Monday 31 January 2011

The Blog Dare - End of Month One

I am really pleased I took part in the Blog Dare. To be honest I was only going to take part for January, but I think now that I'll stick with it, its been very enjoyable and I've learned a lot.

I think the best bit was doing the controversial post, and realising I had enough for a week, perhaps longer, and its been fun blogging about things outside my usual sphere.

I'm going to try and take part in February, which will be a challenge, as I will be away for some of it.

So thank you everyone for encouraging me during this month, I have been successful in posting everyday!

P.S I am still waiting for Joseph's explanations of his weird eating behaviour!

Sunday 30 January 2011

Complications of Prematurity - NEC

This post is in memory of all the special angels no longer with us due to NEC, but particularly Freddie, who lost his brave fight this weekend, born at 23 weeks + 6 days and on this earth for just over 3 weeks. 

This post is based on my experience, it is informed somewhat by reading and what our doctors said to us, but it is to be taken merely as my thoughts, if you need more information please consult your child's medical team.

NEC is perhaps the most pernicious and evil of the complications of prematurity. It strike regardless of gestation, and it can appear at any time during the child's NICU journey. It's potentially fatal, and can cause long term problems. It can occur more than once.

NEC is the abbreviation for Necrotising Entercolitis. Necrosis means death, so we are talking about death of tissue. Enterocolitis is the inflamation of tissue in the small bowel or colon.

Precisely what NEC is and how its caused is not completely known. The signs and symptoms are not always easy to spot, but usually a distended abdomen, problems with passing faeces, sometimes the appearance of blood, and usually blood tests will show signs of infection and necrosis. It is believed that giving the baby breast milk rather than formula may assist in preventing NEC, however it can still occur in breast fed babies.

Treatment is usually the cessation of feeds into the stomach, treatment with antibiotics, release of gas in the stomach, and sometimes surgery, cutting away the affected parts of the intestine and sewing them back together, usually with a stoma, so the excrement bypasses the lower parts of the bowel.

The treatment of NEC can cause lifelong problems, Sara, a friend I met through Bliss has agree to share a photo of her little girl, Ellie now 2, which illustrates the external problems that NEC can leave.
Sarah says
I feel very strongly about this subject as it nearly took my daughters life, i dont think people realise how fatal it can be. Ellie got it when she was 3 weeks old and weighing 800g at the time, she had 15cm of small bowel removed and two t...hirds of her colon including her apendix. She had a stoma and the effects of NEC have not only left her with a terribly messy scar but bowel problems for life, the valve in her bowel which retains water was removed so now everything passes through her very quickly and loose. She caught NEC for a second time when she was bigger but it was treated with antibiotics.
She goes on to say,
(The) surgeon wants to try and neaten it before she starts school. She has been left with long term bowel problems, frequent loose stools and is on sodium suppliments and immodium for it. She is also going to start monthly vitamin B12 injections as the part of the bowel that absorbs B12 has been removed.
This is one of the reasons that babies are transferred in the beginning of their NICU stay. Joseph was not transferred, and when he caught NEC we were in a hospital where surgical treatment was not possible. At the time I did not understand the full implications of NEC, and did not wish to know, as all I knew at that time in that some cases, the outcome was not a positive one. The team were in a quandry - Joseph was very small and may not make the transfer, or he may not survive due to not being able to have surgery.

Joseph was treated with antibiotics and cessation of feeds, and a long line was inserted so that Joseph could be fed intravenously. We were extremely fortunate, that these methods all worked, and the NEC was arrested. Joseph is still monitored every six months by the paediatric team, and they still monitor his bowel performance (which I am happy to say is in full working order, and did not sustain long term damage)

There are times when NEC cannot be successfully treated, and ongoing research is being done in this area. Often these babies are the tiniest of babies and surgery is incredibly specialised and difficult.

I've blogged about this in the hope that if you have a friend or family member going through NICU with their baby, you may be better placed to understand what is going on. Sometimes its confusing to know that a baby needs feeding, but to hear that feeds have stopped is very confusing.

I hope that over time micro surgery improves, and the knowledge of the small bowel also improves and we see the outcomes for these poorly babies improve greatly with as well, currently there is an 80% success rate for babies with suspected or actual NEC treated with antibiotics and conservative treatment, and a 50% success rate for those who have had surgery, but as we have seen these success rates only tell half the story, we do not know how many children have long term issues as a result of NEC.

Many thanks to Sara for sharing her and her daughter's story. I wish them all the very best for the future.

Saturday 29 January 2011

Bed time

This photo was taken last year, in Australia. Back then, Joseph's beloved blankie looked shiny, bright and new, and certainly smellled better. I am a little concerned that it may be confiscated this time, as we cross the Aussie border, as it is pretty horrid!

We are blessed to have a baby and now a toddler, who loves sleep. He is great, you can pop him in bed awake, and he just sings, snuggles his blankie until he goes to sleep. We have always run a fairly tight ship, bed time is bed time. We've always had lots of fun at bed time, songs and games and stories, but once he's in bed, he's in bed.

I do believe its important to start as you mean to go on, that isn't to say that the plonk 'em down and leave them to it method will work for everyone, but I think everyone should give it a try! I think sometimes we can overthink babies sleep routines and what works best. A kiss, a cuddle, and pop him in the cot works for us.

Friday 28 January 2011

A Letter to My Toddler

Dear Joseph

My darling boy child, I am so proud of you in so many ways, you have come a long way in the past 20 months, and I think you are amazing.

However, I feel that at this stage in our relationship, I need you to clarify the following points:-

1. Why, when I make you a sandwich and cut it into four, do you feel the need to take one bite in each piece? And then rotate each sandwich doing the same until each piece is eaten.  Why is this? I don't overly care that you do this, I just want to know why. Also on the sandwich issue, why must I chop the crusts off fresh sandwiches, but keep the crust on toasted sandwiches. This makes little sense to me.

2. Why is it, that when I give you a whole apple, you happily nibble at the apple, skin and all, but when I chop it into quarters you eat the flesh and fling the peel on the floor?

3. Can you please advise me on which days of the week you will eat grilled cheese and which days you prefer not to? I have tried to fathom out a pattern and have drawn a blank. If you are going to fling grilled cheese can you please ensure it stays on the mess mat. Thank you for your respect and concern in the matter.

4. Now that you have 12 teeth, can you please let me know when you will be able to manage meat as my repertoire of dishes using mince as a finger food is becoming stretched to the limit.

5. Can you please advise me why bananas are particularly funny? I am pleased you like them, but why do you laugh at them? Am I mising something?

6. Salmon. Please tell me about the salmon. Did I over use it? Am I not buying line court, wild salmon, from some exclusive far off Loch, where am I going wrong with the salmon? You used to love it and now you fling it!

7. On said vein, can you please advise the carbon police that me purchasing Vietnamese river cobbler is to appease the terrorist oh I mean toddler. Can't be doing our carbon footprint any good whatsoever!

8. I watched enough food programs in the womb for you to now understand eat local and eat seasonal. Your blueberry habit, whilst endearing, is making a further imprint on our carbon footprint and not doing my (failing) eco credentials much good.

9. Also, on the blueberry issue, why do you like the French, and the South African, but not the Croation blueberries? Surely to the dear lord in heaven there is not that much difference? Surely, particulalry to a toddler a blueberry is a flippin blueberry? I feel like a complete nut going through all the punnets checking where the blueberries are from. It's embarrassing.

10. Spoons, dear child. I know I tried to bring you up the Baby Led Way as much as possible, and your increasing independence means you are unwilling to be spoon fed. And that is perfectly fine. But you know how to use a spoon so why don't you? You hate having your hands wiped and washed, so why eat porridge with them? There is no need. Please use a spoon!

11. Would you please at least try a chocolate button. I know it's not from a rare cacao tree grown in Java from a single estate where the staff have 4 days off a week, and live in mansions on the side of a hill. But its yummy and you will like it. I am very proud you like 70% cocoa Green & Blacks, but there are times in a mummy's life when emergency buttons are just a necessity.

12. Tomatoes are not evil. They do not deserved to be licked, then thrown, unceremoniously from your high chair. They should be respected, loved and ultimately eaten.

That is all on the food issue for now, please have your answers on my desk by Monday afternoon. Thank you.

Your mum x x x

Thursday 27 January 2011

Staying At Home

I don't work, but I've never worked so hard in my life. When we found out we were expecting, I wanted very much to be a Stay at Home Mum (SAHM). I never really bonded with child care when I was little, I'd had a rough time finding a suitable father for my child, and difficulties getting and staying pregnant. So, I wanted to be able to stay at home and be with my child as much as possible.

Also, for one reason or another, I have never had a career job. It's never really bothered me, but the downside is, with the sort of jobs I have had, they haven't earned enough for me to be able to pay for childcare and the other costs associated with working and come home with a profit, and my husband earns just above the cut off for help with childcare.

Also, with premature babies, there are other issues. Premature babies are at higher risk of infection, and nurseries are a very good place to pick up bugs, as there are lots of children coming from diverse areas, and with older brothers and sisters at school, its very easy for premature babies to pick up illnesses. An illness that might send a term infant back to their beds to sleep it off, can land a former premature baby into hospital.

So for all those reasons, I am a Stay At Home Mum, and for the most part, I love it. It causes friction every now and then, and we've had the odd "What DO you do all day?" arguments with my husband, when the house hasn't been done satisfactorilly, which I can completely understand. How can you explain the time vortex that a baby/toddler creates? Things that used to take me 15 minutes can take an hour, or more! Sometimes I have best intentions of doing something, and Joseph just doesn't allow it!

In the early days, when on maternity leave, life was sweet, we had extra pennies to go out for coffee and cake, to go out different places, to go shopping. Now without that additional income it can sometimes be very limiting, in summer and spring there are endless free and cheap things to do, in winter, not so much. In the early days there were free classes, baby massage and baby signing, and baby groups. Now it's harder. As fewer and fewer families can afford to have one parent off work, there is less demand for toddler groups. And legislation and OFSTED regulations make the setting up of ad hoc groups harder and harder.

I love my days with Joseph and we're finding more like minded mums for playdates, and we enjoy our time together. It's so fun watching Joseph learn and develop, and to find new things to do. Its wonderful to see him get the hang of a toy, or learn to make things with play dough. It's fun to be able to go and feed the ducks, or play in the local park. And the financial sacrifices are definitely worth it, because before too long he'll be in school and our long lazy days together will be a distant memory.

Cybermummy 2011 update

I am delighted to announce my sponsor for Cybermummy 2011, Zu3D! I am so proud to be sponsored by Zu3D and look forward to telling you all about them. In the meantime, check out their animation software and have a look at the examples on their website.

Wednesday 26 January 2011

Cybermummy 2011

I've finally come to a decision to attend Cybermummy 2011 My main motivation for attending Cybermummy is to improve my blogging skills, and raise the profile of Not Even A Bag of Sugar. Over the course of the past year I have been overwhelmed by the response to my blog, and want to make improvements, learn new skills, and make Not Even A Bag of Sugar a vibrant, living resource for parents, particularly of premature babies, or those with additional needs. I also want Not Even A Bag of Sugar to be fun, and lighthearted too, as being a parent of a premature baby is not all hard work, and its not sad, its exciting, fun and frustrating at times too!

Cybermummy is held in lovely London, this year on the 25th June 2011, and to this end I am looking for a sponsor.

The costs for me to attend are as follows
£100 for the ticket to attend Cybermummy
£70 approximately for the return train ticket Manchester - London

Total cost - £170

Accommodation is being provided by a friend.

In return my sponsor can expect to receive a bespoke package from me which can include

* a review and promotion of your business via a blog post
* links to your business on Twitter and Facebook, I have almost 600 friends on Facebook, over 100 blog subscribers, and over 700 Twitter contacts.
* a badge and/or banner on my blog for a period of time which we will agree together
* promotion of your business by way of a badge or t-shirt at the Cybermummy event

If you would like to discuss this opportunity further please contact me at

The Chocolate Cafe*

For my regular Facebook friends and Twitter followers, its not secret that I love The Chocolate Cafe. Since it opened a few short years ago, the cafe has become an integral part of life in the small town of Ramsbottom.

The Chocolate Cafe is very thoughtfully located next to my doctor's surgery in the heart of Ramsbottom. I spent many days at my doctors surgery during my pregnancy, and would often pop in for a sandwich or a salad, and a Tea Pig herbal tea. Joseph, whilst in utero, banned chocolate consumption, sadly.

Very often would be mummies, with their little babies or toddlers, having a brew and a piece of cake, and chatting with their little ones, sometimes in groups of other mums, some times just on their own. I couldn't wait for my own little baby to be born in August so that I too could sit with my little one, drinking hot chocolate, and chatting about our day.

During my pregnancy I had counselling for anxiety, and I learnt lots of good things, the most valuable being creative visualisation. This becomes important later!

When everything went wrong with my pregnancy, I was shattered. Everything had suddenly become difficult, and sad. My baby was fighting for his life, and I felt like I was lying in the wake of this huge aftermath, trying to pick up the pieces. As hours and days went on, I remembered what I had been taught, and started to get stronger.

One day, towards the end of my admission, Joseph was a bit stronger at almost a week old, and I was sitting in my room in the maternity ward with my journal. One of the lovely midwives (there were two types of midwives up there - the lovely and the not so) came and sat with me.

"What's keeping you going?" she asked. "You are always so happy, and focussed, what is it?" I smiled and said  "The Chocolate Cafe". I explained to her that I was visualising, that come August, I would be sitting with my baby, drinking hot chocolate and eating cake. I used to sit by the incubator chatting to Joseph, and one of the things I would chat about was what our days would be like when he was finally discharged.

What I hadn't visualised, and couldn't have predicted is that I wouldn't be alone. The first time we came to the Chocolate Cafe in August. I wasn't alone. The first time we came, there was 10 of us, five mummies and five tiny babies. Every Tuesday for months we would come and sit and natter, drink and eat. As maternity leave has ended, mums have returned to work, and the remaining mums have tightened their belts, our meetings are infrequent. But the Chocolate Cafe remains a place we go to celebrate and to escape.

So what makes The Chocolate Cafe so good?

* It isn't all about chocolate. It's about local produce, best quality bread for sandwiches, fresh fruit and vegetables, making the most of what is readily available locally. Its about hearty soups, and cheese on toast, it's not all about chocolate.

* When it is all about the chocolate, its the very best, fine chocolate, not rubbish full of fillers. It's about really tasting it and savouring it, not gorging yourself silly on Dairy Milk.

*It's about having fun! The Zotter drinking chocolates in particular, are great fun, lots of different flavours. In the shop you can find chocolate flavoured with bacon bits, and all sorts of things you wouldn't associate with chocolate.

*The Chocolate Cafe is all about families, but it isn't childish. If you're looking for kiddies packs with crayons and colouring in books, you won't get that here. The children's menu replicates the adult menu, and contains good, real food. The Chocolate Cafe is all about treating the smallest guest as a person, and respecting their needs.

*Nothing is ever too much trouble. There is a buggy park in the shop and the cafe is upstairs. No one ever hesitates at helping you carry a sleeping baby in their pram, or moving furniture, or cleaning up when your baby specatularly vomits all over your brioche (not looking at anyone in particular, Mr Joseph, not al all)

*But most of all the staff and owners are passionate about what they do, and are passionate about making their customers happy and leave with a smile!

So if you visit Manchester, make the trip on steam train, bus or car, and visit The Chocolate Cafe, you won't be disappointed. (Unless you visit on a Monday, then you will be disappointed as they are closed!)

*This was not a sponsored post, I just wanted to blog about The Chocolate Cafe as its fab!

Tuesday 25 January 2011

Out Laws

I've asked for topics for my blog, and it was suggested that I blog about in-laws. Now on the in-law front I have been very lucky, and I have lovely in-laws, who my son love to bits, as can be evidenced in the pictures above.

However, of course, life isn't all a bowl of smarties, and we've had one or two differences over the last year or so. And to be fair, the majority of which were down to me, I wouldn't go as far as to say they were my fault, but more the product of my traumatised adult brain.

So rather than focus on me, lets look at why in laws sometimes drive us nuts. I've found that the biggest problems usually occur with the new mum and the mother in law and occasionally father in law, so here is what I think the big issues are.

1. Often, the only thing we have in common with our in laws is our love for the son/husband/partner.

2. We come from different family backgrounds with different experiences of child rearing.

3. Accompanied with these inherent differences, ideas and practices about child rearing change all the time. Our mothers in law might have weaned at 12 weeks, or might have given rusks as first foods, or be happy to give chocolates at a young age. They might have left their babies outside to sleep in all weathers.

4. Often, particularly if we don't live near our in-laws, the times spent together are very cloistered and very intense, for example in our case, we have to stay in each other's houses, which is usually fine, but sometimes, if there is a bit of steam that needs letting off, there is no where to do it.

5. When we are new mums we can be like lionesses, very protective of our young, and loathe to let them wander into the extended pride.

6. Some in laws (and gladly not mine) just have no clue and are not prepared to listen. Some older people find it very hard to accept new family members, and find our ideas quite difficult, or even repulsive.

I am very lucky in that our perspectives on raising children are very similar. I found it difficult at the beginning, because everything seemed so different for us. In my husband's family, breastfeeding is the norm, and I was unable to do this, and I felt I'd let not only my baby down, but the whole family, which is an enormous pressure. One day my dear son did a huge enormous projectile vomit all over the kitchen of my mother in laws house. Father in law bellowed that that wouldn't have happened if Joseph had been breast fed. Fortunately my mother in law is a midwife, and all three of us glared at him!

When I first had Joseph I was in the delivery suite on monitoring and could not see him, my in laws happened to be in the country (they live in Germany most of the year) and came to see me, they fetched all the things a new mum needs, fresh pyjamas, toiletries etc, but my mother in law did the kindest thing, and said they wouldn't go to see Joseph in special care, as I had not met him yet, and for that I am forever grateful. I found it so hard to overcome that period when I was apart from Joseph, and I'd had to share him for so long with nurses that I didn't want anyone else to do anything with him.

I think, though, that at times, in my first year as a mum, I forgot that they (and even my own parents) would want a deep, loving relationship with Joseph. Like that lioness, I felt very protective, and jealous. I didn't want Joseph to love anyone but me. It seems so alien to me now, and somewhat ridiculous, as I had a very close relationship with my grandmother.

I am very grateful to my in laws, who love Joseph, and me, and spend a lot of time thinking of us, and buying thoughtful gifts, and we are together, finding cool things to do!

But I am aware that I am one of the lucky ones, and look forward to hearing your in-law stories, good and bad!

Monday 24 January 2011

7 Things About Me

Street Musicians

I have been very kindly tagged by Rachel who writes the blog Tiny Little Baby in her meme post. Rachel is also the creature of the brilliant Starting Life in the NICU.

So the challenge to tell you 7 things about me, preferably things the majority of you don't know already!

1. I played the violin for 12 years and was in the Tasmanian Youth Orchestra, which I loved. But I never wanted to play classical, I wanted to play country style fiddle, much to my music teacher's disgust.

2. I got married at 21 and did my entire wedding for a $250 budget.

3. I celebrated turning 30 by finalising my divorce and moving to England for a fresh start.

4. I was an aunt as soon as I was born, and became a great aunt the year before I had Joseph.

5. In 2004-2005 I diligently worked at my weight and lost 5 stone, and it breaks my heart that I put it all back on again, save about 7lb, but at least I didn't gain more, and this year I'm going to chip away at it again. And this time, not regain bad habits.

6. I love the gym, and most of all I love weight training. At the peak of my fitness I could do a leg press of 120 kilos. My favourite thing to do is work out on the swiss ball, and at my old gym, the big fit guys used to ask me to help them on it!

7. One of the highlights of my life was seeing Joe Jackson in concert in 2002, I never thought I'd get to see him, and the ultimate was being given Graham Maby's plectrum.

So that's enough about me, I want to know about some of you so have tagged the following people

The lovely pink princess who blog writes this very funny blog, because one of her evil friends told her to!

The equally lovely yummy mummy Jennie who writes this inspiring blog about her experiences having twins.

Sunday 23 January 2011

Father's Day

Having a baby born too soon, too small, too sick is a massive shock for the mother, and for the father. Nothing can prepare a father for suddenly having a baby that needs special care, whose life hangs in the balance. What shocked me the most, was discovering that in the paternity leave (and maternity leave, for that matter) rules, there was absolutely no provision for emergency situations such as premature birth, or babies born with life limiting conditions.

Standard paternity leave is two weeks. When a baby is born prematurely, they are usually in hospital until around their due date, sometimes considerably longer depending on various medical factors, and whether surgery has been required. In the case of Joseph he was born 13 weeks early, so I knew we would have a long haul.

Corey took a week off when Joseph was born, to support me in hospital, and to be by Joseph’s bedside as much as possible. He had to take that week off as annual leave, his employers would not allow him to utilise his paternity leave, as he had not given notice (how very inconsiderate of us not to let them know in advance!)
During the whole time Joseph was in hospital, Corey took one day off. I was having problems being heard on the unit, and was an even more strung out mess than usual, and he came with me one day, the rest of the time Corey would visit Joseph in the evening, on the way home. 

Like many men, Corey wanted to save his paternity leave for Joseph coming home, and this is what many men choose to do.

I found during our time on the unit, that our unit was very much focussed on the mother, father’s were rarely considered or consulted, and my husband got some funny looks when he insisted on doing kangaroo care (he resembles a mountain gorilla, bless him!) He felt very left out a lot of the time, and helpless. At least I could express, and I had a small amount of medical knowledge, so could have the difficult conversations, and I knew where to go if I needed help understanding information. A lot of it just passed Corey by, or frightened him, so he didn’t want to know more.

Once Joseph finally arrived home, I found the pressure immense. The first weeks were fine, with Corey there to help, to consult with when the baby did strange things, and to make brews and fetch shopping whilst I looked after this confusing, demanding, but very cute, small thing!

When Corey returned to work, I found it tough. I was teary a lot. I was having intrusive thoughts. I didn’t really know what to do or where to go. It was a truly horrible time. And my husband would get home from work to be faced with a stressed out wife, and a confusing baby, and not really know what to do with either of us.

I always feel a little uncomfortable talking about financial aspects of having a premature baby. I was told off once, by someone who was having difficulty conceiving, for talking about the pressure of buying nappies, paying for bus transport and meals whilst Joseph was in hospital, that I should shut up, and be grateful for my baby. I felt suitably chastised, and never moaned again.

However, having a baby is a huge financial pressure, and having a very early baby is an even greater one. My husband could not take more time off than he did, as he had no leave left. Even if we could have afforded it, his company would not allow leave without pay. His only option was to go on sick leave (annoyingly, in 4 years my husband has had 3 sick days) and he refused to do this, and quite rightly so, why should he have to?
I know we are under immense financial pressure as a nation, and that benefits are being cut, seemingly on a daily basis. However I fail to see how it is fair that businesses can get away without supporting families in a time of crisis. I am not asking for massive handouts, or loads of leave, but just some flexibility and consideration. And I do think it should be legislated. Surely, in the grand scheme of things, this would prevent people from going on benefits. I know families who have split up because of the financial, physical and emotional demands of having a premature baby. I know parents who have gone on to Income Support, because they can no longer work. Surely, a flexible, supportive approach in those first, crucial weeks, could facilitate families being able to stay together, and to get back on their feet following the crisis, without having to rely on benefits.

When you have a premature or poorly baby, your world is turned upside down, for a short time, it freezes, but whilst your life is now stuck in a unit, by the side of an incubator, your bills mount up, your rent or mortgage still needs paying, and life marches, cruelly and brutally on.

Saturday 22 January 2011

The Gang of Five

I found our first weeks of special care hell on earth. I am sure, if you don’t know me in real life, or from social networking, you can get the gist that I am a friendly, outgoing person, and so is my husband. We love to natter to others, and share experiences. There is nothing worse for us than being cut off. 

The layout of our unit was such that Intensive care is the first room you come too as you go through the second set of doors, right opposite the nurse’s station, then is high dependency, and at the bottom is the nursery, the last stage before being booted out back into the corridor to room in and go home. Behind the nurse’s station are some extra rooms, for twins, for breastfeeding,  and for isolation for babies who have been born elsewhere and then come into the unit.

Joseph was usually the only baby in intensive care, being a small unit they only had resources  for one intensive care baby, and perhaps one or two babies passing through on their way to HDU. So as a result we were pretty much on our own.

We found that people were too frightened to talk to us, that our baby was so small. In the end I wrote an open letter to the parents, saying we were happy to talk to anyone and they could ask questions or look at our baby with us, we were fine with that.  Everyone always said the same things “oh he’s just so small” and “how can you stay so positive?” One of the cleaners came in once whilst I was in with Joseph, and she was so quiet, I said “its fine to say hello to him, Joseph would like that” and she said “oh good, I always do, but I thought you might get upset”, over time everyone got more comfortable with me and with Joseph, and I actually had some lovely times whilst sitting by Joseph’s incubator, and later, his crib. 

Over time I started to make friends on the unit. Toward the end, there were four other mummies and their babies, and we became firm friends, helping each other, looking out for one another’s babies, and generally just being a friendly face when we came in each morning.  We were all discharged around the same time.
Every Tuesday we met for coffee and cake at the Chocolate Cafe in Ramsbottom, at first with tiny babies in car seats. Slowly, week after week, our babies grew, and our chats weren’t just about babies, we talked about anything and everything. And then came the occasional nights out, and sharing in our babies‘  first birthday parties.

Since our discharge, well over 12 months have passed, and we are all still friends. Unfortunately three of the mummies have gone back to work, so we can’t meet every Tuesday anymore, but we still meet up when we can. 

These 4 mums and their babies have brought such a joy to me, and to Joseph. It’s so lovely that we share this special bond, although it doesn’t define us anymore, we’re not five mums who met in special care now, we are just five friends, who happen to me mums. 

And that’s wonderful.

We Know So Much....

In today’s blog I want to cover two things, firstly, what information should be available to prepare women for things not going to plan, in the event they have a term baby with problems, and secondly, how mothers with term babies are dealt with on the NICU, particularly by other parents.

When we are pregnant, we have access to so much more information than our mothers did. We have scans and access to tests that they could only have dreamt of. We have magazines, books, television programmes, and, of course, the internet. A lot of this information isn’t passive, we can ask questions, and get opinions. We have the ability to know so much more about our unborn babies than ever before.

I think sometimes, in books and magazines, that a very rosy, very perfect picture of childbirth is depicted, the dream is on offer, a 40 week pregnancy, a lovely labour, and at the end, a perfect, adorable bundle of joy. Occasionally there are the stories presented of special situations, usually a real life scenario, with before and after pictures, and usually accompanied by a disclaimer stating that these cases are very rare. No one ever wants to feel that this will happen to them.

I talk a lot in this blog about premature babies. Obviously this is my only direct experience of childbirth, having a premature baby. However, during this journey I have met other women who have had difficult times with their babies, and these babies were born at term.

One of my friends felt that she was completely ill prepared for her baby having problems. She had a long, difficult labour at 40 weeks + 3 days. Everything was assessed as being normal and she was sent home, with her baby after delivery. A few days later, her baby stopped breathing, fortunately her mother in law stayed calm, and resuscitated the baby. This mother had to stand by whilst numerous tests were conducted on her baby, many of them invasive. She felt cheated and let down by the books and magazines that never said anything about a term baby perhaps not being mature enough, as it turns out, her baby had severe reflux. So severe that many of the treating doctors assumed that he was, in fact, a premature baby.

I understand, to an extent, the problem that editors, authors and journalists have. No one wants to frighten expectant mothers, and make them feel that there could be problems. I remember, at 24 weeks, buying new speakers for my iPod, DS Lite games and stocking up on magazines and books, because I knew pre eclampsia was on the horizon, and all the books I had read made it sounds like I would get 6 weeks bed rest. I do wish I had been better prepared mentally. I thought the only extremely premature babies were those born as a result of premature labour, or premature rupture of the membranes, or mothers who had been in accidents. I had no idea a caesarean would be performed so early.

The second issue, is that of mothers who find themselves with term babies in the NICU/special care baby unit. I was on our unit for an extremely long time, 10 weeks is a very long time on our unit, most tour of duties last between a couple of days and three weeks. 

For many reasons, term babies, or later gestation babies, might come on to the unit. They may have a physical problem not diagnosed in utero, they may have a problem that was known about and the stay is expected (in our unit this didn’t happen so much, as these deliveries would normally take place at a hospital with surgical facilities), they may be struggling with breathing, or temperature regulation, or have severe and persisting jaundice. 

As a long term patient, I was a bit of a fixture. I always had a smile and a hug ready for anyone who needed it. I think sometimes, people think I’m stupid. I may, at times, come across like Polyanna, cheerful, happy and ready to see the good in everyone, but I am not dumb, I have ears and eyes. 

There were two things I noticed. The first was at times that some mums of term babies felt ashamed talking to me. My baby was very small, Joseph looked like a skinned rat for a lot of our stay, and he did look poorly with all his lines and bits and pieces, but after his first 20 days, he was stable, just small. People would say “but it’s nowhere near as bad as what you’re going through”. But what I used to say is what I still say now, any amount of time in NICU feels 10x longer than time outside. Days drag. And the stress  and pain of having a baby that can’t be held, that can’t come home with you is the same, whether the baby is a 27 weeker or a 37 weeker, is 1lb 7oz or 7oz 1lb. It makes not a blind bit of difference. It is not a competition.

However, I heard other mothers being bitchy. Like a large baby didn’t deserve to be in that place. It didn’t help that on our unit it still had the old plaque on the wall “premature baby unit”, which was a historical sign, and whilst nice to have that piece of history, does not help when you’re the mother of a term baby, battling to justify your presence in that place.

I strongly believe that we need to be more open about the possibility of complications, that although we have fancy scans, more ante natal testing available than ever before in medical history, that there are still secrets in the womb that will only be revealed at delivery, or even in the weeks beyond. And that needs to be given in formats that most people have access to, television shows, magazines, and  mainstream pregnancy books, not only for those mothers who might be in that position, but for mothers who may find themselves next to those mums in the special care baby unit.

In my dim dark past, I was a card carrying, Evangelical Christian. One of my favourite songs was “brother let me be your servant (now changed to brother, sister let me serve you)

My favourite line of this song is “pray that I might have the grace to help you see this journey through.”
When we are in special care, we are all in the same, dark, scary boat on unchartered waters, often without a map, and with an absent captain. We should be there to help one another, to shine a light, and to steer that boat to safety.

Friday 21 January 2011

Message in a Bottle

Some NICUs in this country are fabulous, and are set up to provide high level support for women who want to breastfeed their premature babies. Others, sadly, are greatly deficient in this area and fail to provide consistent, expert, informed advice to mothers. This post is about such units, so if your experience was a good one, feel free to miss out today, and join me tomorrow!

Having a premature baby is a massive shock. One minute your sat on the internet ordering maternity clothes for the third trimester, the next you are in hospital, one way or another, delivering your baby. You have missed out on getting a nice bump, having bump art and/or casting, a proper labour without the stress and the guilt, and having your baby delivered onto your chest for skin to skin, and those first attempts at breastfeeding.

All NICUs that I know of are very keen to ensure mothers express. Most have machines you can borrow. In our hospital the machines were ugly, nasty things, been in that unit for years, they were noisy and “grabby”. I hated them. So much that I shelled out £200 for a decent one, afterall, I would be breastfeeding mother long term and it would come in handy.

I felt a lot of pressure to express. It didn’t worry me, as I knew, as soon as I was told that I would be delivering at 27 weeks, that I would be required to express. In my mind I was expressing partly to feed my baby, but mostly to ensure my supply would be kept up ready for Joseph to make the transition to full breastfeeding once his suck swallow reflex had developed at around 34 weeks. 

As the time came to start breastfeeding, I felt resistance. At first I thought I was being paranoid. Only one lovely nurse helped me in those early days, and she admitted that she “wasn’t a fan” of breastfeeding, but had recently completed some training. Slowly staff began, one by one, to tell me that it may not be possible. Joseph was too small. In desperation I ordered this book. I read it, I put it on top of the incubator whenever I could, to get my point across.

I was asked to introduce bottles. I was very concerned about this, as firstly, the book advises against it (the book is actually written for staff in NICU not parents), and secondly I was very concerned about nipple confusion. I also knew that the baby’s action on the breast is different from the bottle. I was dead against it.
The pressure I was under was immense. The consultant was brought in to deal with the obstructionist, difficult mother (who moi?) and made it clear that the policy was to combine the two and it would be fine. Fine. All the other babies were managing it. I felt like screaming. The other babies were all later gestation and not IUGR. I knew for a fact that some weren’t managing both.

To my great shame, I gave in to the pressure. I wish I hadn’t. I agreed for one bottle to be given late at night, for comfort, but that was it. Of course, this opened the floodgates. I was under even more pressure. One day one of the nurses suggested I give the bottle. It was my breast milk, but it felt so wrong. I cried as Joseph sucked, and took almost all of it. It was the beginning of the end.

Soon after, my breastmilk dried up. I don’t know whether it was the psychological impact of dealing with the NICU staff, and of seeing Joseph take a bottle, rightly or wrongly I felt rejected. I don’t know whether, in the greater picture of things, it was the physical and mental trauma I had been through. The blood pressure drug , methylodopa, that I had been on for 2 weeks leading up to Joseph’s birth and four weeks after, bolsters the supply so coming off it, may have caused my milk supply to drop, in addition magnesium sulphate can, too, affect supply. Perhaps it was a combination of all of it.

One I had agreed to bottle feeding, discharge planning had been put in place. I had no idea that this would happen. If I’d known, would I have given in even sooner? I doubt it, but the thought is there.
I really got the impression that in our unit, breastfeeding mothers were a thorn in their side, they stuffed up their neat little plans. It’s alright to have them pumping whilst the milk is going down a tube, but that establishing feeding takes too much time. 

I felt there was a distinct lack of expertise with small babies. One of the NHS trust breastfeeding advisors came to visit me on the unit (on my insistence might I add) and gave me loads of advice, then asked to see Joseph, and just shook her head.

My experience is by no means unique. Breastfeeding, true breastfeeding, is not encouraged on many units. There is a lack of time on NICU units for staff to provide additional services, and on small units, they do not have the resources to hire specialist lactation staff. I wonder, too, if there is pressure from the big formula producing companies. Cow and Gate products proliferated on the ward. 

At the heart of this, are mothers and babies. We are so conditioned now, when pregnant, that breast is best. We are told all the time of the benefits, that it protects babies from infection, it’s cheap, it’s portable, it’s convenient.  For the mother of a premature baby, its the closeness we crave, the feeling that only we can suckle our young, that only we can provide what they need. We have missed out on so much.
One of my friends put it best

“(lack of support for breastfeeding)..... makes me feel so cheated. I feel like I really missed out - no bump, no labour, no breastfeeding - hard to feel like a proper mummy”

Thursday 20 January 2011

Nobody's Fault but Mine

There is something that unites most mothers of premature babies. I haven’t met a mother who doesn’t feel this way. Who hasn’t sat by an incubator, tears welling up in their eyes, thinking this is all my fault?

As humans, our gestation period is 38 weeks (40 if you include the 2 weeks from your first menstrual period)  Our wombs are designed to keep baby’s in situ for that period of time, whilst they grow, their internal organs develop, and they lay down fat stores, ready for life in the outside world.

The very sad fact is, that particularly in first pregnancies, there are so many unknowns, and it is impossible to predict who might give birth prematurely. There are so many reasons babies arrive early, and in some cases, no reason at all can ever be found. Even in subsequent pregnancies, the first baby or second baby can be term, then inexplicably, things go wrong next time. 

But that doesn’t stop a mother’s guilt. It is our job to incubate our babies. And when there is a failure, it isn’t “one of the those things”, it’s us. I know of women going into premature labour who are told to push and feel very strongly that it’s wrong, that they should not be pushing yet. We are to blame, we should be caring for those babies in our bellies, not sitting in a scary hospital ward surrounded by equipment, staring and marvelling at our foetus like babies struggling for survival in the outside world.

When I was going through our journey in NICU I struggled every day with feelings of guilt. Every time Joseph had a bad day I would go out into the garden at the hospital and cry, blaming myself. When he cried inconsolably, when I held him and he buried into me, when he had unspeakable procedures done to him, I felt so awful, that my little baby was going through all this, and it was all down to me. Major and complete mummy fail.

Our NICU is in the heart of a very run down area of our town. There are many mothers going through NICU like me, with medical conditions or with spontaneous labour or premature rupture of the membranes, but then there are the “other mums”.

I recall vividly one day, there was finally another 27 weeker on the ward, a little girl. One day her mother was ushered out of the ward whilst x rays were done, she was thrust unceremoniously in the hall way, and left to her own devices. I looked for a minute, and marvelled at the difference. Everything was always explained to me, and someone would invariably offer to sit with me whilst Joseph had procedures done.

This mummy was different, she was 17, she was addicted to crack cocaine. I went up to her and smiled, popped my arm around her, and we went and sat down and talked about babies. She’d gone into labour on the bathroom floor. She was terrified and bewildered. Finally the curtains went up, and the ward was reopened, and she tiptoed up to her baby, and resumed her cot side vigil. One of the nurses came to me later and thanked me. She looked at me and said “do you know why she’s here?” I shot her a look back and said “because she’s had her baby prematurely and she’s scared witless – just like the rest of us”. Blame has no place in the NICU.

I didn’t blame that mummy. Who knows why she went into premature labour? There were crack addicts who were in advanced stages of pregnancy whilst I was on the antenatal ward, why had it happened to this mummy? It’s not my place to judge, it’s my place to be a mummy, and that means helping other people be mummies too. 

1 in 9 babies are born prematurely. There are a lot of mummies maintaining that bedside vigil, hoping, praying, and blaming. 

This was not your fault. It was not your fault your baby came too soon. It’s not your fault that you were unable to keep your baby inside. It really isn’t. Even if you did do something that looking back you wouldn’t have done, such as smoke, or drink or take drugs, there are people who do these things and have healthy term babies.

I don’t know why you had your baby early. I don’t know why I got pre eclampsia at week 27 and not week 37. I don’t know why. You don’t know why. Not even the highest consultant in the land can say why it happened to you and not your sister, or your friend, or your neighbour. 

This is not your fault or my fault, and the guilt and regret is not helpful, not moving forward into the future, it’s counterproductive.

If you’ve had a premature baby, in all honesty, I believe you have saved your baby’s life. You have gone to hospital in a timely manner, your baby can be treated, and your baby can grow, and through all this, so can we. It may be a cliché but “it’s all character building”, and if you learn and move through it, the guilt and regret, can make you a better mother.

Wednesday 19 January 2011

A Spoonful of Sugar

Do you remember being a child and being given a spoonful of sugar after a nasty cough medicine, or before it, to sweeten the taste? When Joseph was in special care I was quite stunned that I was asked to give consent to using sucrose solution before medical procedures. I had never heard of this before. At first, I consented. Most commonly it was done before heel pricks, and putting in lines. It was explained to me that the sweet taste would distract him, in truth, its administered as a mild analgesic. 

However after this had been administered a few times, I noticed Joseph would become agitated at the taste of the sugar, like he knew that the sweet taste would be followed by something nasty.  I was unconvinced about the use of sucrose. Of course, as mentioned before, I had a no Google rule during Joseph’s stay so I hadn’t questioned it. I should have realised that it wasn’t run of the mill when it was in a locked cupboard and two nurses had to sign for it. Imagine my suprise when I discovered that my scepticism about the use of sucrose was not unfounded, and that doctors and researchers have expressed concern, and in fact, some of the nurses didn’t like the use of sucrose either. 

After a few times, I asked for expressed breast milk to be used instead, and for Joseph this seemed to work much better, and my consent for sucrose was withdrawn. He enjoyed breast milk pipettes at other times as part of his mouth care, so he didn’t feel as suspicious about that! (at this time Joseph was still tube fed)
During my discussions with other mothers of premature babies I have discovered that the use of sucrose in NICU is not widespread around the country, in fact less than half of the mothers I spoke to had had sucrose used during the course of their baby’s care. 

There is controversy surrounding the use of sucrose in neo natal care. The studies that have been done are small, one that I read was conducted in Leeds and only had 15 participants, all 32-34 gestation babies.
The theory is that sucrose may have an analgesic effect, but it is highly short-lived, it lasts 5-9 minutes, so must be administered in a timely manner to have any effect. The effect of the sucrose is measured by looking at the heart rate and the baby’s facial expressions. 

There are a number of concerns about the use of sucrose. The majority of the concern surrounds the research. None of the studies have looked at the whole NICU stay, just instances of administering the sucrose and analysing the baby’s response to the procedure following. For a baby like Joseph, this is obviously a concern, during his initial weeks Joseph had several procedures daily.

There is concern that the long term neurological impact of using sucrose is not known, as there have been no studies, that I can locate, that have followed up these babies. The conclusion that all researchers have come too, and those analysing the research, is that much more research is required, in terms of long term ramifications of the use of sucrose, as well as more research in terms of extremely premature babies.

Since reading about this issue today, I have become upset and a little annoyed. I had a lot of issues when Joseph was in hospital, because I feel that I was not able to give informed consent. I was asked, but I didn’t know what I was agreeing to, I had no idea about the research or the controversy. I felt I wasn’t really given a choice, and am disappointed that there isn’t more quickly accessible information given to parents about the administration of sucrose. Of course, anything that made Joseph’s treatment better and more bearable, I was all for, but to me, there isn’t sufficient evidence that it is effective for repeated use over a number of weeks . Sucrose is safe, its cheap, and its readily available. It also is not “owned” by a drug company, and doesn’t require the same sort of licensing, and thus testing a drug would have to go through.

One of the problems in Neonatal care, it would appear, is that there is a limit to the pain relief options open to neonatologists in the case of very small and extremely premautre babies. Morphine is used for neonates, but none of the topical analgesics (that is, those applied to the skin) have been tested for the use in neonatal care.
I am grateful, however, that now it is widely known and accepted that babies from 24 weeks gestation have defined neurological pathways, and feel and can process pain, and that research is ongoing into this field. As a mother, I am so grateful that doctors and researchers care about pain management, and looking after our tiny vulnerable babies. 

I am also heartened that the following are recommended for pain management of infants as well as or instead of the sucrose:

Comfort suckling – on a dummy or breastfeeding
Containment holding
Procedures being “clustered” and done all at once where possible
Procedures being carried out by highly experienced staff
Kangaroo cuddles with the parents.

 Just a note: I did conduct research for this blog, I have not referenced it here, for a few reasons, first of all, this is a blog, its not a scholarly piece of work. Secondly, the works I have read are intended for doctors and scientists, not parents.

If you are intersted further, these are the pieces of research I found that were freely available

Avery's neonatology: pathophysiology & management of the newborn - available free on Google Books - and the best I have read on the topic

Tuesday 18 January 2011

To Where You Are

Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile to know you’re there
A breath away’s not far
To where you are

To Where You Are - Josh Groban

Posted in memory of the babies who are not with the mummies and daddies and siblings today - born too small, too sick, too soon. 

This controversial post, is like many this week, sensitive. If you have lost a baby, please consider whether reading this is what you need, in this moment. If you do decide to read on, I urge you to visit this link first, particularly if you have been in the position of withdrawing treatment for your baby. 

I was watching a cookery programme over summer, and one of my favourite quotes from that programme was “just because we can do something, doesn’t mean we should”. Although it applied to some weird fusion culinary technique, this quote pertains very much to medical science as it does to cookery.

And sometimes, we forget, that behind science lie lives, in this case very tiny lives. Advances in science mean that babies who, like mine, 20 years ago, would have been left to pass away, can be saved. And that’s amazing. And I am grateful. Forever grateful.

But , of course, saving tiny lives is not without its risks. Very early babies can suffer from life limiting conditions and severe disabilities, but also, they can be fine, productive members of society. They can struggle with everything from breathing to consuming food, cognitive development and mobility. Or they can breeze through and have no problems. I am sure, that sat amongst the ventilator equipment, the computers, the arsenal of medications, every neonatologist has wished for the crystal ball, which babies can be saved and have a high quality of life, and which ones can’t.

Of course, the problem is that some later premature babies or even term babies can have very severe problems, and the same debate pertains to them but perhaps to a lesser degree, the choice being less obvious that for those babies born at the very edge of viability, however I do address the problem of withdrawing treatment later in this piece. 

Currently, for premature babies, the guidelines are as follows. If a baby is born at 24 weeks or beyond, then every effort is made to give those babies what they need to survive and thrive.

If a baby is born sub 24 weeks, then it is considered a “grey area” and is assessed case by case. As far as I can ascertain, this is entirely a post code lottery. In some hospitals they refuse to do anything to help a baby born below 24 weeks. They will not administer steroids to the mother to strengthen the baby’s lungs, they will not administer life saving treatment when the baby is born, the baby is left to slip away. It’s a heartbreaking problem, during my journey with Joseph I have met some dear children who were born before the magic 24 week mark. 

So here, perhaps, we are discussing what happens with babies that have been born, the decision was made to commence treatment, but it becomes apparent hours, days, weeks even months later, that things are tough, that the baby is not able to make it, but can be kept alive with the help that it is receiving in hospital. 

The controversial Australian ethicist Peter Singer says the following about newborn babies “Human babies are not born self-aware, or capable of grasping that they exist over time. They are not persons”; therefore, “the life of a newborn is of less value than the life of a pig, a dog, or a chimpanzee.”

It seems so foreign to me, perhaps because I have now seen so many babies born as foetus, they look so full of life, and of wisdom, and of hope. I cannot understand Singer’s views on this at all. And I do not wish to. But his influential writings have been accepted by some doctors.

So which babies do we save? Which ones do we invest resources into? Do we try and save all babies born regardless of gestation, do we discriminate on weight? What do we do with the problem of these very small premature babies.

During my research I found this beautiful article and I urge you to read it in its entirety.  Dr  Davies feels strongly the decision lies ultimately with the parents. 

“When the best path is unclear, fully informed parents are the best decision-makers. No one is closer to that baby in blood, body and spirit than the mother and father. Their best guess is the best one of all. No one else can decide for their baby as carefully, thoughtfully, purposefully and solemnly as they do. No one else can be more agonized, calculating and soul-searching. This is a decision that must be made with the mind, gut and heart. Your own baby would want you to make this decision, not strangers.” 

I would not like to live in a world where we predetermine, at birth, who lives – who dies. It’s not a world I would want to live in. As humans, we embark on great things, such as scientific endeavour, and we have a great power to save lives, to push boundaries, to bring babies into the world who would otherwise die.
We need, in the midst of scientific endeavour, retain our compassion, our humanity, our love for one another and our interconnectedness. 

These problems and struggles will never leave us, and as a community its up to us to guide our decision makers, to inform public policy, but most of all, to hold the hands and the hearts of those parents faced with the most impossible of decisions.

Monday 17 January 2011

Again and Again

This topic is very emotive and I have struggled as to how to present it here. Please, if you have had more than one premature baby, I am not blaming you, or wanting you to feel anymore guilt that you do already. I'm just putting some thoughts out there, of my own, I am not judging anyone's choices. 

"So, when are you planning to have another?" It's a question I am asked often. Sometimes I can answer with a grin "no way Jose", sometimes factually "when there is a definitive treatment for pre eclampsia that doesn't involve swift delivery of the baby", and sometimes it sends me scurrying in tears. It's no secret. I want another baby.

But, as much as I adore my son, and don't get me wrong, I am grateful every single day for the care that kept him alive, I don't want another NICU baby. I am not mentally strong enough. As discussed before, due to various risk factors, my recurrence risk is around 80%, my consultant guesses she could get me to 30 weeks.

A lot of the time on my blog, I share the sadness of seeing your baby in hospital, of watching everything they go through, of keeping that bedside vigil, of weathering the highs and lows, the amazing soaring highs, and death-defying crushing lows, of a premature baby's fight for survival.

But there's another side to the story. The mother (and the father). Like most pregnant women I had read books, watched television shows, I bought the magazines and I bought the dream. No one talks in any detail about premature delivery, of what happens if you don't get your "normal experience". Yes, you see the odd success story, but magazines never explore the real story.

I feel cheated. Personally and at a deep level, cheated. I am so angry I didn't experience a contraction. I looked forward to labour, to experiencing it, being present in it, that challenge of pushing a watermelon out of the eye of a needle, I wanted it! I wanted that closeness with my husband, that moment of crowning, those final pushes, the baby delivered on to my flesh, the first furtive breast feeds, the finding out the gender together. I wanted it, I bought it, I expected to get it.

The reality is, I didn't get it, and I am not alone. But for me, we have stopped. No more babies. And its bloody hard to have made that decision, other people who had babies the same time I had Joseph have new ones now. And that will never be me. And it sucks. I try and be noble about it, but I feel robbed.

There are many reasons babies come early, most commonly there is no definitive reason. Therefore the ability to assess the risk of recurrence is somewhat impeded. The common reasons, such as incompetent cervix, can be mitigated with a stitch, but these are not 100% effective. Reasons such as infection cannot be predicted, and so little is known about recurrent infection and the risk of premature labour and delivery.

But what if you know. What if you've had three or four or more premature babies. What I haven't ever really explored here is cost. The avereage of cost of a NICU stay is £838. Not a week. A day. £838 a day! Joseph was in 76 days, admittedly not all at this high level of care, but his stay would be estimated at around £65 000. And that doesn't include my cost, two nights in HDU, surgery with double the staff of a normal section, and a 7 night stay afterwards.

Premature babies cost a lot of money, in our case, Joseph is well, and hasn't really cost the NHS any more than your normal baby. However some of these babies require an ongoing investment of care, both from the health service, and then in the educational sector later on.

I don't know what the answer is. I do know there are a lot of women who have had more than one premature baby that have no idea why their babies have come early and have been told "its one of those things". I know other mothers who have had very good follow up care and have gone on to have full term births next time, with stitches or progesterone therapy, and most often, both. I know women who have had pre eclampsia in first pregnancies who have gone on to have fine second pregnancies.

But I know women who have been advised not to go again, and have. Again and again, have premature babies. My husband has a relative who lost her life having her last baby.

I think the answer here is research and education, and straight talking from professionals. My own consultant was incredibly tactful when discussing my recurrence risk. She asked me if we were considering more, I said, probably no, but maybe. She ran through my risk factors. I ased her straight out "come on, if we're better off getting a puppy, just say so, please", I had to really press her, and then eventually she said it "yes, get Joseph a nice puppy, please!"

I think we should know the true cost of having early babies. I think we should know the long term risks. I think to make informed choices we need to be more open about what we are dealing with, risk of death (both baby and mother), the use of very finite resources, and the possibility of long term consequences for the child as it ages. Let us make a choice, but let us be informed. 

Not everyone is as lucky as me, to know the reason their child came early. Not everyone is as lucky as me. I never thought I'd have a baby, so to me, to have one baby, is an enormously massive, wonderful gift. Yes, I long for more (and a pink one would be nice) but I have my baby. Not everyone is as lucky as me.

Controversy Week

Today's blog dare is to write about a controversy in our chosen area that our blog normally concentrates on. I asked my followers on the Not Even a Bag of Sugar Facebook page for some suggestions, and have enough for a week. So I have decided to spend the week focussing on some controversial topics in the area of premature and poorly babies.

Some of the topics will be technical, such as the use of sucrose in the management of pain in premature babies, some will be very difficult topics, such as should mothers with a history of pre term birth keep producing babies, which are such a drain on NHS resources.

During this week I am bound to raise some hackles, or perhaps upset some readers, which is not my intention. The views I will express are purely my own, and are hopefully balanced, but I think it's important to not shy away from controversial topics but to embrace it, discuss it, and thrash it out in public.

I hope you find this week interestng and challenging, and please share your views too.

Sunday 16 January 2011

Writer's block

I'm having a brain freeze today. Some days when I blog I am overflowing with ideas, some days I am so grateful for the blog prompts on The Blog Dare, and other days I'm just frozen. The prompt today is about product reviews. I don't appear to be that sort of blogger. I don't know if I want to be that sort of blogger.

To be fair I have done one product review for Tiny Little Baby . But I bought the product and blogged about it because I felt it would help others. I didn't want or expect anything from the review at all, like any good book, I just wanted to shout about it, to help others in my position, wanting to document their babies first weeks but finding that normal record books just didn't cover it.

So I don't feel I can do this topic justice. I have no feelings one way or the other about product reviews, only that my blog doesn't seem to be the typical "mummy blogger" sort of blog, but there's loads of other mummies who don't fit the "typical" profile! If there is one!

This weekend has been about getting ready for our flight to Australia, of getting toys and bags ready, and buying clothes for Joseph, most of which came from our local charity shops. This week will be a restful one, hopefully, as last week was a very administrative type of week, organising Visas for Australia (although a dual citizen I buy a Visa, so that Joseph and I are going through together on our British Passports, and besides which I forgot to change my Aussie passport to my married name, and I have to go out on my British, switch to Australia to enter and vice versa.. With a toddler, my brain is highly likely to be addled and I'll make a mistake!

I am looking forward to seeing some sunshine, and seeing my mum, so perhaps I will leave you with a photo, of Joseph enjoying a rare moment of English sunshine in Hyde Park this year.

Saturday 15 January 2011

Never Give Up, Never Ever Ever.....

Today's blog dare, following "the worst mother" is "the best mother", what one thing makes you the best mother ever, even if it was just for 5 minutes.

I've told our story here before, that Joseph was born at 27 weeks, weighing 1lb 7oz. We had a few scares on the way, looking back, fairly normal premmie scares, but when you are going through the journey, you have no idea what is normal and what is not, and its only with the passage of time that I can see that our 10 weeks was pretty uneventful in some ways, although very much eventful when we were going through it.

I am proud of myself that I never gave up. And not only that I never have up on Joseph, but I never gave in either. I am quite an unconventional person in some ways. I am never all that bothered about what people think of me. And I approached Joseph's stay in a way that seems pretty unique.

It was important for me to have "things to do". I bought a baby massage book which included a section on special situations, such as babies in NICU. I found ways to do baby massage. I had always spoken to Joseph in the womb, so I kept doing it. We talked about all sorts of things. I even wrote down what I was going to talk to him about each day.

I sang songs, and I read books. The staff thought I was a little eccentric. One of the doctors thought I was a bit mental. He said to me once "do you realise your the mother of a pre term infant", to be met with "really? They don't all come in plastic boxes, are you sure?"

I think when you have parented in a scary situation, it makes you tough, and proud, and even more barmy than you were at the beginning!

I would never call myself the "best mum" but I do think I'm a good 'un and that our experience has made me a better one than I would have been.

Friday 14 January 2011

The Electronic Babysitter

Today's blog dare promp is "I am the Worst Mother Because..." This is hard for me in a way, because of the whole NICU blame game thing, a lot of people don't realise this, but mummies of premature babies feel a lot of guilt, that "this" is all their fault. Which is, when you look at it rationally, a little bit daft. But, a lot of us naturally feel like failed mothers. So at first I didn't want to write a post on why I am the worst mother, but I think I can make this a light hearted one.

I am the worst mother because I utilise the Electronic Babysitter. In fact, I am doing it right now. In this day and age we have decent children's telly available from 6am - 7pm, my channel of choice is the remarkable Cbeebies. Joseph adores his "telly time". His face lights up when the telly goes on, and he enjoys it.

In my defence, I am on my own all day with Joseph. He gets sick of me. Some days going for a walk is just an impossiblity, we do have some friends locally but not lots, and our groups are only for an hour or two and only on certain days. Joseph is still too young for a lot of them, and gets a bit bored.

Also, in my defence, Cbeebies in particular is created in partnership with education and early years experts, its carefully constructed, and a lot of it is educational. Joseph's speech has been improved by television, in particular Something Special with the delightful Justin/Mr Tumble, which focuses on the use of Makaton. One of my biggest joys this winter has been Joseph climbing up to the window and signing and saying very clearly "look, snow". So thanks Mr Tumble!

Also, Joseph loves music. The Zingzillas are a personal favourite. As well as 4 fake monkeys singing along, they have a guest artist every day. Yesterday was this guy who, rather shamefully, I have to admit I had never heard of, so as well as extending Joseph's musical repetoire, Zingzilla's is extending mine.

Do I leave Joseph alone taped up in front of the television for hours, no I don't. Usually an hour or two a day its on and I do turn it off for meal times, and at most play times. But a little television, I don't think, does any harm at all.

Thursday 13 January 2011

When I Grow Up I Want to Be

Today's blog dare prompt is what did I want to be when I grew up.

When I was a small child I had the usual dreams of vet, nurse, policewoman etc, but by the time I got to late primary school, I had strong ideas about what I would like to be when I grew up. I was a strange child, shy, a bit socially awkward, but generally happy. But, the things I found fascinating, and still do, were somewhat unconventional.

I wrote my first "essay" on communism when I was 9. By 11 I was writing school projects about the widecombe shearer's dispute. I had a very strong social conscience. I remember supporting teacher's on strike. I had a very strong sense of fairness, and felt very strongly about social justice, even at this tender age.
I adored Geoffrey Robertson's Hypotheticals, he was possilby my first hero. 

As I continued my education, this grew stronger. I loved 60 Minutes (the Australian one with George Negus and Ray Martin, and the gorgeous Jana Wendt, amongst other journalists) The story that really struck me was the investigation into the court cases surrounding Lindy Chamberlain and the tragic disappearance of her infant daughter Azaria. I also got very much involved in the story of "deep sleep therapy" at Chelmsford Hospital , and was horrified that no one was truly called to account for what happened to those vulnerable patients, putting their faith in "modern psychiatry".

At first, I wanted to be a lawyer. By the time I was in Year 12 my hero was Clive Stafford Smith, a young lawyer who eschewed a glittering career in the UK to work in some of the grimmest prisons in the Deep South of America. It was whilst watching a documentary about Edward Earl Johnson that my interest in captial punishment grew, and I felt so desperately sad for the poor, often severely intellectually disabled, young black men who ended up on death row. There really did seem one law for the white, rich people, and another for the poor black people. I was deeply angry. I dreamt of being a human right's lawyer.

However during my education I was told on several occasions I lacked the "killer instinct" for law of this type. And to be honest, it probably wasn't incorrect. But what is a shame I guess, is that law isn't all flying by the seat of your pants LA Law type court scenes. A lot of law is reading, research, interviewing, and donkey work. I am sure Clive Stafford Smith would agree himself that behind every articulate, brilliant lawyer, is a team of hard working, behind the scenes researchers and lawyers reading documents, interviewing witnesses, and studing rule of law. One of the problems was that at the time in Tasmania you had to qualify as a barrister and solicitor. And I was unwilling to move interstate.

I decided instead to embark on a career in industrial relations. I did work experience for the Tasmanian Office of Industrial Relations. I adored the Industrial Relations Commission, the hearings much more informal and concilliatory than a court.

Unfortunately, during my studies at university, the world turned on its axis. The new Liberal (equivalent to the Conservative or Republican governments in the UK and US) started dismantling the industrial relations system. Jobs became scarce. So I never achieved a career in this field, although I did spend some rewarding years in my caring job as a union representative, which I loved. And later on, when I myself had to go before a tribunal due to a work related incident, I represented myself, and won my case, against all odds.

 Now I have a job that I also always aspired to, that of a mum, and my job now, is to encourage Joseph in his hopes, dreams and aspirations. I can't wait to see what he wants to be, and how we as parents, can help him get there.

Wednesday 12 January 2011


Today's blog dare is the holiday I am looking forward to most this year. The Blog Dare originated in America and I think they may be talking Holiday as in Easter, Thanksgiving or Christmas rather than vacation, but as we are in England lets talk holidays!

I am very lucky this year, I am having two good ones. The first I am really excited about is 6 weeks in Australia. I am travelling with my 21 months old son, which is going to be somewhat of a challenge. We are spending a week with one of my best friends, Allison and her family for a few days, then on to Tasmania, where I was born and lived until I was 30.

It's a poignant trip for us, we did it last year and I thought it would be my last trip for a while, but two big things happened last year. I was made redundant (not sad particuarly) and my mum, rather shockingly, was diagnosed with cancer. I wanted to be there straight away, but when we sat down rationally and considered it, we decided that it would be better if we came when chemotherapy was finished, and mum could relax and enjoy us a bit more.

Also exciting is that my sister has had a baby recently so we get to meet my new nephew, and see my darling nieces again.

The sad thing is, my husband will be fending for himself for six weeks. I will really miss him, and its going to be hard for Joseph not seeing his dad for so long, but needs must.

In September we are having a family trip to Rhodes, a proper, all inclusive week's holiday, and I am really looking forward to that. Once we come back from Australia I am joining the gym, and hope to be a couple of dress sizes smaller by then. I really just need something to focus on and I hope that will be it!

And then, finally, in December we're going to Germany for Christmas with Corey's parents, who live in the North. It is truly lovely where they live, and I can't wait to experience an English Christmas in Germany!

Tuesday 11 January 2011

The Best Movie I Ever Watched

I am not a huge movie buff, I don't know why, and I feel sometimes that I've seen enough movies, so this is largely a pretty retro list for this blog dare. I used to go to the cinema when I was younger, but now, I am not so interested in films unless the story really grabs me. I prefer a good biographical film over a comedy or drama. Here are some of my favourites

Annie's Coming Out - I first saw this film when I was about 17, it really resonated with me, its a true story about a young lady who is given up at birth and institutionalised. She cannot walk or talk, but as it turns out, she's intelligent, and a young, idealistic teacher develops a way of communicating with her. Later on in my career as a carer I care for a young man who was very similar, he used a computer to communicate. I think also it resonated with me because for about a year I was misdiagnosed as having a learning disability, so though not as extreme, I felt a bond with Annie.

In the Name of the Father - I love everything about this film, it's true and it's compelling. It has the rather lovely Daniel Day Lewis in it, and the music is amazing, I love both the U2 track and the Sinead O'Connor Track. I am not a massive fan of Emma Thomson, but in this film she is perfect, that moment she deliberately asks for the "wrong" Conlon file, and breaks the case apart is one of my favourite moments in film. But the real star was Pete Postlethwaite, who sadly died last week.

Slumdog Millionaire - I think a theme of barracking for the underdog is developing here, another amazing film about the power of the human spirit and rising out of adversity. I also loved the "Bollywood" aspects of this film which stopped it being quite so depressing. The other thing I loved was that the actors were all unknown in the west, and the film traded purely on its story rather than star pulling power.

Romper Stomper - I had only just turned 18 when I went to see this movie, twice in a week, first with one of my dear friends Laurel, and then with mum. It is a dark and scary film, with incredibly powerful acting and a stunning story line, which showed a part of Australian life and culture that is rarely seen. Unfortunately in this week I also saw Strictly Ballroom, which whilst a stunning film, couldn't quite match Romper Stomper for intensity and the shock factor.

The Picnic at Hanging Rock - I loved the film and the book, the ethereal images of these beautifully dressed young girls walking off into the bush, never to be seen again, is haunting, and drama that ensues with the search is heart wrenching. Contrary to popular belief there is no evidence that this story is true, but it doesn't make it less compelling.

Priscilla - Queen of the Desert - I truly adore this film, and I can never quite pick who is my favourite character, I adore the humour of  it, the bitchiness, the costumes, and the story line. It's a film that seeks to entertain, but also to gently challenge the homophobia, I think. It's a lovely movie, and what's not to love about the soundtrack?

A Beautiful Mind - Another Russell Crowe picture, but this film really grabbed me, the story line, the whole smoke and mirror thing of not knowing which parts of the story are real, and which are the makings of the lead character's fractured mind. The acting is understated and superb, the story sympathetic yet honest. It's a move that has stayed with me.

Monday 10 January 2011

Like A Bird.....

It seemed fitting today after my post this morning about the ugliest insect I ever saw, to tell you about the bird that saved my life .

For those reading for the first time, to put it briefly, I had a horrible pregnancy, and was hoping things were starting to get better in time for my third trimester. This particularly day I was 26 weeks and 5 days pregnant. I had been off work for about 10 weeks, as my blood pressure was unstable. My doctor and midwife thought I was over reacting, but it felt like if I had the remotest bit of stress it skyrocketed, so I decided until I got a straight answer about what was happening, I would stay at home.

In the morning my midwife had come and checked my blood pressure, I was having daily monitoring. We had a chat and she left. During the day I started to feel unwell. Just very tired, a bit headachy, and afternoon nausea (whoever called it morning sickness was having a laugh, at pregnant ladies' expense). It wasn't unusual for me to feel naff, so I went to bed. I went into quite a sleep, and woke to the sound of cat yowling, Atticus is pretty much silent, hardly ever does anything more than raise a purr.

I got up, feeling very light headed and confused, and shaky. There was an awful, ominous noise coming from the bathroom. The cat was frantic, the noise was getting worse. My first thought was it was my upstairs neighbour working on his flat, but if this was the case, why was the noise underneath my ground floor flat, it just didn't make sense, but I went and got him anyway.

I don't think I made any sense when I knocked on his door! He came in with his tool box, and the noise had stopped. I felt really stupid. But Martin decided to have one last look in the bathroom, and it started again, banging and crashing.

It took a couple of moments, but we realised a bird had become trapped under the bath, no wonder the cat was going mental! Meals on Wheels (well wings).

Martin carefully took the side off the bath panel, and the bird went free, it took a few minutes but we got it outside. Martin went upstairs, and soon after my husband came home. The rest of the evening was spent with me still feeling naff, and due to this upset, unable to sleep. I spent the next few hours trying to work out whether it was shock, sinus trouble triggered by the feathers or pre eclampsia.

I am convinced that had I not been woken by the bird, I would have had an eclamptic seizure in my sleep and may have died.

So little bird, trapped under my bath, thank you. You saved my life.

Put a saddle on it!

Today's blog dare is a really fun one, the ugliest insect I ever saw. I refuse to have a picture of the evil things on my blog. End of.

When I was 20 I went to Fiji on a missionary challenge for one month. We started with one week in the mountains half way between Sigatoka and Suva at a conferece, and then spent 2 weeks working with street kids in Suva, we had a few days either side to relax and recuperate.

What I discovered in our dormitory at the conference was cockroaches. Coming from Tasmania I had limited experience with these beasts, but I knew one thing. They were the devil's work. An insect whose footsteps you can hear, has to be the devil's work.

Now perhaps its the passage of time, and like the one that got away, these beasties have got bigger and bigger in my head, but I swear if you got six of these things in a row, and hooked up some harnesses, they would have been just as effective as any reindeer. Hideous.

One night we went up to bed, there were six of us in this room. I went in first, and ran out and screamed, another girl did the same thing. We huddled on the verandah refusing to go in. But we were rescued. Brigid, a tiny New Zealand girl, she must have been 5 foot nothing and the build of a child walked into our dormitory, looked the beast head on, grabbed the Fijian broom (like your stereotypical witches broom but without the handle) let out a huge Maori cry and launched said broom at said beastie.

Well, no one told us these evil (and I use this word in Aussie vernacular so as not to offend) bastards could fly! As the broom flew towards it the cockroach swooped, landing in Brigid's hair, whose bravado momentarily left her, and she ran screaming, and huddled with the rest of us.

As we were cowering, three huge Fijian men came striding up the stairs, ready to take on our attacker. "Right, where is he?" We whimpered, pointing to the cockroach, now sitting on the top of the window, laughing at us (ok the ability of cockroaches to laugh is debatable but I am sure that's what it was doing). Manassah (you couldn't make it up) a trainee doctor and about 7 foot tall glared us, walked calmly to the cockroach, scooped it up in his huge hands, and launched it out the window.

He looked at us with a mixutre of annoyance and pity, and sent us all to bed. He thought the cockroach was some sort of deluded would be attacker, not a, supposedly, harmless insect.

We all slept with one eye open. From that night on I took no chances. I sprayed the room thoroughly with Aeroguard every evening, on top of and underneath the mattresses!