Saturday, 30 April 2011

Turning Two

In just over a week, my "little boy" will be two. The run up to his first birthday was tough. I think for any parent that first birthday is such a mixed blessing. It think, in a lot of ways, you just feel you've got the hang of babyhood, and its gone, whoosh! So many of my friends who had babies the same time as I have had Joseph have either had another, or are pregnant again. And I can see why.

As Joseph is turning two, I am aching for babyhood. I miss those special snuggles, the bottles, the night feeds all of it. How strange is that, but I do. I miss padding around at 3 in the morning with just my tiny baby for company, sharing a quiet bottle (I couldn't breast feed but that's another story) and listening to Classic FM waiting for him to bring his wind up and finally settle back to sleep.

I even miss the nappy changing! Changing a highly mobile, opinionated little person is hard work!

Last year I was plagued by "this time last year" syndrome, which is pretty universal amongst my mummy friends who have had similar experiences. I felt so paralysed by that time, I felt trapped in it, the emotions, the fear, and the guilt. Conversations replayed in my head, I felt paralysed, and found it very hard to move forward.

This year, its different, I think in a sense I have come to terms with it now, the illness I had, the need for Joseph to be born early, all that he went through to be here with me now. I feel I have made peace with it.

However, now I feel plagues by a whole new set of emotions. Babyhood is well and truly ending. Yes, Joseph is still a bit dependent on me, but with every passing week, we get closer to the time he will be going to school. Next year he'll start formal pre school and the year after, he will be gone, full time school.

I have two main anxieties in my head. The first is how far "behind" his peers he is. When someone asks how old he is, I still get the incredulous looks I used to get when he was tiny. I see other 2 year old boys and Joseph is no where near them in lots of ways. I know that developmentally he will catch up, and I can rationalise it, but it still scares me sometimes, that he will be behind for a long long time, and that I have made his life harder than it needs to be. That old guilt thing.

The second thing is, what will I do? How will I make this work? I always though after Joseph I'd have another baby, but clearly, this won't happen for us. I was planning to foster children, but we've been waiting a year now, and seemingly, no further forward than we were at our first application meeting.

I'm 39 next month. I feel stuck, and scared at what the future holds. I know I need to grab it and move forward, but I still have no idea what I want to do, who I want to be! And time is slipping away. All I ever wanted to be was a mum, and now I am, I realise that it may not be enough, and certainly won't pay the bills!

I don't want these lazy days of toddlerhood to end. I love my days, playing, singing, watching Joseph develop and learn new things every day. But they will end.

Time to start thinking about what the future holds and where to go to next!

Wednesday, 27 April 2011

My Baby Goes Beep!

I had never heard this song until today. It's by an American folk singer called Hugh Blumenfeld, who seems, from my brief research into his career, a very interesting bloke!

I've been wanting to write a post about how its different for mum's of premature babies. I know a lot of mummies at the moment who are going through the ordeal and delight which is the baby's first birthday. For a lot of mums this isn't always a happy event. When you've had a premature baby the days and weeks leading up to the birth may have been frightenint and bewlidering, even more so the days, weeks and months after the birth of the baby.

I really love this song, because its a happy one, I feel it celebrates the difference between having a premature baby (or a baby born too sick), rather than lamenting it. Perhaps now, its a better song for me than "Wires" my previous song I related to, because it has optimism, and a little humour.

My baby didn't cry, or gurgle, he beeped! And he had lots of little friends that beeped too. And that's a lovely thing. He wasn't alone! And I'm not either. I am part of a rich community who had babies that beeped, and we can all help each other work out what that means for us now, and to move beyond it.

Tuesday, 26 April 2011

My So-Called Friends - Toast the Chicken

The beautiful and somewhat crazy JoJo who blogs here has created a linky about friends, it looked great, so I thought I'd join in!

That, my friends, is a rubber chicken. This photo was taken at my wedding day. I didn't have one rubber chicken present on my wedding day. I think there were four.

I'm not really sure exactly how it happened, but one of my good friends at my previous workplace, Pete, had a rubber chicken at work. And every now and then, Pete would squeak the chicken. So one night, whilst working late, it seemed a good idea. I kidnapped the chicken. Poor Pete was so upset, and conducted a number enquiries, the funniest was accusing a manager of taking the chicken. Eventually I returned the chicken. I thought it was just a bit of fun, but poor Pete was quite upset!

My penalty, he said, was to carry the chicken up the aisle. I said I couldn't possibly but he could bring one to the wedding. Now I am sure I said one! When the minister indicated it was time to kiss the bride, that's when I heard it. A chorus of rubber chickens. Pete, his beautiful partner and three kids were, pardon the expression, choking the chickens!

Now, when rubber chickens appear at your wedding, what can you do? Embrace the chicken!


Now I am sure that chickens are not in the arsenal of every wedding planner, but maybe they should be! Pete and his chickens provided us with fun, entertainment, much needed noise (I mean 150 guests don't create enough noise without help do they?) and even impromptu rain covers.

So thank you Pete, for being my friend, for brightening up my working life, and for chickens!


Photos taken by the beautiful Jennifer Fee - a future subject!

Teeth


Why does no one warn you about toddlers and teeth? I thought teething happened to tiny babies, a bit of bonjela, plenty of cuddles, and teething would be a couple of days of pain and over and done with. How wrong can one person be?

Joseph had the first signs of teething at 6 months, loads of dribble, being unsettled, and grumpy. I found the array of teething measures quite daunting, and the first sign that teething may not, for some babies at least, be the simple process I thought it would be.

Joseph didn't get his first tooth until just before his first birthday. He now has thirteen, that's around a tooth a month! Joseph is a dreadful teether, I now use nurofen and calpol at night when its bad. The homeopathic teething granules (or "baby crack" as my friends call it) that I used to rely on now no longer works. I don't tend to use bonjela or other teething gels anymore, as Joseph's jaw resembles that of a Tasmanian devil, once he latches, he doesn't let go!

As well as "normal" teething symptoms, when its bad, Joseph gets a runny nose. At night this becomes "post nasal drip" that horrible liquid that drips down the back of your throat. In Joseph it causes "confusional arousal" and night terrors, which are horrendous, and go on for hours. Keeping on top of the teething pain, and managing the snot with a saline spray seem to help. No one ever warns you about just how much snot a small person can produce!!! Or the varying shades of green in which it comes!

The other thing, is teeth brushing. I started brushing Joseph's teeth as soon as the first one appeared, so you would think that after a year of twice a day brushing, he'd be used to it, not so. Until recently I have felt like a WWE wrestler, pinning Joseph down whilst attempting to get the brush in his mouth.

All this changed when we were away in Australia. In England I use an adult toothpaste. Our area has absolutely no fluoride in the water, so it is advised by our local NHS Trust dental advisor that we use a toothpaste with an adult level of fluroide 1400ppm or thereabouts. In Australia the water is heavily flouridated, so I used a child's toothpaste specially formulated.

In Australia Joseph learned the word "teeth". He would scoot to the bathroom pointing and saying "teeth" and grabbing the toothbrush out of my hands, and brushing his own teeth, and allowing me to finish them off. No screaming, no chasing, and no Hulk Hogan moves on my part either. I thought it was just a change of environment, and perhaps being a good boy for the grandparents!

So once we got back to the UK, and back to using adult toothpaste, the nightmare begun again. I concluded that it must be the toothpaste! So the dilemma, use a lower fluoride toothpaste and have an easier life, or use the adult one, and risk not being able to brush effectively.

I decided to go on an adventure to our local supermarket and investigate. There were a number of children's toothpaste, and finally I found one! A supermarket own brand, with 1450ppm of fluoride. To my horror, I discovered it was "strawberry ice cream" flavour. Never in my life did I think I would be the type of mother to buy "ice cream" flavour toothpaste. But I did put it in my trolley, pay for it, and bring it home.

And you know what, we're back to "teeth" pointing, smiling, and happily brushing teeth. If ice cream flavoured toothpaste is what it takes to make sure Joseph has the best start in happy, healthy teeth, then so be it!

Saturday, 23 April 2011

On Guard! Q & A Meme

Swimmers during learn to swim week, at a suburban swimming pool, probably Wellington region, ca 1939

My lovely friend Jennie who writes the inspiring blog about her gorgeous twins has tagged me in this meme. I love reading memes and I discovered some intriguing things about Jennie, so perhaps you will learn something interesting about me too!


Which living person do you most admire and why?
This is a really hard one, but its actually my husband. My husband was born with a rare and debilitating condition, athrogryposis multiplex congenita. When you meet him, the first thing you notice is his booming voice, his generous smile and his gregarious nature. Walking is hard for him, his toes have grown under his feet, his legs don't have a good range of movement, and he has restricted movement in his hands. He works hard, he provides for us, and he never moans, well not about his condition anyway!!! He has travelled widely, and he's devoted his life to helping other people with disabilities, in his words not mine, "get off their arses and live a good life!".

When were you happiest?
7th August 2010, this was Joseph's corrected 1st birthday. We had been in our new house a few months, he was doing well with weight, and development (and still is) I had been off antidepressants for 3 months, I was in the process of being made redundant, and life was (and still is) very good. I finally allowed myself, at this point, to enjoy being a mummy, and started making plans for the future.

What was your most embarrassing moment?
I've had lots of these in my life, but the one that stands out was in high school. I was useless at any sporting endeavour. The only thing I could do a half decent job at was swimming, but I was still always last. So in grade 10, in the last ever sporting event I'd ever have to take part in, I started swimming in the 50 metre freestyle event. There I am, crawling away, and a rope is on the water, I lifted it up, and kept swimming. I had no idea that this rope meant that it had been a broken start and I was meant to turn around. I kept going. I could have caught Michael Klim the way I was swimming (he was probably in tiddlers for 3 year olds at the time), and then suddenly I feel a hand. I stopped, stood up, and someone I didn't know said "you need to turn back and start again". Mortified, I was too ashamed to get out and walk past the 1 000 people wetting themselves with laughter, so I swum back.

The race started again, and I had to turn back, the exertion was too much, and I was wheezing. Mr Mitchell, the beloved PE teacher who everyone fancied except me, fished me out, and put his arm around me. I got awared 1 point for starting 1 point for coming back and 3 points for trying again, these points went to our house score. I also was permitted to do the 25 metre race, only 3 people in it, I came second getting a further 5 points. So in total I got 10 points for our house, and if it hadn't happened I would have come last and only got one! Every cloud......


Aside from property, what is the most expensive thing you’ve bought?

It was my wedding dress. I shopped around quite a bit, but being *ahem* a larger lady, found that off the peg was not going to work for me. I went into a gorgeous shop called Bellissima, in our town, and the ladies there were just lovely. On hearing my budget £1000, they said, well, the sale rack is there, but its all size 12. That was never going to happen, so they persuaded me to consider revising it. "Show me anything that doesn't start with a 2" I said. And I found a beautiful Alan Hannah silk dress, and got it made to measure. It was perfect. The rest of our wedding was on a relative shoestring.


What is your most treasured possession?
My most treasured possession is my Kitchenaid mixer. I am a keen cook and had wanted one for a long time. I put it on our wedding list, not expecting anyone for a minute to pay almost £400 for a gift, but a lot of people gave us money or vouchers, and we were able to pay for it this way. I love the fact that its a gift from so many people, its pretty, its practical, and I use it often.

Where would you like to live? 
I don't know. I have no idea. I think, ideally, I'd love to live in Sicily, near Santo Stefano Di Camastra, in a little house, with a large vegetable garden and a path to the sea.

What’s your favourite smell? 
Lavender. My grandmother loved it and always had it growing, and she had lavender bags and lavender toileteries. When I miss her, I just have to smell it, and it reminds me of her.

Who would play you in the film of your life? 
Being a larger lady, I don't think there is a lot of choice. Kathy Bates? Perhaps not cuddly enough! Dawn French? She did a shocking Australian accent in a film Ben Elton wrote whose name escapes me, so she might be out. Toni Collete? She put on a lot of weight for Muriel's Wedding...I think she would be perfect! Of course in my head I look like Uma Thurman.....

What is your favourite book? 
I love autobiographies. My most recent one I loved was "The Happiest Refugee" by Anh Do, who was born in Vietnam, but raised in Australia. It's heart-wrenching, hilarious, sad, funny, happy and ulitmately life affirming. I really recommend it! One of the first in this sort of genre was Anne Davison's "Tell Me I'm Here" about her son with schizophrenia. I read it when I was just a teenager and it really informed me about mental illness, and the reality of living with conditions like this.


What is your most unappealing habit?
I have loads and loads I think! My husband says untidyness! Which I think is a little unfair. He just has no possessions, he's happy with a telly, a fridge and some clothes. I have stuff! So perhaps its hoarding....

What would be your fancy dress costume of choice? 
I'd be quite happy never ever to be invited to a fancy dress party. I think my ideal outfit would be an Arabian belly dancer! Bright, noisy, and you have to have a bust and a tummy to carry one off!

What is your guiltiest pleasure? 
It's Facebook. Its usurped cupcake baking and chocolate eating as my guiltiest pleasure! I just adore Facebook, I love renewing friendships, making new ones, and sharing photos. I just adore it, and its enriched my life. But it is a giant time suck, which is bad.

What do you owe your parents? 
I think the biggest thing is teaching me the art of resilience. My parents both individually and together have weathered quite a few storms, as have I, and I think my parents taught me that whatever you are going through, you just keep treading water, and hanging in there until trouble passes.

To whom would you most like to say sorry to and why? 
My ex husband. I married him for all the wrong reasons, I wanted stability and security, and I wanted to be the perfect wife. I wanted to settle down young, and have a family, and be happy. I was determined to make it work, and it didn't, and I'm deeply sorry that I wasn't more self aware in the first place, to realise that at 21 I was just too young, and needed to live a lot before I settled down.

Who or what is the greatest love of your life?
My gut feeling is to say Joseph. I think really its my family, can I say that or is that cheating? Joseph is the baby I never thought I'd have, Corey and I never thought we'd make a baby, and to have with us a miracle baby, born so small, so sick, who has just got on with it, overcoming every obstacle in his path, is just a complete joy. Having Joseph really taught me what love is.


What does love feel like?
I think swimming in the sea in Fiji sums up what love is like. The sun shining, but not harsh, the sea refreshingly temperate, almost warm, the sky and sea almost undiscernable from each other in colour, a peaceful South Pacific breeze - all these factors combined to make you feel safe, warm, and totally at peace.

What was the best kiss of your life? 
On our wedding day, in front of all our friends and family, when our vicar just gave us a knowing smile and a wink, and we kissed. It was perfect!

Which words or phrases do you most over use? 
My husband just said "Corey", he he, I guess I do say that a lot! I think I say "oh for goodness sake" a lot, and some of my Aussie phrases get overused at times!

What is the worst job you’ve done? 
When I first arrived in the UK I found it really easy to find a job, but really hard to find a good job. When you have no local knowledge and no friends, its hard to sort out the good from the bad. I took an awful job in an "ambulance chasing" law firm, although I didn't realise what it was. My job was to try and get people to make spurious claims against councils and employers. I lasted 6 weeks!

If you could change one thing from your past, what would you change? If you could edit your past, what would you change? 
I don't know. I wish in a sense I hadn't got married at 21, but if I hadn't then the course of my life wold be unrecognisable, but if I could edit that out, and the hurt and anguish it caused, and still end up where I am now, then that would be good.

What is the closest you’ve come to death? 
In pregnancy, Dr K reckons I was six hours away from death. I am very fortunate that I had pre eclampsia that has a very good treatment protocol, and I was fine. My heart goes out to those women, especially in developing countries, that do not have the access to medical facilities and personnel. I never forget that pre eclampsia still kills women every year.

What do you consider your greatest achievement? 
I don't feel like I've achieved what I'm here for yet.....but I'm not sure what that is. I think my greatest achievement is parenting Joseph and getting through post traumatic stress disorder and not being a complete raving looney!

When did you last cry and why? 
Yesterday, watching the video of Joseph walking. I never thought the day would come, and it seemed so ordinary to see him pottering in the garden, but so utterly extraordinary too. Tears of pride and relief.

How do you relax? 
Winding down in front of the telly with the lap top on my knee either blogging or chatting is my favourite relaxation. I also love to have a nice walk with Joseph, and love playing in the park with him, but perhaps my favourite relaxing activity is cuddling on the bed, all four of us, husband, Joseph and Atticus Woo (the cat) and reading Joseph his 3 bed time stories.

What single thing would improve the quality of your life? 
Having an extra £500 a month. How I miss maternity pay. I love our life, and I am grateful that my husband has a good job, but an extra bit of income would make all the diffeence. Must really start looking for a job!

What is the most important lesson life has taught you? 
That it all comes out in the wash. However bad things seem, however sad you are, however frightened, that things have a way of working out, not always in the way you expect, but you get through it, somehow.

Now to tag, I am tagging my good friend Simone at SFR Product Reviews, who as well as a lovely, generous mummy blogger, lives nearby to me and has become a very good in real life friend!

 
 

Friday, 22 April 2011

Walking!

Cheeky child, reading my blog when he should be napping!

video

Can't Walk? Won't Walk?

From the time he was 9 months old, I learnt very quickly with Joseph that there is what Joseph can do and he won't do. Joseph didn't sit unsupported until he was almost 12 months old. Then one day, the 23rd April to be precise, he just sat. No falling, no toppling, sitting comfortably. Two days later he sat playing with toys in a museum. On the third day he sat unsupported in the bath. For half an hour. You can't tell me he couldn't sit before the 23rd April, I am sure he could, he just wouldn't until he could do it reliably without making a fool of himself.

Crawling was exactly the same. He commando crawled for ages, then in July 2010 at the grand old age of 14 months, we were on holiday. He was commando crawling outside, realised his tummy was being scratched, and he decided to normal crawl.

He didn't pull to stand til 15 months, and moving around took a lot longer.

Now this delay in meeting milestones has alarms ringing in our consultant's head, because it's one of the markers of Cerebral Palsy,(CP) in isolation it probably just means that other things are on Joseph's priority list and his prematurity means that he will be delayed, however some conclusions have been drawn by her, that fortunately are not shared by the two physiotherapists in the two countries we have seen one! The consultant did appear slightly miffed that Joseph doesn't have Global Developmental Delay. She tried to get him to walk with her hands "No walk, no no NO" said Joseph - thanks little man!

Their conclusion, which is the same, apart from the fact these two therapists have never met, is that Joseph has some hypermobility in his joints, which is impeding his ability to bear weight and to walk. Again, this can be sign that something is wrong, often in CP what can start as hypermobility then goes the other way, into spasticity and rigid muscles. They are both of the opinion that Joseph's hypermobility is just due to his prematurity and as he starts to bear weight more, will settle down.

It is difficult for me at the moment. I am going into that "this time last year" syndrome I had last year, and possibly will every year, that I will blog about in due course. But in a nutshell, that awful sensation that this is all my fault. That my inability to carry Joseph to term, in a non toxic environment, has made his life difficult, more difficult than it should be. Our consultant isn't great at differential diagnosis. Once she has an idea in her head, that's it. Afterall Joseph was the child whose stomach was so badly damaged, that he would never eat and would be tube fed for life. I also had to fight against aggressive tests when Joseph was experiencing "seizures", that were not seizures at all, but that's another story. So trying to tell her "look, yes I agree it could be CP, but I think its just down to his prematurity" is not working.

I am finding it wearing trying to fight for my child. Deep down, if I ask myself, do I think he has CP? My gut instinct is telling me he absolutely does not, that he's doing what he always does, and waiting for his moment to shine. And I'm not ignorant about such things. I worked with adults with disabilities when I first had a job after university. For five years. And four of these chaps were premature, born in the 1950's and 1960's when the treatments at birth were not as good as they are now. All four of these chaps had CP, in varying degrees of severity but all were wheelchair bound.

Joseph is doing steps, its just not at all his preferred method of getting around. However, yesterday, after crawling all over a shopping centre whilst we were having morning tea with a good friend of ours, he then turned it on when we met my husband at his office. Joseph happily walked (although he looked like he'd had a couple of pints!) between desks, and generally had a ball.

Joseph's consultant does not find it significant that Joseph comes from a lengthy tradition of late walkers, I didn't walk til 2 and a half. My husband didn't walk until 4, but he had underlying issues. I think its very significant personally.

I feel a bit upset because I always said I wouldn't at all be concerned until Joseph was 2 corrected, which isn't until August. I did ask the consultant to hold off, but she refused. So here we are, going through appointments, fitting for orthotics, and I think, wasting NHS money to cure a problem that doesn't exist.

So please, Joseph, when we attend orthotics in two weeks, then, my little man, could be your time to shine! And save the NHS some much needed cash!

EDIT: Joseph can read - I wrote this at around 8am this morning. At 2pm Joseph walked from our local supermarket to the pharmacy and back again. Without holding hands.

Tuesday, 19 April 2011

Travelling with a Toddler -Tips

Emirates A380 in Sydney
Image courtesy of Simon_sees Flickr.com


With summer holidays fast approaching I thought I'd share some of Joseph's top tips for travel.

1. Make sure your grown up packs your comforter in their carry on luggage. Make sure you imprint on them just how important it is that they don't forget it, and they are aware of how important it is that they realise their life is over if it is lost.

2. Ensure your grown up has lots of snacks packed for you. Make sure that they are not all completely healthy, travelling is tiring work, and something a bit naughty can make the time seem shorter. It's ok if they pack something naughty for themselves too.

3. Toys are good, not too noisy. It's ok to pack something that we don't normally like. I never ever play with boring crayons or sticker books at home, but on a plane, well that's a different story! Even I don't know why, I just do - ok?

4. I love tv, as much as the next toddler, but I don't like tv on the plane, its too hard to watch because you have to wear stupid earphones, and the stupid screens are too small, and I can't follow it easily. It just makes me whinge. Mummy doesn't even bother getting the screen up anymore. I'd rather suck my blankie and eat chocolate.

5. Mummy always tries to book our long flights so they start at night. Somehow, it feels better, to be a bit sleepy, in my jammies, with my sleeping bag all ready to jump into, and blankie ready to suck. I haven't had a bottle in nearly a year, but I like them on the plane. It makes me feel all snuggly and sleepy.....zzzzzzzzz

6. Mummy was really smart and booked a bassinette on the plane, I was under 11 kilos, which is the weight limit, but what the naughty airline didn't tell her, is that use of the bassinettte depends on the crew. We had three changes of crew on the way to Australia, 2 crews were fine with me having a nice cot, one wasn't. Mum was grumpy but she said she would have been less grumpy if she'd been warned.

7. If you going to be on your mummy or daddy's lap the whole way, make sure your grown up orders an appropriate meal. Sometimes the airline thinks if your on a lap, you'll be a cute little dinky dot who just drinks bottles and eats mush in jars. You can order a children's meal and they are really yummy.

8. Airports are weird. Another thing that made mummy grumpy was they all had different rules. Sometimes the same airport would change rules in the space of a few weeks. I went in the sling through airports and in most I could stay in, but in some I had to jump out to go through security. At the time I couldn't walk so it was a bit of a pain. Manchester was the best, because, of course, I look like a rock star, I was allowed through the VIP queue, I let mum come with me. I was treated like royalty with my own staff to help my roadie, oh I mean mum, with my bags.

9. Mummy says if you are going through Australian customs always to declare something. She reckons it gets you through quarantine and customs quicker, they very rarely open your luggage, they just look deep into your eyes to see if your telling the truth. Its kinda cool.

10. Mummy says not to rush once your through security and on the other side. Because of the huge amounts of people going through the airport when we arrived in melbourne, we missed our connecting transportation to the outskirts of Melbourne. So we had to sit and have an apple juice and a sausage roll. It was the best spent $17 ever, although I think that made mum grumpy too, but I felt human again, and ready to face our next leg when I had had a big rest.

11. Mummy also says to make sure you pack extra nappies and clothes in your carry on luggage, and even a change for the mummy. Travelling on planes is messy, the air pressure can do funny things to your bottom (mummy made me write that bit!), and also the airline insists on giving messy food to toddlers, which gets all over the toddler and the mummy, so its nice to be able to freshen up.

12. I noticed that my mum smiled a lot, even when I had the odd tantrum (a toddler has to keep their mum on their toes, otherwise they get complacent), its really hard to have a prolonged tantrum when your mum is really calm and grinning like a loon.

13. Oh if you are travelling with just your mummy grown up and your missing your daddy, apparently, its not good practice to call all men daddy. Even if they are called Father. And wearing black with a weird collar thing. Mum went a very strange shade of red. I'm not sure she's recovered. Father O'Reilly thought it was very funny, not sure why.

Monday, 18 April 2011

How Do I Help? - Part 2

So your friend's baby is now coming home. What a lot of people don't realise is, that just because a baby is discharged, it doesn't mean they are fixed. The journey from premature birth is not a linear one, its not like recovering from an operation or short term illness, so your friend may still have a lot on her mind, and a lot to do. The first weeks are undeniably difficult, as the baby (and family) make the adjustment from patient to family member.

In the first couple of weeks contact by text message or email is better than phone or calling in, the new mum and dad can then contact you when its convenient. By all means make it known you are there for them, and available to help, but don't be suprised and much less, offended if you don't hear from them immediately.

If you are invited to visit the baby here are some important things to remember.

Hygeine and handwashing - the new parents have probably been given a list of care instructions, and one of the biggies is making sure that everyone washes their hands before touching or handling the baby. If you can pre empt this and do it without being asked, that makes life so much easier. If you are a smoker, make sure you don't have a cigarette for at least 2 hours before seeing the baby, and don't wear clothes that have been around cigarette smoke. It's really important. Those little particles of smoke can irritate tiny lungs.

Colds and bugs - It's really important, but that little sniffle, or that bug you had a week ago, can really knock a premature baby for six. So make sure you are well and truly "bug free" and that goes for your household too. Your child may have a bug that you are immune to, so make sure that you and your family are in good health before seeing the new baby.

A listening ear - especially after the first two weeks, the new mum and dad might be feeling quite isolated. Often it is encouraged that premature babies are kept away from social situations, like baby groups, particularly in the winter months. The new parents may be feeling lonely and isolated. Invite them for a walk, or pop around with a cake or even a picnic lunch. You don't need to be a counsellor or expert, but just be there and ready to listen.

Offer to help - you could take older children to soft play or the park, you could offer to cook a meal or two, or do some shopping, or a little bit of housework. A new baby can be all encompassing, especially if there are appointments and medical needs to attend to as well.

I do think the greatest gift you can give to a new mum (and dad) is time. I am sure an outfit for the baby, or soft toy, or a gift for mum would be greatly appreciated, but an hour spent chatting, or out for a walk is the kind of gift that money just can't buy.

Sunday, 17 April 2011

How Do I Help? - Part 1

When a new baby is born, its a time of hope and joy, when a premature baby is born, things are less certain. I've read a lot of posts pn forums and heard a lot of friends who have had premature babies say that their friends and family have not known what to do to support and to help. So I thought I'd explore this a bit further in today's post. This post will focus on the baby in hospital, then my next one will be focussed around when the baby comes home.

What do I say? Congratulations is a good place to start. Different mums I know feel differently about this. Some parents feel its hollow, I did at first, what is there to congratulate us about, our baby is small and sick and no one knows what the outcome will be. Now I am grateful for those who said "congratulations". But say it gently and with a little smile, and leave the door open for the new parents to tell you more.

What do I ask? Focus on the here and now. "How is your little one today?" is a good place to start. Listen carefully and pick up on what is being said, and that can help you in future conversations. You could ask who they think the baby looks like, or what little thing the baby does? Joseph had a habit of lying on his hands and using them as a pillow, and I loved talking about that!

What do I buy? Personally, I always advise against buying clothes. Depending on how premature the baby was, most of them just wear a nappy and a hat for the first weeks. Often the hat is specially made to accommodate CPAP or ventilation tubes. Buying clothes for later might be a good homecoming gift, however to buy a new baby who is tiny, in our case 1lb 7oz, something for a newborn weighing 7lb, is just a further reminder that things aren't "normal".

You could buy muslins or small blankets. I used these a lot in hospital. A dear friend of mine bought me some pretty ones, that I treasured. We used muslins for everything, swaddling blankets, sheets, even their traditional use of catching vomit! If you pre wash these a couple of times in non bio detergent, and re wrap in tissue paper with a nice ribbon, that's even better, ready to use! Another nice gift is a small stuffed toy. Many hospitals will allow a toy on or in an incubator. A personalised gift is lovely, a little cushion, or a door hanger. Story books are a lovely idea, I used to take them to the unit to read to Joseph.

If you would like to buy a gift for the new mum, hand cream is a good one, but look for one that is rich, luxurious, but with little scent. The Body Shop and Crabtree and Evelyn both do good ones. Another nice gift is good quality chocolate. Chocolate is really good for breastfeeding mums, and its easy to eat. Magazines are another nice thing to buy, for mum to read when doctors rounds are taking place, or in the expressing room.

I really want to visit, but they say I can't, why is this? Many hosptials are increasingly adopting an "immediate family only" policy. Small babies are at risk of infection, and the more people coming throught he unit there are, the more risk there is of something coming in that could be very harmful to a small baby. Also units are often very small, and too many visits impedes the staff being able to effectively care for these small babies. It is not all a reflection on you.

I've been asked to visit the baby, but I'm scared. If you've never been in one, a neonatal unit is an intimidating place. We had a number of visitors once Joseph was more robust who had never been in such an environment. First of all, as soon as you get into the unit, wash your hands. It will be clear where the washing stations are. Wash your hands thoroughly.

When you get to the babies cot or incubator, just try to focus on the baby. There may be a number of wires and tubes, the parents will probably explain them to you, but try and just look at the baby, and ignore them.

It's quite important to focus only on the baby you are visiting. Units have a very strict code of conduct about not looking at other babies, and very importantly, not asking questions. I did have this happen a few times with other people's visitors and it made me feel very awkward. Everyone was curious about Joseph as he was by far the smallest baby in the unit, but it did make me feel uncomfortable when complete strangers would ask questions.

Anything else? Don't feel you always have to talk about the new baby. The parents might just need a break from time to time, and want to talk about something else. Ask gentle, open questions. Invite the mum (or dad) for coffee or a meal. Ask if there is anything practical you can do to help. Cook a casserole, run an errand, do some tidying up around the house. Sometimes people are embarassed to ask, but visiting a small baby takes a huge amount of time and emotional energy.

Friendship is so important at times like these, but just be aware that your friend or family member may not be able to show how important your care and concern is, and at times may be a bit distant, I know I was. I had some lovely friends who went out of their way for me, and I didn't say "thank you" the way I normally would, it was like I just had so much on my plate, that thinking about other people was just very difficult.

Next post, we'll talk about how to help when the baby comes home.

Tuesday, 12 April 2011

Love's Labor's Lost - it could have been me

I am not a huge fan of "modern" TV drama. I am getting grumpy in my old age, and feel that all the good television has already been made. I recently subscribed to Sky, and now have a facility to record programmes, so am recording all the ER episodes right from the beginning. Yesterday I watched Love's Labors Lost, from series one.

I remember watching this originally back in the day, I must have been about 23 or so. So a long time ago. Since that time George Clooney has been in more blockbuster films than I've had hot dinners. ER has ceased to exist. Many of the actors that were household names, are now directors and stage actors.

My initial feelings about this episode back then were that it was good drama but entirely inaccuarate. Surely women don't die in childbirth in the latter half of the 20th century? Eclamptic shock sounded like something out of an ancient medical journal. Never, in a million years, did I consider for a moment, this could be me....

To give a brief synopsis, a healthy woman in her 38th week of pregnancy presents in the ER with frequent urination, and just feeling off colour. Dr Green diagnoses a urinary tract infection and sends her on her way, in the care of her husband. No other members of the team offered the differential diagnosis. The woman in question and her husband weren't educated enough to say "hey what about pre eclampsia"? She then collapses in the parking lot and is brought back in.

What happens next is a protracted and complex affair. She has a full blown eclamptic seizure, which is stopped with magnesium sulphate. She recovers from this quite quickly and is able to talk to Dr Green and her husband and some decisions are made. Dr Green measures the fundal height and determines the baby weighs about 5-6 pounds. He makes the decision to induce labour, rather than taking her to Obstetrics for a caesarean. During the section the woman has another seizure, and the baby gets stuck, a condition called shoulder dystocia. Dr Green can't get the baby out, decides to push it back, and then go to crash section.

It transpires that when Dr Green did the ultrasound, and determined that the baby was a girl, he failed to spot the fact that the placenta had abrupted. So once the baby is out (and not breathing but is resuscitated, happily) the woman starts bleeding profusely, and sadly, dies.

The picture I have selected above is Dr Green speaking to the husband, telling him what has happened to his wife, whilst he holds his baby in the NICU.

Obviously, being ER, this story is dramatic, and I think still, a little far fetched, and I truly hope ER doctors don't handle these cases willy nilly without handing them over to the proper personnel.

However, I can see how this happens. My pre eclampsia was nearly missed. When I went to the delivery suite, most of the midwives thought I was possibly neurotic, but, crucially, checked everything out in fine details, and my severe, early onset pre eclampsia was detected and treated.

But, watching this yesterday, my thought was, this could have been me, and the only reason, if we're honest, is that I had tip top medical care. I had a team of doctors and midwives who were skilled, and who utilised all their resources (there were several phone calls with experts around the country as to how best to manage my care) and both myself and my baby were safe and sound, and are here to tell the tale.

But, as dramatic, and inaccurate in places, this episode is, it serves as a reminder that without good, cohesive medical care, sometimes, childbirth can be risky. I am passionate about good antenatal care,about educating prospective parents about possible complications and about good emergency care, and this really reminded me yesterday what I am fighting for when I work as an activist.

Healthy babies, healthy mamas.

Thursday, 7 April 2011

Bring me Comfort

When Joseph was born, we tried tointroduce a dummy, on medical advice. We tried several times, Joseph was a sucky baby,  he had to have a number of procedures and we thought it would bring him comfort, and they are recommended for premature babies. Joseph was having none of it.

In December 2009 a little square of fabric would become very important in our lives. Blankie. Now known as Manky Blankie. Here it is in its first week or two, in its normal position, safe in Joseph's hands (or mouth). Blankie was crocheted by a local lady, and for sale at a stall in Ramsbottom to raise money for the Bury Blind Society. It's soft acrylic, and perfect colours for a little baby.



Blankie was invaluable on our first trip to Australia. Wherever we went, blankie went with us, giving Joseph comfort, and security in an ever changing environment. Blankie had a close call when I mistakenly left it behind at a friends house. It was an awful sinking feeling as I realised I had lost it, and I could have cried. Joseph went without beloved blankie for a whole night, making do with my expensive cardigan!


And on our most recent trip to Australia, blankie was with us still. Not looking quite as bright and fluffy. Joseph sucks blankie quite literally within an inch of its life. I've had to do some amateur macrame to prevent the favourite corner (why he only sucks one I will never know) unravelling and the whole blanket being ruined. I am tempted to unpick and re edge, but I think Joseph would hate me!

We have spares. I even bought a blanket from the same lady to try and rotate, no joy, and my dear friend Stacey helped me find one at a charity shop in Scunthorpe, but nope, another reject. And I recently bought another one in Tasmania. Again, it isn't the same as beloved blankie, and lies folornly at the bottom of the cot.

Blankie only comes out at sleep time. It's so fantastic, the magic blankie, that yesterday when Joseph needed to nap in his pram in between appointments, that the moment I put him in the pram, and got blankie out, he got the message, and slept soundly for an hour and a half. On our trips on planes, trains and buses, it worked like a magic sleep charm.

We love blankie, and it has become like another member of our family. I do picture Joseph going on his first sleepover, his first school camp, and his first night with a girl/boy friend and being attached to blankie!

Wednesday, 6 April 2011

These Boots are Made for Walking

Joseph is now 23 months. His 2nd birthday is looming. Although really he shouldn't be two until August. It still does my head in, but I find myself still correcting his age, developmentally its only fair, I think.

At our last consultant appointment before going to Australia, I was in tears. The consultant decided Joseph had tight achilles tendons, and this was the reason for him not walking. I was devastated. I was upset because I felt it was my job to know these things, I shouldn't have put his not walking down to developmental slowness and genetics (dear reader, I didn't walk til two and a half and I was a boring termie).

The consultant said he would need Piedro boots, and perhaps intensive exercises. I felt so negligent, and hence my floods of tears. I was inconsolable.

All my friends, premmie and termie, thought that Joseph, and quite rightly too, would do it in his own time, and that I was over reacting. Which I was.

In Australia we saw a physio, at my own expense, who spent an hour with us. She diagnosed Joseph as clever, funny, and too busy to bother with walking which is obviously a bit problematic and hence, not on his agenda, in the too hard basket. She didn't feel that he had tight achilles, or any major problem, and would walk in his own time.

Since the consultant appointment, 8 weeks have passed. Joseph is doing the odd step here and there. My mother's day present was the amazing feat of 10 steps across the kitchen floor. It was such a suprise, I didn't record it.

We saw an NHS physiotherapist today, who was equally as lovely as my Tasmanian one. She thinks Joseph, if anything, is too loose in his ankles, knees and hips, not too tight, but needs no action, just to keep developing as he is doing. She has referred to orthotics, just in case, but thinks by the time our next appointment comes around, he should be making great progress.

I feel so relieved that I am not a bad mother (well not in this respect anyway) and that I hadn't missed anything glaringly obvious. Joseph is just slow to walk, and he will get there in his own time.

Friday, 1 April 2011

Preventing Premature Birth - Tackling Poverty

This blog post is in response to the documentary 23 Week Babies - The Price of Life, and should be read in this context. Just to explain to those who may not have seen it, this documentary explored whether 23 weekers should be routinely resuscitated, it was not an exploration of premature birth on a whole, looking at causation. And some claims were made in this programme that I really want to explore.

Just to put my comments into context, its not sexy, its not current, but I am a socialist. Always have been, and always will be. I believe that to whom much has been given, much is to be expected. I believe in the redistribution of wealth through taxation, I believe that disadvantaged groups in society should be not only protected, but actively helped in order to escape their situation, and to have happy and meaningful lives. I think the fact we even have to talk about poverty in the UK is disgusting, we have the means to ensure no one is living in poverty.

In this documentary, when looking at Holland and its low rate of premature birth, Adam Wishart said, almost as a throwaway line, the Dutch have a lower rate of premature birth most likely due to lower poverty, and less teenage mums.

I don't think enough is known about 23 weekers, and where they come from, who their parents are in order for us to make such statements, and certainly to my understanding, there is no concrete data to suggest that the rate of 23 weekers specifically relates to socio-economic deprivation or indeed teenage mothers. I strongly suspect that many 23 weekers (and in fact this was the case in two of the pregnancies featured) are multiples, and no one is suggesting that we should do selective reduction of multiple pregnancies, or ban IVF treatments that put more than one embryo back.

The research that is out there in relation to poverty and childbirth focuses around low birth weight babies. Low birth weight is not the same as premature birth. Babies can be born at low birth weight if the pregnancy is shorter, this is true, but what the research is really talking about is low weight for gestational age. Whilst a number of factors outside a woman's control can cause this, such as pre eclampsia and other conditions affecting the performace of the placenta, low birth weight can be influenced by a range of maternal factors, and these are quite prevalent in lower socio-economic areas. Some of these factors include smoking, recreational drug use, poor diet, stress and depression and pre existing maternal illness.

It is most certain that if we address poverty, we can address low birth weight, and most likely, premature birth too, but I am not sure by how much, and I am sure even the most pre eminent sociologist or medical researcher couldn't quantify how many premature births this may prevent. So many women do not know why their babies came early, and would have done anything to prevent this.

And just how much addressing poverty will prevent 23 weekers, who knows whether it would make much impact at all, and if so, not for a long long time.

I think what is important is that we continue to research the specific causes of prematurity - pre eclampsia, incompetent cervix, infection, premature rupture of the membranes, carrying multiples, as well as addressing factors such as smoking and drug use.

I also think education, right from the beginning, is important. In school we teach contraception, we should aslo be teaching what parents need to do if they do fall pregnant, how to take care of themselves and their unborn babies. It's no use just hoping that teenage pregnancy will just go away, it won't.

I think more needs to be done in ensuring services are correctly placed.We are very fortunate in this country that we have universal healthcare. Ante natal care is provided to everyone, but we need to ensure that it is accessible to everyone, and that all mothers understand the importance of keeping up their appointments, and following the advice given, particularly in relation to lifestyle factors. My own hospital's maternity and special care unit is closing. This unit is in the heart of a socially deprived area, and in fact my town, Bury, has one of the highest uses of crack cocaine of any town in England. By removing services, and centralising them, we make it even harder for people living in poverty to access them. We also need to make services more relevant, more accessible, and to reach people where they are at, both physically and economically.

I feel strongly that we need a follow up programme on the BBC explaining the causes of premature birth, and addressing specifically how we can reduce the incidence of premature birth, and ensure that every child is given the chance to grow up healthy and happy, and to prevent the heartbreak of having a baby born too small, too soon, too sick.