Sunday, 15 December 2013

Where Can I Buy Premature Baby Clothes?

I am often asked this question "Where Can I Buy Premature Baby Clothes?" This question is rarely asked by parents, more often it's friends or family members desperate to buy a gift for the new arrival/s, and dismayed to find nothing on the High Street.



When a baby is born very early and small they usually don't wear anything other than a nappy and maybe a hat for the first days, weeks or even months. The wearing of clothes is a massive milestone. So for baby born between 1 and 3lb, clothes may not be necessary at all. Before you buy anything check with the parents.

Specifically made early baby clothes are expensive. It's a niche market and they take a lot of work to produce. It's not unusual for a sleepsuit to be around £20 which is why I went the Mothercare 3 for £15 route and just made do with them being a bit big!  Don't be tempted to go down the doll clothes route, they are not made to accommodate a premature baby's needs. 

In our case Joseph was born weighing 1lb 7oz. My dear friend Jennifer bought me a gorgeous handmade NICU vest suitable for his birth size and we tried to get some wear out of it, but on our NICU it wasn't allowed when they were so small, and once he was big enough for a vest, it only had a week or two left of use!



Vests are a good purchase and often the baby will wear a vest before it goes onto clothes. Vests are the one item I think its pretty essential to buy in the correct size and at the end of the article I'll give you some links to some on line stores.

For baby grows I used Mothercare early baby up to 5lb. He started wearing these at 5lb. They were huge on him and he fit them for over 2 months! A big of artistic licence with folding and tucking was required. However I think for really early babies loose fitting outer clothes are best as their skin mantle is so delicate plenty of room around the skin can be a good thing.

Rather than clothes, I always suggest two things, blankets and muslins. In NICU I used muslins loads, as swaddling cloths, to go over the sheet to catch dribble etc, as make shift nappies at weigh in time, all sorts of things. A really lovely pack of muslins is a gorgeous gift. The other suggestion is blankets. I had fleece, cellular and acrylic. Taking our own blankets made me feel like Joseph was my baby and his cot was our space. A comforter is always nice, like the Cuski. You could even buy two, one for mum and one for baby so they can swap them.

Gifts for mum never go astray and when a baby is born prematurely mum might feel totally unprepared and lost. Beautiful handcreams preferably with cotton gloves, nice chocolate, magazines or easy books, breast pads, a voucher for some feeding bras are all lovely gifts.

My favourite suppliers of premature baby clothes are

Cheeky Chums
Early Baby Store
Teddy & Me

I hope this article helps as its something I am asked a lot.

Friday, 13 December 2013

Why I Support Christmas Jumper Day

Today is Christmas Jumper Day. I love a good Christmas jumper, with your British cold miserable winter you need bright cheery knitwear to make that pre Christmas season nice and jolly. But Christmas Jumper Day isn't just about who has the best reindeer on their knitwear. It's to raise money and awareness for Save the Children UK

One of the first Bloggers I ever met was Christine from Thinly Spread, I saw her speak at Cybermummy11 and she completely changed my view of blogging and made me realise I could have a huge impact on my world with my blog. It's partly because of her I am where I am, and have never given up.

Today from 1-2 there's a Twitter Party. Join in, put your pound in the pot (ok text it to 70050 TEAMTHINLYS) and post a selfie of you in your jumper. No jumper? Stick a bauble on your existing jumper or wrap some tinsel on your wrist.

Save the Children do masses of work internationally in premature birth and were one of the authors of the Born Too Soon report. Their work helps babies like Joseph who without their investment wouldn't stand a chance. 

I have my jumper ready in the mean time here's my little man modelling his effort!





Monday, 9 December 2013

I Thought It was Over - PTSD

Walking into a toy shop yesterday I stumbled into the nursery section. Excited prospective parents looking at prams, car seats and nappy sack systems. And I quivered. And the tears fell. And I started to shake. It's not just that we can't have more children, it's that prematurity robbed us of so much as parents. And it's made Joseph's start in life harder than it should be.

I quickly went to the Iron Man section to focus on buying Joseph's Christmas presents. I took a great big deep breath and started to focus on the here and now. A sales assistant came and started to chat to me about Iron Man and Christmas. I started to calm down, he had no idea of the internal battle within. I gathered myself together, bought the present and went home.

This week Joseph's teacher told me how far behind Joseph is other children. She explained that "Joseph is Joseph" whatever that is meant to mean, but that he is not interacting socially with other children, behaviourally difficult to manage and generally not doing well.

Sadly, this was said in front of Joseph and he's been upset ever since. "Mummy I am not going to read with you because I am not good at it". "Mummy I don't like school and I don't fit in". One of the things that is hard is that my own school life was traumatic, and I really hoped Joseph would find school a safe place to develop and learn. It breaks my heart history appears to be repeating itself. I was a loner at school. I was good at reading, but behind in maths and had a lot of trouble with physical education.  I was singled out as having Special Educational Needs, although back in the 1970's it was called "retardation". I didn't have SEN as it turns out, I was just different.

But this experience is a good thing. I can use it to help Joseph and to empathise with him, and to make sure that school remain positive and help Joseph focus on the things he can do and does do well.

I am over reacting, I know I am, but it isn't my fault. I feel so responsible for this little life and that I've made things harder for him by failing to deliver him at term. "Be quiet voice, term babies can have problems too." I should have fought harder for early intervention "Be quiet voice, he was seen by three consultants none of whom felt it was warranted." I feel like I should have prepared school more "Be quiet voice, you had a one to one meeting with the teacher before he started, its not your fault she resigned".

So there are two issues, dealing with school, finding out exactly what's going on and being done and what we can do to help Joseph, but also managing me and these spiralling thoughts and over reactions.

I'm having nightmares and flashbacks again and the PTSD is flaring up. I know I have to keep working on it hard, because if I don't, it will control my life again.

I know I have to work hard on my self care and not ignore what's happening, but also not play into it's hands.

I can't ever afford to forget that I do have PTSD. I am in recovery which is great, but its always there, and to beat it, I need to acknowledge it.




Tuesday, 3 December 2013

Break Barriers Open Doors - Where do we start?

Today is International Day of Persons with Disabilities. The theme this year is Break Barriers Open Doors.  This post was meant to be "how you talk to children about disability" please read on!

I started being interested in disability issues from the age of 7. I attended a special school for a year and met children from all sorts of backgrounds with various conditions. I was restreamed after a year. My school then introduced a scheme where children from the local special school would visit once a year. I will never forget my year 5 teacher saying "make sure you put all your valuables away, they are not like other children". I challenged her on it, which for me back then was very rare. She was suitably chastised, and when the children arrived I think she had her own eyes opened that actually there was no difference between "them" and "us". Thankfully now integration is widely practiced, however what's important is that there is true integration which means making sure our attitudes are inclusive ones and we are not just practicing tokenism.

In 1981 when I was 9, we had the International Year of the Disabled, which shocked me as much as inspired me. To be honest, a lot of the rhetoric around last year's Paralympic Games was very similar to that being used at this time.  People's attitudes were really quite frightening. It was great to see stories of triumph etc, but the role of the person with a disability in society isn't necessarily to inspire, it's the same as the rest of us, to have choice, to have freedom, and the ability to live the life of their choosing. And disability still vastly restricts a person's life choices. That is wrong and we need to change it.

I did volunteer work through university and beyond in Citizen Advocacy, assisting people with disabilities to speak up for themselves and have their choices known. I then worked as a disability support worker for 5 years and reprised this role when moving to the UK. I hate the term carer, or even support worker. Our role when we work with people with disabilities is a partner, a facilitator, an empowerer.

I've grown up seeing people as people. For me it isn't rhetoric I just don't really notice it. 1 billion people in the world are estimated to have a disability. However, when I trained in disability support work the philosophy I learnt is that we all have disabilities, things that make us less than perfect. And we are all just an illness or accident away from severe disability.

Teaching kids about disability isn't important. Teaching them about people is what is important. My best friend has a condition called Duchenne Muscular Dystrophy. We became friends over 2 years ago, and Joseph met Daniel a year ago.  If you ask Joseph about Daniel he would tell you that Daniel has dogs and a cat, loves fish, and computers and is fairly rubbish at Angry Birds. He might tell you Daniel needs help with his breathing, but he probably wouldn't. And I would be very surprised if he mentioned Daniel's chair.

I answer Joseph's questions honestly. He did ask once if Daniel would die and I explained that we all die one day, and that Daniel may die sooner than he should. I used this as an opportunity to explain the importance of handwashing and keeping Daniel safe from germs, and also the importance of making the most of everyday and to enjoy his company.  I giggle if Joseph is playing computer games with Daniel and says "your arm is in the way move it!" rather than get embarrassed.  Joseph doesn't treat Daniel any differently than he does any of my other friends. He treats him with respect, and with kindness.

Kids pick up on your own attitude. If you can see past the disability to the person's personality, to what makes them them, then your child will too. Questions do crop up and its ok not to have all the answers. You can endeavour to find them out together.


Joseph hasn't even noticed that his dad has a disability, arthrogryposis multiplex congentia. He's never really noticed that he walks with an unusual gait, and doesn't bat an eyelid to the fact this hands are bent a bit, and there are things he can't do. Joseph is growing up understanding variance and seeing the person as a person.

Now more than ever we need to develop more compassion, more understanding. It saddens me that whilst there has been change since I was Joseph's age it is far too slow.

To break barriers and open doors we first need to start by examining our own hearts, our own attitudes and help our children grow in love and compassion.

This is where we Break Barriers and Open Doors. We start with the hearts and minds of our children. We teach them about people. We answer questions open and honestly but we don't make a big deal of it. We concentrate on getting to know people, their hearts and their minds and their personalities.

That's how we do it. 



Sunday, 17 November 2013

I'm a Mother Get Me Out of Here

That night, after the day from hell, I went home and I wrote down a list of questions. One the Monday morning I went to see my favourite nurse and I asked to see her alone. She took me into the office and shut the door.

"I can't do this anymore" I said. "It is just too much, too much pain, sadness, I need to go home". She nodded. "Tell me what steps does Joseph need to go through before discharge". She outlined his feeding as the biggest issue, his bradycardias and his heart murmur.

My milk was beginning to fail and I was geting so exhausted. I knew the supply in the freezer was dwindling.

I asked about donor milk. No it was too expensive. Can I buy it? No, not Trust policy. Oh.

That afternoon I sat with Joseph and I let myself cry. Utterly selfish tears. I knew what I'd have to do.

The next day was ward rounds. I waited for my favourite doctor. We had had our moments but I knew he'd tell me straight. "I have had enough" I said. I didn't cry. "I hate this place" He looked at me with compassion. He explained about the issues as the nurse had done.

I made my decision. We would start giving formula. It made my heart weep but I couldn't go on. I gave Joseph nutriprem. I felt like I was poisoning him. He drank it. He drank alternate bottles of that and breast milk. I kept trying him on the breast when I thought I could get away with it.

And finally my supply stopped. Bottle after bottle was drunk. His bradycardias became less, his weight improved.

And two weeks after we got our discharge date.

I hate formula.

But it got my baby home.

No Baby Born to Die

It was a Sunday.

The unit felt like a knife had cut its heart. Everyone was busy. We had been there 7 weeks. I was a pro by then.

The nurses had no time to spare, with three babies in ICU which never happened, 4 babies in HDU and the nursery nearly full.

I knew where things were kept, teats, bottles, expressing kits, sheets. I helped parents and the nurses. Then I saw him. He was registrar he didn't normally work on our unit. He had sweat on his brow.

"Do you need some water?" I asked? "Oh please", he said. I took him the water. He drank it, I took the cup. I hesitated. "Do you need a hug?" He looked at me and said "yes" I hugged him. He thanked me and walked back in. I knew what was happening.

One critical baby, one on the edge of stability and one crashing. The baby was on a resuscitaire, the machines were making loud noises, he was ringing asking for help. The senior consultant came and tried to help. I left the unit for some air.

I came back and a couple were down with a midwife. She shouted at me "I can't let you in I don't know who you are, you will have to wait." I was a bit annoyed as she treated me for a week, but hey ho, I let it slide and waited. I knew. That family were being led in to say goodbye.

Eventually I was let in. I watched them put the shades down. A kind midwife who knew me well came and put her hand on my knee as I fed Joseph. "There's a baby next door who isn't going to make it".

I heard wails as the beeping stopped.

My heart stopped. In that moment I felt guilt, fear, sadness, and selfishness.

That day I found out that one baby was a twin, whose twin had died. Another baby was due to be admitted but was born still, and this one, born on the cusp who went to the other side.

I held Joseph tight.

I whispered to him "we have to do something, if we get through this I will do something".

And I try.

To do something.

Because every baby should be born. And every baby should live.

Every baby.

 

Sing My Song Mama a guestpost from Honeybee Mum

Thank you to my dear friend Honeybee mum for this post for the #GiveAHug linky




How do you hug a child when you're scared to touch them? How do you stop yourself when you fear they're drifting away from you? How do you control the ferocity of your aching mummy heart when you're clutching at the straws of your love for your baby, in the desperate hope that you can keep them beside you a while longer?

It turns out you do exactly the same as you do with your robust children. Exactly the same as when you sweep them laughing into your arms with delight and exuberrant glee, just for the joy of the moment. You get used to making sure you're not constricting wires and tugging at needles, oxygen mask and feed tubes. A kind of balletic mummy-sweep around her as you pull her to you and hold on tight.

'Sing my song mama' she whispers, if she can. 'You and me, we can ride on a star, if you stay with me girl, we can rule the world' I murmur, or sometimes 'I can be your hero baby, I can take away the pain', as if maybe I actually could.

So many, many hugs. I hug her with my whole body when I pull her to me, using my own strength to form the supports she needs, which her hospital bed can't provide. I twist blankets, towels and sheets, steal pillows from the laundry for the moments when I can't sit any longer, and hope she feels them hold her safely while I run to the bathroom or to grab a sandwhich, which inevitably I don't eat.

I love our family snuggles all bundled in together. We're a very cuddlesome family, me and my children. All three children are premmies. 26, 34 and 36 weeks. The little ones were lucky and stayed in incubators next to my bed. First hugs just a touch on their way to the resus table and the waiting paediatrician teams. Second hugs through the huge plastic hand-holes, like some weird science experiment. Then preciously, beautifully skin to skin, blue lit by their sun blankets, little hats from the hot cupboard snuggled down on their tiny heads.

Touch is essential to every human being. I know my three little premmies thrive on it. Hugs for all reasons and hugs for all seasons. Corny, but true.

Honeybee Mum

A Hug that Saves a Life

At Bliss we believe in hugs. We believe parents need to be supported and enable to provide hugs, kangaroo care. We believe babies benefit from physical contact with their care givers. We believe that these hugs help babies learn to regulate their temperature and breathing. We believe that hugs are healing. I personally believe these hugs can protect against some of the mental ravages of pre term birth.

Kangaroo care is a lovely thing to do. But did you know this. 450 000 babies in developing countries could be saved by the adoption of Kangaroo Care! That's nearly the population of Tasmania where I am from, that die every year because of a lack of awareness of Kangaroo care.

Please watch this about Kangaroo care in Malawi.

We all have a role to play in this. Charities like Little Big Souls are working in these countries and communities to teach these methods. Our pictures can help care providers to share the message. Our example is important. And this is why.

In these countries they baby wear, they kangaroo care, and we told them not to. We disempowered them and told them they needed modern medicine and incubators and hot cots. But we didn't provide enough. We didn't even provide communities with electricity and running water. We have failed.

So we can do this. We can empower women to realise the old ways are best, their instincts are right and they can save their babies.

Little Big Souls are one of the founding partners of the World Prematurity Network

Today on World Prematurity Day please support their work, and help them reach their communities and save babies lives.


Join me on this mission.



Wednesday, 13 November 2013

Purple Hair for Premmies

Last year for World Prematurity Day I did a 24 hour social  media marathon. This year I decided to do the same, and ask for sponsorship However it didn't seem enough, I decided I needed to do something outrageous. I am too fat to sky dive, it's the wrong time of year for running or swimming, what could I do. At Bliss ask staff in neonatal units to wear purple, why not go one step further! Dye my hair purple.

I decided to make a big commitment, I'd do it properly. So I am now blonde so the purple is vibrant.

There's a serious message behind my purple hair. You see, World Prematurity Day is important to me. I first got involved in 2010. The opportunity to talk and share about our premature babies was amazing. Now it's a true global event.

My amazing friend Chauntel a fellow Aussie refugee in Bury arranged the awesome Lei at Taylor Faith to do our hair at the last minute when my arrangements fell through.
 Having purple hair is confronting, a bit like having a premature baby. You are different. There are good things about having purple hair, but you do stand out, a bit like how I felt at baby group with my 5lb 4 month old baby. Having a premature baby, unlike purple hair, is not a choice, its something thrust upon you.

I am so grateful to Bliss for all the help they have given me, and to friends like Chauntel.

Thank you to all those who have sponsored me so far!

And a huge thank you to Lei at Taylor Faith 


 

Tuesday, 12 November 2013

Is Offering Financial Inducement to Breastfeed Wrong?

I don't know.

Like many I have heard this news today on the BBC and wondered. To be honest 5 years ago I would have shouted "wrong are you out of your minds?" I believe in breastfeeding. I didn't feed for longer than 10 weeks due to a complex set of reasons. I really believe in breastfeeding in lower socio economic households (well all households really). Less money on formula can mean more money for healthy foods. Breastfeeding protects against gut complaints and offers support for the baby's immune system. Also there's some evidence that babies in lower socio economic areas are moved on to solids too quickly as formula is expensive, and that formula is watered down to make it last longer. If successful feeding is established there are benefits for the baby and the mother too, and indeed potentially the whole family.

Several things have happened over that time to me that makes me think, maybe it's worth trying, offering inducements. Let me tell you a story.

It's 9pm. I am never on the neonatal unit this late but Joseph has been unsettled and rather than fret at home I decide to stay by his cotside. However its time for a blood draw so I leave the room, pop my breast milk in the fridge that I've just expressed and go and sit in the visitors room. There is a mother crying.

I sit next to her and introduce myself, mum of a 27 weeker who is now six weeks old. She looks at me, tears staining her cheeks. "They want me to do that too", she says. "What?" I ask. "You know...." the disgust clear on her face "express milk, breastfeed." I smile "how do you feel about that?".

She tells me its disgusting she has never seen anyone do it, everyone uses baby milk in her family. I ask her why the nurses think she should "I don't know" she asks. There's a Bliss breast feeding leaflet nearby. I tell her I've found this helpful. She says to me "I'm only 16 I um, can't read very well". I offer to go through it with her. Together we learn about how it will protect her premature baby's stomach, it will offer protection from infection, it will help her baby grow. She stops "oh so its not just rubbish then, it could really help her? I could do something to help her?" I smile again and say "yes your breast milk is made just for her, by you, you are her mum".

The nurses tell us they are done and we go back to our babies.

A few days later I see her, she is showing me a pot of liquid gold, breast milk. She's done it, she's given it a try. I am beaming inside. By the time we leave 4 weeks later her baby is taking its first feeds from her mum. This girl had a reason and she's done it. When I run into her in clinic 4 months later, she's still feeding and she tells all her friends what a good idea breastfeeding is. Mum to mum, she is making a difference.

I believe 100% in professional and peer support. I totally agree there is lack of investment and lack of initative in these schemes. I totally accept people who say this is throwing the wrong type of money at the problem.

But in many areas in the UK breastfeeding rates are so very low they are almost non existent. Like it or lump it something drastic needs to happen to get these women breastfeeding.

I welcome the trial in as much as it might give some answers whether these sort of financial inducements work. In other countries they offer financial inducements for vaccination. Iin this country we've done it for smoking cessation and weight loss.

I don't think, to be honest, if someone is dead against feeding £200 will make a blind bit of difference, and I suspect the long term outcome will be that this does not work and it does not go wider than the trial area, which is only 120 women.

But we are left with this. How do we give women from these areas the incentive to even try?

What can we do better?

Hugs I Have - and a linky

It's World Prematurity Day on Sunday and a lot of us are getting very excited! This year the theme is #GiveAHug. We can all give hugs and write about them. If you would like to join in blogging for World Prematurity Day all you have to do is write a post about hugs! We would love to put this link to Bliss in your posts, and on that page you can read more about how you can get involved with social media on World Prematurity Day.

Today I am delighted to host a post from my Twitter friend Alli, who has always given me a lot of support. Her post is so moving please read and comment.

We call hugs huggles in our house, a fusion of the words hugs and cuddle.

I love huggles with my four children, I love taking them into my arms and breathing in their scent and knowing for that split second absolutely nothing can come between us.  Weekend mornings are great fun trying to squash all 6 of us into the kingsize bed!

I adore huggles with my husband, I always feel safe and secure when he envelopes me in his arms & holds me close to his chest. My favourite place in the world is lying in my husband's arms in our bed having sleepy huggles.



Hugs I Had

There is a hug I miss more than anything in the world & that is a hug from my Mum, she died 11 years ago this month and yet I still yearn for a hug from her.  A hug from my Mum would make everything better or just make me feel so very loved. I loved the smell of my Mum; when I was younger I would pinch her nightdress; hug it in bed so that I felt like she was with me. If I could have one wish it would be to have just one more hug with her, to feel the love we shared for each other pass between us in this simple display of affection.

Hug I Haven't Had

There is a hug I've never had and I will always miss it. Six years ago this week my first nephew was born thirteen weeks early and lived for just nine days. I was lucky enough to spend five of those precious days with him, but I never did get to hug him or smoother him with the kisses I had ready for him, instead I just stroked his tiny fragile hand and willed him to live. Devastatingly this wasn't enough and nine days after his birth he took his final breath. I saw him on the morning of his funeral for the final time; I wanted to do nothing more than scoop him into my arms and hug him until he came back to life, but it wasn't to be.

Hugs are precious, more precious than diamonds, so make the most of them.

Saturday, 9 November 2013

The First Hug - Sort of

World Prematurity Day is November 17 just over a week ago. I am asking bloggers to share stories of hugs. Tomorrow I will put a linky on my blog so people can link up and share their stories, not necessarily of preterm birth, of hugs. Some guidance is here, if you would like more information please email me at notevenabagofsugar at gmail.com

I am telling my birth story as a series of hugs, here is the first one. 
 
Its Thursday morning, 10 am. I’ve been taken up to a 4 bed ward in the ante natal suite. They have
put me in the corner near the window and shut the curtains. I’m not sure why. I feel very separate.
It’s been a whirl wind this morning. I came to the delivery suite at 3am expecting to be told I was just
a bit anxious and stressed. A doctor has told me I have suspected severe onset pre eclampsia. I know
this isn’t a good thing. I am confused about what happens next.

I sit on the bed, wondering why I didn’t pack anything to read. I daren’t pay for the television as I
could be discharged and go home. Or I may not stay in this room, I might be moved somewhere else.
So I stare at the walls, at the curtains. I listen to what’s going on in the room. Someone being taken
down to theatre to have their baby, another lady demanding answers from nurses about what’s
happening to her. A decision is made to discharge. Now it’s just me and a teenager, with her mum. I
draw back the curtain a little and make small talk. They give me a magazine.

All of a sudden a new doctor comes in. A big man, with a kind face, and a midwife with him. He has
that horrible look doctors have; The Delivering Bad News look. He approaches me with a small smile
“hello Dr Kylie”. I look at him very confused. “I am not a doctor”. He smiles broader and says “Well,
nurse then, midwife, you are something clinical”. I explain that I’m not, I just work in a call centre. I
am still confused.

He looks at the midwife and says “she has no idea does she?” He explains that I am amazing, which
confuses me even more. He says I’ve recognised the early stages of severe early onset pre eclampsia
that are often missed. He says I have given him ample opportunity to save my life and my baby. He
has booked an emergency scan for 12 noon to check how the baby is doing. I am reassured that I can
feel lots of movement. I am confident the baby is fine.

He tells me I need to call my husband. Now. That he needs to be here for the scan. This scares me
somewhat.

He puts his arms around me in a hug. “Kylie you have severe early onset pre eclampsia. We are
delivering your baby, it’s going to be tomorrow at 9am unless the scan indicates differently.” I gulp
hard. And I let myself hug this man I’ve never met. I am frozen inside. I know I have to be stronger
now than I ever have before in my whole life. I need to dig deep and not be afraid.

My baby needs me now. As the consultant and midwife leave I hug my bump, still quite small, and I
imagine I am hugging my baby.

A hug seems a very long way away.

Friday, 1 November 2013

World Prematurity Month

The whole month of November is World Prematurity Month culminating in World Prematurity Day on November 17th. World Prematurity Day is important to me personally for many reasons. This year I am dyeing my hair purple. This seems trivial in a way, but I am making an important point. I am very conservative. I don't like drawing attention to my looks at all. My hair is plain brown and long. The thought of having purple hair and people staring at me makes me feel sick. I am having it bleached and dyed permanently purple, not just some rinse in rinse out job. You can sponsor me here

I am attending an important function, with purple hair. The thought of being amongst consultants, nurses and managers with purple hair really turns my stomach. But I'll do it. 

No one choses premature birth, no baby choses to be born prematurely. Like many people I didn't realise the full impact of premature birth, and I probably knew more than many, having been a carer for adults with cerebral palsy, born prematurely in the 1950's and 60's before corticosteroids, non invasive ventilation, surfactant and all the other things we take for granted.

But even now, premature birth has grave implications for babies and their families. You only need to read Premmediatations to realise that.

Every day I am grateful to the staff who worked on Joseph, and on me. I am so grateful that he has recovered from his pre term birth. We are blessed.

However, the story continues for thousands of parents in the UK and millions around the world. We still aren't very good at preventing pre term birth. In many countries they don't have access to corticosteroids, to incubators, to oxygen. Simple measures here that save lives and prevent many disabilites.

There is a lot of work to be done. And a lot of people around the world dedicated to making this happen.

Having Joseph prematurely has opened my eyes to many things, and this month I want to share some of those things, some of the issues, some of the organisations and people that are really working to make a difference to premature babies and families around the world.

Join us in raising awareness and celebrating our amazing children. 


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

MummyBarrow

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

Monday, 30 September 2013

Britmums Live and Paying it Forward

The first blogging network I ever heard of was Britmums. When I signed up I started to meet other bloggers, and started learning a lot too, very quickly. I loved getting to know fellow bloggers. In 2011 I attended Cybermummy, the forerunner to Britmums Live. After this my blogging really lifted, I met a lot of other bloggers, I learnt some key skills and my blog started to really grow.

In 2012 I attended the first Britmums Live and loved it so much, and enjoyed watching my blogging further grow and develop. I was thrilled to be part of the bloggers working with charity panel and met Camilla Batmangelidjh and chatted to her for ages which was a huge honour and an experience I will never forget.

Of course this year was incredible. I was part of the Blogging with Heart panel with Hayley from Downsside up, the incomparable Mammasaurus and the lovely Liska. It was an honour to be able to speak from the heart about what blogging has done for both me personally and the blogging community. And of course the highlight was reading Jimmy Savile is dead, a blog post that really did change my life.

I have spent a lot of time thinking about the experience and now I am closing this blog I wanted to pay it forward, some of the amazing experiences I have had. I have chosen two bloggers and have purchased their tickets to Britmums live.

The first is Single Mother Ahoy. I got to know this blogger through #pbloggers chat on a Sunday night. She was talking about Britmums Live and sponsorship. I decided that I would buy her ticket so she could concentrate on blogging and hopefully doing some charity blogging for Gingerbread.

Secondly I wanted to choose a dad blogger, so I chose Dad Who Blogs. I wanted blogs that had been around for a while, that had varied posts with a parenting focus but also weren't scared to discuss issues close to their heart. Both these bloggers haven't been to Britmums Live before. Coincidentally both these bloggers have had premature babies, but on the later end of the premmie spectrum.

I was going to stay anonymous but I felt I wanted to share these two blogs with you. I only hope both these bloggers get as much out of the Britmums Live experience as I have.

Just a reminder that the early bird rate ends at midnight.

Saturday, 28 September 2013

World Prematurity Day November 17th

Click here to sponsor me


World Prematurity Day has always been really important to me. I know there are seemingly days for everything but World Prematurity Day is one that really resonates with me. Not only is it a day to celebrate, its also a day where organisations from all over the world get together to talk about prematurity, about solutions, about treatments and about our precious babies.

This year like last year, I will be doing my 24 hour social media marathon, tweeting, sharing, chatting, blogging and getting the word out there about what's happening in the world of premature babies and the work Bliss are doing here in the UK, and supporting the partners around the world, all of us working together.

I've also decided to dye my hair purple. Purple is the offical colour for World Prematurity Day, I've always wanted to try something outlandish! I will have hospital visits all week from November 17th spreading the world about Bliss so it is quite a daring thing to do.

If you would like to join me in dyeing your hair purple, or painting your nails, or maybe having hair wraps or wearing a wig that would be great. Like me you can set up a fundraising page and get people to sponsor you. Make sure you get lots of photos to share on the day!

If you would like to sponsor me you can find the link here:-


Please stay tuned for more official Bliss activities, nationally and also around Manchester.



Friday, 27 September 2013

My Preemie App - Review

When Joseph was in hospital I didn't have a smart phone, it was 2009 and whilst of course there were smart phones around, I hadnt joined the revolution. I didn't know anything about apps. Now 4 years later I have had an android phone, and now an iPhone and iPad and apps are an every day feature of my life.

Several months ago Preemies Authors started following me on Twitter. I finally down loaded their app and had a play around with it. I wanted to share my thoughts. Now you can't adjust the year in the app, so it looks like Joseph was born this year!

The app is based on a book Preemies - the essential guide for parents of premature babies  written by Dana Wechsler Linden, Emma Trenti Paroli and Mia Wechsler Doron, M.D. Their story is amazing and I'd urge you to read through how this book came to be. I have a copy of this book lent to me by a fellow preemie parent and will review it another time.

Just a disclaimer that the book is American, and a lot of the content of the app in the guide section is written for a US based audience. This does in no way impede the functionality of the app and if you have a baby currently in hospital I wouldn't hesitate in recommending you spend the £2.99 to down load it.

 Here is the front screen, as you can see the design is beautiful. I love the kangaroo imagery and you can change the colours too. The main sections are a diary, a place to record weight, length and head circumference, a place to record any questions you have, and the memory box, which gives suggestions for momentos you might like to save.

The highlight of the app is the diary. You can create separate diaries for mum, dad and other family members. The diary has prompts where you can load photographs and record key moments. For me its ideal as you don't have to think. I couldn't keep a diary when Joseph was in NICU as I couldn't order my thoughts, something like this takes a few minutes and you are guided through it.

 The chart section is self explanatory, and a lovely momento to keep. Also handy for post discharge too, to check against the red book the health visitors use. Ours kept forgetting to adjust and the chart ended up looking like the Big Dipper at Blackpool Pleasure Beach!

The reminder section is another handy part of the app. Really good for jotting down those in the middle of the night "oh I must remember to ask x in the morning". 

 
The final section is the treasured momentos which is a checklist of things you might like to collect and put away for your baby.

I think the app is beautifully put together, visually its just gorgeous and very "nursery" like, not clinical at all. I personally think its ideal for a new parent because of its simplicity.

I have some other ideas of what I think an app could include, such as specifics on expressing, and charts for mum to fill out. A feeding chart would also be useful, particularly on discharge. This app is very much geared to the new baby and parents navigating their way. It's entirely baby focussed rather than hospital focussed and I think its beautiful. It was so easy to use and I highly recommend it.

I purchased this app, and all thoughts are my own. All images are screenshots and belong to My Preemie App

Thursday, 26 September 2013

Life and Death in the NICU

This is a reflective post, and some of the content is sad. Please don't read if you don't feel that its the right time for you. 



My thoughts this week are up and down, and I wanted to write them down and share them with you all. As most of you know my blogging, campaigning and volunteering lead me to a lovely job with Bliss UK's only dedicated special care baby charity. My job is lovely I get to find volunteers and place them in hospitals and in the community to give parents vital support, ultimately supporting the babies.

I still keep in touch with the broader premature baby community and was delighted to meet Beth who blogs as The Cotton Wife, an Australian mummy and amazing advocate for parents and their babies. I found this post of hers which I absolutely adore, Dear NICU Mum. I would encourage you to read it.

One thing I never do on this blog is share statistics of survival. I never have done and probably, seeing as I am finishing actively blogging soon, never will. There's a few reasons for this, one is that statistics are never fully reliable. Another is that in a sense statistics are meaningless. When I asked Joseph's paediatrician before he was born for numbers and chances she said to me this "the only thing that matters is whether your baby makes it, the numbers are not relevant so lets talk about what we know to be true, and that is that he is alive, he has had the steroids and we are ready, yes he is small, he has a long road ahead but let's stay positive".

When Joseph was born I spent a lot of time on the Bliss message boards. I met lots of different mums, and one of them was Nicky with her son Ethan born at 24 weeks. They had a long road, which had lots of bumps, bends and twists. You can read all about Ethan here. Sadly Ethan's battle with prematurity was a very long one, and he sadly passed away, not reaching his fourth birthday.

Recently I was at a meeting discussing a clinical trial and one of the things we had to do was look at a list of babies who had passed away. I was the only parent of a premature baby the rest were clinicans. "The number of babies is 19, which is much lower than predicted." The room seemed happy. To me I could picture every one. Their data was anonymous all I knew was their gestational age, the age they passed away, and the briefest of reasons. But to me each baby had a face, a mum, a dad and maybe siblings. For all that I know that of the 80 000 babies who are admitted into special care each year in the UK not all of them will come home, or start school, this still hurts. It hurts me that we can't all have the same outcome. And I feel guilty.

I love Bess' letter Dear NICU Mum but at the forefront of my mind today is that for some parents, perhaps even parents reading this now, this won't be true for them, their journey will have a different ending.

I have friends who have left the NICU with their hearts shattered into pieces. Or have left NICU for their hearts to be shattered later. I can listen, I can signpost, but I feel helpless.

In 2010 I attended Cybermummy the forerunner of Britmums. Whist I was standing around feeling lost the most beautiful woman came up to me, gentle with lovely curly hair, and a shy smile and introduced herself as Merry, both of us having been nominated for a MAD blog award in the Inspirational category. Merry lost her son Freddie, a term baby, in the NICU at 11 days old, the year after Joseph was born. She writes so beautifully and I would urge you to read this post on her blog A Patch of Puddles.  There is love and support there, but you have to know where to look.
 
How do we support these parents better? What do we say? What would our letter look like? Do I dare write one?






Monday, 23 September 2013

Mad Blog Awards - Most Outstanding Contribution



This video really says it all.

Watching this its quite sobering the company I am in . Bloggers I have aspired to, some I have helped, all of whom have helped me.

Being in this category for the MAD Blog Awards was amazing and such an honour.

But I knew I think we all knew who the Most Outstanding Contribution award would be given to.

Jennie.

Jennie has blogged her heart out. She has given us Matilda, her blog baby, from birth to her very sad death at just 9 months old. She blogged eloquently, beautifully, painfully.

Unbelievably she has had opposition, she has been hurt all over again, though nothing can compare to losing your baby, part of your heart.

Jennie has done more than that. She has brought a sometimes fragmented blogging community together, working together to help the Lullaby Trust so that mothers don't have to go through this heartbreaking trauma.

Everyone one of those bloggers nominated are outstanding. I can vouch for every one of them. We all have made an enormous and powerful contribution in our areas and beyond.

There are no losers, but there is one outstanding winner.

I love Jennie, I have known her before she was famous, when her twins her still in NICU I have seen her grow and develop as a mummy and a blogger.

I am immensely proud of what she has done. Of what love has done.

However I am proud of every single one of these outstanding bloggers, and I am so very thrilled to have been considered worthy enough to be there amongst them.


Sunday, 15 September 2013

Decisions

As most of you will know, since writing Jimmy Savile is Dead I have been on a journey, to come to terms with my childhood and, to put it bluntly, grow up. I have found the most amazing therapist who as helped me, and have had a team of friends who have also been there for me and guided me and hugged me and wiped away my tears.

Next month is the anniversary of "coming out" as it were, and next week will be my final therapy session. I still have seven remaining if I relapse and need them, but Dr F and I have decided that it looks like I have the tools I need now to continue to improve.

Which brings me to Not Even a Bag of Sugar. I was talking to him yesterday about this blog and everything I have done with it and achieved through it. Finally the confirmation came to me. It's time to think of winding up.

November 17 is World Prematurity Day, and will be third as a blogger. I will do a 24 hour marathon to raise awareness and funds for Bliss then I will call it a day on November 18th.

I am not a "premmie mum" anymore. And writing general parenting blog just isn't me. I am busy with work, and I've had another revelation, I don't enjoy myself anymore. My life is just work, Joseph and online stuff and I need to broaden my horizons again. I need to swim, walk, write, read, crochet, knit, watch movies, see people. And that all takes time.

I am working on migrating the content on Sugar to a website, or perhaps even migrating it to someone who has an existing service for parents of premature babies.

I love Not Even A Bag of Sugar, its been my therapist, my friend, my support. The friends I have made through it have been there for me through thick and thin.

I will still be blogging sporadically at Kykaree and who knows, maybe another blog awaits me somewhere.

It's time to say goodbye to that part of my life, to the sadness, the regret, the guilt that as much as I try to exorcise I still have. I need a bright new future. Working for Bliss is amazing and I love it so much, and its enough. I can give back through that and that's important to me.

Please follow my journey in the next two months and contact me to find out more about getting involved in World Prematurity Day.