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.

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 Wordpress.com or Wordpress.org 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!

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.

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!

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 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.

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.