Category Archives: Baby loss

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.

A Line of school shoes, with an obvious gap.

A Missing Future, An Empty Shoe Box

Back to school

As the whole nation prepares for the return to school, including myself. There remains the large hole of a missing child.

Helping Melody’s little sister get ready for her new adventures in big school; the preparation of shoes, and uniform; making sure book bags and P.E bags are ready.

Missing

When we missed reception in 2016, I thought it would have been one of the last big milestones. But it isn’t, not really. It is never going to be about losing “just” a baby. You lose not only yourself, but a future, dreams. There’s a personality missing, a child whose name will never get called in a register, a child who is never spoke of by another child, or wanting them to come to play. These children who stand in the playground, who sit in the classroom, will never know that there is a girl who should have been there. A girl who should have been friends with them. To them, to their parents she never existed. Our daughter to the class of 2028 will never have existed. In the playground I’ll never be Melody’s Mum.

The Shoe Box

A show box with the letter M in it.

There’s one extra thing we’re having to sort for the first few days of school, a shoe box to fill with memories their favourite things to let their class learn a little bit about them outside of school.

Melody lived in a box, she sleeps in a box, and has two memory boxes full of things to help us remember her.

She doesn’t have a box of her favourite things, of her hobbies. It has nothing inside. No stories to tell of her family members, no adventures to share. Photos of her growing from a tiny baby to a girl entering into year 1 are missing, they will always be…missing. I don’t know her.

 

As if she never existed

I’ll fight to keep her memory alive, continually retelling the one story I have, the short story of her life. It’s all I have but for the children and parents going into year one this week, for the children who become the students of the class of 2028. To the men (or women) she could have met to one day marry. An aisle she once stood at, will never be the aisle she could have chosen as a step towards her future.  To the adults of the future. Melody never existed.

Not just the baby

She is not just the baby we have lost, we lost her whole life. Everything she could have been – gone.

 

Please Help Me To Understand. The Taboo

A taboo…In the grand scheme of things I am still really new to being a bereaved Mum, I’m still learning. Five years and five months since she took her last breath. Death lasts forever, it happened before her and of course since. In the bigger picture of being a bereaved Mum I am only an infant.

Society

I struggle to make sense of how society is a round baby (child) bereavement. The poor support, the boredom from people who don’t fully understand; the minimal timescale that society thinks a bereaved parent should be over it. If I were to say to a widow, “Isn’t it about time you were over that by now.” Or if someone had said to me, “At least you have your Mother, she can always marry again…” In response to the death of my Dad, I’d most likely have shouted them down if they had.

Disrespectful, downright rude. Yet if you lose a baby, in any way; the babies who never get to stay, I had to hear “At least she didn’t come home.” Or “At least you have other children.” People can be very unkind.

Why did all become such a taboo?

When did is become acceptable to attack a grieving parent? In history the dead (BBC website)-  ESPECIALLY children were remembered and respected in these photos. Staged photo with the dead to make memories, before the final goodbyes were seen as a mark of respect. Infant morality was a lot higher then too.

But why the change?

Friends share their babies who have never take a breath, photos are all the memories they have; but are then told to hide them away in inappropriate ways.

Acceptable behaviour

But in today’s society this behaviour is deemed acceptable. The attitudes of “We don’t want to see or hear about that.” It’s harmful. My own photos have been attacked by strangers, my photos only included her in life. It is harmful to the parents, harmful to the parents who want to make a change, harmful to medical research to try and change the mortality statistics. Because let’s face it there are still far too many babies and children dying who shouldn’t be.

I have donated to many charities in my lifetime from health related ones, animal welfare, refugees. If I can I will. The community spirit in all of the above is how it should be. But you mention baby loss people may as well run for the hills, just recently an acquaintance had a lip curl and even a slight snarl because I had mentioned my daughter, my dead daughter.

We do notice the awkward fidgets by the way.

Awareness

Talking about these babies, children not only make parents feel less alone but it brings awareness, can ultimately save babies lives or simply open up opportunities for people to be properly supported.

Millie’s Trust came about because Millie died, her parents using her memory have gone on to save hundreds of other from the heart ache they endure.

Maison’s Memory because a little boy died from an accident, now his parents work closely to help with safety measures to keep other babies and children safe.

Towards Tomorrow Together, again because a baby died, and now his parents help give resources to other parents going through the same.

These are just a few reasons why Baby Loss should never be a taboo. I know people get really annoyed and fed up with me speaking openly about you girl, about her death.

It is how I chose to deal with our loss. But most importantly it is because she is MY GIRL, our daughter.

Melody, herself has changed a procedure at the hospital, the R.O.P test, she has changed how quickly sepsis should be treated, and making sure extra staff or more appropriate staff are on in the evenings. The death of my girl did this, talking about our girl did this.

Understanding

So, please tell me.

Why is it so disgusting to speak and share about our babies?

Why do people think it is okay to be so insensitive to bereaved parents; to insult our babies?

I do understand that it is difficult to speak to someone who is going through such a loss but if you don’t find it acceptable to question a widow, or someone who has lost a parent or even a pet, particularly about replacements and moving on.

Then it isn’t acceptable to do it ao a bereaved parent either.

 

We need to break this taboo.

We need to keep talking.

It isn’t catching, but it will save a life.

 

Melody and Me

Melody and me logo, which is a heart with an adult and child hand,

 

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

<a href=”https://www.bloglovin.com/blog/19059075/?claim=5vvsux4jvvk”>Follow my blog with Bloglovin</a>

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. 

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.

 

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.

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.