Category Archives: Neonatal

neonatal

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…
From 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 PTSD, children who are assumed to be replacements, 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 should have been her discharge date.
I still cannot believe it happened to us.
baby loss

What I Learned In The First 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.