Neonatal loss awareness

Neonatal Loss Series – Marisa’s Story

12 Days – That Is All I Got

(By no means am I trying to discredit miscarriages or stillbirths.)

My loss matters too.

My son was not a miscarriage.

My son was not a stillbirth.

My son was a neonatal death.

My son lived for 12 days.

My son died in my arms.

My son should be here.

My son is gone due to medical error. I can’t believe I finally said it and wrote it.

Medical error.

Here is his story. Here is how my son became a statistic for neonatal death.

 

The year – 2010.

The emotions/ feelings – joy, happiness, love.

We were expecting our first child. A boy. A son we named Drake.

We did everything first time parents do; we enjoyed every moment of the pregnancy, we imagined which one of us he would look like, we had baby showers, we painted his room, we decorated his room, we went to every appointment together with our group of doctors, we told the doctors any concerns we had (such as my high pain tolerance and the chance of having fast labor – family history), we looked forward to seeing our son, holding our son, loving our son.

At 38 weeks pregnant that all that changed. At 38 weeks, I went in for my normal weekly appointment. At 38 weeks, we found out our son was in the Frank Breech position. At 38 weeks, I was scheduled for my C-section for 4 days before my due date. At 38 weeks I still trusted my group of doctors.

At 39 weeks, 2 days – I went into labor at home in the early morning hours. We timed my contractions for 20 minutes and upon realizing they were less than 5 minutes apart, we called the doctor’s office and spoke with the nurse who said she would have the doctor call me (the same doctor on-call was the one who was to be doing my C-section in 2 days’ time).

My biggest mistake.

The doctor called, listened to what we said and decided that we should continue to monitor my contractions for another hour. Well as new parents, we listened. The biggest mistake ever because you see – 45 minutes into that hour my water broke and my son’s feet came out. (During this time, we called the nurse to have the doctor call us and we never got a return call until several hours later.)

Naturally once his feet came out, our next call was to 911, by the time they arrived my contractions (with no help from me) had pushed him out to his ribcage. The EMTs decided to try and help us finish delivering him on our bathroom floor – so we got the rest of his chest and his shoulders out. We could not get my son’s head out, so we were loaded on a gurney with his head still inside and taken to the hospital where with the ER doctor we finally got my son’s head out – but by now he was no longer breathing.

One of the EMTs was able to resuscitate him long enough to be placed on a ventilator.

Neonatal Unit

Within a couple of hours, he was transported to another hospital where there was a NICU. I had to stay at the hospital I was at, they finally released me after 15 hours and we made the 45-minute trip to see him.

You know your son is truly hurt when you walk into your son’s NICU room, surrounded by other babies, and the night head nurse tells you:

“Out of all the babies here in the NICU, your son is the worst one.”

Drake spent the next 12 days in that room. I could go on about the tests he had, the meetings with doctors we had, the talks with the nurses, the meeting with a local organ donation company (my husband and I are organ donations and we wanted information in case Drake did not make it).

No matter the tests, the meetings, the discussion – the tears, the anger, the silent screams; the end result would never change.

You see our son was

BRAIN DEAD.

Goodbye

The lack of oxygen he endured while he was stuck inside me caused brain damage, he would never breathe on his own, the doctors gave us 2 options:

  • Allow him to stay on the ventilator and allow his body to deteriorate and die.
  • Pull him off life support and allow him to die in our arms surrounded by love.

My husband and I talked for many hours – we made our decision out of love. Love for our son. We had no idea what pain he may have been experiencing.

We chose to say goodbye, to allow him to go, to relieve him of pain.

At 12 days, 12 hours old, we pulled Drake from life support. He lived another 4 hours before he finally passed away in my arms.

This was 7 years ago and I think about him every day.

 

Thank you to Marisa of Life by the Dreams for sharing Drake’s story.

neonatal

Baby Drake

Capture Your Grief

Clear and Let Go – Capture Your Grief 2017

Clear and Let Go

Yesterday there was a rest day in the capture your grief project, so no posting; however I am working on a little awareness post for this coming week to replace.

You see I was going to stop this project. Saturday just gone was going to be my last day; for this year I am not in the place for writing about mindfulness. I said to my husband that I would no longer carry on with it this year. Although I have said this previous years, but that is down to either having our story attacked by people who have nothing better to do, or because it can get really heavy.

I am in a place where I don’t want to be a bereaved mother. This is written about elsewhere, so I’ll try not to talk too much about this for now, as the post won’t be public until next week.

I don’t want to let go of her; but for one day it would be nice to get a baby sitter; for someone to hold my thoughts, hold my love and forget her. Either forget that she existed or forget that she died, that she is alive and well. But I can’t. Don’t Judge Me.

Capture Your Grief

Just like I can’t stop this project, she doesn’t know I am doing it… if she did I wouldn’t be doing it; I probably would have no idea about it either. But I simply cannot let go, I can’t let this year be only half way done. So I will, although my heart is not in it; I will continue.

However I will maybe twist the prompts  a little; I am struggling with the lack of awareness for Neonatal and Post neonatal deaths; for me Capture Your Grief was my way of raising that awareness, through Melody. That her type of death mattered.

So I apologise if I break the rules, but let’s face it the rules are that children shouldn’t die.

Clear and Let Go

One of the parts of today is to have a clear out; well I cleared out our living room last week, made way for a tidier toy corner. Another is to clear out some of my social media.

This.

This time last year, and the year before and the year before; the support from the 2012 project to the very same project today is different. The difference in having people read them, comment and reassure me that our daughter matters, that she is remembered. That we are not alone. The responses have ended up to be none, but I also know that platforms make it difficult to share. And I do know who remembers without being seen.

Social Media and life in general, people want the good bits; when I was initially in the paper a year ago about the book I had written people wanted to know, people I had lost contact with suddenly wanted to speak; people I barely knew wanted to support and be part of the awareness. But now I am just a Mum blogging her way through grief, nothing has changed; I am still post loss. I am still the person I was a year ago. So, I am giving my Facebook, and any other social media a clear out. Not by new friends and acquaintances I have picked up along the way; but those who have become strangers.

People grow apart, that really is life; it is hard; hitting delete on the people who were once like family. But it is normal; people change, people grow, likes and dislikes change.

I think for me I have learned that having such a smaller circle of friends means we can look after each other better, put more trust into one another. In recent years I have found it terribly difficult to trust anyone.

I need to stop punishing myself. I need to find peace.

It is time to let go.

Lyric of In My Veins

Lyrics By Andrew Belle. In My Veins

In My Veins

I’m not going to stop talking about her.

Neonatal loss awareness

Neonatal and Post – Neonatal Loss Series. Warren’s Story.

A Dad’s Perspective

As I try and raise as much awareness for Neonatal Loss, there is also another corner of the loss community which also gets forgotten, they are the Dads; so much focus goes towards the Mums.

I remember in the early days people would ask how I was but my husband was always asked to make the tea, or look after me and the children. He was hurting too.

Today’s installment is from a Dad

” I broke down and sobbed like I’ve never sobbed before to the point i nearly collapsed…”

I have included the link from his blog today, with his permission. Warren currently volunteers with UK charity Daddys With Angels.

I’d like to say thank you to Warren for sharing his story for this series. Please make sure you click the link.

Warren and Oliver.

 

Capture Your Grief

For The First Time – Capture Your Grief

first time. the letter M

First

Today is the first time I have lived the 7th October 2017. I have never lived this day before. I won’t be trying anything in particularly new today. It is an ordinary day for us. The children are displaying in a carnival and we’re on a constant time watch to be ready to go. Things to get ready, helping to get 30 children ready today. So for me to physically go and try something new today would not happen.

I woke up this morning after a lovely evening out for the first time in what seems like ages, I laughed and felt on top of the world. I went to see a show, I never thought I would ever go and see. It was hilarious. Of an adult content, but it was so funny.

The first time I saw Melody I was strapped to the bed, wires and leads every where, she had been taken out via c-section, there was this giant green screen dividing my head from the working end. The room was hot, it made me feel faint, there were people everywhere, there wasn’t space to move in the room or add any more people. We could tell the operation had begin because the room had fallen silent. I remember begging the midwife stood next to me to tell me that she was alive.

“Is she sleeping? Has she been born sleeping?”

The midwife would take a second, which felt like hours to peer, I knew she was concentrating, but I needed to know. Her heartbeat was on the CTG moments before, but we knew she was fighting.

As I asked one more time, a squeak came. It was loud enough to fill the deafening silence; it was loud enough to be heard to fill my heart with love.

“No she hasn’t been birn sleeping.” The midwife said to us in her really soft voice; the Dr deliviering her confirmed so when she said the Melody had given her a kick as they lifted her out.

For the first time in days I felt relieved that she was born. That she had been born alive; we had no idea on how long we’d keep her, being a micro premature baby; nobody knew how well she would do.

The Doctors brought her to me, I could see her tiny pink face, she really was that tiny. 9inches of her…23cm.

The first time I saw her, I had no idea whether it would be the last time I saw her alive. I had to cherish it; I have had to keep that safe. She wasn’t meant to die.

 

Carly Marie Capture Your Grief

Day Six

Melody and Me.

Capture Your Grief

Bella Luna – Capture Your Grief 2017

The photos I took are from last night, the most beautiful full moon I have seen in a while. Taken here in Somerset at about 7:45pm.

I love looking a the moon, its beauty fascinates me, whether it is in its full glory or whether it is giving the sky a Cheshire Cat grin.

It is peaceful, it listens, it never has an opinion and as far as we know it doesn’t judge. We can yell, and shout at it, swear until we’re red faced; yet it returns every night, to give us light, to watch over us making sure we’re never alone.

I can’t remember what the moon was doing that night, I can remember seeing it through the window whilst she was still alive; it was one of the things I was looking forward to showing her. This magical light in the night sky. Now it gives her light as she sleeps alone, her own torch in the darkest of skies.

Apologies for the short post today.

 

moon

“Do you ever hear me calling?”

Soul Therapy

 

Capture Your Grief

Soul Therapy – Capture Your Grief 2017

 

Therapy

We were never really offered a lot in the way of therapy. There was a Councillor in a dingy part of the hospital, who didn’t want to hear a lot about the loss of our daughter; and was very opinionated about whether or not we should have another baby. It wasn’t helpful, we left feeling confused.

We were then later told that we had been bumped down the waiting list for support, and that they only dealt with miscarriage, late losses, stillbirth and babies up to 5 days old. We were none of these. This was when we first realised that support for us, would be at a loss.

This is where writing came; I have loved it all of my life. But it now gave me a purpose; I had to release what I was feeling somewhere; I needed to not hold in all that I wanted to say.

It hurt so much to not say anything; so writing became my therapy. Although Melody’s writing journey began in the NICU. When you have a baby in hospital that can have very little visitors, the strain it puts on your life; it is hard for people to understand. Your whole life is taken up by splitting yourself into visiting the hospital and being normal for the children you have at home. So I wrote things down, I wanted Melody to read back her journey in the NICU once she was older.

That will never happen.

A Mayflower’s Rainbow

 

The screen for a long time was my best friend; people in there would listen and would understand exactly what I felt. Releasing in such a public way, to write has helped me. I can cry whilst I write and no-one can see me. I can take my time to get the things I want to express out. I have read some earlier words; they were so raw, I can’t even begin to remember exactly what I was feeling then. I know it was painful. I released A Mayflower’s Rainbow as an indie publication, but I can’t read it. It I unedited and raw; but I can feel the words I wrote, it is too painful to be back there, I know it is coming; I can’t make it stop. So I don’t read it. I have to just nod and agree when people say they have read it.

 

Writing her name would be another. Every time we go to the beach, or anywhere we are able to write her name we do; to somehow include her. If it is in the sand then we leave her name there, then if and when people see her name they can make up their own mind to who she is. Just like what we do. It is the only footprints in the sand she will ever make.

Therapy

Saunton Sands

 

Melody And Me.

Belonging

Capture Your Grief

Belonging – Capture Your Grief 2017

 

Stranded

I never really felt like I belong anywhere; at least not until I met my husband and our family life became as complete as it’ll ever be.

There were friendships in school, but they weren’t always what they seemed; I have always found it particularly hard to make and then keep friends. I am shy;  sometimes people mistake that for rudeness; but I try not to be. With this in mind it has caused low confidence-low self-esteem. I really shouldn’t let this define me, but I do.

When Melody died we were faced with people crossing the street, people telling us they didn’t know what to say; family being unsupportive; it leaves you stranded and alone.

Community

 

Truth be told I wasn’t alone, I wasn’t the only one to have lost a baby, and I began to find other lost souls. Mums and Dads who were broken. They weren’t by my side but they were there, to listen, I could listen we could understand a little of what each of us were going through.

The online community became my safe place, my saviour I guess. It allowed me to be free; it allowed me to speak without judgement, the empty pities and with some understanding of what was going through my mind.

There have been things I have spoken about over these past few years, which I could never say to people outside of this community. I guess it is because just sometimes the things which leave my mouth can be so raw, that to anyone else, I could be seen as being crazy. But I am not.

Belonging

As well as this community, I am grateful to the people who have stuck around every step of the way, and even more so to the people I have met since she died, these people have listened or read about our story, yet they choose to stick around and be my friends. There aren’t many of them, but I value them. If it is yacking on a Friday night, or a trip to the park or shops, I am eternally grateful to them.

 

It is a lifelong thing, she’ll always be my baby; and I guess I will always grieve. But to have the few who remind me to keep going are really worth their weights in gold.

 

Thank you

 

belonging

Capture Your Grief

Capture Your Grief 2017 – Meaningful Mantra

Life

Finding my Mantra. I haven’t been well mentally recently, life has felt quite overwhelming. I end up being in tears, and there hasn’t been a week recently where I have seen it through without a tear or two.

Not because of Melody, but because there have been times where I feel that I am failing everyone around me, making me feel less about myself. I want to achieve so much; I wanted to pay an interest in my children’s activities, so I became a committee member. The need to help people and raise awareness in memory of our daughter to make sure other people felt supported and less alone like we did.

As I fail to take care of myself I end up letting people upset me, in ridiculous ways, ways where I wanted to leave the job I have fallen in love with. Walk away from volunteering with the children’s activities, to the point of crying and not wanting to leave the house.

Why?

Then it takes me to get to this point and question; how can I get upset by these insignificant people, when I have managed to carry on breathing after our daughter died? That is what they are to me they’re insignificant; yet I still let them get to me. I have made mistakes in the past, and I am only human but I deserve to be happy and loved too. I certainly don’t deserve to be hurt the way people think it is acceptable to do so.

 

So, I need to choose to not give up. To take better care of me emotionally, step away from these people, but it is hard. I don’t want to change who I am and become rude or nasty; I swear a lot but I am not a fan of confrontation; but I do need to stop letting them make me feel this way, because let’s face it if they thought twice about how much they upset people they’d not do it. Much more about them than me.

My Meaningful Mantra

So, I guess my Mantra should be to breathe for me. Not to waste any more tears on anyone who doesn’t deserve them. Most definitely DO NOT GIVE UP

 

meaningful Mantra. Keep going

Keep Going.

Melody and Me.

Capture Your Grief

Capture Your Grief 2017 – Rise And Shine Rituals

Rise and Shine Mourning Ritual.

Living with grief. All I ever wanted to do was to live; I wanted to be able to be free to grieve the way I felt comfortable with, to be allowed to talk about this little girl who lived.

I threw myself into needing to help others, I needed to give the support which we lacked, to make sure no one else felt as alone as we did, it was fairly high in my priorities to do this.

But I think my most important ritual was to keep living, to do more things with the children; to allow them to grieve and share their feelings about the death of their sister. As much as my head wanted to stay in bed for days on end, my heart wanted to keep beating to get me out of bed and live for Melody. She had died her heart had stopped beating; I would have to try and find a way of carrying her in mine.

It has been a difficult process; I have never believed she is with me all of the time, or that she is flying around having fun. I watched as they lowered her in to the ground, no amount of fairy tales for me can ever change that. At least it is like that for the children.

 

Grief

I know now five years six months and one day in, that I do need to take care of myself, I do need to work on my grief. I worried too much about how others were feeling, about protecting their feelings; my early mourning was taken away, I watched as friends needed to have help because THEY couldn’t cope with her death, how family were tired of receiving cards and sympathy messages about the loss of OUR daughter.

The person that I am tried to help mend hearts that were broken, I needed to be strong; I always thought if I was strong then the people around me would know that it is okay to now be okay.

I cried, of course I cried, but I apologised for it too; maybe that is the “British Way”. Who knows?

But I do know that the grief I have for Melody is an incredible learning curve; yet no matter what I do, or how I behave there is no right or wrong answer.

This month I will be a little mindful of myself; adopt new rituals which will help me and my little family.

 

Today, my regular ritual is keeping my heart beating; making the best memories I can for my beautiful children.

 

Melody and Me

 

Day One

Capture Your Grief 2017 – Sunrise

Capture Your Grief

 

cyg

Capture Your Grief Project 2017 By Carly Marie

 

Here we are again, with this annual Capture your grief project; once which I first joined back in 2012.

A project which helps bring the taboo of baby loss to the front of people’s minds, how many of us are effected by the loss of a baby or child.

My project is in memory of Melody, but I will also be mentioning my pregnancy losses too.

Sunrise

There isn’t much of a pretty Sunrise where I am today; there rarely ever is. It is grey and miserable looking out there.

The day she was born, back in February 2012 the sun shone, it was a beautiful spring day from what I could see from my bed. From that day onwards the sun remained until not long after her death; once her “celebration” had finished it rained for pretty much days afterwards.

When we spent days in the town in which her hospital was, we’d walk to the shops I would get sun burnt in March, I was wearing vest tops and flip flops. It seemed bizarre that we had this glorious weather so early on in the year.

 

Days

We have had 2009 sunrises without her, 2009 days where we haven’t kissed her warm face, touched her warm skin, given her a cuddle. Seeing it written down as days, it seems such a long time ago; today it is five years and six months since we walked into the hospital and left different people, yet we hadn’t had surgery or an accident. We had watched our daughter die.

Different

 

Nothing was going to be the same again. Though we didn’t expect how different we would be, how different people would be too. Meeting new friends, losing old friends, this tiny five week old baby had changed everything.

 

Capture Your Grief Sunrise

 

Melody and Me

 

Capture Your Grief 2017.