Monthly Archives: March 2015

melody and me

The Countdown. Day 34. Final Day of Normality

We were off to visit Melody today, all of us apart from her big sister, who’d gone to a birthday party.

We were nervous about the visit as she’d had a couple of ‘bad’ days. It was upon entry with my little boy we were greeted with the news, that we could finally have a cuddle with her, after days of not being able to.

This meant her big brother could see her outside of the incubator for the first time, he was so excited. A grin spread right across his face; he was keen to love his baby sister properly.
(Patiently waiting)
As usual, the nurses opened her incubator, I was always scared about holding her. But it was always so amazing to do so.
So soft. She certainly seemed to love cuddles.
Just making it to 2lb, she was still so tiny.
Her brother was in awe of her, he told her about his train collection, he even showed her a train. They were going to be the best of friends; that we knew already about all three of them. They were going to build a life and memories together. Them against the world.
We even managed an almost family photo.
Of course, now I wish that I had never let my daughter go to that party.
She should have been with us. It has to be one of my most painful regrets.
Melody was doing so well, she’d picked up so much that the next day her big sister could see her out of the incubator too and watch a nappy change; there had even been talks of maybe a little cuddle or even help with a feed.
We were going to have a mummy and daughters’ day.
We’d decided we’d have a picnic close to the hospital, no clock watching. Just time spent together. We were incredibly excited.
Our first of many girly days. That was what was meant to happen.
That is what should have happened. But it didn’t…

“I know you’re leaving in the morning, when you wake up
Leave me with some kind of proof it’s not a dream…”

Paramore – Only Exception

 We said good bye to what was our normality that day – without uttering a single word, or knowing that it was the end of that normality. Until all we knew was something new. 
melody and me

The Countdown…Day 33. Discomfort

30th March 2012
 I was allowed a little stroke today, she was still feeling a little under the weather from the day before’s events.
I wanted to hold her so much, but I knew that we needed her to get better again. I would have given anything to have taken her discomfort away after the procedure from yesterday. I wanted her close to tell her that everything was okay, that mummy was with her – that she would feel better soon.
Our little Orville
melody and me

The Countdown…Day 32 Eye Test

29th March 2012
That day, the day that unbeknown to us was the beginning of the end.
Eyes sore and swollen.
She had an eye test, one that is often difficult for premature babies to handle. Retinopathy of Prematurity eye test. They don’t allow parents to comfort their babies during this time as it is uncomfortable to watch. We didn’t know that she’d had it done until after.
I wish she hadn’t. 
But her eyes are a painful reminder of what was to come.
I wasn’t allowed her up and give her a cuddle, even though she was uncomfortable,
I couldn’t even stay long or touch her much either.
My darling baby felt under the weather, and all I could do was look at her through a plastic box.
This bit is painful.


She reached this though.
A huge milestone for micro preemies; she’d hit her first kilogram – at last!
Barely a bag of sugar.
melody and me

The Countdown…Day 31. Eye colour

28th March 2012 Day 31

It was obvious she was going to be such a Daddy’s girl.
She was very much like him too,(as are her little sisters).
Here, the picture doesn’t really show exactly what she was doing, looking back I wish I had videoed her.
But she was proving just how much of a fidget she was, head facing us, then the other, then back again.
Feet pushing up, bottom in the air – we were unsure exactly what she was doing. Almost trying to roll over. She did at one point get onto her side.
Finally one of my favourite photos, and actually one of the last ones with her eyes open.
I have a bit of a struggle with her eyes, of course, that comes with what happened later on.
But the colour of them.
My older two children have blue eyes.
Of course different dad, but I too have blue eyes.
When it came to her little sisters one has brown eyes like her dad, the other has my eye colour.
Not knowing what my own child’s eye colour would have been is quite hard to think about.
Something small, but so great in importance, of knowing every aspect of your baby.
An obvious every day one, yet I can’t answer.


baby loss, grief

The Countdown…Day 30. Neonatal Apnoea.

27th March 2012. Day 30

Yesterday, while out having a cuddle she had an apnoea. They had to whip her off of me, to give her a little bit of oxygen and tickle her feet whilst she came back around. She’d not had one for a little while.

Apnoeas are very normal in premature babies; they can occasionally forget to breathe, this is what she had done but didn’t make it any less scary. In fact, I was terrified of cuddling her again, so it took great persuasion for me to cuddle her again.

They reassured me it was nothing I had done, that it really was a normal premature baby reaction. It was certainly hard to accept these “normal” things. It all felt so terrifying.
Having a blood transfusion, another a normal premature baby task. These special babies need regular blood tests, but when they’re ultra tiny, their bodies don’t have enough reserves to replenish the blood that is taken. Actually apparently compared to most micro-preemies, Melody hadn’t quite had her fair share of transfusions.
She was doing super well on that front.
Feisty Little Miss Fidgety Pants.
baby loss, grief

The Countdown…Day 29. Melody

26th March 2012

Was my first day back driving, Monday to Wednesday evenings

We used to stay at my brother in law’s house, whilst he was out of the country.
It was nice to be close to the hospital, but this was coming to an end, but so was the NICU journey.
With counting down the days until Melody would be moving out of the unit, and coming home.
Today it felt good to be able to pack the car for a few days and drive over,
without the need for buses or lifts.


It was Incubator switch over day, they’d do it once a week.
I remember taking this photo, wanting to show Melody when she was older the clear box,
she had spent her first few months in.
All in the name of memory.
Today was daddy cuddle day.
We would try and take it in turns to have cuddles.
He was always too scared because she was so tiny.
But she certainly love her daddy cuddles.
She went back into her incubator, but not long after needed a nappy change…and a sheet change!
For someone so tiny, her bowels worked perfectly! If you have ever had a newborn who’d poo as soon as you change the nappy, then do it again when a new nappy is placed. Premature babies do this too, well at least this one did. She always had a way of saving her poos for Daddy too, I guess just like a lot of newborns too!
To save taking her out of the incubator again, I lifted her up to help the nurses.
She looked quite chubby here.
Back cosy finding her thumb.
On this day we were able to do a tiny little video of Melody having the hiccups, such a tiny little noise, and so incredibly cute.
I initially only took it to show her siblings, we also have ones from the day of her birth too.
But they’re private.
baby loss, grief

The Countdown…Day 28. Sisters

25th March 2012 Day 28

This was a day I was unable to visit.

Both my little boy and I had slight colds, they weren’t bad,
but of course, we didn’t want to pass them on to Melody.
So it was Daddy and Big Sister visit. Nanny J too if I rightly remember.
Melody responded really well to her siblings’ (and ours) voices.
She’d often turn her head to their voices.
Very Proud big sister holding hands with her new baby.
baby loss, grief

The Countdown….Day 26. Cuddles

23rd March 2012 Day 26

More Snuggles with her again today.

They were fast becoming more frequent.
Which We liked a lot.
Melody and me
She seemed to be enjoying them more and more. Her hands seemed so big in comparison to her, her feet too.


The cuddles were always very short, so as not to wear her out too much.
This point she was still only having a couple of nappy cares a day. As you can see she was attempting to suck her thumb; she had been given a “thumby” which is a thumb-shaped dummy. She liked it, it was to encourage her to find her sucking reflexes. but she did love her thumb too.
melody and me

The Countdown…. Day 25. Perfect Preemies.

22nd March 2012 – Day 25

melody and me
Wearing her 3lb vest, it was still far too big for her.
She was after all still only 2lb.
She was having a duvet day that day, she remained in her incubator. We were able to perform her cares an give her a feed. Her tube pulling became less and less too, as they had moved her feeding tube from mouth to nose. She wasn’t keen in it in her mouth, but was still far too small for NG. However her feistyness meant that the nurses had to find a way to get the tube through her nose – and keep it there.

Perfect Preemies

Although small, and born super early, premature babies can really teach you a lot. They are incredibly clever, as with normal babies they know their own minds. With Melody she was able to teach us how little and how much she wanted to be touched, she was able to tell us when she had, had enough of being pulled about.

The most obvious of her hand gestures was to place an open palm in front of her face; that was to tell us, she wanted to rest.

perfect preemie

Melody really did know her own mind; along with doing the opposite to what we had been told to expect; she was feisty and nicknamed little Miss Fidgety Pants. Kicking the Doctor during her birth, hitting the cardiologist when he dared place gel on her tiny chest. she’d cry when it wasn’t expected; pull up to 12 feeding tubes a day.

She really was something else. They may be small but they really are perfect preemies.