Tuesday, 16 April 2013

#Newborn2013 - We All Have a Role to Play



When I started my blog, I thought I was blogging for me, and maybe the odd friend or family member. My first dozen or more posts are quite insular, and for a while I stopped blogging. I found it hard to keep the momentum going, what should I blog about? What direction should I go?

After a while I discovered that charities love bloggers, and that I had some really important things to say. And that people wanted to listen, and to get my opinion, and that made me feel great.

So when the Partnership for Maternal, Child and Newborn Health a division of the World Health Organisation asked me to help spread the word on the #Newborn2013 conference in Johannesburg this week, I was honoured. Blogging is important and influential people do read our blogs.

One of the things I have learned, primarily through the #BorntooSoon activities last year is that the United Nations through WHO and the PMCNH strongly believe we all have a role to play in the health and wellbeing of babies everywhere.

And who better than us mums? Mums who know the power of giving our babies kangaroo care and skin to skin, of good midwifery care at home where possible, of good nutrition and sanitation, of delaying parenthood until we are physically and emotionally ready.

So much of what can help newborn health isn't fancy, it isn't expensive. A lot of it requires really simple behaviour change, and simple methods. Kangaroo care is free, it's instinctive. A lot of what we have done in the past has convinced people in developing countries that modern methods are superior, and that just isn't true. For most babies the best place is on the mother's chest, not in a plastic box. My favourite figure from the #BornTooSoon report is that almost half a million babies each year could be saved by Kangaroo Care alone. It's free! This is an easy behaviour change in my opinion.

You can follow #Newborn2013 on line and on Twitter. You can get involved in the conversation, and you can help the Partnership and other organisations determine their objectives for the coming years in ensuring every child has great opportunities, starting with the basic right to life.

Sometimes its hard to see what role you can play in Newborn Health, but it can be as easy as a tweet, as joining in campaigns online, but also looking at the bigger picture sometimes.

I urge you all to get involved in any way you can, for we all have a role to play. 


Saturday, 13 April 2013

The Third Trimester - If Only I'd Known

I thought long and hard about entering this competition for Aptaclub's new 'Preparing for Birth' app. I love new technology, and during pregnancy, although not an owner of a smartphone at the time, I would have loved this. I devoured pregnancy magazines and books, I was so excited to be finally pregnant at the age of 35, and carrying beyond 12 weeks was a huge milestone, having lost at least 2 babies before.

This is week 3 of my Third Trimester

But nobody really told me. No one told me that 1 in 13 babies are born prematurely. Nobody told me that 1 in 9 babies are taken to special care baby units. That's a massive figure. And as a population of mothers, to be honest, we are largely ignored by the big companies, the magazine editors, the app developers.

No one told me that I may not get a third trimester, much less tried to prepare me. My third trimester wasn't spent getting bigger, struggling to find clothes that fit, dealing with all the annoying pregnancy symptoms, heartburn, trying to find a comfortable position to sleep. I didn't have to spend another 3 months watching everything I ate, being careful to avoid listeria, salmonella and all the other nasty bugs that can hurt the life growing within.

No my third trimester was different. A whole new set of worries. Would my baby live? When my baby had severe growth problems agonising over the decision as to how to proceed with feeding, trying to put a 3lb baby with the tiniest mouth on to the breast, after he had already been feeding intravenously for 5 weeks. Making decisions about whether to allow broad spectrum antibiotics knowing they could affect my babies hearing, worrying about whether oxygen therapy would affect his eyesight? No one could have prepared me for huge decisions I had to make as a mother, when really, I should still be pregnant.

It's hard not to feel jealous of mothers who spend their third trimester in, yes, an uncomfortable and sometimes scary place, but at least it is well chartered. There are apps and magazines. When you have a premature baby about from amazing charities like Bliss, there is precious little else. Nurses and doctors are often very busy, and explanations sometimes are delivered in a way that leaves you more confused than you were when you started listening. There are no apps to guide you, you have to use your instinct, and that's really hard.

Having a premature baby brings with it a set of worries and concerns that are so intense, but not unique. Now having a huge community of premature parents I know that a lot of our worries are shared, the same. Is there an app for that? No, not yet, but maybe there should be.

I welcome this app, however, because of course, the vast majority of women do go full term, thankfully, and I for one celebrate that. These sort of apps are invaluable and important.

Don't forget those of us who do deliver early, our specific concerns and worries, and our amazing, resilient special babies.

“This post is Not Even A Bag of Sugar's entry into the Aptaclub ‘If Only I’d Known…’ competition”





Thursday, 11 April 2013

Milk Banks - Why Use Donated Milk?

Liquid gold. That is my milk that I expressed for Joseph whilst still in hospital. Breast milk is more than just food for babies, its medicine, and for babies born extremely or very premature, breast milk is essential.

Today I was very fortunate to be invited to celebrate the 10th birthday of Cheshire and North Wales Milk Bank. To celebrate they have produced and released a DVD that explains how milk banking works and more importantly explains why neonatal units should, wherever possible, use human milk for babies born prematurely or sick. You can watch the DVD in four sections here.

When your baby is born prematurely you are encouraged to start trying to express within six hours. I was fortunate to have two brilliant midwives who did this for me, as my hands were battered and bruised and I was poorly. Their help was instrumental and I got a good supply established.

However, I was lucky. One of the medications I was on helps to stimulate supply, and I found it easy, in the beginning. For some women this isn't the case. They may be on medication contraindicated in breastfeeding, they may be too poorly, under immense stress, or have a medical condition such as HIV which is incompatible with giving the baby their own milk.

Sometimes donated breast milk is just needed for a short period until the mother's own supply is established. Sometimes giving formula can be devastating to the mother's own belief system, which can then make their own production even more difficult to establish.

Importantly, there is increasing medical evidence that breast milk can help prevent the deadly neonatal condition NEC, necrotising enterocolitis, which Joseph was diagnosed with at day 5. Joseph wasn't on formula, he was on total parental nutrition at the time, but was on breast milk from early on, and made a full recovery.

I was surprised today that there is some resistance by some units in using donated milk. My message to you is if you are a mum who is likely or has delivered early, know that donated milk is available and be prepared to ask for it. At ten weeks my supply sadly stopped, for one reason or another. The decision to give formula devastated me, I wonder if I had been given this option for a week whether it would have bought me a bit of time to get things re established again.

I was really impressed by the passion and dedication of the Cheshire and North Wales Milk Bank team and it was a truly enjoyable morning. I learnt so much more about the importance of milk banking and urge you to watch the video.



Wednesday, 10 April 2013

All My Loving - The Story of a Lullabye

Nothing is sweeter than singing your baby a lullaby. The first lullaby I ever sang to Joseph was in special care. It was a Friday night, we'd had a hell of a week, and Joseph was finally stable. It was nearly time for us to go home.

I opened the doors of the incubator and gently and softly sang

"Close your eyes and I'll kiss you
Tomorrow I'll miss you
Remember I'll always be true
And then while I'm away
I'll write home every day
                                                  And I'll send all my loving to you"

I looked up and there were tears in the eyes of the two nurses looking after Joseph, and a little tear slipped down my cheek too. I so wanted to hold my baby, to rock him to sleep, to really love him and cherish him properly. But he had to sleep in his plastic box.

Safe sleeping has always been something close to my heart. Since my friend Jennie at Edspire lost her precious Matilda Mae safe sleeping and sudden infant death syndrome have become something even closer to my heart. Every year 600 babies are taken inexplicably from their parents. It shouldn't be this way, and every loss is so heartbreaking.

I am delighted that FSID has changed their name to The Lullaby Trust. It's a fitting name for special babies and their parents to help communicate the importance of safe sleep, and keeping our babies as safe as we can from sudden infant death syndrome.

For our premature babies in particular, are at higher risk. It is also difficult for many of them, like Joseph, when they come home. For developmental reasons, like in the picture above, babies sleep in a variety of positions to ensure their developing bones, particularly the skull, grow correctly. When they come home, they have to get used to "back to sleep".

One thing that remains constant, is the lullaby. Sometimes a traditional one like "twinkle twinkle" sometimes a rock song slowed down, one of my favourites is "Sweet Child of Mine" which works really well as a lullaby.

Please support The Lullaby Trust in any way you can and help spread the safe sleep message.

Sunday, 7 April 2013

A Bathroom for Someone Born to be Different

Galaxia Bathroom suite
When I broached the subject of adapting our bathroom with my husband, it was with a heavy heart. My husband, Corey doesn't make a fuss, he just gets on with it. You maybe have seen the Channel 4 series Born to be Different. Our natural favourite is Zoe, born with Arthrogryposis.

You see my husband has the same condition as Zoe. If you have watched the programme you will remember Zoe with her elbows that don't bend and issues with her ankles and feet. In my husband's case his wrists are affected but elbows are fine. It's his knees, ankles and toes most badly affected. He has had numerous procedures to try and help correct his problems, but sadly there are no further surgical options. He is limited in movement and it's getting worse.

We had to buy our current house in a hurry, Joseph was born 3 months premature, we were living in a one bedroom flat, when he was one we moved here. In the three years since we moved my husband's mobility has decreased and he is struggling to be able to step into the bath. The bath has no shower over it. In addition Corey's toes are bent over and cleaning them is difficult, and he is getting recurrent fungal infections.


Our current propertly only has a bath, but we don't want to put a shower over it until we can afford to have it removed and a proper walk in shower installed. This suite from Bathshop321 would be ideal. The Galaxia is sleek, looks simple to clean and would give Corey some more freedom.

I am quite philosophical about losing the bath, my parents house in Australia only has a shower, and Joseph isn't a huge fan of baths.

My only dilemma will be how to decorate? Classic, bohemian, retro, outdoorsy? Check out my eclectic Pinterest board....Bathe

My entry into the Tots100/Bathshop321 Competition

Saturday, 6 April 2013

Maternity Clothing - Are You Serious?

This is one of the only pictures of me in a maternity specific item. I bought it online at Next, and I loved it. I wore it for a few weeks and then delivered. The morning before I went to hospital I received a beautiful linen dress via home delivery. I wore it twice after delivery then never again. It made me look pregnant.

As a blogger I often get asked to publish content for Search Engine Optimisation firms. Sometimes, though not often, these firms even offer us money to do so. I always say no.

Since the award nomination I am increasingly asked to host content, and often from maternity clothing firms, often some very big ones that you would know the name of, and sometimes from lesser known ones. They usually start with "I have read your blog and we love it and would love you to host some articles about how to look fantastic in later pregnancy".

They have NOT read my blog. That is a lie.

For if you had read my blog you would know that the vast majority of my mums spend their last trimester sitting in a hospital, in whatever is clean and gives good access for kangaroo care, and doesn't cause you to overheat. You would know that glamorous parties are the last possible things on our mind.

You would know we spend the third trimester not moaning about feeling uncomfortable, or that nothing fits, or that we feel frumpy. You would know we are stressed beyond measure we may not take our babies home.

Does my title, my header picture not say enough?

If you are peddling maternity garments would you kindly please go away.

However great clothes for kangaroo care, and you may be on to a winner.

Friday, 5 April 2013

Questions

Joseph has been attending just about full time nursery for the past month. He's finding the long days a little challenging but his development appears to have gone through the roof. Up until recently I was concerned he still wasn't jumping. I had stopped even trying to teach him, as a) there is no sports bra in the world strong enough to prevent a black eye b) I felt ridiculous and c) I was concerned for our floor boards.

The other day I was quietly sitting in the living rooom when from upstairs I heard "to infinity and beyond!" followed by a rather loud thud. "Hooray", I thought, "he's learned to jump". I whizzed upstairs and he said "mummy now I've learnt to jump when do I learn to fly?"

On Good Friday Joseph asked my very non-churched husband "how did Jesus die?" and Corey came some sort of explanation involving Pontius Pilate. Then Joseph, an hour later asked me "Why did Jesus die?", me being churched tried to give a Sunday school answer about sin and Jesus dying so that we would be saved. Joseph trotted off quite happily.

On Saturday we had the news on and Joseph asked "mummy and daddy, can you tell me about North and South Korea?" We both turned to him and said "just ask us the Jesus question, that's much easier".

Life is just one continuous question for Joseph, which is great, and its lovely to hear him articulate all this wonder into questions. "Why do some people get sick?" "Why do people die?" "Will Father Christmas die on day? "Will he die on a cross mummy?"

Now to find the book of answers.......

Monday, 1 April 2013

Peace in the NICU

"If we have no peace it's because we have forgotten we belong to one another "
Mother Teresa

I am not a very good memento keeper. This weekend we have been doing a large scale tidy up and I found this.

It's a plastic bag and inside is a wedding photograph, Joseph's cot label and a leaflet I picked up from the chapel the day before Joseph was born, entitled "Perfect Peace".

Unlike a lot of parents, I had been in neonatal units before Joseph was born. My dear friends had had a baby born prematurely in Australia and I visited him in both units that he was accommodated in. Then I did a period as a volunteer in my local unit in Launceston.

I knew that Joseph would be exposed to excessive light, noise and that he would be apart from me, his mummy, for long periods every day. I wished, as well as health and a swift recovery, peace for my little boy. As I hastily grabbed my bag to take to hospital, not knowing for sure that I would deliver early, I slipped in a wedding photograph. If we could not be there all the time, our picture would look over him. I chose one full of joy, sunshine and happiness.

I am not strictly speaking any religion, I identify most strongly with Christianity as this is what I know, and how my spirituality manifests itself. On that leaflet that we left for Joseph had the following quote:

Jesus said, "Peace I leave with you, my peace I give you, I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27
 It gave me peace knowing that someone was always with Joseph. I trusted in that peace. I felt at all times Joseph was in safe hands, not just the nurses and doctors, but Someone Else, and that gave me enormous peace.

I am not a momento keeper, and I will blog about this more for the Bliss blog in the coming weeks.

I am so glad though, that I kept this little plastic bag, as a reminder of all we went through and the happy ending we have.