journalists how they feel about later term terminations, and I think that's unfair.

The Abortion Act 1967 is the piece of legislation that regulates termination of pregnancy (TOP)  in the UK, I have used TOP in preference to abortion in this post, because abortion can also be used to explain a spontaneous miscarriage. I have linked to the NHS website which gives an explanation of the Act, and a neat summary of the statistics.

As we can see by the NHS figures, the number of terminations occuring after 20 weeks is very rare, and no doubt, the women that have later term abortions have had a tough and worrying time, perhaps its taken them awhile to summon up the courage, or they have not realised they are pregnant, it happens. Also it is not clear from the summary but I suspect that medical terminations are included in this number, something I am not covering in this post, but may do at a later date.

I have made it clear in the past that my background is Christian, however my feelings have never really changed on this subject. I believe, and always will, that termination of pregnancy is, in essence, a private matter, between the woman, the father of the baby (if present and involved), and their own conscience. I do believe we need laws protecting babies, and to govern medical practice, and I believe we do need debate, about how we, as a society wish to proceed in this matter. But at all times we need to respect that women have a right to be able to choose whether or not to carry their unborn child. And I will not waiver from that. We can say what we like about contraception, about personal responsibility and about adoption, but at the end of the day, can we expect someone to carry a baby that they do not want? I don't believe any of us have that right to force a pregnancy and a human life upon someone, and if we enforce such things in law we know the result. An increase in illegal abortions, threatening the lives of women, and an increase in the suicide rate of pregnant women.

Not only do I believe this about termination, but I believe this about premature babies too. I think, personally, its impossible to have a blanket rule on either of these things based on a gestational number. There are 23 week babies, like the one I have linked to, are bigger than Joseph was at birth. There are 23 weekers who are very small and very poorly. There are 42 weekers born poorly. I think being too obsessed with gestational age is very difficult, because, even with the best scans and highest forms of medicine, the true gestational age of a foetus is a "best guess" scenario. Even with IVF it depends, to an extent, when the embryo implanted.  I do not believe that reducing the rate of abortion below 23 weeks will influence the number of babies born at 23 weeks, the two issues in my mind are, and should be seperate.

I think we do need renewed debate, and take it out of the hands of politicians, so we are all informed about the issues. Apart from the 23 week baby issue, I haven't heard of a compelling reason to reduce the gestational age that terminations of pregnancy are performed at. I am not saying there aren't any, but I haven't heard any personally. And, as the statistics show, that vast majority of terminations are performed below 20 weeks and in fact, at 12 weeks or below.

We all feel, or at least I did, that having a premature baby would never happen to me. Even when I knew it was all going wrong, I thought I'd have six weeks bedrest and my baby be delivered at 33 weeks. I never thought I'd have an early, tiny baby. And just 4 weeks earlier I would have had to make some tough decisions and have conversations, that as a pregnant woman, you hope never to have.

I am upset if women who are in labour at 23 weeks have been told by doctors "well you could abort", as has been reported. I do think the language that is used, the tact and discretion by doctors can be lacking, what is a medical issue and black and white to a doctor, is not seen that way by a mother and father who are experiencing one of the most frightening things a parent can go through.

I think we do need to focus more on unwanted pregnancy, and do better and educating on both contraception choices and on adoption as a valid alternative. For many people IVF is not an option they wish to choose, and the adoption of babies is becoming more and more rare. For many people such as myself, adoption would be a very welcome option.

I think we do need a renewed, robust and informed debate about both these issues, termination of pregnancy, and the care of babies born before the 24th week of pregnancy.

And I hope that in time, we can see the numbers of terminations performed drop, and the number of premature babies born healthy safe and well increase. And that is the most that we can hope for.

I welcome comment on this, however if I feel any comments are disrespectful or nasty, or do not contribute to the debate they will be removed. That is not to say you have to agree with me, not at all, but just be respectful and be kind to one another.

Friday 26 August 2011

Friday Feature - The 2 Cleverest Babies on the Web

Today's feature is going to showcase two very clever and insiprational babies.

The first one is Felix, who blogs at The Hasler Show , an extremely cute and affable young chap, Felix started blogging when in the neo natal unit in a place called Liverpool, and then another place called Macclesfield. However, since going to the place called home, it appears that Felix has had to either share his computer equipment with Mummy and Daddy or is having so much fun, he just hasn't got the time to blog anymore.

Felix has had a lot of challenges in his short life, and always faces them with wit and  a smile, characteristics that will do him well in the years to come. Also on Felix's blog his parents have collated a list of terms which give a concise and accurate run down of common conditions that affect premature babies.

Now a very special young man, who has also managed to get his fat little baby fingers on to a lap top is Leon who blogs here. Leon, although a fat termie, had his own obstacles at the beginning to overcome, and eloquently blogs his journey through life, in his busy family. I have the honour of being a personal friend of his Mum, and Leon very kindly allows her to blog sometimes too.

One of the loveliest things about Leon's blog are the amazing photographs, and a note to babies everywhere, ensuring a parent is a professional photographer is a very good idea.

Leon has been nominated for a MAD blog award and we are still looking for a sponsor so he (well his mummy) can be there on his behalf. If you are interested in sponsoring Leon (well Sam) please let me know, contact details are on my home page.

Thursday 25 August 2011

When Not to Breastfeed

I have met a new mum to premature baby on twitter this week, and we had a brief conversation about breastfeeding. I mentioned I regretted ever allowing bottles, and she said that she'd stopped expressing as her supply was low. I wanted to write about when it isn't working, and this post is primarily for mothers of premature babies. I have written a lot about my sadness about not being able to breastfeed, but my personal feeling is, breast is not always best as a sole source of nutrition for premature babies, in particular for IUGR babies.

It's fairly universal that when your baby is born you will be encouraged to express milk. This encouragement can come across as pressure. One of the reasons that there is a lot of pressure is that breast milk has been linked with preventing some pretty nasty infections such as NEC (necrolitising enterocolitis), however, have said that, babies on breast milk can and do still get infections. It's not a guarantee that your baby won't get sick, but it may help. Joseph had NEC and was breast fed.

It's also proven that expressing breast milk can help the mother feel that she is doing something productive and helpful for her baby, at a time when she cannot do much else, so on that level at least trying is a great thing.

I've mentioned on previous posts that some of the medications used, particularly for pre eclampsia but for other conditions of pregnancy can and do affect supply in some women. Magnesium sulphate, in particular, can cause supply drop often weeks or months down the line. I think its always good to try and express if that is what you want to do, but knowing that this could happen really helps with guilt, it did with me. I had no option but to go on magnesium sulphate and I believe the treatment I had saved my life, and now, looking back, I am grateful that I could express for as long as I could.

Having a baby in NICU is terribly stressful. Milk production is very much hormonal and stress can cause your milk supply to diminish or stop. And that's unfair, but its ok. I don't think its worth upsetting yourself more by continuing to express if you are under immense stress and its not happening. Some women find expressing relaxing, it gives them time out, and they feel they are doing something productive, however others find it completely stressful. I remember toward the end getting so frustrated, I had blood coming from my nipples, I was in pain, no milk was coming out, and I just thought "this is not helpful to anyone".

I think the best we can do, as mothers with babies in special care, is make an informed decision. In my case I looked at the big picture. My supply was diminishing to the point where I was unable to express, my baby was not permitted out for long periods of time to try and establish feeding, I'd had a large amount of medication and on top of all this, my baby was not growing sufficiently on breast milk alone and required fortification.

Looking at the big picture, it was wise to make the decision I did, to stop breastfeeding and introduce formula. It was a very difficult decision to make, but it was the best one.

No one can make the decision for you as to whether to stop expressing or breastfeeding, the best thing you can do is collect as much information as you can, and to listen to your own heart.

Wednesday 24 August 2011

The Getting of Wisdom

Like many of you I have discovered Pinterest, and I love it. I am addicted. I started using to get ideas for decorating our home, and for making gifts, and also collating the cool stuff I see for Joseph from time to time. What I love is the sharing, meeting new people and sharing ideas in an immediate way, it’s dynamic, real time, and exciting. 

In my youth, I became a Christian. One of the things I loved the most, was reading The Bible (other inspirational, spiritual manuals are available) and really feeling the power of the words. Words are powerful, and well chosen words can make you think, and give you inspiration and peace.

One of the things shared by a friend on her board (I call people I interact with friends, but shamefully I can’t remember who actually shared this, as this is what Pinterest is like, a continual flow of pictures, thoughts and ideas), was this amazing poster.

And it really made me think. Earlier last week I was sharing on one of my forums with a friend who is going through a tough time. She said “Kylie how did you get to be so wise?” A few days later I saw this poster, and it felt like one of Oprah’s lightbulb moments.

Then I got to thinking. Yes you get wisdom through pain. I get that. But the concept of wisdom being “healed pain”, does that really fit me? You see, up until that moment, I felt anything but healed. I still cry for the babies I will never hold, for the sibling that Joseph will never have. I still feel angry that doctors ignored my concerns and patronised me. I still feel bitter that I had to have my baby cut from me, and put in a box. I still feel upset that I wasn’t the first person to hold him, to touch him. Have I really healed then? And if I haven’t healed then how can I be called wise? (or is that poster just some random thought on the internet and holds no truth anyway?)

Then I thought further. What is healing? What does it mean? I found a lovely definition of healing : the act or process in which the normal structural and functional characteristics of health are restored to diseased, dysfunctional, or damaged tissues, organs, or systems of the body

I like to think of the injury I have, the injury to my spirit, psyche and mental health as a result of what has happened, as being like a serious physical injury. So say, for example you have broken a weight bearing joint like hip or a knee. Over time the bone mends, you can walk again. At times it might catch and hurt, so you take some pain killers. At times the pain killers might be enough and you can carry on walking. At other times the pain killers might not be enough and you might need  some physiotherapy, or return to the doctor for further advice.  However, the overall picture is that you have healed from your original injury, but still have some residual issues, that you need help with from time to time.

So, that’s where I am at. I am healed. I have learnt from my experiences, and I have a degree of wisdom and insight about what happened to me, so that I can help others. But that doesn’t mean, from time to time, I don’t need a little help.

Tuesday 23 August 2011

No More Babies - How We Decided

I wanted to do a further post on this, now I am feeling a bit better, in the hope it may help others who find themselves in a similar situation.

The decision not to have more children was very much a joint decision. My husband and I were both completely terrified about what had happened, and we both found the journey through NICU very difficult and we both felt that what Joseph went through wasn't something we'd knowingly put another baby through. At first, I found it hard because nurses would often say "oh next tme will be much better, you will be better monitored", and I'd reply "there is no next time". We were quite sure from the beginning it isn't something we were prepared to do again. However, it wasn't a decision we made lightly.

I am strongly of the opinion that I would get pre eclampsia again, and this is an informed opinion from both my consultant and my lovely GP. I now have a firm diagnosis of essential hypertension and am on medication. If I fell pregnant I would have to come off this medication and back on methyldopa. Methyldopa is not my friend, it's evil. The alternative medication, Labetalol is contraindicated for asthmatics, so I would not be keen on trying it.

After Joseph's birth we were asked to have a follow up consultation with the chief consultant of obstetrics at our hospital, which we duly attended when Joseph was 7 weeks old. She was very up front about my risk and was fairly confident I would get pre-eclampsia again, and would get it early, and her plan would be to get me to 30 weeks.

Now 30 weeks is preferable to 27, however, its still a lengthy hospital stay, and of course, potential for complications for the baby. In addition, although unlikely with good antenatal care, as I have demonstrated in earlier posts, not every woman who has pre eclampsia survives. And my husband, in particular, is very fearful that I might die in a subsequent pregnancy. His fear is not unfounded, his cousin died in her third pregnancy and her baby was born very early and still has serious complications as a result of his prematurity.

The other reasons we have decided not to go again are very practical ones. A pregnancy now would not be fun. I would have a lot of additional monitoring and tests and there is the very real risk I could be hospitalised for bed rest, which with a toddler would be a nightmare. Also I found the side effects of methyldopa incredibly difficult to deal with. We don't have extended family on the ground, my parents and my sister are in Australia, my husband's are in Germany and Luxembourg, and we can't expect either family to drop everything and come and help, its not practical.

Then there is a possible NICU stay, and it would be very hard to do this with Joseph, children are only allowed to visit between 3 and 4 and 7 and 8. I would want to spend my time with the baby, and express, and having Joseph as well to care for and look after, this would be exceedingly difficult, and its not something we are prepared to do.

I am not going to see a cure or definitive treatment for pre eclampsia in my childbearing years, except the current cure which involves cutting your baby out to prevent full blown eclampsia. By the time I am an old woman I want to see the level of deaths from pre eclampsia at zero. I think its purely preventable and the only way we can do this is by education. We have the medical expertise but we need to find away to educate women in a way that is effective, but not terrifying.

Getting back to the point of the post, am I happy with the decision we have made? Yes. I think it's a good one. Being a grown up means sometimes having to make decisions that are tough that you don't want to make, but you have to look at all the information you have available, and work through the consequences of your actions. Am I happy I had to make this decision? No. I feel I should be allowed to have the size of family I want without constraint. I feel very bitter that this evil condition affected me, that it affects any woman. I hate pre eclampsia.

And that is why now, I am passionate about blogging, about sharing my knowledge and experience, and helping others.

Monday 22 August 2011

Monday Musical Meme

Having adopted Silent Sunday, I've decided to join another meme, Mammy's Musical Monday Meme. I love reading other people's memes but I don't join in very often because if you do a meme every day of the week, there's no room to post just, well, blog posts! But I love music and I don't listen to enough these days. I think each week I'll explore one of my favourite artists and offer three songs of theirs.

I came late to Nick Cave, as a teenager I found him too intense, too inward looking and just a little bit intimidating. I wanted rage, I wanted social comment, and no one delivers that better than Nick Cave, however he wasn't direct enough for me at that time and I preferred to listen to directly angry music like Hunters and Collector and Midnight Oil. As I've got older, I've become more introspective, more keen to explore social nuances and depth of complex emotions.

I like this rendition of his classic "Ship Song", because its complex, so many different artists, representing different parts of Australian music and culture, altogether at the Sydney Opera House, interpreting this song. I love how all these different artists can find meaning in this piece of music And it sends shivers down my spine, it makes me cry, and it makes me so desperately homesick. Watching this I feel so apart from everything Australian, and I miss it so very much. And perhaps, its no surprise, that both Nick Cave and I have left Australia and made our homes in the UK, that in Australia we couldn't be the person we wanted to be, that we sought the mother country to make our adult home. I find it comforting that Nick, like me, seems to be stuck between being Australian and being English or perhaps European.

This was the first Nick Cave song I heard, one Friday night on RAGE, the ABC all night music programme, that made me really sit up. The lyrics, the passion and the midly ridiculous but compelling video. And it was this song that I thought about when Joseph was in hospital, when I heard him cry I would think "he is merely crying, his weeping is yet to come".

I love Nick Cave's music because he can at once deeply unsettle but also comfort. His voice is perhaps best suited to reading poetry, he sounds almost uncomfortable when he sings, and I like that. He reminds me very much of Leonard Cohen, another brilliant songwriter, whose songs never quite sound right sung by someone else, yet who himself, is not technically a brilliant singer.

I've struggled with the last song to leave you with, there are so many to chose from, but I've chosen perhaps the easy way out, and leave you with the original "Ship Song".

I adore how Nick Cave can pen a perfect love song, and not use that word. Simple, yet complicated, direct, yet not. Nick Cave reminds us, living abroad, that Australian music can be complex and brilliant and reach all of us, no matter whether we live in Melbourne or Manchester.

Saturday 20 August 2011

Please Help Save Our Maternity Unit

I've blogged about this a couple of times, but the hospital unit that saved my life and where Joseph lived for the first 10 weeks of his life has been earmarked for closure.

Several units were targeted and some have been closed already. The main reason, as far as I can see, is that there is an ethos in the Trust that bigger is better, and services are being centralised.

We feel a town like Bury, which is large and bustling with an ever increasing population, deserves its own facilities, locally. A petition has been set up and I know a lot of you reading this will have signed already.

I know this sounds like a begging letter, and it absolutely is. We require 100 000 signatures to have this matter raised in Parliament and force this decision to be looked at again.

It's a big ask and I need all of you to help. Please sign the petition, tweet it, re tweet it and ask celebrities to do the same. We need to save this unit.

The Petition

The Tweet - for Celebrities @(name) Please RT to try and save maternity services at Fairfield Hospital, Bury, Thanks

The Tweet for general awareness - as above but take out @(name) and add #savefairfield

Thank you. This is so important to me, as I passionately believe that the fact the unit knew me personally and was near to home were important factors in saving my life and not missing the pre eclampsia that came on so suddenly.

Friday 19 August 2011

Friday Feature

Every now and then I encounter a blog and blogger that makes me really think, and makes me happy that I've entered this amazing community of bloggers. I've had an idea this week. Every Friday I am going to do a feature on a blog I have loved this week and my first victim blogger is the gorgeous MummyPinkWellies (aka Katherine) who writes this delightful, positive and pretty blog about raising the gorgeous Littlebit! You must look in the "about" section for her drool worthy wedding photo! Talk about style!

I found this blog through the equally delightful and inspirational MummyBeadzoid.

MummyPinkWellies and I both have something in common, our babies were born early due to pre eclampsia, and her birth story has parrallels with mine.

What I love about this blog is that it just springs onto your desk top with positivity and light. I love the photos, and lets face it, having never owned one, I just love a cute little pink girlie! I loved the recent post about a day in the life of Littlebit and the things she does every day seem awesome to me! How I wish we had a Roody's in our neighbourhood! Littlebit is gorgeous, and goes to show, like Joseph, that investing money in neonatal care is, quite frankly, money well spent.

And on the subject of money, MummyPinkWellies is a Bliss campaigner, petitioning our politicians to put neonatal care firmly on the health agenda and ensure good quality service provision for the tiniest of NHS patients.

MummyPinkWellies hasn't been blogging for a long time, but already I think the warmth and intimacy of her blog makes it a winner! It will remain one of my daily reads for a long time!

Stay tuned next week for my next feature. If you want to join in on your own blog, featuring a blogger who has made your week, feel free!

Thursday 18 August 2011

How To Throw a Pity Party

Sometimes when things don't work out, you need to grieve. And sometimes, you need permission. So if your upset, disappointed, and not sure what to do next, throw a pity party. It works wonders for me! Sometimes you need to let yourself have space, head space, to think things through and to get your perspective back. 

First set a time. I think if you are going to have a self indulgent woe is me party, you should set a time. An evening, a day, even a week, give yourself space to grieve or to stress, whatever it is. But make sure you set an end date and time.

Next find a venue. It might be a blog post, or ten, a real or virtual letter to someone who has aggrieved you, that you may or may not post/email. It might be a real party, with wine, nibbles, or a full on chocolate cake. It might be something you share, like my divorce party. It might be something you do with your nearest and dearest.

Any good party needs good catering. Consider what your favourite foods are, your favourite drinks, it might be something that makes you feel better, it might even be something that is healthy, like a giant fruit salad, or even a lovely smoothie. It might be the best chocolate, a fine wine, or even something from your childhood. When times are tough I find myself craving a hot Milo made by my dad.

Focus on what it is that is upsetting you. Give yourself permission to feel the feelings, to cry, to feel sorry for yourself, to feel anger. Talk about it, write it down, let it out. Don't let it fester and eat you up, really let it out. It's ok. Sometimes life is crap. It may well be even worse for Person B, that's ok, it doesn't minimise your own feelings, they can have their own party if they need to. You could even help them. Give them the permission they need to really get to the heart of their feelings.

There is a time to "keep calm and carry on". Life goes on. Bad things happen and we have to work through them, and learn to cope. But we also need to give ourselves space in which to process what has happened and absorb the impact.

I've found that over the past few weeks I have a new lightness from sharing the post "RAGS to Riches". For me, it was important to get that out, but to focus on the positive, of finding a way to process those negative emotions and to find the happiness and joy again.

For those of you that attended my party, sent a message, a positive thought, a virtual hug, thank you.

I now have my sparkle back. For now.

Wednesday 17 August 2011

The Doctor Will See You Now

In England how your pregnancy is managed depends on your area. In our area you are normally managed by a community midwife and if you have any complications, you will probably be under consultant care, but may only see the consultant once or twice. In our area you can just call your surgery and book in directly with a midwife. I, however, did not know this and went to see my GP. My GP at the time, wasn't known to me, I'd only just moved to the practice and hadn't had a need to see one. I knew from town gossip that whilst well respected, he wasn't considered a likeable person, a bit gruff and to the point, my husband had been seeing him for years.

I at once found him funny and extremely likeable. I told him I was pregnant, and he said "well, have you identified the cause?" peering over his glasses! I noticed straight away, that although originally from Scotland, he had completed his training in Australia, and as such, was an obstetrician and gynaecologist by training as well as a general practitioner. He took my blood pressure and we had a chat. He asked me if I knew anything about pre eclampsia.

The only thing I knew was that if you had it, you normally had a c-section as it was a life threatening condition for both the mother and baby, I didn't know the symptoms or how it could manifest. He asked me not to worry, and not to google, but to just be aware, and gave me a run down of the symptoms - headache, visual disturbance, excessive swelling. He told me that my body type put me at risk, and to make sure I kept all my appointments religiously. Importantly, he said to come to him with any concerns.

At around 13 weeks I went back. I felt weird, worried, and insecure about my pregnancy. He felt it was probably depression and discussed anti depressants, which I declined. I asked for non medicated therapies, he peered over his glasses again. There was nothing, any referral would take 6-8 months. So I found my own therapist.

I then returned at 16 weeks, things were getting worse, although I didn't feel depressed, just anxious. I was crushingly exhausted, I looked huge, I felt weird. I asked to be signed off work for a week, and my GP agreed. He had a meeting with my midwife to discuss his concerns on the Thursday, having seen me on the Monday. My blood pressure was sky high, and my heart rate was high. I know now that a high heart rate can indicate that all is not well.

Every week I extended my sick note, with full agreement of the GP. I negotiated a return to work with my employer for around 24 weeks, but every week my blood pressure was higher, and I wasn't happy to return. And then, of course, at 27 weeks I had full blown pre eclampsia.

My GP had been on holidays. I gave him a call to let him know what had happened. He was lovely and joked that whilst it normally takes three trimesters to make a baby, two obviously was enough for me. He shared a few experiences of his own (I discovered he was the dad of three premature babies, not triplets), and I thanked him profusely for his care. I honestly think that without his initial explanation and warning, I would have been less prepared for what eventuated. I also think that the counselling I had really helped prepare me mentally.

I do think that there is a role for GPs in managing pregnancy. Midwives are fantastic, but in many cases, such as mine or if there is a pre existing medical condition, GP management can mean the difference between a good outcome and a sad one. There is a move to go back to shared care in this country, and I think, personally, its a good idea.

Tuesday 16 August 2011

Playing Catch up

I am asked it a lot, "has Joseph caught up?" I always feel like saying "to whom?" I find "catch up" a really difficult concept to define, and I really dislike that term, and think we can come up with something better.

There are two basic elements to catch up in my opinion, and the first is growth. This is somewhat easier for me to define and answer. When Joseph was born he was on the 0.4th centile on the newborn charts, and dropped right off and followed his own line. At first his growth was very slow, and there were some concerns about it. Then at about six months, he took off, climbing the charts quicker than Cher Lloyd with Simon Cowell behind her. He then settled on the 25th centile happily, and that is where he has stayed, growing slowly but surely.

So in a sense he has "caught up" in terms of growth, although in clothes he is still in 12-18 bottoms with 18-24 tops, he is nowhere near 2-3 clothes yet, but that's ok, many term boys of his age are the same.

Developmental catch up is a lot more complex in my mind, because there is so much variance. Joseph is a chatterbox and everyone comments on his amazing speech. But, when you compare him to children born at the same time as him, some of them are speaking in whole sentences, where Joseph is still doing two word pairs with the occasional three word sentence.  However the little boy next door, six months older, only has about 20 single words.

Joseph, as I have well documented, took an age to walk. He was 23 and half months before he could walk independently, and even now he is still quite behind, he can walk, but not for very long and I am still reliant on a pushchair to some extent. He also is a terrible listener and if he gets the inclination, will just bolt. However to see him walk, climb, paddle and run you really wouldn't think that he had struggled with this. I only notice he is a bit behind because I am with him every day, and occasionally compare him to others.

I prefer, rather than catch up, to think of it as "gap closure", closing the gap between those born prematurely and those born at term. I think that's a much more positive term than "catch up" and doesn't imply that they were "behind" in the first place, just that there is a gap between the age that they were born at, and the age they were meant to be born at. At some point there will come a day where there is no gap, just a normal variance in ability and interest.

The England They Don't Want You to See - Guest Post

I have been honoured to be asked to contribute to an e-zine A String of Pearls, and have submitted an article about the recent riots.

Please pop along and read my post, and join the conversation!

Monday 15 August 2011

Why Holiday in the UK

We are fortunate that my inlaws, whilst residing in the UK, have kept on a house by the seaside in East Anglia. We have just spent a lovely week with them, and Joseph has greatly enjoyed himself, with donkey rides, paddling and eating copious amounts of ice cream.

When I first moved to England I was struck by its beauty and diversity. I loved exploring the place, and I loved how easy it was for me, a non driver, to get places by train. I love trains, a complete novelty for me as the last passenger trains in Tasmania stopped when I was about 5.

After a couple of years I was lured by cheap travel to the Europe, and found it amazing that in just over an hour I could be in another country, so different to the one I had just left. In Australia overseas travel is very much a luxury, although somewhat more accessible now than it was say 20 years ago.

I have done both with Joseph, in his 2 short years since discharge we have travelled in the UK, and abroad. I find now, that holidaying in the UK very much appeals to me.

1. Travel logistics - car transport agrees with Joseph. He loves looking out the window, he sucks his blankie, he dances to the radio, so much easier than rawling with airports and their dazzling lights and hidey holes and long corridors.

2. Being able to meander and stop - I love to stop at roadside stalls or to have a brew and a cake. You can break up your journey if you want, and its much easier to have "joy in the journey" when you are travelling on the ground rather than air.

3. Exploring your own country - I am astounded how much of the UK I have seen compared to some of my English friends, and I am not nearly as widely travelled as I'd like to be. I love the beauty of Britain, it really is amazing, and the diversity never ceases to astound me. I love hearing the different accents, and trying the different food. If you look for it there is a culinary diversity that is quite amazing.

4. Keeping the economy moving - Europe is no longer the bargain it used to be, and its good to keep our money in the UK and to help small businesses and small villages.

5. The weather - I know its unpredictable, and being a Tasmanian I am used to waking up with a "dry weather plan" and a "wet weather plan". I think the changeable weather is part of Britain's charm. And I have to say that although we were in East Anglia and the weather wasn't stunning, we didn't once have to execute our wet weather plan, and I've come home with virgin colouring books and Crayola markers.

Now having said all this, we are having a week away in Rhodes in September, but we think that next year we will not have a holiday abroad at all, and stay in the UK. I really want to try Glamping? Have any of you done it? Any recommendations? Would love to hear from you!

Wednesday 10 August 2011

Panic on the Streets - And Are All Our Youths Feral?

We are currently on holiday in Gorleston-on-Sea and really, we could be abroad. London is only 100 miles from where we are, but it could be an ocean away, and we are untouched by what is going on, apart from watching in horror along with the rest of the nation.

I had a row with my husband and father-in-law about the riots. "Eh its all against the Government, people are fed up with the cuts". What a load of rubbish that is. This is nothing to do with a protest against the Goverment, in my opinion. It's to do with greed, with decline in respect and morals, and young people who feel they have nothing left to live for except gaining more possessions. The originial motive, protesting against the police for the killing of a young man, has been totally lost. It is not about that anymore.

Watching the riots spreading to Liverpool and my adopted home city of Manchester I was struck by the age of the rioters, no more than bits of kids, on holiday, with nothing better to do. If you believe reports, then it's all about getting possessions that they do not need to pay for.

One of the first things I noticed when I moved to England, was how important posessions were. I had never noticed it so much in Tasmania. The "designer" goods aren't so prevalent, or, indeed, expensive, in Tasmania. Sure kids probably want the latest surf gear or trainers, but the "bling" culture is no where near as prevalent in Tasmania. I was struck by how young people would aspire to the very best of everything, bags, shoes, clothes that even to me, on a modest but decent wage, seemed completely out of reach.

And I can understand why these youth are fed up. Material possessions have become so important. TV is more than TV these days, living rooms resemble theatres. We don't just watch telly, we play games, we live virtual lives. The "real" has become "unreal".

And what is sad is that the vast majority of young people are not feral, running around the streets, setting fire to shops and robbing the latest flat screen television. But I do think that young people will find themselves, potentially, further marginalised as a result of this, which is terribly sad.

I don't blame parents alone for this. Life is tough, there is not enough annual leave, or dispensation for parents in terms of emergency leave and parental leave. A lot is put on parents, particularly of teenagers, without a lot of support. Many people don't have extended families, to help with the children, to do things with them and keep them occupied.

I hope that the outcome of these riots is that we all take a long hard look at ourselves, our communities, and how we can help each other, to parent, and to guide our young people, and to reknit the social fibre that should link us together, not tear us apart.

Monday 8 August 2011

7th August 2009 - My More on Monday

I posted that picture yesterday because it was the first ever taken of Joseph. It was my mother in law's camera and the photo was taken by my husband, because I couldn't leave my hospital ward.

It was the first time I'd ever seen him, that photograph. My husband took it, gave the camera to his mum, she rushed to Boots and had it developed and brought it back to me.

When I first saw it I just thought "good lord what have I done to that poor child", and was filled with guilt and remorse.

Then I looked again. His skin looked good, he looked peaceful, and I just fell in love.

His due date was 7th August 2010.

Joseph is now properly 2!

And he doesn't look like that anymore!

Saturday 6 August 2011

Why Fostering is Not the Answer - Yet

A few times people have asked me "what about fostering?" I just wanted to explain a bit about where we are at with fostering. When we first got together my husband and I discussed it at length, and we really wanted to foster, particularly children with additional needs. So when we learnt that Joseph would be our only we started to look into it.

Unfortunately there is a lot legislation and a lot of guidelines that need to be followed and adhered to. I rang agencies to start with, and at the moment we are not the type of family that an agent would look at. I don't drive, and having a small child is an issue, it means that we couldn't really take older children, and any fostering agency puts the needs of your own child first.

So it was suggested we look at local authority. We've had a few meetings with them, and we went on the preparing to foster course, which we greatly enjoyed. It was decided that due to me not driving, the "home from home" program would be best for us. That is where we offer respite to a family with a child who has a disability. Unfortunately we are no further forward, presumably due to budget cuts.

The not driving thing has become a real issue, which is a shame. I didn't learn when I was younger then when I was pregnant I spent a lot of time and money learning to drive, and have failed, twice. I no longer have the resources to do lessons but intend to get back to it once I am working.

When Joseph is older we will revisit fostering and possibly adoption, but for now, it isn't really a solution.

Friday 5 August 2011

Raising an Only Child

I come from a family of two children, there is my sister and me (well I do have a half brother and a late half sister but they were adults on the other side of the world when we were born). My husband has a sister. I don't see her often, but I love my sister and my world would be a much poorer place if it wasn't for her.

By the time I reached my thirties I had grown used to the idea that I might never have children, the main cause being poor relationship choices and some unspecified gynaecological problems, and some miscarriages. When we got married, Corey and I were realistic, we hoped there might be children in our future, but were prepared that there might not be.

What I wasn't prepared for was only having one. This is probably incredibly erroneous, but my view of a "normal" family is two parents and two children. They don't have to be opposite genders (the parents that is) but the nuclear family to me is four. Now this is purely my own prejudice obviously, I am not saying anything outside this is not the norm.

I worry about Joseph not having siblings. I know its not the be all and end all, but I worry he will have no playmate at home. I worry that he will be over indulged. I worry about getting older and that Joseph will have no one to share the burden of ageing parents with. I worry he will be lonely. I worry he will have no one to share his childhood memories with. And I haven't got my head around it at all.

I think I'd be less worried if he lived in the same country as his cousins, but he's not going to grow up with them at all, and that makes me sad too. His life is so much different than the one I grew up with, and the one my husband grew up with too, our lives were full of extended family.

And yet, there are advantages to having an only child, and I wonder if there are advantages being an only child. Are you an only child? Have you made (or had it made for you) the decision to only have one child? I'd love to hear your thoughts.

Thursday 4 August 2011

From RAGS to Riches

I've really struggled as to whether to post this. When I first started this blog, I thought it would be full of posts such as this one, as I was really only blogging for myself, to make sense of things, however in the past year this blog has changed, and I am really proud of where it has gone and the audience that it receives. And I'm glad that it is a resource for many who are either going through the NICU journey, supporting others, or picking up the pieces of their own lives after a traumatic birth experience.

However, I feel that now I am shying away from sharing my feelings. I don't want to upset people (how very British have I become?). This post is especially hard, because I really want to talk about the resentment, anger, guilt and and sadness I am feeling (RAGS - good innit? Well I thought so). I did initially think of using a service call Blognonymous but then thought why should I? Why should I have to stay anonymous? And then would it be anonymous? Pretty much everyone would know it was me anyway.  But before I start I have this to say:

I know that many people who read this have gone through the death of a baby, and don't have one to hold, or have a gaping hole in their family. I know there are people who read this that don't have a baby at all and are struggling with infertility. And then, are my dear friends, who are pregnant again, many of them following birth trauma and/or prematurity. What I want to say is, I don't want to upset anyone. I know how lucky we are to have a healthy toddler. To my friends, I am overjoyed you are pregnant, really. I mean it. I just wish to God that I could be a bump buddy, I am jealous, but that is not your fault, nor is it mine. And I don't want you to stop talking about your pregnancies, your babies and your children, but be prepared that I might say, today is not a good day to talk about this to me, but that doesn't mean that tomorrow may not be a better day.

I am feeling angry. I hate anger. Righteous anger maybe, but this is a jealous, self-pitying anger that isn't directed at anyone. I am just angry. And where do you go with that? And my anger, and resentment is making me sad. So sad that I went to the GP. And you know what she did? She wrote me a prescription for citalopram. This was over a month ago. I haven't filled it but I carry the script around in case I happen to change my mind.

She committed a cardinal sin, in my eyes. She made assumptions and prejudgements. She took one look at me and my history and wrote a prescription. I had asked for talking therapies (as recommended as first line treatment by NICE guidelines) and she basically said "oh there's a massive waiting list its a waste of time". That makes me angry. I have been told this twice before, the first time in pregnancy, the second, after Joseph came home and I was struggling. Both times I said "fine, refer me privately". I no longer have the means to go private.  That makes me angry, that I have relieved the pressure from the NHS, and have not been rewarded with help when I need it and can't afford it. I strongly believe the treatment I had in pregnancy saved my life. My therapist thought there was a physical basis for how I was feeling, and he was spot on. He prepared me for what was to come.

I tolder the doctor that I would not take the citalopram, as it makes me sick. She wrote me second prescription for anti-nausea meds. I explained that I have had them before and they make me sleepy. She suggested that I get help with Joseph. Send him to his grandparents........see, not listening. And that makes me even more angry. I am not a kid, I am a grown woman. I want to be supported in my health decisions, not treated like an idiot. I have never been a non-compliant patient before, and it makes me uncomfortable.

I feel I just need to talk about it, and maybe CBT and/or EMDR might help me to get through this brick wall I seem to have hit. But I just don't have the resources. And I feel anger that the NHS saved my life by chopping me up and fishing my baby out, but won't help pick up the pieces. And I think that is wrong. I just want a six to eight week course of talking therapies, is that really too much to ask?

And I am angry about pre-eclmapsia. I am angry about the myths, the ignorance, and the very fact this fucking illness (gosh angrier than I thought, sorry) can't be treated or cured except through drastic measures. And it's not for want of trying. There are research projects out there trying to crack the code, but its illusive. There is no definitive treatment or real prevention other than careful monitoring, aspirin and anti hypertensives.

And yet, there is balance. Although I feel anger, and a degree of resentment, and also some guilt that I feel this way, I feel immensely blessed. I wish that pre eclampsia did not exist, this is true, but do I feel I have been blessed because of its impact on my life, then the answer is resoundedly yes.

I have learnt to take nothing for granted. You never know when your health and indeed your life is on the line. I have learnt patience, I have learnt true joy and happiness. And I have the cleverest, most beautiful little boy in the whole world.

And I now need to learn to live with the fact that the family I wanted, the two kids, a nice husband and a cat, is somewhat diminished, two one kid, a nice husband and a cat. But that is still a wonderful thing.

Wednesday 3 August 2011

My Other Babies - Our Cats - a post for #RSPCA247

I am very proud to be involved in RSPCA’s Twitterthon #RSPCA247, raising awareness of this charity which has become, in its long history, an institution. But how many of us really understand the scale of the work that they do, and the money that it takes to do this important work? I certainly am guilty of taking the existence and the work of the RSPCA for granted, so please, get involved, and read the other blog posts that have been provided to highlight the work of the RSPCA 24/7. 

Since the age of 14 I have always been a cat. I love the old saying “dogs have owners, cats have staff” And for a long time I have been a very happy staff member. I have had several owners, my current owner is Atticus Woo. I also have another owner, Niow Niow, named by Joseph, a small grey cat who has a staff member who doesn’t understand his needs. So he comes to us. It is estimated that there a 8 million domestic pet cats in the UK, that’s a lot of people who are loved and cherished by their feline friends. 

Sadly Niow Niow is not alone. Last year the RSPCA Frontline team rescued 31,361 cats from neglect, danger or injury in England and Wales. Not everyone understands and respects the needs of their cat, or they may find themselves, particularly in these trying economic times, of not being in the position to care for their car as they would like to. The other area that worries me is neutering and spaying. It seems natural to me to spay or neuter a cat. Not only does it prevent procreation, but it makes the cat a much nicer animal to have in the house.
I have had experience with the RSPCA, many years ago I was asked to take in a cat, a beautiful black and white girl, Chloe, who had been rescued from a frightening and perilous situation. The dogs taken from the same home were so poorly they had had to be put down. The RSPCA staff were unable to catch Chloe, but a neighbour managed to get her later, and passed her to me.
It became apparent that Chloe had got herself in trouble and was well and truly pregnant. We decided that due to the lateness of gestation of the kittens, it was safer to continue with the pregnancy. I was able to rehome one kitten, but the remaining had to go to the RSPCA centre near my home. I was bereft and in tears, and angry, that initially the staff had thought I was an irresponsible owner, not realising the situation. And they promised to do their best to rehome these beautiful little kittens.
What many people may not know is that the RSPCA is funded purely by voluntary donations.  Furthermore, the RSPCA receives an emergency phone call every 30 seconds. Every day the RSPCA responds to around 1,000 incidents a day, rescuing, caring for and re-homing animals that have been trapped, abandoned or hurt whether it’s 2pm or 2am.
If you care about animals, if you are passionate about your own pet, please donate to the RSPCA, whether you can afford to do so regularly or make a one off donation.

Monday 1 August 2011

Sensory Issues and the Premature Baby - An introduction

Sensory processing issues can be signs of an underlying problem, and if you have concerns about your child, you should seek advice from your Health Visitor and/or Paediatric Consultant. This post is based purely on my experiences with Joseph and observation of other premature babies. 

Hot on the heels of the "baby signing" boom, there appears to be a lot of talk about "baby sensory", there are classes, some Sure Start centres have designated sensory rooms, and its something that's talked about in baby magazines, however sensory play is natural, and easy to incorporate into every day play. Over the coming weeks, I'll blog about some different ideas for sensory play for children of different ages.

A baby who has been born prematurely has missed out on all sorts of things, but importantly they have missed that time in seclusion it their mother's womb, a place where sounds, sights, smells, tastes and feelings are filtered by the mother.

From the moment they are born, premature babies are exposed to excessive stimulus, and a lot of it, extremely unpleasant. Lights, loud noises, continuous white noise, pain, strange tastes (many of the oral medications are vile and very strong tasting). The effects of being premature, and being exposed to all of these stimuli can last well into childhood and beyond.

I found we had some issues with Joseph when he was discharged from hospital. The first was night time. Joseph found it hard to settle. Different people take different approaches with this, and as far as I can see there are two options. Firstly, the "cold turkey" method. Evenings are dark, quiet times, and the baby just needs to get used to it and adapt, which is what we did. The second method is to try to replicate NICU, by keeping a lamp on at night, and providing white noise, such as running water (a CD or computer programme is more environmentally friendly than a tap!), a radio not quite tuned in, or background music.

I've blogged about baby massage before, and I found it brilliant for helping Joseph realise there were positive associations to touch not just negative. Even now he holds his feet out for massage, or when he's sad he lies down for me to massage his tummy.

I knew I would have to wean Joseph at 6 months actual, so for the 3 months before this I would introduce Joseph to smells. We would walk around my neighbour's herb patch and feel and sniff the different herbs. When cooking I would have Joseph with me, usually piled up with vegetables, and get him to feel and to smell the different things I was cooking with.

Joseph loved fabrics, I made a play mat with different fabrics, and would have boxes of my fabrics so he could feel different ones against his skin. Even now, he is entranced by fabric. 

As Joseph got older I noticed he had somewhat of an aversion to mess, and to feeling things, so slowly I would introduce messy play. Playdough (I make my own), bubble play, cornflour gloop etc. I've found this has really helped Joseph, and he's a messy toddler boy just like any other.

I found from his early days that Joseph would get overstimulated quickly. It was important that we just did one activity at a time. I would, and still do now, turn off any noise that I can control when we do an activity, both to increase his ability to focus, but also minimise over stimulation.

And I must have done something right, because when we are about to do something fun and involving Joseph jumps up and turns the telly off!