BlopMamma: Making memories to last a lifetime

BlopMamma blogs about her life as a NICU nurse and mummy on her own blog 23 week socks. Her blogs have made an interesting addition to Loss Through the Looking Glass, looking at loss from a different perspective to that of the bereaved parent.

~~~~~

As neonatal nurses we deal with death on a regular basis. We don’t see it every day or even every week but it is something we are always aware of. Each and every time a baby dies our hushed voices, expressions of pain and words of sadness are completely real. We each deal with these deaths in our own way, taking some harder than others but being marked by them all the same.

I am someone who reacts to death with tears, unable to stop this very physical manifestation of grief from showing itself. At first glance it may seem as though this is a hugely unhelpful thing for me to be doing when parents need my support but I truly believe that my tears show them how much I care far more than any words ever could.

I know from my own experience that going into premature term labour is one of the most terrifying things that can happen. In the space of a few hours I went from being six months pregnant to having to face the very real possibility that Squidge might be born very sick and far too soon. As frightening as the whole experience was, had the doctors not been able to stop my labour the Northern One and I would have had some warning that things were likely to be bad and a little time to decide what we wanted to do. It wouldn’t have made things any easier for us but at least we would have had some time to try and prepare ourselves.

However, there are some babies whose parents have no warning, either because things go wrong at the very last minute or because they have already safely delivered their baby and tragedy strikes seemingly out of nowhere. The loss of each and every baby is a tragedy but it is the babies who die unexpectedly that, for me, cut the deepest.

The first time I ever cared for a baby on the last day of their far too short life came as a complete shock to me. I knew the little boy was very sick; so sick that he required my undivided attention for the entire shift but I didn’t realise that by the end of the day he would be gone. Just a few days ago he had been pink and healthy and full of life; feeding and growing and getting ready to go home with his parents to start their new life as a family.

Now he lay silent and still, tubes and wires snaking all over his little body, his skin grey and his eyes closed.

The only sounds came from the insistent beeps of the monitors and the click and hiss of the ventilator as it moved air in and out of his tiny lungs; breathing for him because he was too sick to be able to breathe for himself.

By early afternoon it became clear that no matter what we tried, nothing was working. Despite the tireless mechanical breaths of the ventilator we were unable to get enough oxygen into his bloodstream and the effects were beginning to show.

No longer was he just still, instead his little face had taken on an almost mask-like quality that was the truest sign that although we had fought hard, battling for his life with all the medications and technology available to us, we had still lost.

The parents had barely left his cot side, silently watching him as though they could fight the very thing that was taking him from them with sheer force of will alone. The spoke occasionally but otherwise they stayed quiet, as though they were afraid to ask any questions because deep down they knew what the answers would be.

But even the strongest will or the greatest love cannot hold death at bay and we have to tell the parents that there is nothing more we can do to save their little boy.

Mum bows her head and tries to choke back the sobs that threaten to engulf her.

Dad turns his back on us and marches out of the room, unable to stay and listen to us a moment longer. When he returns a few minutes later he is calmer and he and Mum ask to hold their baby for a little while. I tell them that they can hold him for as long as they need; that he is still their baby and that it is more important than ever that he knows they are there.

I sat beside the parents, camera in my hands, taking photograph after photograph of the little boy as they carefully hold him on a pillow. I am acutely, painfully aware that these are the last memories these parents will ever have of their son and that somehow I have been entrusted with making them.

The photographs that I take will be one of the few physical reminders that their little boy lived; photographs that will be stored in a box of precious keepsakes to be taken out when the grief becomes overwhelming and the images that they keep in their minds just aren’t enough.

In my mind I can see these broken, grieving parents opening their box of memories; taking out the items one by one and turning them over in their hands as they have done so many times before.

The little plastic name bands, inscribed with his name and date of birth, that circled his hands and feet. The biro letters are clear but the writing is slightly scribbled, as though someone wrote them in a hurry, not knowing how valuable those few words would become.

The stocking hat that was put on his head almost as soon as he was born that may yet still bear the faintest trace of his baby smell.

The knitted blanket that kept him warm during that last, bitter sweet cuddle.

I carry on taking photographs; of his little hands and feet, his face, zooming in so that he fills the camera frame. My hands shake so badly that I have to rest the camera on my knee so that I don’t blur these precious pictures of their last minutes together as a family.

The parents are adamant that they don’t want their baby to suffer and so they have already agreed with the consultant that she will remove the breathing tube when they tell her it’s time. Mum and Dad ask if I’ll stay with them until it’s over and I promise that I won’t leave their side for even a moment until they want me to go.

I put the camera down and help the consultant to gently remove the breathing tube, being so careful not to tug at the little boy’s skin or to distress him in any way. I talk to him softly, calling him sweetheart and telling him not to be scared; that his Mummy and Daddy are here with him and that they love him so very much.

The consultant waits quietly until Mum asks her if her baby has gone and she listens for his heartbeat with her stethoscope. His heart is still beating, slowly and faintly, waiting a few minutes more before quietly slipping away.

The tears that I’ve tried so hard to keep at bay start to run down my cheeks but they are silent and for this I am grateful. I try to discreetly wipe them away but they keep falling unbidden and there’s nothing I can do to stop them but at least I can keep the sobs inside until I am alone.

Somehow the end of the shift has arrived and as I step out of the room and into the corridor a noisy sob rises and escapes before I have time to choke it back. I quickly look around but no one else is there and so I manage to keep my emotions in check until I’m safely sat inside my car and I know no one can hear or see me as I cry.

After a few minutes my eyes are swollen and my head aches and I would have given almost anything to be home already. But I know it’s nothing compared to the pain those parents are feeling; whose arms are empty and whose baby boy now lives only in photographs.

BlopMamma: The Last Story

BlopMamma blogs about her life as a NICU nurse and mummy on her own blog 23 week socks. Her blogs have made an interesting addition to Loss Through the Looking Glass, looking at loss from a different perspective to that of the bereaved parent.

~~~~~

The  Northern One and I take it in turns most nights to read Squidge a bedtime story. For a little boy who’s only just one he has a huge number of books which are spilling out of his own special bookcase and onto our shelves where the grown up books live.

When he was really tiny, before I’d properly discovered how to play with him and entertain him I would spend hours reading to him. I’d kept books from my own childhood that I remembered my parents reading to me, taking them with me when I left home and each time I moved house so that one day I could read them to my own baby.

When Squidge was admitted to hospital as a tiny baby (both times) I remember running around the house packing overnight bags for us both and sobbing to the Northern One that I needed to pack a story book for him. In the early hours of the following morning I lay on the bed on the Children’s Ward, Squidge snuggled up on my chest, reading ‘Plop the Baby Barn Owl’ to him.

There is a book that, whenever Squidge pulls it out of his bookcase and brings it over for me to read, reminds me of another little boy and another mummy reading a story. Like Squidge, this little boy had almost black hair that all stood on end and big, dark eyes. There’s a photograph on my living room wall of Squidge at two days old and I can see the similarities in their appearance every time I look at it.

But unlike Squidge, this little boy was dying.

We had been batting to save him since the day he was born; weeks and weeks of ventilation, monitoring, medications, blood tests and surgery but in the last couple of days we’d been forced to accept that this was a fight that we could not win. We’d broken the news to the parents as gently as we could; telling them that if he showed no signs of improvement by the end of the week then the kindest thing to do would be to withdraw treatment and allow him to die.

One look at this little boy and it was heart breakingly clear incredibly sick little boy; obvious to his parents and to us that he didn’t have long left.

The fluid escaping from the little boy’s circulation; it’s vessels made porous by infection had caused him to swell, almost beyond recognition. His skin was tight and yellow and his ears swollen to four times their original size.

Almost since the day he’d arrived on the unit there had been a book in the storage compartment in the little boy’s incubator, maybe put there by his parents in the hope that one day he would be well enough for a story. But even after the parents had been told that there was nothing more we could do, the book remained in the drawer under the incubator. In the midst of all the struggle and grief it was clearly important to his parents to be able to read him his first story.

They could have sat beside his incubator, opening the portholes so that they could touch him and he could hear their voices but it’s not the same as being able to snuggle your little one on your lap and show them the pictures as you turn the pages.

I really wanted these parents to have this opportunity.

It took four nurses to safely get the little boy out of the incubator and onto a pillow resting on his mum’s lap without distressing or frightening him.

Disconnecting the ventilator and giving breaths manually while we lifted him out of the incubator. We had to be so careful not to dislodge his breathing tube; the main thing keeping him alive.

Untangling all the tubes and wires and securely fastening them to the pillow, making sure that he wasn’t lying on any of them which would damage his fragile skin and cause him pain.

Snuggling him under brightly coloured knitted blankets, making sure every part of him was tucked in so that he was warm and comfortable.

The whole process took about ten minutes but once we were confident that he was settled and that mum and dad were also happy and comfortable, the three nurses that helped me went back to their own patients and I stepped back to give mum, dad and their little boy some space.

From the other side of the room I kept an eye on the monitor, watching for any signs that the little boy was becoming distressed; staying within sight in case mum or dad needed me for anything. I didn’t want to intrude on their private family time but equally I didn’t want them to feel as though I’d abandoned them.

Out of the corner of my eye I could see mum open the book and start reading to her son, pausing every so often to gaze at his tiny face. I wasn’t close enough to hear what she was saying but I could hear her soft, murmuring tone and see her pointing to the pictures, describing rabbits and woodland and flowers.

Anyone who didn’t know them or who wasn’t close enough to see how desperately ill the little boy was could almost believe that she was just another mum reading a bedtime story to her baby before she settled him for the night, so absorbed was she in the book.

It was such a simple thing, being able to read your child a story; something many parents (myself included) take for granted but for these parents it was a memory that would need to last a lifetime. One of the most important parts of being a NICU nurse is ensuring that memories can be made whenever possible; remembering that for some parents there will be far too few moments like this for them to recall in the months and years to come.

They didn’t have much time together as a family, these parents and their son and the time that they did have together had been solely in a place of noise and bright lights; full of uncertainty, pain and loss. But as a unit we did everything we could to help them make the most of that time, facilitating cuddles whenever possible and helping them to feel like parents, including reading that very special first story to their little boy.

A few days later the little boy died, snuggled in his parents arms and I shed some tears when I realised that the precious first story his mum had read was also probably the last.

I still think about that family often; quietly keeping the memory of their son alive even though they’ll never know.

Remembering that little boy every time Squidge brings me that one book and remembering to be truly grateful that I have my little boy to snuggle in my arms and read to every night.

BlopMamma: A Letter to Bereaved Parents

BlopMamma blogs about her life as a NICU nurse and mummy on her own blog 23 week socks. Her blogs have made an interesting addition to Loss Through the Looking Glass, looking at loss from a different perspective to that of the bereaved parent.

~~~~~

I’m going to begin this letter with one of the most overused phrases of all time and tell you that I’m sorry because I really, truly am. I know all the apologies in the world can’t bring your baby back but it seems almost impossible to talk to someone about their bereavement without telling them how sorry you are.

I’m sorry for the fact that your beautiful baby died before they had even really lived.

I’m sorry that your arms ache for your baby and that your heart hurts from having been ripped to shreds.

I’m sorry that something so terrible and life altering has happened to you.

I’m sorry that there’s nothing I can do to take away even the smallest fraction of your pain.

Now that I’ve sat down to write this letter I’ve realised that I don’t really know what to say. I’m sure that’s what a lot people say to you before they look uncomfortable and you know that they’d rather do anything than get into this conversation with you.

I honestly don’t know which words to use to try and help you but I can listen to you for as long as you want me to. If you need to relive your baby’s birth, life and even death over and over again to keep their memory alive then I will listen. If you want to scream and cry and rage against the downright injustice or if all then I can be there with you. If you just want to sit in silence but just not be alone then I will quietly sit by your side for as long as you need me to.

I can try to understand.

No, not understand, that’s not even nearly the right word to use. I can’t possibly understand even the tiniest part or what you’re going through because I’ve never had to experience the soul rending grief which comes with the loss of a baby.

Loss also doesn’t seem like the right word because it’s not as if you went to the supermarket and left the baby in the trolley; something to be recovered at a later date if you just retrace your steps and think hard enough about where you left them.

I wish I had the ‘right’ words for you but I’ve yet to meet anyone who does.

Even as neonatal healthcare professionals we’re not really taught about the language of death and grief. The Northern One has had one lecture at medical school where they covered ‘breaking bad news’ and I’ve had no training at all. We just have to muddle along as best we can, learning through experience and any resources that we manage to access in our spare time.

I may not know what to say or which words to use but I can sit here beside you and I can listen to you for as long as you want to talk or even if you don’t want to talk at all. Just as I don’t have the words to try and help you, you may not have the words to express you grief and that’s OK. I’m not expecting anything of you at all, I just want to try and give you the space and support so that when you’re ready you can tell me what you need.

Remember that, it’s what you need and there is no right or wrong way to grieve. If you want to cry then do, as long and as loudly as it takes. If you feel as though you can’t or you don’t want to then that’s OK as well, just so long as it’s not anyone else’s opinions or expectations stopping you from grieving the way you want to.

I honestly don’t give a monkey’s what anyone else thinks you should be doing or expects you to do. Your grief may well make some people uncomfortable but that’s their problem, not yours. You have every right to scream your loss from the rooftops or to turn off your phone and stick a sign on your front door telling everyone to leave you be. It is your loss and your grief and no one has the right to try and dictate to you.

Friends and relatives may think that they’re trying to help by telling you that you’ve grieved long enough, that you need to move on or that ‘there’s still time to have another baby’ but there is no time limit for grief and no guarantee that you want to try for another child. It may be that these people are worried that you’ve put your life permanently on hold and so do try and listen to them, even if you don’t agree with what they’re saying.

If you can, try and stay in touch with your GP. If you feel that you need counselling or some other psychological input, if you do think you may want to try for another baby or if you want to try and find some answers as to why your baby died, they are the people best equipped to refer you to the services you need. If you don’t feel comfortable talking to your GP or as though they’re not listening to you then find another one and keep looking until you do find one that fits.

Finally, please do whatever feels right and whatever you need to tell that world that your baby lived; that they are loved and missed and that however short their life was, it did happen. No one has the right to make you feel that your baby isn’t important or that you shouldn’t talk about them, just because they died.

So cover the walls in photographs of them, celebrate their birthday, remember the day that they died; whatever it takes. It is likely that you will come across people who feel uncomfortable taking to you about your baby but, as upsetting as these time are you are still a parent. You loved and still love your baby with all your heart and no one can take that away from you.

There may come a day when you don’t feel the same need to let people know that your baby lived. You may as though you’re forgetting your baby or that you are somehow less sad that they died. But if that day does come, please don’t feel guilty. It doesn’t mean that you love your baby any less or miss them any less. It just means that time is changing how you experience grief; changing your pain from a hurt that can bring you to your knees into a an ache that, while permanent isn’t quite as sharp and gnawing.

But in the meantime, try and be kind to yourself, take all the time that you need, don’t beat yourself up for grieving the way that feels right to you and don’t try and meet anyone else’s expectations.

All my Love to you and your little one.

BlopMamma

BlopMamma: When NICU isn't fair

BlopMamma blogs about her life as a NICU nurse and mummy on her own blog 23 week socks. Her blogs have made an interesting addition to Loss Through the Looking Glass, looking at loss from a different perspective to that of the bereaved parent.

~~~~~

Working as a neonatal nurse means that my colleagues and I can’t escape from the stark reality that some babies are born sick and, despite our best efforts to save them some of them tragically die.

In order to carry on working in the job that we do without burning out or making ourselves completely miserable we have to accept that sometimes there is nothing we can do to save  a baby. As heartbreaking as it is to admit it, it’s a horrible fact of life and there’s no escaping from it, much as we wish it wasn’t true.

When we lose a baby we allow ourselves to grieve and we acknowledge that our grief does not make us weak but shows that we’re not made of stone. We all know that the day that we no longer grieve is the day that we no longer truly care.

So we shed our tears and we hold the parents and tell them how sorry we are. We go to funerals where there are tiny white coffins and we remember the babies that have died in our own private ways.

But ultimately we have to pick ourselves up and carry on or risk becoming completely bogged down and losing our way and we all know this.

But even with all our coping mechanisms, methods to relieve stress and off-loading to understanding partners and friends there will always be some cases that hit us hard and that we find difficult to deal with.

For me, the babies that I find the most upsetting to care for are the ones that we have no answers for. Not only do we not know how to save them but we don’t even understand why they became sick in the first place.

These are the babies who are born to mothers who had easy, straight forward pregnancies with no indication that anything was wrong with either mum or baby. They’re not born prematurely or show any other warning signs; in most cases we have no idea that anything is amiss until the baby is delivered and it quickly becomes apparent that something is dreadfully wrong.

These are the babies who break my heart.

I sit beside her, stroking her head and rubbing her little hand with my thumb.

I’m waiting for the doctor to set up the necessary equipment so that he can scan the little girls heart.

Her little face is grey and she’s clammy with sweat. The bedside monitor starts alarming and when I look over I can see her heart rate rising even though nothing has happened to upset her.

She’s so distressed that nothing seems to calm her and the only time that she settles is when she’s asleep.

I talk to her softly; telling her that I’m here and that I won’t let anything bad happen to her. I know that she doesn’t understand what I’m saying but I try to soothe her with the sound and tone of my voice.

I know that we’ve got some difficult decisions to make for this little girl and we need this scan to help us make the one that is best for her. The scan will show us how effectively her heart is functioning but we’re not expecting good news.

I also know that because she’s so distressed we’re going to need to try and finish the scan as quickly as possible but at the same time it’s going to be difficult to get an accurate scan of her heart.

I’ve wrapped her firmly in her blanket, partly to try and comfort her but also to stop her from waving her arms around and bashing the ultrasound probe, meaning that the scan would take even longer that it’s doing already.

Her little face is so swollen that her features are distorted and her eyes are almost permanently closed, such is the effort of trying to open them. On the rare occasion that she does open them she doesn’t seem to be able to focus and they dart about wildly, displaying her obvious distress.

She hardly resembles the newborn baby who arrived on the unit in the middle of the night a few weeks ago. If it hadn’t been for the lines and wires attached to her she would have been no different to any of the other full term babies born in the hospital that night; each beautiful and perfect in their own individual ways.

The doctor doing the scan is trying to be as quick and as gentle as possible but it’s not enough.

She struggles against me and I start singing to her softly; the same song over and over, not caring that the doctor is looking at me strangely if it helps to calm her down and willing to do anything to take away her pain.

The breathing tube in her airway prevents her from making any sort of sound but it’s obvious that she’s crying in fear and distress. I can feel the lump rising in my throat and the feeling I get of my nose threatening to start running just before I cry.

I don’t know how to help her.

I don’t know what to do.

I have to grit my teeth and bite my tongue to keep the illusion that I’m calm and in control when in reality I want to burst into tears at the downright injustice of it all. I know that life isn’t fair but this.

I can’t think of anything less fair than being lead to expect that you’ll have a healthy baby to hold in your arms, only to have them snatched away from you for reasons that no one can explain.

A few days later, despite trying everything that we could, the little girl died.

We never found out why she became so unwell and, as a unit we were heartbroken that we lost her.

Accepting the limitations of medicine and of our own knowledge is one of the most difficult things about about being a neonatal nurse and something that hasn’t really become any easier the longer I’ve been a nurse.

It’s never felt fair.

I don’t think it ever will.

BlopMamma: Little Star

This is the second of two posts that BlopMamma has kindly given permission for us to re-blog. We thought these would make an interesting addition to Loss Through the Looking Glass as they look at loss from the eyes of a NICU nurse. BlopMamma blogs about her life as a NICU nurse and mummy on her own blog 23 week socks.

~~~~~

This week I went to the funeral of a baby for the first time; one of the patients that I’d cared for on the last day of their short life.

I’d been to three funerals before; two as an adult which were my Grandad’s and the Northern One’s Grandma and one when I was at primary school. A boy in the year above me died and I took it very hard even though I didn’t really know him. I didn’t really understand that children could die. My mum and the school thought that maybe going to the funeral would help give me some closure so one of my mum’s friends who’s son was also going took me.

I remember her wrapping her arms around me in the church while I sobbed into her shoulder, unable to look at the white coffin that contained a boy only a few months older than me.

I still can’t hear ‘The Circle of Life’ without thinking about that day.

I needed to go to this funeral for the same reason, some sense of closure.

I was the nurse who was with him and his parents at the end.

I stood and witnessed his baptism.

I removed his breathing tube.

I listened to his broken mummy sing ‘Twinkle Twinkle’ to him as he quietly went to sleep for the last time.

I want to say goodbye.

One of the things I’m unsure about is what to wear. I don’t want to wear head to toe black, it just doesn’t seem quite right. In the end I settle on a dark floral dress and a black cardigan and tights; I know no one is really paying attention to what I’m wearing but I want to get it right.

The sun shines as I drive to the crematorium. I get delayed in traffic due to roadworks in one of the villages surrounding the town where I live.

The speaker on my phone is broken, something to do with the Northern One and a bottle of diet coke so that satnav app doesn’t talk to me and give me directions. Instead I have to keep glancing at the screen to make sure I’m still going the right way.

All normal, everyday things.

Except today is not a normal day.

Today is the day I witness the single most heartbreaking thing I’ve seen.

Dad walking up the centre aisle, carrying a tiny white coffin and mum walking beside him, her face flushed and swollen from the many tears she must have shed already.

They stand straight, looking ahead even though they must be bowed and crushed with the weight of their grief.

Their tears.

Their loss.

People burst into loud sobs as dad, carrying his small, precious, impossibly heavy burden walks to the front and puts the coffin down.

It’s so small.

No one should ever have to bury their child.

The service is beautiful with the celebrant reading mum and dad’s words about their little boy and his life. Once or twice her voice breaks and she has to pause to steady herself. She must have officiated dozens of funerals over many years but clearly she doesn’t see it just another working day.

‘Twinkle Twinkle’ is the last song played.’

I grit my teeth to try and maintain some self control.

Tears stream down my face as I remember the choked, halting voice of mum desperate for her little boy not to go.

To stay with her just a few more minutes.

A few seconds longer.

For the rest of her life.

The service ends before the crematorium curtains close around the tiny coffin.

That last goodbye is just for mum and dad.

Their final chance to say goodbye to the tiny boy who will leave such a huge, gaping hole in their lives and their hearts that no one will ever be able to fill.

A hole that fits his shape exactly.

We wait outside for them, each clutching a balloon ready to release in memory of their little boy. The rain rattles on the surface of the balloons, running down their swollen sides like tears.

We let them go and the wind whips them into the sky.

I watch until I can no longer see my balloon.

The rain soaks me through, leaving dark patches on my coat and my hair streaming with water.

It seems appropriate.

As I walk back to my car I spot a robin hopping about in the undergrowth at the side of the path. He doesn’t seem bothered by the rain and looks at me, with his head on one side before bouncing back into a bush.

I feel drained even though I haven’t done anything but sit and try to hold myself together.

I want to call the Northern One but I remember that my phone speaker is broken.

It pours with rain most of the way home but suddenly the rain stops and the sun comes out, shining brightly. The skies turn blue and the sun causes the rain drops on the grass and the trees of the verge to sparkle. The world looks fresh and new but it isn’t.

It’s still the same world filled with joy and sadness, where some children defy expectations and other lose their fight, where some parents take their children home and others have to bury them.

I look for a rainbow but I don’t see one.

When I get home Squidge is asleep. I go up to his room to stroke his hair and hear his sleepy little noises.

To reassure myself that he’s safe.

Squidge wakes up from his nap and starts shouting for me. I go into his room and he gives me a huge gummy grin, just showing his two teeth. I pick him up and hold him tightly, trying not to cry. He doesn’t understand and starts wriggling, wanting to go downstairs.

I sit him in his high chair, checking that there’s no bits of porridge I missed cleaning up at breakfast and give him his lunch. His waves his little arms about and kicks his legs at the sheer excitement of being given food, even though it happens three times a day seven days a week. He smears the orange veggie mush around his face, attempts to feed himself but ends up chewing the bowl and goes to town on a breadstick and half a satsuma.

All normal, everyday things.

Life goes on.

My life goes on as will the life of the parents.

It will go on because it has to.

Even though their grief seems insurmountable and the pain of their loss unbearable.

Their lives will be devoted to preserving the memory of their son.

To making sure that the world knows that he lived.

That he touched lives and changed them.

That he will live on in hearts other than their own.

Every time I sing to my own little boy.

~~~~~

You can read BlopMamma's first post here:

Twinkle Twinkle

BlopMamma: Twinkle Twinkle

This is the first of two posts that BlopMamma has kindly given permission for us to re-blog. We thought these would make an interesting addition to Loss Through the Looking Glass as they look at loss from the eyes of a NICU nurse. BlopMamma blogs about her life as a NICU nurse and mummy on her own blog 23 week socks.

~~~~~

Twinkle twinkle little star is one of Squidge’s favourite songs to have sung to him when he’s tired and trying to fall asleep.

I haven’t been able to sing it to him this week.

Every time I hear one of his toys play the tune or I hear the Northern One sing it to him all I can think of is the broken, desperate mummy singing to her dying son.

I hear her voice so full of love and grief that she can barely form the words of the song.

I hear the pain.

The loss

The plans for his life that will never now be realised.

She’s in a place where no one can help her or reach her.

It’s just her and her little boy.

She gasps and sobs that little tune over and over as she cradles her baby in her arms; desperate for him to understand that she is letting him go because he has reached the end of his fight and not because she wants to.

That she doesn’t love him any less for allowing him to give up his fragile hold on life.

She would do anything rather than let him go.

He has fought so hard but now he is tired, so very tired and his little body has reached it’s limit. We’ve tried everything that we can and given him the best chance possible but it’s just not enough.

We sat in the quiet room; me, the surgeon, the consultant, mum and dad and we tell them that there’s nothing more we can do to save their son.

Mum breaks down into inconsolable sobs.

Dad sits with dry eyes; he’s beyond tears.

The surgeon looks defeated, the consultant looks broken. I know he has children of his own.

I sit beside them after the doctors have left the room, having said that they’re sorry so many times. They understand the complete and utter futility of those words but they don’t have any others to offer.

There aren’t any.

There are no words to describe your feelings at the loss of a child.

I sit with mum and dad while they try and decide what to do next. They know what they need to do, they just don’t know how to do it.

I try to give them the information they need and the options available as gently as possible. I want them to know that we will help them with anything that they want to do for their little boy. I don’t want them to feel as though they’re being rushed or that  we’re trying to push them to make decisions. I tell them that they can take all the time they need.

I say that I understand that there can never been enough time.

Mum looks at me; her face red and swollen with crying and asks me how you say goodbye to your child.

There is no anger or blame in her voice, no sarcasm. She knows I don’t have the answer and yet she is willing me to say something, anything that will help her to decide what to do.

I quietly tell her that I just don’t know and she collapses onto my shoulder. I hold her close and stroke her hair in the same way that I would with Squidge if he was tired or had hurt himself.

As though I am her mum and she is my child.

In that moment I feel very old.

My tears escape and run down my cheeks although my voice is steady.

At nursing school they told us not to cry because the grief belonged to the families and not to us.

But we do grieve; we grieve for the loss of patients that we have grown to know and to care for, their families with whom we have shared the most difficult time of their lives, for their plans and their dreams that can no longer be.

A few hours later, after their son has been baptised the parents decide that they are ready.

No, they’re not ready but they’re as ready as they’ll ever be.

Dad has cuddled his little boy and now he’s snuggled in his mummy’s arms. He rests one of his hands on the side of his face and honestly looks comfortable and peaceful.

He still looks like a little boy.

A very sick, very tired little boy but still a little boy.

He is still connected to the ventilator and the morphine infusion but nothing else; we’ve stopped everything else so that there’s as little connected to him as possible. The morphine keeps him free of pain and the ventilator keeps him breathing and his heart beating until mum and dad have done everything that they need to do.

I kneel on the floor at mum’s side, the doctor sits on the floor in front of her and helps her to gently remove the sticky pads holding the breathing tube in place. I hold the tube so that it doesn’t slip.

I adjust my position and mum almost screams, thinking that I might remove the tube before she’s sung to her little boy.

The last thing she can do for him in his far too short life.

She starts singing and I slide the tube out of his airway and out of his mouth.

I have never removed a breathing tube before.

I try not to think about it, this isn’t about me.

She sings the words over and over; her voice thick and cracking but she doesn’t stop.

Tears run down her face and onto her jumper.

I cry too.

I need to be strong for these parents and their baby but I’m not made of stone.

My tears speak to them of my sadness at their loss far more than any words every could.

The little boy passes quickly and quietly, he only indication that he is gone is the silence of his heart when the doctor listens with her stethoscope to confirm that he is at peace.

Another tiny star shining brightly in the sky.

Twinkle twinkle little star.

Do you know how loved you are?

~~~~~

You can read BlopMamma's second post here:

Little Star

John: Package Melody

This blog post has been taken from the end of a novel John has written that uses his own experiences. His wife, Julz, also publishes on Loss Through the Looking Glass and her own blog Beinghumanish. You can read more of John's work on his own blog Shaven Wookiee.

“Away with you all, dammit!

Mother?

Milk me now please.”

You have no idea how hard it has been to write this. I’ve been putting it off, and putting it off, but now here I am, having finished the novel, and all the internal mumbo jumbo, and now I want, or rather need, to talk about Melody.

We’re coming up to her first birthday (February 26th), and I’ve been wanting to do something myself for her for a while now. This novel is that thing.

As I write this, my wife Julz is pregnant with Melody’s little sister, who was measuring at four pounds at her last growth scan, over four times the size of Melody when she was born. So far, she’s healthy and well looked after by the hospital, although my wife is suffering quite a bit! I hate seeing her like this, but as she keeps saying it’ll be worth it in the end.

So, where to begin?

The beginning, I suppose, would be a good place wouldn’t it?

Melody wasn’t my first child. I had a daughter, Sophie, that was stillborn, when I was a lot younger and a lot less wise. What happened was the reason (or rather what pushed me over the edge) I started drinking.

But that’s a whole other story.

Julie and I had had two miscarriages prior to Melody, Alex and Castiel, and she has two absolutely amazing children from a previous marriage, Leah and JJ. She’s now going to Majorettes every Friday, and he’s still obsessed with trains (just ask him which is his favourite Thomas train, you’ll probably regret the lengthy answer. (Lol, just kidding).

Melody was conceived out of love. I know it’s a cliché, but it’s true. She was conceived on our blessing night (stop sniggering at the back), a special day for so many reasons.

She was trouble from the beginning, with Julie getting Hyperemesis Gravidarum (which is NOTHING like morning sickness as the British press would have you believe). It became worse after a car crash a couple months in, and she started showing signs of early pre-eclampsia a couple of months later, leading to lots of trips to the hospital until near the end of February 2012 when she was admitted until the baby was born.

Up until this point, I was scared shitless. I’d already lost one daughter, and was terrified history was going to repeat itself.

We had a tour of the NICU on the Saturday afternoon, just a brief look at what Melody would be staying in for a little while, and explanation about the sort of care she would have.

That night, Julie’s symptoms got worse and she was taken overnight to the Labour Ward, and I was asked to stay with her, which is unheard of unless something’s about to happen.

The Sunday morning, the consultant told Julie she wasn’t allowed to let Melody out unless she had read ALL the Harry Potter books (she was reading Prisoner of Azkaban at the time). But not long after I popped out to have some breakfast, he took a look at her bloods, and three minutes later returned, telling us he was “booking a cot” for our daughter. Little did we know, Julie was actually dangerously close to fitting because of the pre-eclampsia.

I was told to put some scrubs on (thankfully there are no pictures of that disaster), and some surgical wellies and was shown to the operating room. As a side note, the scrub nurse that was assisting the operation was heavily pregnant and fainted during the procedure! What a great start.

I think I was sweating the entire way through, from the moment the consultant said he would book the cot to when I got home late that night.

I had a daughter. A living breathing daughter. I shit myself. Not literally, but figuratively. Well, okay, maybe a little did come out.

She was put on a ventilator for less than 24 hours, which is amazing given how premature she was, and Julie’s pre-eclampsia and hyperemesis buggered off almost immediately, leaving her with the excruciating caesarean to deal with.

Hated seeing her like that.

Wanted so badly to be a Jedi at that moment, and take her pain away. All I could do was help in and out of the shower, and try and keep her spirits up (which was hard considering certain selfish people couldn’t keep their mouths shut).

The following Sunday Melody had an apnoea scare; we had only popped out for lunch with my mum when we got a phone call to come back asap. They were worried about her SATs dropping, and even started talking about sending her up to Bristol!

Thankfully, though, she bounced back an hour or so after, and she was back to her fighting self. It really knocked us for six, but we managed to get into a routine, coming to the hospital, sleeping at my brother’s whilst he was in Australia (just wish he hadn’t destroyed his fridge before he left); taking the kids to school when they came back from their dad’s; doing the run to the hospital with the milk for her; calling late at night before bed to check up on her.

We had lots of firsts (for me, anyway, Julie’s still managed not to ever do a baby’s very first yummy poop), changing nappies, doing bed baths, changing clothes and sheets, feeding her, and meeting other parents at the NICU with us.

I had just started my blog up not long before, and decided to do a random couple of blogs. Here was the first, Adventures in Poop:

So...

Melody’s now over three weeks old, and we’ve got involved in her cares and whatnot, and I’ve helped (at least a little) with expressing breast milk. We have had a wonderful team of nurses looking after Melody at Musgrove’s Special Care Baby Unit, and I can’t fault them at all. They’ve had us doing her ‘cares’ as I mentioned before; basically, we clean her, head to toe, use cotton bud sticks to clean her mouth and change her nappy! Therein lies the core of this particular post.

Poop.

Pooh.

Excrement.

περίττωμα (Greek).

excrementos (Spanish).

excrément (French).

Baw (Welsh).

pah (German).

Shit.

Either way, there’s lots of it coming from my tiny little daughter’s backside, it’s yellow, and it stinks! Yes, I know it’s supposed to stink, but it’s a bit of a shock when it comes from a person that weighs less than a bag of sugar, okay? When she was born, I had visions of holding her up to the sky and announcing her birth to the world, like at the end of Peacekeeper Wars.

Romantic, right?

Yeah, well, my experience has been somewhat different.

Yeah I know. But I do not begrudge a second. What? Why are you laughing? I don’t! According to the nurse, it’s to help us bond with her, and take the load (pun intended) off the nurses looking after her. I’m not really sure why they keep laughing at me when I say I’ll do her nappy. Is it a man thing?

My wife sat down behind me with a hand pump to express breast milk, and there was a smirk on her face.

This wasn’t the first time I’ve done her nappy, or an all-over bed bath, but what I didn’t know was that my ever-loving wife had already been informed by the nurses (who had sneakily taken a peak at the state of Melody beforehand) that she had a full nappy.

Thus began the Battle of the Poop.

So I opened up her nappy, and all the machines started pinging in random order. I swear it sounded like lasfire. There was some sort of work going on around the corner, one of the workmen using a large hammer that sounded like artillery. So now I’m in the middle of a warzone, and the nurse turns to me and says, “Get into it then,” like some cigar-chomping sergeant.

I felt like I had been handed a rifle and told to storm the enemy position.

I got the old nappy off, full to the brim with yellow alien goop, and was about to put the next one on when she decided to poop on her nice clean towel-bed-thing. I got the next one under her bum and she kept going. Dammit. I looked up and Special Care was gone, replaced by a grassy, muddy warzone. The ping of lasfire ricocheting around me filled my ears and every now and then the artillery would slam through the air and I’d instinctively duck my head.

Then my wife chuckled, and something hit the back of my leg.

I turned to find my wife holding herself and spraying milk on me.

The nurse, chomping on a cigar, said, “Looks like you’re getting flanked!”

Don’t tell me that! Get in a foxhole and help me dammit!

Melody started wriggling and fidgeting, the second clean nappy wasn’t going on properly. Now one of the other babies was crying and the medics were attending to her.

“Jesus,” I thought, “How the hell am I supposed to do this? I’m just a rookie!”

“You’re doing fine, son,” the sergeant-nurse bellowed over the noise, “just dig in and fight on.”

So I did.

The second clean nappy went on, got wrapped. The pings and hammering went on, the warzone going on around me. I had to wipe the sweat from my forehead and shout, “Will someone call in a fuckin’ airstrike or something?”

Then I remembered I was still in Special Care.

Oops.

Melody looked at me curiously, my wife was trying not to smirk, and I swear every now and then the nurse in question occasionally has a half- chewed cigar in her mouth even now.

So I’m mad, right?

What? Why are you all looking at me like that?

*        *        *

Yes, I’m quite mad, as it turns out. But I loved every minute of it despite my hands shaking, and feeling nervous the entire way through.

We managed to get cuddles outside of her incubator, and Julie got kangaroo care (skin-to- skin). Even Leah and JJ got to hold her hand, complete with hundreds of photos.

Her last week was one of extremes.

She had bloods taken (my wife called her a vampire, the big bully), and had another apnoea episode whilst she was being cuddled, going blue and scaring the living crap out of the both of us. And then the day after, she was bouncing around, and actually starting to hold her head and trying to turn herself over, even going so far as to actually start raising herself up a little on her knees. Because of that, I wrote the second blog entry:

Okay, so it’s been a week since the last blog, which has raised a few eyebrows, and raised a few questions:

“Was changing Melody’s nappy that bad?”

“What were you smoking when you wrote that blog?”

“Who the feth are you?”

and

“No, seriously, who the fething hell are you?”

Stuff like that.

Anyways, it’s been over a week since the infamous Battle of the Poop. So, yesterday the nurses had me doing the same thing, full cares, with my wife expressing behind me. I swear since last week the nurses have all started chomping cigars just to shit me up! So, my hands shaking like a blancmange in an earthquake, I dove in. The day before, she had had a blood transfusion, which naturally meant that that day was the day she was epically hyper.

I managed to get through the bed bath easily enough.

And then onto the nappy. I took the dirty one off, wiped her, and she pooped again. Got the second one on, and she pooped loads, all yellow and radioactive.

And thus began the latest episode madness.

I turned my head because my wife had chuckled at the sheer amount of poop. When I looked back, she had gone. There was a rustling sound and I looked at the top of the incubator to see her on all fours UPSIDE DOWN and wearing a Spider-man costume (although somehow she was wearing a nappy at the same time that I hadn’t put on her).

“Uh-oh,” I said.

She nodded at me and then extended her arm out, putting the two middle fingers into her palm.

FWIP.

Spider stuff hit me in the face, and she was swinging away, and out of the incubator, slinging strings of web across the big room.

“Come back dammit,” I shouted. Spider-Melody stopped and turned, and put her hand out again.

FWIP.

I fell back against the incubator, trying to scrape the web off my face. When I did, Special Care had been replaced by a New York skyline.

FWIP FWIP.

The web was slinging all around me as the nurses (curiously dressed in full NYPD uniforms) tried to grab Spider-Melody as she swung around the room. I looked down and realised I too was wearing a Captain’s uniform of New York’s Finest.

“Get after her dammit,” I shouted. “She’s making us look like idiots.”

The nurses all looked at me like I was mad, and I realised Melody (not Spider-Melody) was still in her incubator and looking at me with a little mischief in her tiny eyes. My wife was shaking her head.

“What?”

I swear, though, whenever the nurses change her bedding, I can see a little bright red and blue outfit under the sheets…

*        *        *

Yes, I have an overactive imagination. Have you read my books for crying out loud? This event took place on the same day the paediatric doctors told us our going home date, when we would be able to finally take her home and leave the NICU behind, at least temporarily. It would have been another six weeks, but they were certain, even excited about it.

And so were we.

But then the Thursday, she had the ROP test, where they test babies’ eyes for Retinopathy, basically holding the eyes open and looking into their retinas. The experience isn’t pleasant, to the point where they don’t tell the parents for fear of them watching.

In fact, we discovered that many babies, including several that were in at the same time as Melody, suffer as a result of the test, to the point where the staff are actually worried it might be meningitis. That’s how bad it is! And yet, it happens all over the country, and they know what it does, but dismiss it as the cause of any problems!

Unfortunately, Melody was one of the babies that suffered. Her SATs dropped to the point where they were talking about putting her back on the ventilator to help her breathe.

But she came through it. Sort of.

On the Saturday, we took JJ in to see her as Leah was at a friend’s birthday party; she was back to her normal self, except her SATs kept dropping. But we made plans for Julie and Leah to come in the next day to change nappies and feed her and clean her.

The Saturday night, we phoned up as normal, and were told she was struggling a little, and they were waiting for a doctor. They told us that the doctor wouldn’t be able to see her for three or four more hours (and we don’t know how long they were waiting before we phoned). Her SATs had dropped again, this time really low, and they were once again talking about a ventilator and antibiotics… but they had to wait for the doctor.

We phoned up early in the morning on April 1st (we didn’t get much sleep), and it wasn’t encouraging. Although they didn’t say anything was particularly, we decided to go over anyway, and dropped the kids off at their dad’s. Just as we were about to leave there, the NICU phoned and told us to get over IMMEDIATELY.

Needless to say, Julie drove at 90mph-plus to the hospital.

When we got into the NICU, they had banned anyone else from going in, and put up dividers around her cot.

We knew something was wrong when Melody’s paediatrician came over to us, and the staff were all red-faced and had puffy eyes. They’d all been crying.

The doctor explained to us what had happened in the night, what they had done to keep her going.

For me, history repeated itself.

“She’s not expected to survive.”

Our world came crashing down around us. She had been fine only days before. Julie almost shouted the word, “Why?” Neither of us could understand. I don’t think it really hit either of us until later.

We were shown to Melody’s cot where one of the nurses was keeping her heart going manually with her own hands.

We were sat down, and Melody was taken off the life support and put into our arms.

And for a second time in my life, I watched my daughter die in my arms.

I… I can’t explain what it feels like.

I don’t really want to either, to be honest.

It’s painful, and it still hurts to even think a little about it.

I’ve lost a lot over the years: friends mostly, and some of them not particularly peacefully. I’ve seen people die, and I’ve been physically hurt myself. I know, more than most, what pain is.

Losing a child, you can’t describe it, not properly.

We managed to gather the strength to get our parents and a couple others to come and say goodbye to her before she was taken to the morgue. We refused a post-mortem.

The next morning I was sick everywhere in the bathroom. I hadn’t slept well, and I’d got up early, gone into the bathroom, and just spewed. I think it’s called delayed shock.

For the rest of that day, I was spaced out, couldn’t think, couldn’t do anything. I was sure Julie might slap me. Or leave me.

We had to go and see the hospital chaplain (who I wanted to punch for being so condescending), and register Melody’s death at the registry office (the woman we spoke to actually said to us that there’s always next time).

We discovered that she had been IUGR, which we hadn’t been informed of; we only found out because it was on her death certificate.

We got loads of sympathy cards and hundreds of messages on Facebook and Twitter. My mum insisted on coming back and making us lots of cups of tea, and she did it again on Melody’s Angel Day (we refused to call it a funeral).

We were told at the time that she had had something called NEC (Necrotizing EnteroColitis), although this was revised to an “infection similar to meningitis” after the Somerset Child Death Review panel.

I’m not going to go into how we were treated by certain people, despite the fact that I still want to deck them even now for how they’ve treated us (and still treat us). And I’m not going to go into how Melody should have survived, and why she didn’t.

As we approach Melody’s birthday, we’re both scared of looking in the memory box that Julie’s online friends put together to send to us. We’ve only looked in there once, and that was her Angel Day.

She’s our Angel baby, and our soon-to-be-born daughter is our Rainbow baby.

There’s a ray of light at the end of the rainstorm.

*        *        *

With this novel, I wanted to bring some sort of understanding towards grief and specifically grieving parents. There is a message to it, but I’m not going to start getting philosophical.

Besides, you may not get the same message as I had intended. But that’s the beauty of novels, isn’t it?

With this novel, I’m going to be giving any money I make from it (not just profit) to charity, specifically the Musgrove Park Hospital NICU’s Just Giving, hopefully towards their counselling team.