Thursday, 31 October 2013

Happy Halloween

Halloween isn't something I've ever paid any attention to. Halloween, until recently, wasn't a "thing" in Australia.

When I moved to the UK I paid it little attention. My two years were spent in a flat with no easy access, so trick or treaters. I then moved to a little house in Ramsbottom, and I'd always have some sweets ready to appease the kids who would knock on the door.

I never really had a "stance" on Halloween, I did think it was a US thing and wasn't that interested. I did expect that once at school, Joseph would want to mark it in some way, but I hadn't given it a lot of thought. 

Joseph was born in May 2009 as I have well documented, I was traumatised. I kept to myself a lot making a token effort at baby group on a Monday and spending a lot of time on my own at home. I was frightened a lot of the time. The doctors put the fear of God into me that Joseph would be a frail, poorly child for his first year and that I was to be careful. I treated him like he was made of crystal.

One day I happened to be in a supermarket and saw the cutest little outfit and bib. So I bought it.

That first Halloween I dressed him up and my husband and I took him trick or treating around our street. I let people hold him, really for the first time. I enjoyed the delight on people's faces as we held our baby up saying "trick or treat" and giggling as people gave us treats and money.

Halloween 2009 was a milestone. I enjoyed my baby. We had fun. I let myself just be a mummy, be silly and let my guard down. And nothing happened. He didn't get sick, noone hurt him, it was fine.

Today our house is decorated. Quite subtly I might add, but there are spiders and skeletons, ghosts and bats.

The pumpkin is carved. "Mummy I want a spiderman pumpkin".

Halloween to me, is a celebration. Of childhood, having fun, eating too many sweets, carving tasteless horrible pumpkins - the English carving pumpkins are not edible to me, blech give me a Queensland Blue any day of the week.

On a personal note Halloween marks a turning point in my own parenting journey, from frightened guardian to loving proud mum.

Friday, 25 October 2013

The Impossible Hug

It's 7.30, we drive to the school and I walk to Joseph's side of the car and open the door. "Mummy I want a hug and a kiss". We hug, and I walk him to his before school club. "Mummy, before you go, I want another hug". We hug again. "Mummy whenever I feel sad I will remember our hugs." I go to work.

I am at the school gate by 3.30, out comes Joseph and straight into my arms for a hug. We get half way down the road "Mummy can I have a hug?" We get home, after a bit Joseph says "Mummy can we hug on the sofa and watch telly?"

Before we know it, it's bed time, we snuggle for stories. "Oh mummy lets have a hug before I go to sleep."

It wasn't always this way.

Arrive at unit at 9.30 am. Put milk in fridge. Go to nurse on duty "Hi I'm Joseph's mum, I'm here to do his cares, can I have a cuddle today?" Nurse looks blank "I'm really sorry I've only cared for Joseph a few times and I'm not confident maybe ask tonight?"

Fighting back tears, I sit by the incubator and talk to Joseph through the port holes. Evening seems a long time away. 

 For someone who hasn't been through it, I think this is the hardest thing to understand. For far too many parents don't hold their babies, for days, weeks even months. You have to ask permission for a hug. Imagine. "Excuse me, may I hold my baby today?" A basic mother's instinct is to hold their baby. Yes there are often very good reasons why a hug is not possible. It doesn't stop it hurting.

What if you don't get a hug because that staff member hasn't been trained? Or has had the training but hasn't had practice moving a 2lb baby connected to wires and machines? Imagine the heartbreak of being told "sorry you cannot hold your baby today".

That is reality. Many times I couldn't hold Joseph, not because he was too poorly but because we had staff members who were new to handing very early babies. Luckily my dream team of 4 nurses realised what was happening and made sure that I was trained so I could do it myself. But sometimes I had to fight.

Family centred care sounds obvious, sensible and reasonable. But the practice isn't always easy. Bliss understands the pressures that units are under and is committed to helping everyone, parents, nurses, doctors and allied health professionals understand how to put family centred care into practice and how to ensure all the complex needs of babies are met.

But we need your help. World Prematurity Day is coming up on November 17th. There are loads of ways you can get involved. A simple way is to share our video. Share it on your Facebook, your Google +, pin it, tweet it, email it! It's a simple message, but a powerful one

You can visit Bliss to find out other ways you can help.

I am raising funds for Bliss to help more parents like me get those Impossible Hugs.

If you can, please sponsor me to dye my hair purple and I am also conducting a 24 hour social media marathon too on World Prematurity Day November 17th.

Thank you as ever for your support.

Saturday, 19 October 2013

When a Blog Post Saves Your Life

It was a Sunday. A year ago. It was all over Twitter blog posts about Savile. Everyone was talking about child sexual abuse. It was overwhelming. I spoke to a couple of people that day and for the first time told people I was a survivor. It was frightening. My husband and son were away I was alone in the house and I felt scared. Scared that I might hurt myself.

The first person I spoke to that day was Zoe from Saying Goodbye who was amazing and she told me about Fragmentz. She also told me a lot about sexual abuse and having a baby, that really helped to put some of my emotional problems into perspective. However as the morning went on I got worse.

Self care is something I have become good at over the years so I knew that I would be safer out than at home, and went to Tesco where there's a Costa. I sat in Costa with my phone in hand, and my dear friend Daniel was around on Twitter. At the time we were good friends, and had shared quite a bit especially about anxiety but I hadn't shared where my anxiety had stemmed from, the abuse I had suffered as a child.

I swallowed hard, blinking back tears, and told him about my past. Over the next few days Daniel helped me. He was instrumental in my decision to come out as a survivor, to put my story out there. It was the hardest thing I have ever done in my life. Even harder than consenting to Joseph being born 13 weeks early.

I wrote two posts, Savile is Dead and another more personal one, which hasn't seen the light of day. We decided to go with Savile and I got support from several other bloggers, Fragmentz, Mummy Barrow and Nickie at Typecast. The day it published I was overwhelmed. So many comments, emails, messages of support, so much love and support for me. Me. Coming out was the best thing I could have done.

The other thing that has come out of it is a deep friendship. Daniel has helped me so much with seeing my GP, getting support in place and going through therapy. He has also seen the power of writing and his own writing has improved markedly. This post about his Nan that he wrote this week is proof of his writing ability and his heart and soul.

I've had friends, close friends before, but never a true best friend because I've always held back. I've always believed myself to be dirty, flawed, a horrible person. For the first time in my life I have a true best friend and I am building new friendships and rebuilding old ones.

I am lucky and blessed, and I have a new life now. After Savile.

Friday, 18 October 2013

That All Prematurely Born Children are Geniuses - Ranty Friday


All opinions are my own and not that of my employer.
Yeah I know. Reading comments on the Daily Mail is much more dangerous to your emotional and physical well being than the original article. If you need reminding why the Daily Mail is dangerous to your health, please find attaced Dan & Dan's Daily Mail song.

Joseph in his first week

One of the things about prematurity is that people seem to think once the child is walking, talking, a reasonable height and weight, that it's over.

That your child is all caught up and everything is just hunky dory. They can start school, do well and live happily ever after. Yes Einstein was premature, and Stevie Wonder and Tyson Furey (see!)

There has been new research which my good friend Edspire has comprehensively linked here, which states that children born prematurely are more likely to underperform at school. (quote taken direct from an article, underperforming makes our children sound like circus seals but that's a rant for another day)

The Daily Mail comments are full of "my child was born 6 weeks early and speaks 7 languages and does algebra upside down in her sleep". Jolly good. My child born 13 weeks early struggles to know when to use the toilet, and to mobilise up and down stairs independently.

When a baby is born very early, like Joseph, 13 weeks, they have a fight on their hands. (And for the record some 34 weekers do too, every prematurely born child is an individual)

They are not weeks full of lullabys and love and fluffy time with their parents. They are full of procedures, time in a plastic box, isolation. Infection, life threatening conditions, invasive procedures, painful procedures. Many pre term children continue, on discharge, to have complex medical battles. Children are born with under developed brains which take longer to catch up. It's not an excuse its medical fact. An incubator with a round the clock medical team does not do as good a job as a womb. Simple.

There's no one size fits all solution. Just allowing children to start on the day they should have been born isn't the solution. It's one of them, and I think it should be taken into account definitely, but it wouldn't have helped us.

You see Joseph was due on the 7th August. He was born on the 8th May.

He hasn't skipped a school year. But there is an extreme and palpable difference between Joseph and his peers. He isn't independently toiletting, his mobility isn't as good as other children, he struggles with self care and he gets bone crushingly tired.  This isn't about education, this is about basic ability. Joseph has not fully caught up yet. And that's ok. But it must be taken into consideration. You can't perform well when you are perpetually exhausted. Simple.

He has lost the love of reading at night as he is knackered. His home life is suffering. He needs a bit longer to catch up, and some additional help.

Joseph hasn't got a statement as he doesn't have any identified additional needs.

Ad hoc solutions like sending him in half days etc are not going to work, now term has commenced. Isolating Joseph and making him different from his peers at this stage will be detrimental, and he will not like it.

What I believe is that all children born prematurely should, when they are allocated a school, have an educational assessment and open meeting with the school and LEA and discuss a plan. A premature education plan.

That might involve adjusting the child's start date, it might involve some sort of statement, it might involve nothing, that the child is deemed to have caught up and all is fine and dandy.

More and more children are being born at 23-28 weeks. They have additional needs, and they should be accommodated.

The impact of not doing so is unfair on the child and on the parent, and on the teacher and other class mates.

Prematurity matters.

It does.

Thursday, 10 October 2013

World Mental Health Day 10 Tips to Keep Mentally Healthy in NICU

Some of these I did. Some of these I wish I did. I found having Joseph in hospital one of the most challenging times in my life, and as regular readers will know it had a massive impact on my long term mental health. On World Mental Health Day I wanted to write about this journey and how we can perhaps help our mental health during this time.

1. Stay connected. Life on NICU is hard, sterile, cold, scary, exhilirating, alienating all those things and more. Find ways to stay connected to real life when you can. Most important of all try and stay connected to your baby, despite what is happening this is your baby that you made and you are doing your best to be an amazing parent. Your baby needs you.

2. Family centred care will help you feel like a parent and will enhance opportunities to bond which will help your own mental health. You can find out more about Family Centred Care on the Bliss website. You can also direct your hospital there too for tips and guidance. Family Centred Care will help with point one, keeping you connected and at the centre of what is happening with your baby.

3. Write things down. It doesn't have to be a diary, I couldn't manage that, but just thoughts, motivational things, fears, worries even just doodling or drawing. I remember writing "now is not forever" over and over. Some people blog. The beautiful Mother Scuffer is keeping a blog of her baby's journey at the moment and its simply beautiful.

4. Listen to music. My ipod was often in my ears especially at distressing times. I listened to music I knew well, that would give me comfort and solace. It also helped to lessen some of the aural trauma of NICU. Anyone who has had a child on monitoring will understand what I mean. The beeps never truly leave you.

5. Talk. There is increasing clinical evidence that talking during a NICU stay will help alleviate symptoms of PTSD. Maybe your unit will have a counselling service, not all do. I found the chaplaincy service at our hospital invaluable they were all trained counsellors and didn't talk about religion unless asked specifically. Bliss have a helpline and a message board. And there are lots of sources of support from parents who have sat where you are right now.

6. Maintain your friendships. I admit I shut friends out, I didn't know what to say to them or how to behave, the situation just seemed so alien. I now understand everyone wanted to help me. Don't be afraid to show emotion. I found Facebook the best way of maintiaining friendships. Some of the messages I received will never leave me. Comfort and support came from unlikely sources.

7. Take time out as a couple. If you are in a relationship, take some time out together. At weekends we would go to the unit together then go out for lunch, buy something for Joseph then one or both of us would go back. We went out for meals a few times. It's important to have time away together.

8. Eat and drink well. Try and eat well. It's hard especially relying on hospital food. I used to buy little packets of fresh fruit, and I drank a lot of smoothies and juices during this time. I usually avoid such drinks due to calories, but your body needs lots of nutrition and sometimes when stressed drinking is easier than eating. Keep your fluids up too. Good nutrition will help your mental health, and just eating something enjoyable like a fresh mango or a crisp apple will help focus your mind.

9. Be honest. If things are getting hard, be honest firstly to yourself, then tell someone. I found in hospital I was ok, because I knew I had to take care of myself and I did do, when I took Joseph home the wheels fell off. It wasn't until I was at baby massage bawling my eyes out that I realised I had a problem. It's ok to say you are not coping, no one is going to think badly of you and people want to help you.

10. Support others. Sometimes in trying times helping someone else can give you a sense of well  being and help you feel more connected. It could be little things like helping someone find their way in the hospital, or taking one of the mums for a coffee. I made little bibs for some of the other babies. I'd often welcome new parents to the unit, and pop out for coffee and cake with my new friends.

What are your mental health tips for surviving NICU?

Friday, 4 October 2013

How Does it Feel? - having a baby or child in hospital

One of the things I haven't done for a long time is a crowd sourced blog post. I asked my Twitter and Facebook followers and friends how it feels to have a baby or child in hospital for a long stay.

Heartbreaking over and over people said, "heartbreaking"

An exhausting emotional limbo teetering between hope and heartbreak. Emmathemum
Lonely I felt this so keenly. I felt so alone when Joseph was in hospital, heartbroken and alone.

Rollercoaster: No one can prepare you for the highs and crushing lows of having a child in hospital.
Like living in a parallel universe when the rest of the world lives in the universe you used to live in. It's frightening, alien and unknown where the lows are tough and your frightened to celebrate the highs incase u go backwards: Claire
 All consuming: Life as it previously existed has stopped.
 And the shock when you emerge briefly (for food, a shower, whatever) that the rest of the world is carrying on as normal and has no idea that your darling is fighting and on the edge... Jo
Disempowering: Not "owning" your baby is a difficult thing. Some units are better than others at putting families in the centre of care. 
scary, infantilising, exhausting, alienating: Mr Boos Mum
Inspiring: I could relate to this one, now with perspective its amazing looking at my tiny baby and his resilientce and strength, and all the efforts of the doctors and nurses to save him.
Tiring, but inspiring, supportive and hopeful: Candi
In a nutshell:  life changing, nerve racking, scary, grateful, though provoking, angry, hopeful, worried, helpless. Jade 

Roller coaster, agony, delight, fear, expense, stress, isolating, confusion, upset, anger, calm (depending which nurses are on!): Jo

The worst AND the best experience of my life! Mummypinkwellies   

Bliss   understand all this and are working hard with unis around the country to improve care for babies and importantly their families.

It's why I'm dying my hair purple, and sharing on social media for 24 hours about World Prematurity Day on November 17. If you would like to support me by sponsoring me please click here

Wednesday, 2 October 2013

Aneurin's Story

Last week I wrote Life and Death in the NICU , and I got talking to one of my Twitter friends and discussed whether she would like to share the story of her beautiful son Aneurin.

It was World Prematurity Day last year when I met Naomi. I was struck by her encouragement and grace, and her support on that day was so valuable. Naomi's son Aneurin was a very special gift, but sadly lost his fight against prematurity after 4 days. Here is their beautiful story.

Aneurin on Day 1
Our little boy was a fighter. It was apparent early on in the pregnancy that something was wrong. Eventually after many scans and consultations, he was diagnosed with severe intrauterine growth restriction, because of a placental dysfunction. 

We knew that we could lose him at any point. We got through those long days by hoping for the best, and being reassured by his constant kicking (he was a particular fan of disco and Donna Summer).
Eventually at 30+3, it was decided that he would be delivered. On April 24 2012 at 13:11, Aneurin Fred Owens was born. It was the happiest moment of our lives. The Neonatal Team were in the theatre, ready to whisk him off. His Neonatologist, Dr Barr, came over and said he looked under 500g. We knew that for him to have any chance, he needed to be over 500g. They weighed him, and he was 550g (1lb 2oz). Small but possibly big enough. 

The Neonatal Team at the University Hospital Wales, Cardiff were amazing. While I was recovering they brought a picture of Aneurin, which we will always treasure. As soon as I was well enough we went to see him in the incubator. We knew what to expect because we had a ‘tour’ of the Unit before he was born. But nothing quite prepares you for seeing your beloved child, hooked up to all those machines and wires. 

We were amazed at how ‘big’ he looked. We had expected him to be tiny, but he was quite long. He looked perfect to us and was utterly beautiful. 

Over the four days he was with us, Aneurin bore the many interventions with courage and grace. But the difficulties were becoming insurmountable. Sadly, on the fourth day, Dr Barr gave us the news that we had been dreading. After frantic phone calls to our parents, to get to the hospital, we went back to the ward to sit with him. The incubator doors were opened, and we stroked and talked to him.
We watched the figures on his monitor; we knew if they kept coming down, this would mean he wouldn’t survive. Despite the Neonatal Team’s best efforts, they kept coming down. Even now, 17 months on, every time I hear beeps, I am taken right back to sitting on that stool stroking him, and looking nervously at the monitors. I hated those beeps. 

Eventually, we were told it was time. Screens were brought in for privacy, and we were prepared for the first time we would get to hold our son (he had been too small for kangaroo care). Despite the fact we were in the middle of a busy Neonatal Unit, it was as if there was just the three of us. That is testament to the Neonatal Team. Dr Barr hand-ventilated him as he was put in our arms. We marvelled at our little fighter, who had given us so much joy and happiness. Holding him was like holding a bag of air. We were determined not to cry, we wanted his passing to be peaceful. That he would just hear our voices telling him that we loved him. He passed away peacefully in our arms.
The peace didn’t last. As soon as he had gone, I wailed in the way you see people on TV do. Dan carried Aneurin in his arms down the corridor, to introduce him to his Grandparents. 

When we went to see Dr Barr after his death, she said something that stuck with me. She said that ensuring that deaths are peaceful is an important part of their job. We will always be grateful that they were able to make Aneurin’s passing as peaceful as possible. 

It’s the small things that stick in your mind. Such as Dr Barr remembering that my in-laws were Welsh speakers, and speaking to them in Welsh, the way Dr Barr described Aneurin as a ‘valiant fighter’ in one of her letters, the card we received on Aneurin’s birthday from the Neonatal Unit, and even the mortuary assistant who told us how beautiful our son was. 

For these reasons and so many more, I’ve always said I would walk through fire for all the staff at the UHW who cared for Aneurin and us during our difficult pregnancy. There will never be enough words, in particular for the Fetal Medicine and Neonatal Teams, for us to say thank you.

Losing a child is on the top of most people’s nightmares. I struggle to explain what it feels like. The only analogy that I can come up with is that it is like a nuclear bomb going off, and everything in your life is laid to waste. Because your past, present and future is never the same. But during the hardest days, we remember how brave and valiant Aneurin was, how much he fought, and this gives us the strength to keep putting one foot in front of the other. 

Thank you so much for sharing Aneurin with us. 

I will be supporting World Prematurity Day again this year, with a 24 hour social media marathon. I will also be dyeing my hair purple. All proceeds with be going to Bliss - UK's only charity dedicated to special care babies and their families.  You can sponsor me here, thank you