Monthly Archives: May 2017

Due Dates

Due Dates are never set in stone, they’re estimated, a rough idea of when you get to meet your baby.

A countdown to meeting a brand new person, fresh and new, a person to watch and grow into their own. Made by you. It is I guess a blind date, you know you’re meeting your child, but have no idea on what they will look like, you may not even know the gender, a complete blind love. 
The date that could change your life. 
Not everyone remembers their baby’s due date years down the line, others use it a conversation starter, an ice breaker or something to giggle about at their son’s 18th birthday, when he is late for a party and he was 13 days over due, “He’s always been late, he’s never changed with his poor time keeping.”
I remember all of my children’s Due Dates, my eldest born 12 years ago, was due 29th April, but due to pregnancy issues, we made it to the 8th with an induction. My son had a due date of 19th January, but I had a c-section on the 14th, he was born on my husband’s due date, my husband born on his due date – they had switched.  Baby four, her due date was 1st April, but that too was changed for a c-section 15th March, baby five was due 4th July was born 15th June. The dates are all special, and a part of their life beginnings. 
Melody’s first Due date was 20th May, this is actually our wedding anniversary, but the date was put back to 28th May, a date which became our official due date, as the pregnancy progressed we were then given a c-section date. She was due to be evicted on the 22nd May, a Monday. 
We had everything planned, even a lift to the hospital as my husband wasn’t driving at the time, we wanted to keep the date secret to people around us, to keep it a surprise. 
Her life, her journey had begun and ended long before we ever reached May. 
We’ve hit that day today, yet it seems so long ago since we had her birthday, of course it is, nearly 13 weeks ago.
For me it is the last of the dates, where I feel I can remember her in her own right, it is a date I hold tightly on to, a day which is connected to her. 
Another date that in an ideal world should have been so very different, as with the other dates I hold on to dearly. 
Her birthday. 
Her Anniversary. 
Her burial date,
Her discharge date,
Her due date.

They’re so significant, and are what make her feel to me like she existed. 
These dates are somewhat official.
They’re recorded, they’re on paper, even in stone, they all prove that she existed. 
Because sometimes, very rarely, I am scared I am forgetting her, that she is just a part of my imagination, that sometimes aside from our family unit and occasionally other people who remember and speak of her, it can feel like she was never here. 
Forgotten.
These are the bad days, the days when it hits like I have lost her all over again. 
As if it was all just a dream. 
It has been far too long since I have seen her, and cuddled her. 
Since I breathed in her smell, stroked her soft hair and kissed her tiny head. 
Since I felt the warmth of her body against my skin, since I last told her I loved her. 
Since I said goodbye. 
Today is another of those, should have been days. 
Yet instead today is just another day. 
Another day without our little girl.
She was perfect, 
her tiny little fingers, 
her gorgeous little toes, 
she had strawberry blonde hair, 
and the cutest button nose.
She was so feisty during her 35 days, 
my only wish is
that she could have stayed and played.

Our little Mayflower

Please don’t forget her. 

When Your NICU Baby Doesn’t Come Home.

As I walk away from the cemetery once again, the place I have visited many, many times since 2012. As I look over to her resting place, saying goodbye to a baby who never grew; waving to a daughter who never had a chance to wave.
We don’t visit very often, it has never gotten easier, I don’t think it ever will, it isn’t something I will ever get used to.  I wouldn’t stop visiting either, it wouldn’t be right not to.
There are times as I walk away, it gets me thinking – about the bigger picture, so many what ifs and the whys. All these years have gone by, yet these feelings aren’t just something that has goes away.
Technology has come such a long way, in the news we’re told of the fantastic breakthroughs of babies surviving against the odds, more and more babies go home to lead normal lives, of course there are those who don’t quite sail through, but they do still get to go home and be with their families, to make the best of their memories, their lives together, which is fantastic.
I’d been aware of miscarriages (having had my own) and babies who die during or just before child birth, I had assumed once past certain stages of pregnancy and birth, hearing a tiny squeak from beneath the curtain I was free to breathe a sigh of relief, it was the start of our hopes building.
My first baby went into NICU for just over a week, she’d been a little early and on the small side, it was such a scary thing, pieces of machinery everywhere, these clear plastic boxes everywhere.  At nine days old we went home, our NICU journey was far behind us, it remains as part of her birth story, the beginning of her life it was how it was meant to be. Because of this amazing outcome, we were positive in our thoughts when baby number three was born just under 14 weeks early, given 80% odds in her favour. Everything looked so encouraging. I’d walked out of NICU before with a baby, for me there was no other option…
0From the moment Melody was born, she was on a journey to recovery, a journey that was going to take her home. Surpassing all expectations of what was expected of a Micro Preemie. Her heart lost its murmur, her brain showed nothing of the injuries we had been warned about, which can be common in babies of her size, she was active and mischievous. The worst case scenario for her, for us as her family was for her to come home with Home Oxygen, even then they said she may have come off of it on discharge day, we had that date set too. Everything was set; all she had to do was to put on weight.
 I had done everything I was told was right in my pregnancy, I trusted the professionals, I reported low movement, I reported the swelling (although I was told off for that), I stayed in the hospital to rest leaving my two other children at home, I tried to eat the best I could with HG. Once she was born I put her first, expressed around the clock, whilst the children were at school we visited and sat by her, talked to her, loved her. Watch her become the character in the NICU we expected her to be. I didn’t rest post HELLP, resulting in infections and severe headaches. I was terrified to say goodbye each evening. I did everything I could.

But she died.

Could I not have done more? Or kept her safe?
We discovered very painfully that not all premature or NICU babies get to go home. Sepsis similar to Meningitis took her, she never took a step outside, yet she contracted something I had only ever associated with being contagious in school children, not for our baby who had never felt the rain or ever took a step. She wasn’t even old enough to have vaccinations. Yet somehow we still lost her.  No amount of amazing new medical breakthroughs or training can bring all neonates home to their families.
We had allowed ourselves to love her, to make plans. The love and grief for a baby who had only lived for such a short time, who had never come home is so misunderstood, the confusion from people as to why we still love and continue to grieve for this baby. For someone so small, and we had only known for a short while, she turned our whole world upside down.
The hopes and dreams taken, everything changed.
I don’t really understand, even now how our daughter, our seemingly strong, premature baby who fought so hard to be here could just die. I don’t think it is something we will ever understand. Generally Post-Neonatal death isn’t spoken of a lot. Babies who stayed for a while but died, nobody wants to really make a connection, conversations or subjects changed to something else, maybe even to talks of miscarriage, it seems easier for people looking in to relate to sometimes; if it hasn’t affected them personally, they have most likely known someone who has been affected; sometime it can be easier for the listener to brush over our loss in such a way, maybe  it makes it easier on them, or because it isn’t something one can fully understand.
This is where it falls painfully hard for us, for me. I am incredibly open about the loss of our daughter, and will answer any question I am given if I can.
There are no comparison memories to look on. So many years ago this happened, or that happened, there are no tube photos and ones without – well there is but I can’t share those. Having photos doesn’t make it hurt any less. Having other children doesn’t make it better either.
The death of a baby was never ever part of the plan, bringing home our baby that was the deal.  
Instead you’re left with guilt, the flashbacks, the constant questioning. I am honestly not torturing myself; I am still trying to work out how it is possible that we ended up being parents to a baby who didn’t make it.
Barely a statistic.
Whilst we remember and speak about the babies lost in the womb, the ones who died just before they are born or shortly after birth. Never forget the older ones. Where hope was given but snatched away.
May should have been her due date. Middle of May then should have been her discharge date.

I still cannot believe it happened to us.

Happy First Birthday Little Daffodils

First Birthday

A year ago in March I made connection with Towards Tomorrow Together Founder, Mel Scott, I’d been planning to set up a pregnancy and infant loss support group for a while, probably from about six months after Melody had died. I wanted it to be a step towards breaking the silence, that is pregnancy and infant loss, a step to bring support to anyone who feels alone in this journey.
The date for a launch had been set, I began to feel incredibly nervous about the set up, so to help make my dreams into a reality I decided to contact Mel. With another Mum, Tracy the pregnancy and infant loss support group was launched.  
Where Mel came over, we had a lovely evening, albeit a small number of people had arrived, but we did however launch a truly unique group.

 

With the support from Mayor Dave Bulmer, local Midwife, Health visitor (although not pictured here).
It was lovely to bring awareness for what would hopefully become a successful support group. 
We have since moved from St Mary’s Rooms to now hosting the group in the upstairs rooms of Eleos, for which we have been incredibly grateful to their kindness and support, even when we do have the quieter sessions, they are always incredibly welcoming.

Reflection

This week we hit our very first birthday, it has only just dawned on me, that we have reached a year, so no balloons or big party, but a bit of reflection.
We have had some truly lovely people cross our paths over the past year, to share their stories, to find hope. It hasn’t been a particularly busy group, but it has been in my eyes successful. When we first started it was said if we could help just one person, then it makes all the hard work worthwhile, we’ve helped more than one, either as the group setting or via private messages.
I am pleased with that, of course not pleased that people have to find us, I wished no-one needed our resources, but to hopefully make other people feel less alone.

A Year

It has been an incredible year, raising the much needed awareness for baby loss, we were able to do things I never imagined possible.
 
From Radio Interviews, which included speaking about a Butterfly Award nomination, as well as raising awareness for the group and various public speaking opportunities. One of my (I think I speak for Tracy too) favourite moments was meeting the Archbishop of Canterbury, that was an amazing experience, such a lovely man. I could have spoken to him all day, he really made speaking about Little Daffodils and our story really easy.
 
We, with the help of other Mums, Sam and Gemma,  have hosted a couple of fundraising events, a coffee morning, table top sale and our very successful Barn Dance, which raised just over £1700! It was hard work, but an incredible experience to be involved with, and every single person had a wonderful time.
 
It has been a few months since the event, the awareness has grown somewhat, with most recently collecting a cheque from the Mayor in front of many inspirational people, we had been included in the town’s community fund, where we will be using it for study and awareness sessions for the town’s professionals.
 
We also recently had our very first Family Session, it was a lovely couple of hours, we even had Anna and Elsa for the occasion. We’re hoping to make this a regular session, but are actively looking for a new venue, which we’re really excited about.
 
So, this is Little Daffodils, First Year, huge thank you to everyone involved in getting us to our first birthday, I am excited to see what the next year brings.
We still meet the first Tuesday of the month from 730pm, upstairs of Eleos in the centre of town.
We have a fundraiser in August, with organising well under way, lots more awareness for such a fantastic cause. (It’ll also be in aid of St Margaret’s Hospice too). 

 

Thank you for reading and for your continued support. I hope to still be here for our second birthday.