Tuesday 31 January 2012

With You Not By Me - A Post for #dosomethingyummy

Yummy Mummy Week is a fundraising campaign run by CLIC Sargent, the children's cancer charity. It takes place from the 10th - 18th March. The lovely Nickie at I am Typecast is hosting a series of writing prompts, and I am very pleased to be joining in. Last year I attended my first ever blogging conference, Cybermummy, and Nickie read this post , intensely personal, it was the absolute highlight of the day, and fair to say, not a dry eye in the house. I have chosen the prompt imagine your child can't be home with you. This is based on Joseph's time in NICU

Hastily grabbing a pot of freshly expressed milk, I start my short trip down the stairs to the neo natal unit. I am stopped by one of the grandmothers, here supporting her newly delivered daughter.

"Good morning, how's little Joseph getting on today?", she asked kindly. "Well thanks, not much change, I am going home today". Her face changed, she looked at me, shocked. "What? You can't go home, you have to stay here, with your baby, or take him home with you. You can't possibly leave him here all on his own." Tears welling in my eyes, I hastily explained that there are no facilities for parents to stay and this is what is expected. "Well that is just cruel, you should not be leaving your baby here, with strangers".

I carry on and walk into the unit, gazing at my baby lying in his little box, oblivious to my presence. I drop my milk in the fridge, and proceed back to my room, packing away the pyjamas, clothes, and cards that I have amassed in my week long stay. My husband arrives and takes me home.

The next day, I get up early, express again, put the milk in my cool bag, and pop into town on the way to the hospital. I need a changing bag. I go to our local bag shop and look at the bags. The owner, not known for his stunning interpersonal skills, approaches.

"Oh you don't want one of them, that's a changing bag, you know, for a baby". I smile "yes I need a changing bag now, I've had a baby". He looks at me wide eyed, incredulous. "What? You? When?", through gritted teeth I reply "last Friday, he's just over a week old". I divert my attention to the bags, checking every detail, looking at the stitching, the little dogs on the front, the price, thinking to myself "just go away, go away go away", he says it, I know it's coming "so why isn't he here then, where is he?" I explain. He tells me I am a bad mother. I should be with him. Every minute. I buy a bag (I really shouldn't have done) and I leave.

I go to the unit, I sit by my son's incubator and I try, very hard, to swallow the tears that are welling in my eyes. I quietly open the porthole door and stroke his foot. I talk to him, I sing to him, and then I leave. Without my baby. Alone.

Every day I make the journey to the hospital. Usually alone, splitting the visits with my husband so that Joseph has me there in the morning, and Corey there at night. Every day I smile, I put on a brave face. "How's Joseph today?" people ask me, "oh just fine", I say. Yes I know what people are thinking. "If he's fine why is he in hospital?". It is so hard to explain, the need to grow, to be protected, for medication, for tube feeding. It sounds so dramatic, so acute, but it isn't. It's normal. Our new normal.

For 76 days, my baby is not with me. I go home alone. My husband and I tiptoe around each other. We are tired, we are drained, we are parents, yet we are not parents. We go out for meals, we go out for Sunday lunch, trying to have some normality and some company. We are driving each other insane.

We see people out with their babies. One day, whilst out shopping for our baby sling and toys, we sit and have a meal, there's a mum and dad cooing over a baby. We smile, as my milk leaks into my breast pads. "How old is he", my husband asks "Oh he's six weeks, born on the 8th May", they grin, proudly. "Oh same day as our son", my husband says. You can see these parents gazing at us, looking around. There is no baby.

Quickly I explain "He's in hospital, he was born at 27 weeks", then realising we now look even more daft, sitting eating Sunday lunch, talking about our baby, who is not here, when we should be there with him. They look uncomfortable, they finish their meal and they hot tail it out of there.

Walking around with a hole in your heart, a great gaping gap in your family, it's hard. "What to Expect When Your Expecting" doesn't talk about this. There is no chapter "How to Behave When Your Baby is Not By Your Side", and maybe there should be.

There are whole communities of parents who know how it feels, to have a baby but not a baby. And there are communities of parents facing much, much worse. And we think of them, and we support them, and we raise money so that we can do something to help these special parents, and these special kids. It is all we can do.

Monday 30 January 2012

Why Choose the Pixie Harness?

Last week I introduced you to the Pixie Harness, this week wanted to tell you a bit more about it and how it works.

So what’s the issue with a standard seatbelt? A standard seatbelt is designed with the safety of the driver or passenger in mind, but not necessarily the unborn baby. As I see it there are two pressing issues. The first is that there is a specific way of wearing a seat belt in pregnancy. Professor Serpil Acar  found that 87% of women wore their seatbelts incorrectly in pregnancy.

Also an issue, and one that Steve, the creator of the Pixie Harness picked up on, is the area of non-compliance of pregnant women in wearing seatbelts. Pregnancy is not a comfortable time, and many women have issues such as symphysis pubic  dysfunction, and thus experience pelvic pain, and it can be tempting to not wear a seatbelt, especially on short journeys. However, not only is it illegal, this practice is dangerous. A little bump in a carpark that we may not think twice about, can have a devastating impact on the developing baby inside.

Why the Pixie? There have been a few attempts to make seatbelts more comfortable in pregnancy, however the Pixie is quite unlike anything that has been seen before. In addition, it meets all safety regulations for both the UK and Europe, unlike the other “solutions” out there. Having worked extensively in the disability field, I have first-hand experience that 4 point restraints are the safest method of keeping a person secure in a moving vehicle, whether it be a car or a wheelchair, and this is just how the Pixie is designed.  To me, it makes perfect sense, once your baby is born, it will spend the first couple of years of its life being secured in such a way, whether in a car or a pushchair.
 How does it work? Does it need to be professionally fitted? The Pixie is so convenient. The harness is fully adjustable to your shape, and is fitted on to the standard seatbelt, so no mucking about with taking your car into a garage. It’s much easier to use than say a standard group 1 car seat! It can then easily travel with you (and to that end comes in its own mesh bag) so that you can take it with you if you are travelling with friends, or in a taxi.

The way the Pixie protects the unborn baby is that in an impact, the force is spread throughout the upper body, and completely away from the developing baby and placenta. The vertical of the seatbelt goes through the back of the Pixie in a metal clasp, so it is this that prevents you from going too far forward.

You can see more about how to fit the Pixie here. 
Why I love the Pixie Harness: Steve is a problem solver. He saw the potential and very real problems of seatbelts in pregnancy and he sought a technological solution to solve it. Steve investigated this thoroughly, and has ensured the device complies with all the European and UK regulations in this area. He has literally thought of everything, down to the carry bag so that you can easily gather it up and move it from one place to another.

When I went to see the device I was so impressed with its design, its comfort and its ease of use. It really is an amazing piece of technology and I think, as women and as mothers, we are fortunate to have people like Steve thinking of us and finding solutions. 

I’m also proud that this device was conceived in Bury, further proof that Manchester is leading the way in innovation and safety. 

If you have any questions, please post them here, on Twitter or the Facebook page.

Sunday 29 January 2012

A String of Pearls - I'm on the Team!

I am very excited to announce that I have been asked to be on the team of A String of Pearls, an ezine by women for women.

I met Jane through Twitter, and was flattered when she asked me to write about the riots last summer.I was overwhelmed at the response and really enjoyed the departure from writing about our journey, although it will always remain at the heart of what I write.

I look forward to writing different articles and pieces than I do here, and meeting some new people. I'd love you to follow my journey there and you can subscribe here.

A String of Pearls is a delightful read, full of diverse and interesting articles written by women from all walks of life, from all over the world. I love the photography, and we are keen to showcase this, so if you are a keen photographer, even only on your camera phone, do get in touch.

Nice to See You - But What on Earth Are You Doing Here?

I read this post from the beautiful Cafe Bebe this week and it really made me smile. At her babies 8 week check her GP offered his congratulations, that she is pregnant again. I reassure you dear reader that she most certainly is not!

When Joseph was 6 weeks old I was asked to go in to my GP for the standard antenatal check, but also the consultant who had overall management of my pregnancy also wanted to see me. The GP appointment went without a hitch, they just took my blood pressure and offered their congratulations, and were most understanding that going for my post natal check without my baby wasn't the easiest thing. They even made sure they saw me on a non-clinic day, so that I wasn't surrounded by cooing mums and bouncy babies.

The following week I went for my consultant check. Now there isn't anywhere for a recently delivered premmie mum to wait but in antenatal. So my husband and I sat down and waited.

Firstly, Dr C, the big Ghanaian doctor who helped deliver Joseph, came into the waiting area, saw me and ran over and scooped me up for a big hug! He was so lovely "oh I am so glad to see you, how is Joseph, and please, please tell me your not pregnant!" I grinned at him and said "no, no just a check up!", with obvious relief he wandered off.

Then Dr B came in, for some reason, although he never treated me in pregnancy, he and I had become quite friendly and he always popped in to say hello. He walked over, scooped me up for a big hug, asked how Joseph was and said "if your pregnant again I'm changing specialty to geriatrics!" I smirked and explained again.

Finally Dr A came in. Now I credit Dr A with really setting my care on the right path. When I was seen at 24 weeks, she put me on a daily monitoring plan, and spotted that the medication that was recommended by the senior consultant was not suitable for me, as I am asthmatic. She also reassured me that I was welcome to come to delivery at any time to be checked over, and that I wasn't paranoid, but at risk of pre eclampsia. She was in charge of my care the night after delivery, and was so kind. She had tears in her eyes as she said "I am so sorry this has happened, but so grateful that we had you on a good care plan".

She walked into the waiting area, and gazed at me with suspicion, she looked utterly terrified, and didn't smile. "Kylie, why are you here", I cruelly patted my tummy and looked at Corey. The colour drained from her face, I grinned and explained. The sigh of relief could be heard all around the waiting room, and all the other still pregnant women laughed! By that point I'd become a minor celebrity as the medical team all knew me!

But, in all seriousness, I do know women who have had premature babies who have been "caught" whilst their babies are still in NICU or shortly after discharge. I don't think expressing breastmilk gives the same protection against preventing pregnancy as standard breastfeeding (my periods returned bang on schedule 4 weeks after delivery), and often we either don't get the "contraception after childbirth" talk, or are so shell-shocked about what has happened, it is inconceivable that you will ever have sex again!

So if you are going through NICU, or recently delivered, or in fact pregnant, have a think about what contraception you will use.

Saturday 28 January 2012

The Pink C

joseph in tas 147 by kykaree
My mother in 2010 before diagnosis

“I’ve been recalled following my routine mammogram” she said. “Fuck”. I thought.  “Right”, I said.
And so she went, on the other side of the world, for tests. “I’m sorry” he said. “We’ll operate”.
So it was removed. The lump.
“I’m sorry”, he said. “It’s worse than we thought”.
She went to the oncologist. She had the chemotherapy, followed by radiotherapy. My mum.
She lost her hair. She got a wig. She kept positive. I was scared. My mum.
She asked her radiotherapy oncologist “How do I know if its gone?”
“When you die of old age” he said.

90 bloggers, 90 words about breast cancer for Kate on Thin Ice. Join and link up. 

Friday 27 January 2012

Our Busy Week and Joseph's Friday Funnies

Since Christmas our weeks have just got busier and busier. So busy I didn't even blog yesterday - horrors! My to do list is getting bigger by the day, and my time seems to be getting shorter! I have worked almost every night since last Saturday and am working all weekend, which is great for the pennies, and I am enjoying it.

This week we finally made it to The Chocolate Cafe for the first time in ages. We used to go every week, in the heady days of maternity leave, when we had time, money and babies who stayed where you left them. We used to spend 2-3 hours, now I am lucky to be in there for 45 minutes, but we had a lovely brunch, just Joseph and I, following a trip to the shoe shop and toy shop.

We came home, and Joseph proclaimed, "I am not tired, I am going to watch television". Despite my suggestion that he might, in fact, be very tired, he was insistent. Here he is 10 minutes after this statement.

Joseph's words and sentences are coming on in leaps and bounds. Some new children have started pre school, and I introduced myself to one of the mums this week. Joseph popped out from behind my legs, extended his hand and said "well, I am very pleased to meet you". I have no idea where he gets this from!

On Thursday was our eight monthly trip to orthoptics (the eye people, not to be confused with orthotics, the feet people). I started preparing Joseph a few days ago for our trip to the "eye doctor", and that she gives out stickers. Before we left I said "what will the doctor give you?" "He grinned and said "the doctor gives out cuddles!"  Bad mummy had forgotten to practice with the line drawings they gave me, but Joseph excelled himself, the highlight being when she showed a picture of a mug Joseph grinned "mummy's cup of tea!".

The lowlight of our week is teething. I am so sick of teething, it seems to be taking forever and he's finally getting a proper molar, but still has three more to get. So funny now he has words "Mummy , get the magic Calpol please". Mummy thinks its magic too!

To leave you with my favourite funny of the week, Niow Niow was washing her paws this week, and Joseph copied, licking his feet. He paused, looked at me and grinned "mmmmm delicious". Yuck!

Wednesday 25 January 2012

Vitamins, Children and Twitter Doctors

Last night I read an exchange on Twitter between television's Dr Christian Jessen and a mother, who was asking for advice about multivitamins and children. I follow Dr Jessen's feed, but I have no idea why! Must hark back to when I didn't have many followers and I collected "celebrities".

OH DEAR RT : what do u think about giving supplements to toddlers - Ive just started my 3yr old on a multivitamin
Now I got chatting to Redlottie and it was clear she was giving her child a children's multivitamin, how you would get a 3 year old to take one of those horse tablets is beyond me anyway, and Dr Jesson subsequently responded appropriately saying "kids vitamins are ok". He didn't explain why, or give any links, much less apologise. However before his clarification, some people on the twittosphere had given this mother a hard time "give the child vegetables", "get the child off the Wii and outside". Now I give my child vegetables every day. Whether he eats them or not is a different matter entirely. And is there enough sun light in the UK to supply a child's full requirement of Vitamin D? "Well generally it is thought not. Vitamin D is available only in small amounts in fish, eggs and dairy products.

The subject of vitamins is confusing. I now know that the official advice is to give vitamin drops or chews up until the age of 5, and here is a good fact sheet put together by the British Dietetic Association, that clarifies the issue nicely. When I went to get advice from the pharmacist, several months ago, about which ones were most suitable, she had no idea of the change. She'd had to look it up on her own NHS website for guidance. She was somewhat embarrassed that she had not been informed.

To me, the confusion lies in how professional people are informed of guidelines and changes therein. I know doctors and pharmacists (even ones who are not on telly) are incredibly busy people, but to me, this is a change in guideline that affects every child under the age of 5 and surely that's a big number of patients.

For parents of premature babies, giving vitamins is a way of life, particularly in the first year. It made me chuckle that Joseph had to have folic drops once a week, but only on a Friday. There's nothing magical about Friday, but it's an easy way to remember - "folic friday". Joseph also had to have Sytron, which is an iron supplement, Joulies Phosphate (which on discharge was harder to obtain than crack cocaine!) and Dailivit. I stopped the Dailivit once he was on nutriprem 2 as it has enough added vitamins, and he's now back on it again, in line with the guidelines. Once he is 3 I will give him the nice vitamin chewy sweets instead.

I think its so important than in this age of doctors on the television, and on Twitter, and on medical advice in ever newspaper and magazine, that we, as health consumers, are clued up enough to find the sources of correct information, and are critical of what we are told.

I felt yesterday was an important lesson, that just because a doctor says something, doesn't mean it is correct.

Tuesday 24 January 2012

My Desert Island Discs

One of the more bearable things my husband has introduced me to is Desert Island Discs on Radio 4 on a Sunday morning, which we listen to without fail every single week. I love it! I enjoy listening to the choices and the stories behind them, of famous people that we know, and people we don't. Some of our favourites have been scientists, authors and charity workers that we haven't been familiar with.

As I listened to Vikram Seth this morning, whilst doing the ironing, I wondered what my 8 desert island discs would be.

"Well Kirsty, my first disc will have to be "Stop Crying Your Heart Out", and I have chosen the version Noel Gallagher sang on an Australian television show, The Panel. Although I willingly moved to England in 2002 I found my first few months really tough, and this song gave me solace, and hope.

Going back to my childhood, my next disc is "Walking on the Moon" by the Police. As a child growing up in Tasmania, this was on the television and radio often and was the first pop song I ever really heard. It's still a great turne.

I have struggled choosing the obligatory classical piece that I am sure a lot of your guests choose so that they appear more intellectual and intelligent than perhaps they are. I have chosen Pachelbel's Canon in D, and don't care that it has become populist and pops up everywhere. I love the simplicity of the melody and the complexity comes from the way in which it is repeated and other instruments join in.

The next piece comes straight from my teenage years. When all my friends were listening to Madonna and the Pet Shop Boys, I was listening to Australian music. My all-time favourite bank is Hunters and Collectors. This song "What's a Few Men", is inspired by the awesome memoir "A Fortunate Life by A.B. Facey, one of my favourite books.

I was brought up on Australian country music, and its something that living here in the UK, I really miss. Whilst you may sometimes here Amercian country music on the radio, the Australian variety is often forgotten. There are so many songs I could include here, but I've chosen Anne Kirkpatrick's "Many Mothers", as I feel its a universal song, and more appropriate now than ever.

Now my sixth track is for my son Joseph. There are many songs that I relate to from Joseph's birth, and as my regular followers and fans know, Wires by Athlete is a very important song to me, and one that I couldn't really omit for this programme. It just happened to be on my iPod, when Joseph was in hospital. It became my prayer "looking at you now, you would never know", I hung on to that song with all my might, and one day - it became true. I will always be grateful for Joseph, and for this song for helping me get me through.

On the subject of prayer, I have chosen a hymn as my seventh song. Now although my regular church going days appear to be behind me, at least for now, church music is very important to me, and I still sing hymns quite often. Perhaps the hymn that I love the best is "Be Thou My Vision" that we chose for our wedding. (Unbeknownst to the current Mr Hodges, it was also sung at my first wedding!)

My final track is one that resonates with most Australians, and it is "Down Under" by Men at Work. Whilst I have lived in the UK for ten years this year, I am still very much an Aussie, and this song still makes me smile and feel proud, never mind that half of Men at Work are Scottish!

So thank you Kirsty for the opportunity to share my tracks with your listeners today. I know you are going to allow me the Bible and the Complete Works of Shakespeare and I am allowed to take one other. I have chosen to take The Vernacular Republic by Les Murray, one of Australia's best known contemporary poets, and want to have the whole thing memorised by the time I get rescued.

My luxury item is a struggle, but I've chosen to take my son's Mucky Coat Blanket. I won't need warmth on the island, but I will need comfort, and I am sure Mucky will do the job admirally.

If all my discs were to be washed away and I could save only one, it would be Stop Crying Your Heart Out, as that song reminds me to keep strong, and not be scared, most appropriate for being all alone on an island."

Do you listen to Desert Island Discs, who is your favourite person who has been on the show? What would your Desert Island Discs be?

Monday 23 January 2012

Car Safety and Pregnancy - The Pixie Harness

I don’t drive, and in my everyday life and am not in a car very often, maybe a couple of times a week. When I went to book in my pregnancy with the midwife she explained how important it was to continue to wear a seatbelt as normal throughout pregnancy. I didn’t really understand the correct way to wear a seatbelt.

At 24 weeks I was in Germany visit my mother in law, we were in the back seat of the car together going on an outing, she happens to be a midwife, and she looked at how I was wearing my seatbelt and explained it was all wrong. When we got home she showed me the RoSPA guidelines  We then went back into the car to try and get the seatbelt to sit properly. We failed. I’m not sure whether it was because my bump was covered by a layer of fat, or what the issue was, but the lap belt just wouldn’t stay put across my pelvis and we couldn’t get the vertical belt to sit nicely between the breasts. In a car accident, my baby would have been in danger. I assumed as I got further along it would get easier, but of course, with my pregnancy ending at 27 weeks, it was no longer an issue and I thought no more about it!

One Sunday night a week or so ago I learnt about the Pixie Harness through Twitter, and went on the website to see what it was all about.  I started turning from sceptic to a believer in this product and wanted to learn more. Imagine my surprise when I discovered that Steve, the inventor of this harness, has his premises literally up the road and around the corner from my house!

Image - Pixie Harness
As I spoke to Steve I was immediately struck by his passion for this device, and his diligence. He has been developing this for years, he showed me various prototypes and went into minute detail about how he developed the harness. This is a premium British product, and manufactured in the same way as racing harnesses. It is designed to take the impact away from the bump, thus protecting the baby and importantly the placenta.

No one knows how many babies are lost due to accidents each year, as the death of a foetus is not reported, much less investigated. But undoubtedly babies are at risk due to car accidents, and as Steve explained, it can often be a low impact accident that does the damage, a bump in a car park that we might not think twice about, for example.

I will blog further about this device in coming weeks, and just wanted to introduce you to it today. But before I go, I did want to talk a little about cost. It’s the first thing I noticed when I visited the website and wondered, really, if I wanted to blog about the device at all. Pregnancy and the babies first year is an expensive time and I did query whether this was too much to pay initially.

However, as I learnt more about what has gone into this device, and how it has been produced, I was reassured, and further, I started looking at it this way: we insure our cars, none of us like to think that we will have an accident but we diligently pay our insurance year upon year. We pay a lot of money for car seats for our babies, toddlers and children and don’t think twice about making sure they are appropriately restrained. Surely it makes sense to ensure our children are appropriately restrained from the moment we know about them.

Additionally, how many days long is pregnancy? About 280, so let’s say you start using this at 12 weeks, that’s around £1 a day, and if you have another pregnancy, you can bring that down to 50 pence a day. When you look at it that way, I don’t think it’s too much to spend, particularly, like many women, you are driving every day.

Later in the week I will blog more about how the device works, how it fits into the car (which is so easy even I can do it!) and answer any questions you may have, with the help of Steve.
If you have any questions, you can tweet them to me or to Steve, or leave them in the comments box below. 

Sunday 22 January 2012

Pre eclampsia - Myth busting

I am not a doctor or researcher, and as always this is my opinion and based on my experience and reading. If you have specific concerns please talk to your midwife, GP or consultant.

Obesity causes pre eclampsia - undoubtedly obesity increases your risk of pre eclampsia. Researchers believe that the risk of pre eclampsia in obese first time mothers is around 12%, but in healthy weight mothers, the risk is 2%. Obesity puts you at a higher risk, but there is not a direct causative link. Research can be read here. Slim women can, and do, get pre eclampsia too.

Pre eclampsia is rare - 4 million women world wide are affected by pre eclampsia every year. It is said in the UK it affects 1 in 10 pregnancies. Of course it varies in onset from very early, like me, to term pregnancies. It also varies greatly in severity.

Pre eclampsia occurs only before the baby is born - Pre eclampsia, and full blown eclampsia can occur after birth, so it is important that monitoring continues in the immediate post natal period.

Pre eclampsia can be treated - Whilst there are things doctors can do to lessen the impact of pre eclampsia such us magnesium sulphate infusions, they are very much short-term in order to facilitate safe delivery of the baby. The only definitive treatment for pre eclampsia is delivery of the baby. However good antenatal care is absolutely vital.

Pre eclampsia is just a complication, its not serious - in the last reporting period of the Confidential Enquiry into Maternal and Child Health, 2002-2004 14 women died in the UK as a result of pre-eclampsia and eclampsia. It is essential to attend every appointment in pregnancy, and to ask for more if you feel you are at risk.

Pre eclampsia is just harmful for the mother - sadly, and getting figures for this is nearly impossible, pre eclampsia kills more babies than it kills mothers. Pre eclampsia prevents the placenta from working properly and nourishing the baby. Pre eclampsia is potentially life threatening for mother and baby.

Pre eclampsia only occurs in first pregnancies - it was often said that if you had a second baby shortly after your first, with the same father, you could not get pre eclampsia a second time. This has found to be totally false. In a subsequent pregnancy you should be getting much closer monitoring, and preventative treatment. The greatest risk for pre eclampsia is having it in a previous pregnancy.

I am passionate about preventing pre eclampsia, and importantly, the serious complications. It's a vile, evil condition that is indiscriminate and potentially devastating. It's the reason I support Tommy's, and you can read about their pre eclampsia research here.

The final thing I want to say, is that if you have been affected by pre eclampsia, it was not your fault. It just isn't. There is nothing that can be done if your pregnancy card is marked by this condition. I see and hear so many times "it's all my fault", and it just is not. It wasn't my fault and its not yours.

Lets work and support one another to prevent the devastating impact of pre eclampsia, through research, information and support.

Saturday 21 January 2012

Pretenders - Online Betrayal and Heartbreak

I know a lot of my readers are mothers and fathers of premature babies. A lot of us seek and give support online. It makes sense. All though prematurity is not uncommon, it is uncommon enough that we are all spread out through the country. Some of us have children who are poorly and can't mix with other children, although some areas have fantastic, strong support groups, not all areas of the country, and indeed the world, have these sources of support.

My friend Mummy Beadzoid (Christina) wrote this lovely piece about a facebook group, that I am a member of, and love very much. This week something happened, so sad and shocking, and I won't go into explicit detail, only to say that a "member" who had been sharing the journey of her little girl, had made the group aware her baby had died. Only, as it transpired, this woman did not have a baby, and had used photographs that were on a blog, not dissimilar to my own.

Now when I started sharing photographs of Joseph on line, and on the blog, I was a little worried about privacy, future embarrassment, and paedophiles. The fact that someone might poach my photos and pose as the mother of a premature baby in order to get sympathy, or to play out some strange fantasy, never entered my head.

I have no idea of the motivation of this woman (and lets face it, we don't know if she's a woman, she could be anyone). I assume its the symptom of a much deeper problem, and she clearly needs some help.

For those of us who support others, and receive support online, it's deeply shocking, and deeply upsetting that our trust can be breached so deeply. That someone can do this with such little thought of those they are betraying, and, indeed, the family of the little baby who's photographs were used to perpetuate this set of lies.

I have my blog, and my photographs, out in the world in good faith. This episode has upset me so much, and I felt that I wanted, in fact needed, to blog, as a warning to all of us in premature baby, and babyloss circles. Not everyone is "on the level". We need to have our "bullshit radar" about us before sharing our innermost thoughts, and certainly before giving any financial help (I am not aware that this person is trying it on, however have heard of other cases where money has been obtained fraudulently).

My heart goes out to the owner of this group. Danielle is a kind, warm, giving person, who has struggled after the birth of her daughter, and gives of her time and her experience freely without question. She has a group of administrators around her who are just the same, warm, open, giving people.

I'm not going to remove my photographs, and I'm not going to dwell on it. I am not going to stop supporting others on line, or close myself off, as I feel that way, these "pretenders" have been victorious.

I post this as a cautionary tale, and in support of the wonderful work Danielle has done, creating and nurturing this strong, caring group.


Friday 20 January 2012

One Cheeky Monkey

One characteristic Joseph has always had, is that he is absolutely hilarious. Now he has discovered that words make sentences, he's just a scream! He also has mastered the deadpan delivery, that I can't seem to do.

The other day we were walking back from my friends house, and we were near the road. "Hold my hand mummy" he said as we neared the road "be careful mummy, be careful near the road". Yes thanks son I'll be careful.

His new game is to sing "Little Miss Muffet", only our little miss muffet doesn't sit on a tuffet eating her curds and ways, she eats a carrot. Cue laughing and giggling as I stumble and then tickle him until he gets it right!

Joseph is learning new ways to embarrass me every day. The other day I made him walk a long way, and we popped into the supermarket to get baking supplies for my gluten and dairy free baking adventure. Yes, a winning formula with an overtired child who has walked that bit too far. He started to get really fed up and shout "take me back to my mummy!". Some rather suspicious looks from passers by!

Perhaps my favourite Josephism from the past week is when I was dancing the other day to my Just Dance game which I do when he is in bed. He came down from his nap and said "what were you doing mummy?" and I explained I was dancing. He grinned and said "try again mummy", so I did another one. "Oh mummy, another one another one" So I ended up doing an additional hour of dancing. Now whenever he is bored of the telly he passes me the Wii remote and says, "Mummy dance for Joseph". I've lost 5lb in the last two weeks, so I guess I have to thank my pint sized personal trainer!

I shall leave you with Joseph's dinosaur arrangement that he did the other day whilst waiting for dinner.

Thursday 19 January 2012

EMU Australia - Merino and Premature Babies

Last week I attended a wonderful event in Manchester at the Place Apartments, hosted by EMU Australia. A room full of EMU products, ranging from swaddling blankets for babies, to gorgeous coats for their mums and dads, and of course, lots and lots of glorious boots. But EMU's range is more than just their fabulous boots.

As well as learning about products I met some wonderful bloggers, Angela and Anwen, they are such lovely women with fabulous blogs, and it was really great to meet some local bloggers.

Talia hat and mitten set
I really want to tell you about EMU's baby range, because I think in the UK little is known about merino wool. Merino challenges us about what wool is like and its properties. Superfine merino is really soft. Spun and knitted or woven it is so soft. I just wish I could convey to you by words just how adorably soft the swaddling blanket, hat and mittens and sleeping bag were that I touched (and couldn't put down!)

Merino is easy care. So don't worry, you can machine wash it, its durable, so should last you several babies if you have more than one, it's odour reducing and stain resistant.  All important qualities for baby wear.

Ingal Farm Wrap
For a baby born low birthweight and premature there are some additional qualities that are important. You can read more about merino and babies here at Merino.com . As a mum there are two important features of merino that I think are essential for premature babies, and that's why I really want you to know about them. The first is that merino allows your baby to regulate their own temperature. It's an amazing fabric, and we all know how important temperature regulation is, especially here, where there is such a variance in the temperature of our houses especially this time of year.

Merino is incredibly soft and it protects the baby's delicate skin. I truly wish the swaddling blanket had been around when I had Joseph, it was just so supersoft and snuggly and a great product. The fact that as well as being soft, the fabric is durable makes it a sound investment. Once the baby is no longer swaddled, it can easily be used in a moses basket or pram, or on the floor as a playmat.

Kioloa Sleeping Bag
My favourite product is the sleeping bag, available in indigo and stone as well. It has an opening for a seat belt, so fantastic for travelling. It's supersoft like all of the merino range, and of course machine washable. The size is very generous so should last a baby a long time.

EMU is of course synonymous with footwear and there was a great array on show, from baby, to toddlerhood and into childhood. I grew up wearing ugg-style boots, but back when I was a child/teenager they were our slippers, we wouldn't go out wearing them with skinny jeans, or trendy jumper dresses, but its great that now you can!

I hope you have found this post informative and will consider using merino products for your baby! If you have any questions, please ask, EMU has given me a lot of resources to refer to.

And before I leave you with some images of the footwear, let me tell you my personal reason for loving merino. My grandfather ran a sheep farm in Tasmania. Merino is a very important Tasmanian product, and wool farmers have had a tough time over the years. EMU uses Australian merino. The sheep are treated with respect and kindness. It's really important to me that these farmers' expertise and compassion is recognised and rewarded.

Disclaimer: I was invited to an event in Manchester, where I received wine, cake and nibbles, my opinions are my own.

Wednesday 18 January 2012

Max's Birthday - Gluten and Dairy Free Baking

Joseph's little friend turns 3 today. I was chatting to his mum who was at a bit of a loss as to what to do for Max's birthday "he can't even have cake".

Now cake is one of the essential food groups as far as I am concerned, and couldn't imagine a child's birthday without it. Max is gluten and dairy free due to severe allergies, he is also nut free, a lot of the commerical gluten products either contain nuts or can't guarantee to be nut free. So I set about trying to bake some treats for Max.

Twitter really came in useful, I have no idea what I'd do without it at times, I asked a few weeks ago for some help and got loads of help and advice. Several Twitter folk suggested Pure spread, and one suggested to look at the recipes on the site.

Scrummy Biscuits - vanilla

Butterfly Cakes

The first two recipes come from the Pure start. The cakes weren't gluten free, but I substituted the gluten free flour with great success. I used plain flour but added 2 teaspoons of baking powder instead of one. The cakes are so light and fluffy with a tender crumb, and I think they're better than my normal vanilla cupcakes.

For the birthday cake I'd decided on Pavlova which is just my normal recipe, as it only contains sugar and eggwhite its naturally gluten and dairy free. My only issue was what to fill it with, normally a pavlova is filled with cream. My neighbour suggested soya cream, but it can't be whipped so that was no good. I did a bit of a search and found Alpro Vanilla Dessert, and used three tubs of this topped with the fruit you can see in the photograph.

My neighbour was amazed at the goods I produced, and surprised how "normal" they look and taste. I've really enjoyed my foray into gluten and dairy free baking and looking forward to exploring further!

Tuesday 17 January 2012

Having a Premature Baby - Tommy's Guide

It's no secret to regular readers of my blog that I love Tommy's the Baby Charity. Until Joseph was older I had no idea how important Tommy's is to all pregnant women, conducting research, providing information and looking after the needs of pregnant women to reduce prematurity, stillbirth and miscarriage.

I first found out about the plans for the Having A Premature Baby over 12 months ago, and was asked to tell our story. My story appears in short vignettes in the book, alongside the stories of other parents. It's quite amazing to see quotes from me appear in this guide, and I am so proud of it! The guide is produced with thanks to the Asda Foundation.

So why do I think having a guide like this is so important? Whilst a lot of premature births are spontaneous, many women know they are at risk. This guide is non-threatening, its is reassuring, but above all, it is informative. Just seeing pictures of how your baby might look, and a guide to the equipment used is invaluable. Unlike me, who had been in a NICU a few times before I had Joseph, many women have never set foot in one.

Very often I am approached by women who are supporting other women, by grandparents, or people who have been told their baby may be born early, and asking for information. I have struggled at times, as to how much and what to tell people. Now I can send them to Tommy's where they can obtain this guide free of charge (just covering their postage costs)

The 94-page full-colour-book has six chapters:
  • Explaining premature birth
  • Reducing the risk of premature birth
  • The birth – before, during and after
  • Your baby’s time in hospital
  • Taking your baby home
  • Looking after yourself – parents’ wellbeing
You can read more about the guide on Britmums here, and I have told our story for the Indpendent Online today too.

Monday 16 January 2012

Breastfeeding in Public - What's All the Fuss About?

Ideally, I should be putting a picture of myself breastfeeding on this post! Joseph did breastfeed on a few occasions but I never got a picture of him doing so, which makes me sad. But, we never really fed in public. Or did we?

I've grown up around breastfeeding. My mother fed my sister, I remember my aunt feeding my youngest cousin Charles, and assume she fed the other three as well. Most of my friends breastfed. I am not sure of the figures but think its possibly more prevalent in Australia than here.

Expressing is a bit of a different ballgame, but it never bothered me expressing on the ward. This picture was taken in the dead of night, I'd gone down to see Joseph and express by the cotside, well, because I could! It made more sense than sitting in my room feeling miserable.

When I expressed I'd do it by his cotside with screens around me, or in the breastfeeding room if it was free, or shut away in the family room. I didn't really want people seeing my boobs being sucked in and out by a machine, its not particularly natural and its certainly not sexy.

But when it came to feeding, I was really shocked by our unit. We were expected to draw all the blinds, and put screens around, and there was a general expectation not to feed during visiting hours. I found it baffling. Surely in a maternity unit, you would expect to see babies feeding at the breast. Breastfeeding is initmate but is it private? Surely that's up to the mother.

I read this article today, posted by the lovely Mom in Israel. If you don't follow her, you really should, her own blog and the blogs and articles she links too are fascinating.

Now I am sure most breastfeeding women don't breastfeed like she is shown in the picture, but hey, more power to you if you do. But lets just say, if you feed like this in Tesco cafe you are possibly putting yourself in the line of fire. Most of us breastfeed discretely, certainly more discrete than I have seen some displays of affection in said cafe.

It saddens me in the 21st century we are even discussing this, that we need to see nurse ins in New York, Brighton or Debenhams. It's stupid. Personally, I lay the blame with the newspapers and magazines in this country have turned the boob into an object of desire, and not a functional feeding mechanism.

It's time to change.

Sunday 15 January 2012

Not a Silent Sunday

Blimey, what a day. Last night our "stray" cat Niow Niow was sick. She vomited several times, cue much wretching from the delicate little flower that is my husband as we cleaned up time and time again. We thought we'd see how she got on overnight. Unfortunately a scene of devastation awaited us when we came downstairs this morning, Cue a phone call to the after hours vet practice, and off we went, Niow Niow, Corey, Joseph and I, a family trip to the vet. I can't drive, Corey can't talk about a sick cat without crying, so we all have to go to the vet.

So £100 lighter, we left the vet with omeprazole (finally I am an omeprazole mummy - often used in premature babies with severe reflux) and some rehydration fluid, and none the wiser as to what was making our pussy poorly, only to be met by a £70 fine for parking illegally. Apparently it was permit holders only but nothing to say that that I could see, so a quick email to appeal - wish us luck.

The cat lay about feeling sorry for herself most of the day:-

But has been most compliant taking her liquid omeprazole, and is now starting to eat. Hooray. The vet remarked how healthy and well she looked for a stray, raising his eyebrow at me. After a full year and a bit, I think we need to bite the bullet and say we are a two cat family!

Joseph had a mad moment this afternoon, whilst the football was one, and nothing would please him so I knocked up a batch of chocolate playdough, which went down a storm! Joseph had great fun making little cakes, and didn't even eat any of the dough! I was most impressed

We rounded off the day with a lovely meal of meatballs, mashed potato and vegetables. Joseph ate carrots. I'm so proud!

So as not to leave anyone out, here is Corey, Joseph and the non poorly pussy, Atticus Woo.

I am so glad its Monday tomorrow, time for a rest!

Saturday 14 January 2012

Cake a Difference - 6-12 February

This year I will be supporting Bliss by baking cakes, cupcakes, large cakes, any sort of cake, and selling them to raise money for this important charity.

Bliss is very dear to my heart, because without them, I don't know how I would have coped when Joseph was in hospital. Their literature was the first thing I read to help me guide me through the maze of having a sick, small baby. Their family support helpline was there when I was scared, angry, frustrated - their volunteers and paid staff helped me to ask the right questions, to care for my self, to be there for my baby.

Behind the scenes they fund research, which directly helps babies like mine. Without their research babies would not have the receive high quality, evidence based care.

Bliss cannot do these things without money, and that's where you come in. There are two ways I would like you to help.

Bake a cake, or a few! And sell them. You could have an event, you could sell them at work, to your neighbours, to parents at school. You could have a Cake A Difference tea party.

The second way is order cakes from me. If you live in or around Manchester you can order cakes from me and I will bake for you and deliver (within reason) or you can collect.

I love to bake, and over the coming days will come up with a price list, however if there is a cake recipe you have seen that you have always wanted to try but never have the time, why not get me to bake it for you!

Cake A Difference is a great way of getting together, with tea and cake, and talking about Bliss, our babies, and the fantastic work they do. I will be sharing more about Cake A Difference over the coming weeks.

Friday 13 January 2012

I Wasn't There - One Born Every Minute

I am addicted to One Born Every Minute, and have seen every episode of every series, this being the third one. Having done a Facebook status about it on Wednesday night, I can see that many mothers of premature babies avoid it, and quite sensibly so. I find it interesting, and fascinating, they show a variety of different mums and their experiences, including life inside the Special Care Baby Unit, usually at the end of the series.

This week took me by surprise. I had just finished an hours exercise so maybe my adrenalin was all over the place, and I'd missed the first ten minutes, but as soon as I started watching it I was in floods of tears.

It suddenly hit me how different my experience was to those women. I never had a contraction, no one every looked at my lambing end to check out my cervix, I didn't labour. My baby didn't come out my vagina, and I didn't get to hold him.

And that's it, that's what ultimately had grabbed me. My baby was born, and he was taken away. And I was not there. I was not there as they worked on him, ventilated him, checked him over. I was not there as they took him away to special care, I was not there when they trialled him without ventilation. I saw him for 5 minutes in his first 24 hours of life. And nothing can take away that sadness. Nothing. Not the millions of kisses and cuddles I have had since, I was not there.

Unfortunately, these feelings have had a knock on effect. Since Christmas Joseph has been incredibly unsettled, and I have found it really hard to deal with him, particularly at bed time, as cries "mummy I need you, mummy come back" the old feelings come back and I want to just hold him forever and never let him go, which isn't healthy.

Yesterday something happened that put it all in perspective. I ran into an old friend I used to live next door to when I first arrived in the UK. I can't go into too much detail but this friend lived in supported housing as she has a mild learning disability. We lost contact when we both moved house, but are back in touch now. She had a baby six months ago, a girl, she was 8lb + and she delivered her on gas and air, and I am so proud of her. But, due to her disability the baby was taken away and is subject to a guardianship order.

I missed my baby's first days, but I can hold him forever, my friend can see her baby one day a week.

It puts it all into perspective.

Thursday 12 January 2012

Baby Milestones - Software for Parents

This week I learnt about Baby Milestones from Gurgle. I gave the free trial a go, because I wanted to see whether it was something I could recommend to parents of premature babies. One of the reasons I wanted to review Baby Milestones is because as a parent, I have found I haven't kept notes or a baby book, as at the time I didn't know about specific baby books. I do have all the information on Facebook though and now with Timelines I can look back and enter it in!

I love how easy it is to enter information on Baby Milestones and its pretty software too. One comment I had initially is that the images on the software are clearly bubbly, big, term babies which could be a bit upsetting, especially to a new parent, but once you start importing your own images of your baby, these are replaced.

The software is pretty impressive I think.  You can use this software for trying to conceive and it helps chart your most fertile times and then you can enter a pregnancy, and use it to chart your pregnancy. The instructions that I read explain what to do if your pregnancy ends, in a very sensitive manner, and it appears this has been well thought out. You can easily chart twins and more on the software too, which I think is great, and additional new babies too.

Once your baby is born the software tells you the milestones to look out for. My first concern is that you cannot enter the date of birth and expected due date, however I have raised this with the team looking at the software and they are looking into this issue. So it is up to you as a parent to make sure you correct this yourself, either by lying about your babies date of birth, or remembering to look back to the appropriate month of your baby's development.

Having said that, however, the milestones are very broad, and I found that for a lot of things Joseph would have fit the appropriate milestone, albeit at the last moment, for a lot of things, other than his sitting, crawling and walking.

Another thing I love about it is that you can use it as an appointment diary, which is really helpful for parents who have a young person who has a lot of appointments. I really love that you can store all your baby photos and videos, you have everything all in one place rather than files of this and files for that and information written here there and everywhere!

One thing I would like to see, and wish I had the skills to develop, is an adjunct program for parents of premature babies where you can record our special milestones - the day baby came off ventilation, the day baby came off CPAP, when tube feeding was removed, the first breastfeed, the first bottlefeed, when the baby came out of an incubator..... These are the milestones that are special to me and I am sure are special to a lot of you, and I would love to have recorded.

So having used the software retrospectively these are my suggestions for parents of premature babies using this software.

  • If using it in real time, particularly if you have used it to chart your fertility and/or pregnancy, enter the date of birth and forget the software until your baby reaches term, then look at it again. In my opinion, it would be too much of a trigger to look at what your baby "should" be doing.
  • Until the software has the ability to enter the expected date of delivery with the due date, consider entering the due date for the milestone calculation, but be prepared that you may need to adjust that further. It's easy for me now, to realise Joseph was 3 months behind again physically from his expected due date, but at the time it was tough going, especially as Joseph was such a late walker even by 27 weeker standards!
  • Upload images straight away to get rid of the bouncy babies! Although they are very cute, but I think its nice to have your own images.
  • I think using it retrospectively once your baby has closed the gap somewhat is a great application of the software, especially if your purchasing this software for a new additional baby.
  • If your baby has another condition as well as prematurity I would advise perhaps not using this software, and indeed there is a disclaimer when you first use it that it is intended for babies who have been born at term, with no conditions.
Overall I think this is a lovely piece of software, it costs £14.99 and considering you can use it right from when you start to try to conceive until the baby is 5 and you can use it for more than one child, I think its a worthwhile investment.

Disclaimer: I approached Baby Milestones to trial this software, I have received no payment and my opinion is completely unbiased.