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.