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Sepsis Stole Our Baby

Our daughter at 5 weeks old, who never left the hospital, contracted sepsis. A sepsis (which we were told is similar to Meningitis) swamped her tiny premature body.

Rewind 5 weeks.

Due to contracting HELLP syndrome in pregnancy, I was minutes from seizing so the the decision was made to have an emergency c-section at 26+6 weeks.
We had been told she had great odds of survival, 80% actually; even more so because she was a girl.
She was expected to be on a ventilator for at least 10 days.
Less than 24 hours later she no longer needed the ventilator, she switched to the Cpap machine. This, we were told she’d be on for a few weeks too. The next day she came off that too, switched to a Vaportherm machine, which gently gives oxygen, to ensure her lungs wouldn’t stick together.
She surprised everyone.

A Little Diva

She sailed through everything she was meant to.
Feisty little diva – knew exactly what she wanted; including pulling up to 8 feeding tubes out a day.
We even had a discharge date, a date to make plans as a family if five.
Five days before she died, she was out for a cuddle, we loved our cuddles, all her requirements would settle her, she’d be so relaxed. This particular day she had an apnoea whilst on me. She was whisked back into her incubator, feet were rubbed she came around.
We were told that babies often forget to breathe, and she was at that point due for another transfusion.
It was scary.
We visited again I mentioned she had slight odema in her arms, we were told this was normal, not to worry.

Cuddles

I was able to have a cuddle, only this time I was terrified of hurting her.
She was in need of some relaxation, time to recover from her transfusion. Premature babies need lots of rest, even after nappy changes and feeds.
3 days before she died we visited with a milk run, where we discovered she’d had a test – an eye test, we’d only heard about it through other parents on the ward, we didn’t know she’d be having one too.

They don’t like parents being present due to how invasive and distressing it is for the babies (although in hindsight, maybe a cuddle would help the distress), can often make babies unwell.

I only saw her in the incubator on that visit, she had really found it distressing she really needed rest. Her oxygen requirements were raised.
The following day she was still recovering, but she was able to have a feed. We were hoping for a better day. Her final full day, we visited, her O2 was still raised but she seemed to have perked right up. I was allowed a cuddle her brother saw her out of the incubator for the first time.
We left the hospital that day on a high, with plans for the next day for have a girlie day. My eldest daughter was going to get her first cuddle.

Everything Changed

Less than 24 hours later Melody was gone.
No girlie day, no warm cuddles.
She died.
Over night, the night in which we’d had a wonderful day with her, she was changing.
The O2 requirements increased, in turn she needed a ventilator to breathe for her.
Her heart was restarted 5 times.
Antibiotics sooner could have changed our outcome, something none of us will ever know.
With her CRP level at 110. The sepsis taking hold of her, there was nothing more that the doctors could do.
When we walked into the unit, with only a hint of what was to come (we thought she’d had either another apnoea or was going to be transferred), only to be told our five week old miniature Princess wasn’t going to survive.
We had to say goodbye.

Sepsis

It wasn’t something we were greatly aware of; that Sepsis and Meningitis could happen in a place where your child has never left.
We were surprised when we were told this. We knew that there was another baby poorly with suspected Meningitis on the ward, but we never knew just how common it is in the NICU.
Of course knowledge probably wouldn’t have helped her; we’re not doctors. But awareness that it can happen.
However you never get over the shock of having your seemingly healthy baby die.

NICU Parents

Never be afraid to mention changes. Although the nurses see them every day, as parents we’re the ones who learn every single inch of our babies, their bodies.

Ask questions. If you don’t understand then ask again, explain that you didn’t quite understand.
That baby is YOURS.
That part is hard, I found sometimes it felt like she wasn’t ours at times.

Make yourself aware. I never knew milk banks existed, or that I could get breast milk from other sources. I didn’t want her to have formula, it seemed harsh for her tiny tummy, but I couldn’t pump enough, quickly.

Learn about the procedures and tests, again ask. If you’re not happy get a second opinion. There are things we would have wanted and declined had we asked more.

I often wonder whether I did enough. Asked enough, spoke up for her.

Sepsis can happen in the hospital, in the NICU and can kill. It can destroy everything.
It stole our baby.

Rainbow Baby – An Interview

I’d never heard of the term Rainbow Baby until I was pregnant with one of my rainbows. I’d had three miscarriages in the past, plus two healthy children. It was when I fell pregnant after my third miscarriage did I learn of this term. I assumed, that the term meant everything would be fine and happy.

Then this particular rainbow died. After being born at almost 27 weeks, she did really well in hr first few weeks of life, but at five weeks old the baby who we had come to know as our rainbow baby – died. She changed our story.

 

When did you decide to try again?

We were actually planning another baby, whilst our daughter was still alive, only we thought we’d wait until she had come home for a while. Once she had died I was keen to try again as soon as possible, but at the same time I, we were terrified.

What was TTC like?

Luckily for us the TTC journey after our daughter was short, but was long enough to get the jealous pang in the pit of my stomach each time someone I knew fell pregnant. We were advised to wait six months for healing and for grieving, I knew from early on there’s be no healing for grief. We were lucky to have conceived just over three months after our daughter died.

Did you have any support TTC?

No, we didn’t tell anyone we even wanted another baby, let alone tell people we were trying again. We had many comments stating how we could always have another baby, we felt by telling people it would mean they could forget what we were going through. So no it was just us.

First Trimester

Positive pregnancy test.

How did you feel when you found out you were expecting?

Well, I only tested because I had gotten really frustrated by yet another pregnancy announcement, I felt I had spent a fortune on time and pregnancy tests, although it was a short time, I was also very impatient for it to begin. We had so many mixed emotions; although we were trying we were still surprised that it happened so quickly.

The feelings of guilt also came, that we had a new baby coming, yet our baby before hadn’t even had a headstone, or her six month birthday, it was incredibly surreal and frightening.

 

Did you tell anyone?

Professionals and a very few close friends and family. I wanted to get the right medication for me ASAP, get the care that I had been promised at an earlier meeting. My GP was reluctant to give the Aspirin, although it was in my notes, so I saw my consultant at six weeks – where I had my first scan.

 

How did you announce it?

We were terrified to tell anyone, we were scared that we would jinx the pregnancy. But due to health reasons, we announced via Facebook at around 14 weeks, with a simple Rainbow quote, it was nice to give people from a distance the news, after they had supported us through our devastating weeks.

 

What support did you have from professionals/friends/family?

We had some support initially, but it wasn’t until the next trimester that it increased; I had a second scan at 10 weeks, then at 13. This was all just the beginning. Family seemed to assume that we were all better now we had the new baby on its way.

 

Did you have any tests/scans?

Didn’t have any extra tests, just the usual booking in bloods, and I also had a PET one done, although that is a rare one to have in the first trimester, because of previous history, professionals wanted a baseline to work with should they have needed it at any time further along.

As I said I had scans at six weeks, ten weeks and thirteen weeks.

 

Were there any surprising milestones?

Not really at this stage, not for us. I guess seeing a new heartbeat after only so recently losing our daughter felt incredibly surreal.

 

 

2nd Trimester

How did you feel as you started to show?

Nervous, for me it was this trimester when things began to go wrong, I guess I ignored my bump somewhat, trying to concentrate on one day at a time.

 

Did you have any scans or appointments?

Yes I had them fortnightly to begin with starting from 15 weeks, but from twenty weeks I had weekly scans and appointments with the midwife, and fortnightly with the consultant right up until the end. I was very well looked after, but it was so much more than being a baby loss mum, I didn’t do pregnancy well either. Although my Midwife and Consultant were very kind and understanding with all the appointments I had – none of which I asked for, they were what the consultant had put in place. But other professionals I would come in to contact with like sonographers weren’t always that empathetic to my being there, and few times I’d come away in tears or disheartened. A lot of their issues were me having the weekly scans; it seemed to bother them somewhat.

Fetal Scan 19+3 weeks gestation.

Were you well physically?

Not massively, no. I had Hyperemesis Gravardium and SPD to contend with. It was often a struggle to make my appointments due to being so sick.

 

How did you feel emotionally?

This is closely linked with the previous question, aside from the scans and antenatal appointments, there were the need to have an IV every now and again, there were times where they wanted me to stay overnight, but I just couldn’t the whole ward, the area made me feel so much worse, the area in which she did was very close, and on quieter evenings if windows were slightly open, I could hear the faint beeps coming from there, they’re a massive trigger for me. Possibly because it isn’t something I come across in everyday life, it affects me more when I do hear them on the odd occasion. I was a wreck.

 

What Milestones did you pass?

The gestations in this trimester were the ones that I felt like were a massive mountain to climb before I had passed them. Week 23, because that was when I became ill, it was then later discovered this was the gestation that she had probably had stopped growing at. 26+6 was the biggest one in this trimester, because that was when she was born. I was a complete wreck leading up to these milestones, but became lighter I guess once they had passed, but it still didn’t make everything easier.

 

3rd Trimester

Did you have any additional appointments?

Aside from the normal ones, yes I continued throughout the rest of my pregnancy seeing the midwife regularly, the consultant weekly and additional in between CTG monitoring and IV drips.

Scans what did you plan for the labour and birth?

Scans I had a total of 22 throughout this pregnancy right up until about five days until my C-section date. It did help with my anxieties, it felt like I had my eye on the baby all the time, I couldn’t trust my body any more, I couldn’t trust anyone.

I had a planned section due to how many previous ones I’d had.

 

How did you feel about this?

Nervous, I had originally been offered to have the baby at 38 weeks, but I refused and said I would prefer 39, to give baby as much chance to avoid Special Care as we could. But as the dates neared we brought it back to 38 weeks and I am pleased we did. The main thing in my birth plan was to leave with a live baby, a sibling for my other children, and to leave as soon as I was able, there was no way I wanted to stay there longer than necessary.

Did you buy anything for the baby/prepare the nursery?

We didn’t have a nursery, no space, but we didn’t really give the baby a space either. I was too scared, we had brought a cot from eBay (new), but we never opened it until she had hit about six weeks old. We had very basic items, enough to cover what a baby would need. We soon learned that we were missing a fair bit, but we just couldn’t do it. There were times where I had filled a basket and then abandoned it, we kept putting it off, or double/triple checking before we bought anything. It certainly wasn’t relaxed or exciting.

Bungle, Zippy and George Plush. Rainbow Toys

How did you feel?

I loved shopping for baby things with my first two, and even the few bits we had brought for our daughter was still really exciting, getting prepared was fun, the imagining the new life that would wear the items or sleep in them.

But with the rainbow, the only things I could think about was making sure I kept a receipt. To not open packaging to ignore the things we had brought. It was a chore, a horrible chore. To remember exactly where I’d put the items and where they had come from. I needed to know we could return them should we need to. It was far from fun. It was never meant to be like that.

 

Was there any milestones?

Getting past the weeks in which the baby would need intervention or procedures should they were born at a certain time. Getting to 37 weeks to me didn’t mean full term, it meant a week until I could meet and take home our baby. There was a point at 34 weeks where they thought delivery would happen, but I was lucky that my consultant knew my history well and sent me home before anything was booked.

 

Labour and birth

Tell us about the labour and birth

I had an elective caesarean.

How did you feel?

Terrified, although our baby had lived but then died, I had lost my innocence, not all babies survive pregnancy, birth is so unpredictable, even when they listened to the baby just before the operation started, it was a long time between that CTG and the moment of first cry.

How long was it?

I of course didn’t labour, but the waiting around in the morning, was not something that we felt comfortable with. We were first on the list, but there was an emergency, luckily for us our consultant wanted us in and out as soon as possible too, so he went and helped with the couple before us. It felt like an age until we were called on to go in. The SPD made it a very slow shuffle to theatre.

 

What was birth like?

It was peaceful, well a lot more peaceful than our daughter’s birth. I couldn’t relax until the moment I saw her, until she was safely in our arms. She was born to Blame it on the Boogie by Jackson five and I was stitched back together to Love Train.

 

How did you feel meeting your Rainbow baby?

We felt relieved upon hearing that cry. Relief once she had been handed over to us. It was incredibly emotional, the need to hurry up and recover, to leave the theatre and hospital was overwhelming, I felt very impatient to begin our rainbow journey, I was worried that every minute we were there, there was a chance for her to be taken. We didn’t want that to happen.

Mum and Newborn baby

What were the early weeks like?

Not the dream I had set out for it to be. I assumed that I’d be ok; I would be healed in the way in which everyone said I would be with having a rainbow. Feeling like a complete wreck, everything was still terrifying. Nothing had changed except I had to rely on us to keep her alive and not a bunch of scans and appointments.

Any milestones?

Hitting five weeks old was our biggest milestone. I barely slept a wink the night before her fifth week, I was scared it would all change the next day, we’d had such a good day the day before our daughter died, it worried me that history would repeat itself.

Handing back the respiratory monitor too at six months felt like a huge milestone, although we didn’t use it a great deal it was a security blanket.

Breastfeeding? Bonding? Bringing baby home

Breastfeeding was a massive thing for me; it was something that was really important. Sometimes when our daughter was in NICU it felt as though decisions were would of our hands, particularly in regards to her feeding, she’d have a couple of top ups with different formula, and often I was made to feel inadequate in our feeding schedule.

I just felt that formula was too harsh; I didn’t want to do anything to make our new baby ill, so breastfeeding had to be a priority. She ended up losing a fair amount of weight, which we eventually realised that her birth weight may have been wrong. But there were a couple of times where health care professionals threatened us with a trip to the hospital; this certainly was something we didn’t want. But we pushed on and she was 100% breastfed until six months. It really helped our bond, I did struggle, because she reminded me of her sister, then she began doing things that her sister never got the chance to do. It wasn’t easy – far from it.

 

General what things helped?

 

We bed shared, I had already done this with my older children as part time measures, but with our new daughter, I felt I couldn’t let her out of my reach, out of my sight. I needed to be able to hear her breathe, and if there was anything to have taken her, that she would have known love 100% of the time.

It wasn’t easy.

I think being able to still speak about our daughter, to allow her to be included in conversation. We also didn’t allow visitors at the hospital. Time at home without visitors too, we had a slow and steady supply of visitors, we needed time to compose ourselves, to find ourselves as a family, who’d been through such a whirlwind of events, there were times we had no idea which way was up.

What things were hard?

The way our new baby looked like her sister, although not so much now, but every time I looked down at her I could see her sister. Telling people the number of children we had, I would stutter a lot, everything was so confusing. My head couldn’t get around having two pregnancies in thirteen months, yet one baby. It took a lot of getting used to.

What things didn’t help?

People’s words, expecting us to be better, and healed now there was a new baby. Actually I think it was worse, being a loss Mum has made me a lot more anxious at being a parent, because I now know that not even children are safe from dying. People expected us to move on. We were under the CONI scheme and I had a lovely health visitor, the best in fact. But her Boss told her at 18 months post death, we should be over the death. This is a health care professional, someone who is meant to support the most vulnerable, but could end up doing more harm than good. No bereaved parent should question how they grieve or the length they take. The loss of a baby, a child lasts a lifetime.

What would you have find helpful?

More empathetic health care professionals, to feel that you won’t get judged for crying the loss of your baby, actually people in general to be kinder towards parents who have lost a baby.

People expect us to forget, to never mention what we have gone through, but it is never that simple.

I wish someone had told me the truth about having a rainbow baby. I honestly thought that by having a rainbow baby it would make everything better. Reading other people’s views on how their rainbow made them better, that it would all be over, my expectations changed. That for me our daughter would never be that storm to pass over, to move away from. I desperately hoped the pain would go. Nobody told me I’d feel differently. I expected to be better.

 

picture of a little girl

Then..

I also went on to have another rainbow. We’d had a surprise positive pregnancy test, which resulted in miscarriage; and thought we would try once more, where we fell pregnant the next month. I once again developed HG, where it was incredibly tense and scary. Something I could never want to repeat.

My midwife was amazing during this pregnancy and saw me for home visits weekly due to being unable to leave the house a lot. I also had a different consultant who was lovely and supportive for the HG; but I did find it a lot harder to get through my concerns to people. With the severity of the HG it exacerbated my anxiety for bringing the baby home. I didn’t have as many scans, and my GP upon booking in (after asking for my aspirin and sickness medication); that he didn’t really deal with pregnant women; which was incredibly disheartening and left me with no confidence.

CTG monitoring

Hospital Trips

There were several trips to the hospital throughout this pregnancy; for sickness medication and IV fluids; my midwife would give me dip sticks at home to keep an eye on ketones; but upon phoning the wards I was told to suck a sweet. The biggest thing for me was at 24 weeks; I had upper bump pain, it was the only way I could describe it, it panicked me with my history; so I phoned the ward to be told that you don’t get pre-eclampsia before 28 week; you don’t get it twice; I could not be having upper bump pain, so I was unable to get seen.

Luckily on this occasion everything was okay. It then made me reluctant to want to phone in again, it just so happened that the HG was playing havoc on my body again. But I just felt the second rainbow people – health care professionals were even less sympathetic. I’m not sure why. Nothing had changed, I was still terrified that something awful would happen again.

The milestones remained the same.

I had my 5th and final caesarean, with a sterilisation at the same time.

Mum and newborn

Although I have been lucky enough to have four healthy children out of the five; losing our daughter will always be not just about losing her; but the level of anxiety that any pregnancy afterwards brings, has definitely put me off ever wanting more children; even if there was ever a chance to squeeze one more baby in.

I think it really doesn’t matter how any babies you go on to have after a loss; there will always be that huge sense of loss, of someone missing. No-one will ever replace or make up what we have lost.

Little girls sat on a headstone, belonging to their sister.

 

My rainbows aren’t ones which come after a storm, because our storm will never be over; they add colour and light. They give Melody a little acknowledgment. Babies after loss.

Melody and Me – The Switch.

The Switch

This last week I have made the decision to switch my family blog from normal blogging; to self hosting. As I was trying to make the final decision it dawned on me that I really needed to self host for Melody and Me too.

There is so much awareness her legacy is leaving behind, it only felt right that she had her own space, dropping any other words from the address. My relationship with grief is such a unique experience, I want to share it freely. I have some things planned in the form of books to follow on from A Mayflower’s Rainbow, which I am very looking forward to.

There is so much more I need to do; to bring the awareness of losing a baby so that it is no longer stigmatized, no longer the taboo that it is. These little children were meant to be our future, they were meant to take our legacy with them, not the other way around. So for me it felt really important to switch over, and teach the world about our little girl who only stayed for 35 days.

Learning

The switch has been a complete headache. I am sure there are still adjustments to be made…please point me in the right direction. I have learned so much within the switching process, that I can’t say how I ever managed before; it has certainly been an eye opener. There were many, many times I asked my husband, why the hell am I doing this? Is it really worth it?

I guess only time will tell.

Thank you so much for your patience with all the swapping around..writing service will resume soon.

 

 

Lots of Love

Julz

Melody’s Mummy

xx

Melody and me logo

(New Logo too).

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.

DSCF3473

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

 

Melody and Me.

xx

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Day Of Hope 2017

Day of Hope

Since 2012 I have always had a try at joining in with the Day of Hope project. A day of thought towards Melody, hope for the future of my grief. A peaceful and gentle way to acknowledge little lives lost.

I’m not religious, and I am most definitely not artistic or creative to be able to make such beautiful flags, but I have enjoyed joining in.

This year, as you can see I am late with my efforts, we were away but even in previous years I have at least attempted something for this healing project. But I felt distant towards it, may be even towards my grief.

 

Phases

I go through them every now and again, particularly as I’d felt very emotional last week. This fifth year has really knocked me on my arse; at this point, I am not even sure it’ll get better,  it isn’t constant, like the every day rawness or anything like it was in the beginning, but there is an obvious gap, that is making hurt just that little bit more.

I wasn’t going to join in with the project at all, in all fairness I wasn’t sure the project was even going ahead; so I guess in my head I had already made my mind up that I wouldn’t do it.  Then the event release came, which was good as I know it really does help many, many families, it’s certainly helped me.

I hadn’t given much thought into what I would do; I’d brought something to iron on and some fabric.

DSC_2139

I chucked it on my desk and forgot about it, lost the iron on patch and was left with this fabric, thought I am not going to do it this year, I don’t need to be doing this now, I am in a place where I am comfortable in my grieving skin.

But then the date remained in the back of my mind, we headed towards it, then passed through it, I had a sudden guilt, a feeling of something I had missed, something I needed to do.

I felt really bad for not doing this project, for Melody; it really hasn’t felt right not doing it as I have the previous years, this year has made me feel very torn. I guess I am so used to doing these little things for her, I just can’t bring myself to no not do them.

So this is my 2017 attempt at a prayer flag. Nothing greatly artistic, I used a blank canvas bag, wrote things which remind us of her.

 

Melody and Me

Melody – Remembering Our Daughter.

I love taking photographs; even more so since Melody died. We have few photos of her, but we do have them, but in her albums there are days missing. Days which I can’t piece together what she did, moments of her life missing, memories which have faded for me.

Photographs now are of great importance to me. I try to take them of my growing children as often as I can, but I always try to capture a moment in every day, albeit small or something huge.

I don’t want to miss a thing.

In the weeks which followed the death of our daughter, we began to find comfort in seeing her name. I have always struggled with signs from her, struggled with the thought that “she is all around us”. I have worked on this over the five years, it isn’t something that has really changed, and I don’t think it will.

So, I love seeing her name, it kind of began with our memory box which my online birth group friends brought for us; her name as clear as day on the front of the box, inside the box is a tiny cushion with her name on too, it gave her presence.

Various social media pages began offering personalised graphic pictures, where they put your baby’s name on a picture, so I began “collecting” these, different designs – some were themed like for Christmas or Easter, some just had a nice or meaningful background; each included Melody.  

I can’t quite remember which picture started it off, but I remember we visited a place in Devon the first summer we were without her, there’s a section named “Melody Close”, seeing her name felt like she had been included in our day out. 

From then we began writing her name in the sand. Every beach we visited we wrote her name, close friends began to follow suit, places we had never heard of or would dream of visiting. Having the imagination I have, it is almost like she is having her own adventures, traveling the world, going to places we’d never dream or afford of going.

By our first October, Melody was soon included in the Pregnancy and Infant Loss Awareness Wave of Light, her name placed by candles alongside many, many other babies’ names. I was a beautiful thing to know she was remembered in this event. The following summer I placed a status on my Facebook, asking if people would write her name in the sand at the beaches they visited, it was a way of giving her a footprint to walk in the sand; she never had the chance to feel sand between her toes, this would have been the only way.

Many pictures came through; it was touching to see the many places she was being remembered, for the moments her name was being written, she was being thought of. Sad as it is as time as moved forward, the moments of thought can lessen. As her second birthday approached, we didn’t know how we would ‘celebrate’, we found the second birthday harder than the first; from a friend’s idea from her daughter’s birthday the year before, we asked people to write her name, not just in the sand, but in any kind of way they could think of. There would be no cards, no party or her choosing a birthday cake. Our friends and family came up with the most wonderful designs and ideas – there were so many and no two were the same. It meant so much to see people had taken a moment out of their day to do a little something for her.

We are five years into this journey, and over the course of the years the photos don’t come as often. But the ones which arrive mean so much to us. We can’t physically make memories with her, but we can somehow make her memory last. When the days in which is feels all is fading her name appears, someone has taken the time to remember her.

We fill scrap books when we have time, rather than photo albums.

We have several which we love; the children are often the first to want to include her name in a place we were visiting.

She has been taken to Florida, Indiana, France, Cornwall, Australia, Scotland, and Devon to name a few.

She was remembered by a couple we have never met on their wedding day, this one landed a spot on our wall in our living room.

Here are just a few.

We named her after a character in the Doctor Who series, when she was born we knew we had picked the right name. 

We just didn’t know she would end up traveling on her own. 

I don’t want the only place her name is written is on her headstone. 

Her name should be surrounded the beauty she deserves. 

Why I don’t like to Visit

I must admit I have visited her on a weekly basis during the past few weeks, more because I would be walking passed the cemetery, so it wouldn’t have been right if I didn’t pop in to see her.
But generally, it isn’t a place I like to be.

Visiting

We go to visit around her birthday, her anniversary; we give her a carnival theme in September, which changes to Halloween and then Christmas.
We visited her a lot in the beginning, at the time it felt right, it felt like it was something we needed to do; like a guilty feeling for not spending time with our daughter. But as time moved on, the more difficult it became to visit; I’ve never found the spiritual side of this loss, I never felt that she was always around me… I’d completely lost her. To me she had literally moved from one box to another, only her new box was this ugly thing that is now buried 3ft underground.
I don’t like visiting her because I know where she is; I know and can imagine where she is lying. No amount of what people tell me, that she isn’t there, I know she is….I watched them lower her into the ground.

Ugly

It probably is a form of torture, imagining the totally ugly side of death, of her death. But there isn’t anything exactly beautiful about having a funeral, a burial for your child.
I used to feel guilty about so many things, about how I chose to repair myself; not visiting on a daily basis or talking to her for hours on end. She could once hear me, when I spoke to her she would respond to me, now – well you know.
I’d have nightmares in the beginning about her final resting place, awful horrible nightmares; most rarely appear now, I don’t think they will ever go away.

Good bye

When she was alive the word ‘Goodbye’, couldn’t get past my tongue, it was a word in my head that felt so powerful, that I felt scared to use it, every evening when we left the unit, or every tie during the day, I’d say “See you later.” Or “See you tomorrow.” Goodbye always seems so final, her time spent in the unit she was doing well, so I never really knew why I was so frightened to use it.
Then I had to say it, I had to say this final word, as she slipped away I had to say it, amongst the “I love you.” And “please don’t go”. Goodbye had to now roll off the tongue.
When I, we visit her at the cemetery, I now have to say it, I have to say goodbye to her, I have to walk away, to leave her there, to turn my back on her every single time.
It isn’t how it was meant to be, walking away each time, even now still hurts, she’s still dead, she still should have been here.

Love

Visiting her on the surface, it seems okay, I take photos of her flowers, of her new toys…I still like to buy her things. But the inside it kills me. This wasn’t supposed to be our life. But it is – she is where she is. I don’t have to visit her to show that I am her Mum. Doesn’t mean I love her any less, I just have to try and live every day for her, make each day count, even the ones where we have Pyjama days.

Inside Out.

I originally shared this post here a year ago. Working on this year’s Guest Post, I wondered what I had written for this annual project. I don’t think this feeling will ever differ…

Right Where I am 2016 


Inside Out. It’s a Disney film, about emotions from the emotions themselves.

Joy, Sadness, Anger, Fear and Disgust.
All important roles in how our moods take us. Most importantly how we cope with things that change our lives, and almost break us.
Having seen the film, several times over now, I can understand the feeling of losing one’s marbles.

My personality islands collapsed, the day she died. No warning, I couldn’t stop them. Lost, forever.

For me, 4 years into this journey, I can associate myself with all 5 of the emotions. Some less than others.

Disgust, I guess how some parents take their precious children for granted. I feel disgusted in myself sometimes. When I have days, where I’m not quite coping. I shout, I snap. I somewhat alienate myself.

Fear. It goes without saying, the fear of not only losing my other children, but my husband, my friends. Fear paralyses me at times. I have to control it. It can take over, but it isn’t allowed.

Anger. I don’t get that raw anger very often any more. Because we should have had a different outcome, the anger was eating me, tearing me apart bit by bit, as if the bigger picture of our daughter dying wasn’t enough, but the anger, drilling through my very being. Don’t get me wrong, I get angry, really bloody angry at the whole having a dead child, I’m allowed, but it’s far more contained. I’m lucky to have a husband who will let me release it, by talking, crying. It’s not often any more.

Joy and Sadness.
Together? In the head of a bereaved mum.
Maybe.
As above I said my personality islands collapsed, fell silently away, as she died in our arms. There were no controls, no brakes. It happened.
I’ve had to start again.
New hobbies, new train of thought, new friendship circles, and how I spent my time with those friends, family. The shape of our family changed.
I never expected joy to be part of my emotions again, ever.
But I refuse to have Melody be the little blue person.

This time of year, I find just as hard as the part of the year my brain associates her with.
September to May. There is always something attached to her, from a positive pregnancy test, to her birth, her anniversary, discharge date and due date. I no longer make a big deal over the smaller dates, I always will for her birthday and anniversary. But they’re all still related in some way.
So, when June arrives, it’s like a strange come down. Every thing I do gets touched by sadness, core memory after core memory affected by sadness.
It shouldn’t be. I’ve, we’ve been punished enough.
I do believe joy and sadness can coexist. There’s a balance.
But people have to remember everyone grieves differently.
If I want to ball my eyes out 4 years after my daughter dying. I will. I don’t need therapy or medicine.
But laughing doesn’t mean I’m over her either.
I’ve found a good balance, albeit right or wrong. It is right for me.

Right now. I’m missing Melody. That will never change.

She is my bundle of joy, cuddled in a blanket of sadness.



April Fools Day. Why We Still Grieve the Life We Lost.

Bliss.
Everything about the life we led was normal. My second marriage, had led us to our honeymoon baby, our first together, even our rainbow baby after our two miscarriages. It wasn’t an easy pregnancy, but this was nothing new, I didn’t “do” easy pregnancies, but my babies came home.
I passed the “magical” gestations, the 12 weeks, the 20 week scan. Once we hit 24 weeks I discovered this thing in which many pregnant women celebrate, a milestone to the name of Viability Day or “V” Day. I’d hit this, and passed it, once I had passed this, we were on the home straight..right?
It’ll never happen to me.
But it did.
Everything will be fine
When she was born she fought to the best she could, the best her little body could cope with. She defied what the doctors had warned us about.
Feisty, strong willed tiniest of beings, with a huge personality, who wanted to be in the 80% survival rate. She never spoke, we didn’t spend much time with her, but I knew she wanted to come home with us. She loved a cuddle, she loved her family’s voices, her brother and sister were her people.
She wanted to join us.
As I documented her progress, announced her discharge date, jumped for joy as she hit 2lb, celebrated as my milk had arrived to feed her.
Everyone, on a daily basis would tell us, she’d be fine, she’d be home in no time.
That their baby, or their friend’s neighbours’ baby was born with less odds, they were fine.
She was a girl, she had the better odds.
Everything went in her favour.
But the odds failed her.
She died.
I relaxed.
I had allowed myself to breathe a little.
To love this tiny little miracle, who had greeted us well before her due date.
Listened to people tell me they wouldn’t buy her gifts because they’d jinx her.
We watched as people turned their heads away in disgust at her early birth photos.
The bond hadn’t come in the theatre surrounded by a sea of blue people,it hadn’t really come whilst she was inside my womb.
There was always something different about the bond I had with her, whilst I was pregnant with her.
But as the reality had begun to sink in, that our micro premature baby would come home, it was then I allowed myself to love her.
To truly know she was mine.
This tiny little person, a whole 9 inches of her was – is ours.
I fell in love with her.
Through this clear plastic box, blanketed with wires, rather than Brahms Lullaby, there was a tune of beeps, and alarms that made Melody, her.
Made her real.
I allowed myself to get excited, for the future, a fresh start.
The longing to leave the NICU behind us.
This wasn’t how we wanted to leave the NICU.  
Dying wasn’t part of the plan.
Sepsis Stole Our Baby.
April 1st 2012
We walked into NICU, parents of a five week old premature baby, a feisty, full of character little (tiny) girl.
Left heartbroken, lost and confused.
We were (are) still her parents, only we left the hospital as bereaved parents.
It wasn’t supposed to be like that.
I slammed my breast pump and hard pumped milk into the bin, defeated with no idea what the hell to do next.
I cannot even begin to describe the true feelings that appeared that day.
When people use the cliché, “there are no words”.
There isn’t.
I’ve spoken about our loss so much, how I could describe it. But I can’t.
Not the cold harsh truth, because I can’t even make sense of it, of any of it.
I cannot put into words.
I think if I tried, it would only belittle it.
The extreme pain, the intense loss.
Everything should have been different.
It really should have been.
Sepsis, snatched her.
She had a chance, but it took her.
We lost her.
Aren’t you over that now? 
Why I Still Grieve The Loss of Our Daughter.
It has been long enough.
Why do you keep torturing yourself?
Why do you keep boring us?
Stop being so morbid?
You didn’t know her very long, 
hell you didn’t get to know her at all, it wasn’t as if she came home.
She’s our daughter.
I lost the opportunity to co-sleep.
To breast feed without a tube (she actually did try to latch on, but was too little).
No chance of tasting food.
She never got the chance to leave the hospital. 
Well of course she did, just not the way we wanted.
She did have the sun on her face a couple of times, but she never felt the breeze fluff her hair or brush her cheek.
We never got to hear her voice, or an attempt at a laugh.
I cannot remember if I told her I loved her, I did when she was dying.
But when we had the best times with her, I cannot remember.
I’ll never hear the words from her, or watch her face light up as I walk in to the room. Or watch as she raised her arms for a cuddle.
I’ll never know if she would have been a Mummy or a Daddy’s girl.
Her brain scans had come back clear, but we could never have known how clear until she reached a certain age.
We saw a smile, maybe even two.
I can’t remember if I kissed her nose, my favourite place to kiss her siblings.
She never heard the Gruffalo.
Her first steps were never taken, her first words never spoken.
An empty chair in the dinner hall at school.
The missing friends.
As I spend time with children her age, I’m no longer filled with pain, but wonder; wonder who she would have been.
I grieve the life, the future we have lost.
Gone.
I grieve the 5 week old baby, who should have turned into a toddler, and an infant, into a reception child.
I grieve because I cannot comprehend what has happened, why it happened to us. 
I’m allowed.
How has it been 1826 days, since I last held her, felt her breath, her warmth?
How has it been 1815 days since we last saw her and gave her a kiss good night?
I’m allowed to be in the dark, because losing a baby, a child who we had come to love isn’t fluff and rainbows, it is black.
Time doesn’t heal, and there isn’t a reason for everything.
I’m allowed to be happy, excited about life.
But I am also allowed to scream and cry, without question or the need to be offered medication.
There is no cure.
Be patient.
Be our friend.
Be kind.
It may be 5 years, it’ll be the same in 50.
She’ll always be our baby.
We’ll always be minus one.
I never wanted to say goodbye. 

What I have learned in Five Years

Five years in the scheme of things doesn’t seem a lot. 
A 5 year old human is still growing, learning and a long way to go before they’re ready to face the world as an individual. They’re so young.
A car which is 5 years old also has so much more going for it, more miles, more adventures. More places to be.
It just isn’t very long. 
But to me five years seems almost like a life time ago, far too long to remember everything about her. 
But if she’d still been here, she would have been almost ‘just’  five years old.
Since April 2012 I’ve learnt so many things, things I never would have imagined learning. 

1. I was told in the beginning I’d never be the same person again.  I didn’t want to believe it, she’d only been here 5 weeks how could she change me, us so much. 
But at the same time why wouldn’t it have all changed us.  You can’t expect anyone to grow a baby, a child love, bond, feed as you would any other baby, for the baby to then die.
To have to decide “what’s best” when removing a ventilator, to watch their life leave them, to organise an event that should only be set for the elderly,  a burial or a cremation for the child you bring into the world.  Tiny coffins and holes in the ground.
It isn’t not going to have lasting effect.  You can move forward to a degree, but you’re just not the same. 
I look at people differently, I have to pick conversations with people, so not to offend them, but mainly to not alienate myself. 
I have to pause when answering parenting questions like how many children I have.
I see the world differently. EVERYTHING changed. 
2. Time is not a healer.  It really isn’t. I’ve section scars that will never go, they will always be there.  We will always be minus one.  For me the further away the harder it seems,for me in particular this 5th year. So many missed milestones, never started school, or had birthday party invitations, not knowing what things she’d have liked, who her friends could have been.  Pictures made with love.  I’ll never be “better” because I wasn’t ill. Time has just added to the crap that goes with all of this. 
3. Grief Tourism exists. The rubber neckers.  The people who only want to know or speak to you due to their own personal nosiness. People who want the grief for themselves, it’s a bizarre thought I know, and I’ve seen it done for adults too,  but those who somehow want a piece of the action, which in turn the grieved ends up being the supporter.  Which isn’t right,it’s not how it should work. It isn’t a sightseeing trip. 
4. It is a complicated type of grief,as I have mentioned before, the grief I had for losing my Grandparents, losing my Dad is so different from the grief I have for Melody.  The first thing I can think of is I could breathe when they passed away, their deaths weren’t easy,  they were incredibly hard, I do think of them at birthdays and Christmas, but Melody’s death, is something, although I speak about so much is not something that is really easy to explain in perfect detail either.  We’ve lost a lot over the years, friends, relationships with family.  Not something you’d expect when you lose a baby, you’d have thought the opposite. But we have gained people too (which you’ll see in a moment).
There’s so many times when your brain wanders back to the time of life, of normality, there’s nothing to stop it, it is a nice time to remember; but then you get to the part where you think you could change things, but obviously you can’t your heart stops for a millisecond for a short moment you’re back to the beginning again.
Nobody truly understands, unless you have / are going through it.
As much awareness, with premature births,  causes people only listen so much.
It’s complicated.

5. Online Support is wonderful.  I’d met my husband online, but never imagined to meet lifelong friends via the Internet too.  Some were from Melody’s pregnancy, when I was suffering with HG unable to face the world, and people didn’t have patience with me either,  the friends behind the screen became my life line.  Together we went through so much, not just my own loss but others too,  then the pregnancies that came after.  When for me once again the HG took hold and they were there no matter what.  This included the women I’d met through bereavement forums too.  Without them I’d have no idea that what I felt was indeed normal, and actually I wasn’t alone in these thoughts.
I will always be grateful to these people,  I’ve met a couple of them, two are God parents to the littlest ones.
I never knew online people would become my people..

Five years is far too long to have last kissed her.
But not enough time to have healed.  Maybe not even forever.