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.

4 thoughts on “When Your NICU Baby Doesn’t Come Home.

  1. lifebythedreams

    The one question that I think will always haunt me – WHY? I have so many questions that start with WHY. But answers I will never have.
    I share him with whomever asks, I don’t shy away from any questions no matter how hard they may be – because in the end this is all I have. This is all I can share of him because he is no longer here. Most people I feel don’t want to ask for fear of making me upset, I would rather talk about him through my tears then to feel that he has been forgotten and some days lately, I feel that is what is happening – it has been almost 7 years. 7 years is a long time.
    I am a mother to 3 boys but the world only sees 2 – if I shout his name will they see his name carved in my heart along with his brothers. If I shout his name will they ask about him.
    Thank you for this piece, I also feel neonatal loss is just as important as all other losses because in the end all these losses mean the same thing – the loss of a baby, the loss of a future, the loss of a piece of our family, the loss of part of us.

    Reply
  2. Emmy - Misadventurous Mummy

    Although I haven’t suffered a loss like yours, My heart breaks for you, and everyone who goes through this. My best friend’s son died of a degenerative genetic disease at 13mo. That’s the closest I’ve come and that is unspeakably painful. I really can’t fathom how much it must hurt you. Your daughter knew nothing but love the entire time she was here, and that is so precious. ❤
    Thank you for sharing your story. I think it's so important to hear. xx

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