#CaptureYourGrief Who They Are

Day Two.

Melody Caitlyn born at 26+6 weeks weighing 1lb 5oz. 670g. She was the size of a 23weeker, 23 centimetres long. 9 inches.

I had developed a life threatening condition called HELLP  syndrome, rare complication of pre-eclampsia. I was minutes from fitting, we were giving a three minute notice that a c-section would be happening.

She was supposed to be born quietly, she was expected to be ventilated for at least 10 days.

Not her. No.
 She squeaked, she let us know she was alive, promptly kicked the doctor on her way out.

Came off of her life support machine at 24 hours and the CPAP machine removed at 48. She wasn’t giving up easily.

Feisty,nicknamed Little Miss Fidgety Pants by the nurses,pulling 12 feeding tubes out daily. One set causing her to faint,and to terrify us.

She had a PDA, (Patent Ductus Arteriosis), a slight murmur on her heart, which had almost sorted itself by the time she left us, a cardiologist came to assess her, placing the gel on her tiny chest, she smacked him,repeatedly until he’d completed it.
A scan on her brain showed no abnormalities at that point of assessment, meaning she was most likely not to have had cerebral palsy.
Once we had been given her discharge date,we were simply waiting for her to grow.
Being a girl she had amazing odds.
She was coming home.
But she didn’t.
The week she died she had a transfusion, she was a little anaemic-normal for micro preemies, they have a lot of blood tests,so blood needs replacing. She wasn’t 100% but she was OK. They’re normally unsettled, need minimal care and feeding halted.

They decided,unbeknown to us to perform a procedure,that is quite uncomfortable for the babies, has to be done at the right age,and weight. She wasn’t quite at either.
The R.O.P testing. Retinopathy Of Prematurity.. Eye Test.
It is fairly invasive, quite a nasty test, eye lids propped open,their eyes are anaesthetized to check for blindness, to see whether laser eye treatment is needed.
Babies do get ill from the testing, a couple did whilst we were there,there were thoughts of meningitis but it was down to the test.

It is an important test, that really should be a choice of parents. Stevie Wonder is blind due to ROP. He’s amazing. He’s alive.
She didn’t recover.
Her o2 requirements crept up. There was a brief mention of meningitis.
However the day before she died,she picked up,her o2 was still higher than we’d like but she came out for cuddles, her brother saw her out of her incubator for the first time.
The following day we made plans,plans where her big sister was going to help with a feed, watch nappy care there were even talks of a cuddle with her sister.
Melody loved her siblings, she even had a brief smile for them.
She was meant to come home.
Yet instead, as we were at home getting excited for the following day, Melody was changing.
We phoned that night as we do every night,they said she was feeling poorly,but not to worry.
The next morning we called to discover they were about to ventilate her and to get to the hospital.

Everything about her final hours was too late.
They waited to see. It was too late.

The outcome should have been different.
At exactly 5 weeks old.
A Sepsis similar to Meningitis stole our little girl.
Her death review,her dying has led to changes.
More on call doctors at the weekend.
The ROP test being less invasive.
I just wish it hadn’t have been ours (well or anyone else’s) baby to have died to make these changes.

Melody Caitlyn
Our Miniature Hero

Note: I’ve not shared this for sympathy, for attention.
The ending of Melody’s story is the awareness I want to achieve.
We’re shy,we were clueless in the NICU.
Most nurses were amazing, but some forgot that the babies weren’t theirs.
Ask questions. Get the answers you understand, if you don’t ask to explain it slower.
Not just the NICU but if this is the journey you’ve landed on,then make sure answers are explained in death.
When she was alive we didn’t know we were allowed to touch her more than we could have,we didn’t know about milk donors,we didn’t know we could simply say no.

Even after death,we never knew we could have had the extra time, to cuddle,to bed share. To make precious memories. We were scared we’d hurt her.

Ask,no matter how small the questions are,they could make a big difference in your story.

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