Tag Archives: postneonatal death

melody and me

Nobody’s Army

There has been so much in the media about saving poorly children, the fight for their survival, the fight to do anything but have to bury them. I can’t imagine what these families have to go through; our daughter was only here for five weeks.

As I see the scores of angry messages, the protests, the army of people fighting for their very last rights. The media, social and otherwise are filled with these stories.

Makes me question… Did WE love our daughter enough? Did we fight or try hard enough?

We have always had questions surrounding her death – our baby had the best odds, death wasn’t in her plans, she WAS coming home, no brain damage, breathing without a ventilator, she burped, she even smiled; she had cuddles, she was fed via a tube simply because she was too tiny to have the sucking reflex, which she was fast learning.

She STILL died.

There was no time for an army, a brief message on Facebook asking for thoughts, no options of fighting when we arrived. Just the words “She won’t survive.”

I’ll always question and blame MYSELF about whether I did something wrong in my pregnancy, or had eaten something that may not have agrees with her expressed milk.

I don’t know if I loved her enough, it was hard to love someone through an incubator, did she know that we loved her?

Did we fight and beg hard enough that morning? Maybe I wasn’t strong enough to fight, I wanted to believe me, I needed them to tell me that it was just an April fool’s joke. I needed them to tell me they were wrong, but once those words had been said, like a dagger to the side, it killed me yet kept me alive at the same time. Why wasn’t I strong enough to fight for her? To keep her safe? She wasn’t meant to die.

When those fateful words of death came, the only thing I could think of doing was to hold her. To know that we loved her in her final minutes, it really was minutes, from the broken news to her final breath.

I just wish I’d held her longer, kissed her forehead. I wish I hadn’t taken our time together for granted, and took in her beauty, to remember her soft skin, the warmth of her breath, her fuzzy hair.

How were we supposed to say goodbye? We DID – DO love her. Always.

Wishes are all we have. Guarding the dreams that should have been. EVERYTHING should have been different.

melody and me

Dream Sequence

I met her in my dreams the other night; this is something which I have not done in a very long time.

As much as you’d imagine a dream to have a happier ending it didn’t, but it also wasn’t a nightmare either – at least not the ones I had come to known in the beginning. Death had still found her, but the dream brought me a second chance.

The Dream

A phone call came. I don’t like phone calls; no idea why I am just one of those who just isn’t keen. It was the hospital, a voice I recognised with a background of an echoed reception area –  I knew the sound well; behind the voice, I could hear the long beeps from machines, the long beep which used to tell us she was on too much oxygen – that sound seems to stay.

There had been a mistake, she had somehow been left behind at the hospital; forgotten maybe and that the funeral we thought we’d had for her was just an empty box. Nobody knew how or why it had happened; I was then asked whether we’d like to see her. It was hard to know what to decide; I guess even in my dream it had been years – but we agreed, surely they wouldn’t have offered if there was nothing to see.

When we arrived the people who stood before us seemed shocked; they began to explain that she was somehow perfectly preserved like no time had passed since she had. I wanted to see. The people parted ways to reveal a baby, laid in a cot – peaceful and unmoving. I looked at her Dad and he me; I had to pick her up. As I held her she seemed a little bigger than I had remembered, but it was her, the slight tape embellishments on her cheeks, her little nose much like her siblings, and her fine strawberry blonde hair that covered her head.

Never Let Go.

When she died, we didn’t know that we could have spent more time with her or that there were still more memories to make. I knew this dream would end, but I also knew I had to make the most of it, of her. We bathed her, not once putting her down, kissed her forehead – knowing that her temperature wasn’t right, only made me feel more determined to warm her with love and kisses. I was able to snuggle her in bed, which I never got to do. To sit and choose a coffin whilst holding her in my arms – morbid I know, but it is what is meant to be done when it is one of the last things to do for your baby, we never knew about the choice of tiny coffins. Everything was to happen quickly, I didn’t once put her down. the weight of her felt comfortable in my arm – I didn’t want to let her go again.

But I did. I was able to place her into her new pink coffin, placing her gently on to cotton sheet we had placed for her. It felt all so different.

I got to hold her longer and kiss her more, her eyes remained closed.

As my eyes opened.

 

 

Dreams.

I think I speak of her so much (when I can), during my awake time; that I guess I don’t need to be searching for her in my sleep too. My brain has become so accustomed to knowing that she isn’t with me, that I guess my sleeping mind doesn’t need to search for something my awake mind has gotten used to. I have never dreamed of her as a growing child, again maybe because my brain knows she has gone. I simply can’t imagine what she would have been like.

In the beginning, the nightmares came, mistakes before she died, the most obvious one about – were they 100% sure that she had died. Those dreams faded into nothing, they all stopped. I am glad in a way that I don’t have dreams about who she could have been. I’m as comfortable as I can be with not imagining that.

 

I don’t know why I suddenly had this dream after all this time; I know there is probably the message of regret and things we weren’t able to do with her. For that night, those fictional moments I was able to hold her again.

 

dreams

Then she was six.

Then She Was Six.

Today is her birthday, a day where I am meant to share little things about her – a before and after picture, a celebration of life and of growth. I thought about sharing her birth story to give more words; but it is one I have told so many times, people are bored. People expect me to have moved on, grief is boring it is ugly – nobody ever knows what to say – I am so open I guess that, I assume people are okay with me speaking her name; I mean I am. But they’re not, not really; especially as it is six years. But to me, each birthday, each day that leads to her birthday and then those days which lead to the anniversary – they feel like six weeks; to everyone else, six years is a bloody long time ago – for that I am painfully aware.

It is six years today since she was born in a rush; I remember every single minute – I try hard to savour it, just as I do my other children’s births. It is what we Mums do; her birth story should not be any different. But it is.

I probably should have moved on, and I have to some degree, of course I have it isn’t as dark as it used to be; but I am still allowed to feel like shit – not all the time (even if it were all the time that is okay too); the hardest thing to process, something I will never truly understand, is why our seemingly healthy baby died.  I’m allowed to feel pissed about that. About why our baby had the best odds, why being a girl meant she should have come home, why every bloody thing was just a little too late – she never got to come home.

I do wish sometimes that I could be understood; just a little about why I continue to talk, to mention her name, to be angry even all these years later. I guess it is that unimaginable, that it makes it easier for people looking in to move forward, to forget; to tire of the baby who never even came home who died years ago. “She should be over that.”

 

Everything about the 26th February should have been different; for so many reasons. Yet today no candles will be blown out, on the cake which we have all eaten that she will never get to taste; no presents to open or badges worn to school. An empty space in the classroom, yet nobody would even notice.

birthday

But we do, we know that there should have been a girl today turning 6.

If Only.

Her Birthdays

One

Two

Three

Four

Five

 

The Waiting Game

melody and me

Family Holiday Minus One

We always knew that anything we would ever do as a family, would be filled with bitter-sweet emotions that come with knowing that there is a tiny human missing; nothing will ever fill that gap, I guess that part we didn’t really expect, but there is and we cope with that permanent void.

I’m not really wanting to talk gaps, I’m wanting to share a little moment whilst on holiday, which had us all chuckling.

I’ve begun taking a collection of photos to use when I write for Still Standing and for this blog too, something for Melody but without using her photos all the time. Whilst I am “lucky” (definitely wanting a better word), to have so many of them, I worry about repeating them too frequently, especially with the two areas I write in. I don’t have aging photos, so I’ve a prop in the hope I can include her a little more.

We went camping in Oxfordshire, days out – making memories, what better way to begin this project than to start while on holiday.

This one in particular I had placed my prop, ‘M’ onto this rather pretty looking Wishing Well, I have spent many times wishing that things were different, I know nothing will change, wishing is all I have.

I took a step back to capture this frame, as I looked into my camera my youngest daughter – Melody’s sister runs into the shot, she grabs the ‘M’ and throws it straight into the Well, fortunately it wasn’t deep, there was a grate covering the bottom, all the children yelled baby’s name, the prop was retrieved but it made us all laugh, it got me thinking; imagining this prop was replaced with her (I don’t think this by the way, ‘M’ is not Melody, I know I don’t have to justify myself – but still).

I closed my eyes and everything was different.

I imagined this five year old strawberry blonde haired girl, sitting on the wall of the well waiting for her siblings to crowd around her for yet another photo opportunity, only for her little sister to push her in the well. She wouldn’t have been hurt, she’d have been embarrassed, and annoyed for a few minutes, would have shouted at her sister, then the laughing would have begun, the whole picture would have been different, five laughing children, no props just them. It would have been a moment that would have been brought up in conversation about our break away.

But of course, I am here Day Dreaming, it isn’t okay, it is what it is, a day dream. While there is no changing what has happened, and that Melody isn’t here; but I can share this moment of laughter that included all of my children, for the very first time in 5 years 4 months and 23 days I actually felt her with us, I felt like I had five children that day.

I always say I have five children, I have never shied away from having five but the truth in my head has always felt there to be just the four of them, which to anyone looking at us can see. It felt so wonderful, to feel her there with us, it has been something I thought would never come; it is strange trying to bond with someone who isn’t here, to bond with a child who never properly felt like ours in life or even in death over the years. Very difficult to explain fully, because even I can’t quite understand that part.

Not only was a new memory made but I finally feel like Melody’s Mummy.

 

Melody and Me.

xx

 

melody and me

It Is Okay To Cry

I don’t cry for Melody a lot these days; I certainly don’t when amongst people. I’m open about our loss, about my grief; but the tears for me I prefer they fall in private, more I think because often society gets frightened by tears, by emotion.

When tears particularly of sadness show, head tilts and the comments of worry.

“They’ve been crying again.”

“I’m sure they should be over all that now.”

“They’re obviously not coping.”

“They should get help.”

 

Crying is okay, sadness is okay. They’re both more than okay to happen.

There was a charity event in aid of two charities; one of course is very close to my heart, involving Melody, out of nowhere the day made me feel incredibly emotional, it was an overwhelming feeling on how well the day was going.

I never expected to begin crying, I never expected it to remain like a cloud hovering over me for the rest of the day. I hadn’t felt that way in such a long time.

I get a tap on my shoulder to tell me my son was also in tears. As I did my best to remove him from the eyes looking at him, at us his tears turn to sobs; I knew then they for him were a release. They were loud, and so perfectly natural.

My children also rarely cry over their sister, they speak of her always, but never with sadness. He just let go so much, I could see in his face it was such a relief for him. He loved his sister dearly, although together for such a short time they were close. He, along with his older sister and us we all hurt over the loss over this girl, a loss which is incredibly complex, and so terribly misunderstood.

Having these overwhelming bursts of emotion means nothing of being strong or of signs of weakness. But of just how consuming the loss of baby, a child can be. Grief can pull you under, making it incredibly hard to breathe; I now know it will pull me back to the questions, to the complete brain fog of wondering how the hell we got from this tiny cuddly baby, to doing things for her in memory of.

People have often said they’re always worried about bringing up the name, or a memory of a loved one; this is very much the case where baby loss is concerned, for fear of making them cry. We’ll never forget who we’ve lost.

But there is nothing to be feared in crying, there’s nothing to be feared in mentioning a name.

Crying is good, whilst the reasons can be the ugliest things in the world, watching pure sobs, as I did with my son at this event, as I held him tight to my chest, I found it can be the most beautiful and uplifting thing to see, the release is empowering.

Children are incredibly versatile, I know today for him is a far better day. For me it’ll take a few days to get my head around things, I find the strength of these emotions very draining. But I will be okay.

I always am.

baby loss awareness

I Tried To Keep Her Safe

Decisions

We chose to not have a Post Mortem right from the beginning, we felt she had been poked and prodded enough, particularly her final few hours; we wanted her to be left.

Do we regret this decision?

Sometimes, yes.

It was initially thought that a condition called Necrotizing Enterocolitis – N.E.C, had taken her from us, that being premature could have been a probable cause, so these reasons swayed us against having a PM. It wasn’t until meetings and then a Child Death Review months later we questioned.

Did we make the right decision?

August 2012

In August 2012, a group of health care professionals gathered together in a room, a room we weren’t allowed to go, all we knew was the date, which she would be discussed in great detail.  Some of these health care professionals had never met her; they had records of words and figures, a timeline of events but had never met her. Talking about her whole life, in a clinical way, she was down as a number.

Only she’s not really a number, she barely makes any statistics. Statistics for me are important, it gives her some kind of inclusion, even if it is something we didn’t want her to be a part of.

Back to the meeting, I remember we spent the day clock watching, wondering how she did; almost like an exam or something she needed to pass, we had no idea on what we were expecting, answers to help with closure I guess, although five years down the line I don’t think closure is really ever that easy, nothing about this would ever bolt shut.

An email arrived, the words gently filtered through, how they discussed her life, how they discussed her death. It took approximately two hours.

Processing

Less time we got to process the fact that she was going to die; less than the time it took for the infection to spread which killed her.

The infection which we learned was Sepsis swamped her body, her CRP was of a level that was far too high for even an adult to have coped with (or at least that was what we were told).

She’d had a couple of blips leading up to her death, she’d had these previously but she always, always recovered.

It was this that gave the factor, that had antibiotics been administered sooner, the outcome could have been so much better. Everything could have been so different.

Tiny things, which we’ll never know if it would have saved her life.

Something that made her death preventable.

Keeping her safe

We did –  I did everything I could to make her safe, I did all what the guidelines told me to, reported movement changes, reported changes in my own body. I rested when I was told; I remained in hospital when I was told.

I expressed milk, we visited, we spent time with her, we stayed away when we were asked, we did everything we were supposed to. We listened and got excited about the discharge date,

Yet somehow, five years from having my third child I am writing in memory of her.

Everything I did to make her safe just wasn’t enough. I’ve stopped beating myself up, and focusing the blame on me. But closure is harder to find. I’ll always search for the what ifs, I know it’ll never change anything, I am not hurting myself –  maybe I am, but I’m not hurting anyone else.

Changes

Her death meant changes to the Neonatal Eye Exam which made her poorly.

Her death meant that there should be more staff on, especially a lead nurse on in the PM shift.

Her death has meant looking into timescales around Sepsis and when to treat, to empower staff to contact other members of staff in shorter timescales.

I just wish it hadn’t been her to have made these changes.

I just hope she has been able to save at least one family from the heartache we are living with.

 

then you were two

Then She Was Two

Today is the day you should have been two.
The day you should be ripping paper almost eager to know what’s inside..
Today is the day you were meant to turn two.
The day you could have been stamping your feet,
while needing to wait to try your new ride.
Today is the day you would have been two.
The day to jump around in welly boots,
Play hide and seek and eat chocolate mousse.
Today is the day that you won’t be turning two.
Your missing laughter, the silence that replaces you.
Today is the day we’re left wishing that you were two.
Still wondering, still holding on to memories so tight.
This time two years ago you came rushing into the world,
you were our Rainbow Baby our light at the end of the tunnel.
Our little Miss fidgety pants.
Today we not lighting candles for you to blow out,
we’re lighting them as a memory.
Today we are giving you flowers,
instead of toys…I can’t imagine ever giving a two-year old flowers as a present,
they would be disappointed. So why are we left to do this?
Today we have to try to not cry,to try to focus that we were “lucky” to have had you for the 5 weeks we were blessed with.
It may well be two years sweetheart,
but this year is harder than the first.
Last year I could say “I met you last year”
Now I can’t even remember your smell,
how soft your hair was,
or imagine how tiny your little nose was.
 I don’t even know what colour eyes you would have had. Your baby sister’s eyes are hazel.
Time hasn’t healed, it’s only taken you further away.
I can wish as hard as I possibly could, yet it would never come true.
I hope that if heaven is real to you that you’re having a wonderful party with your friends, flying high.
We may have only had you for 35 days, but we do miss you.
Happy Birthday Darling
Love always
Today is the day you turn two.
Mummy and Daddy