Category Archives: premature

melody and me

Day 35. And Then She Was Gone. April Fool’s Day

Her Dad phoned in as he always did. I don’t know why; but I never liked phoning in, he was far braver than me. She wasn’t feeling herself at 11pm the night before, but after the past week, it was kind of expected. They were going to wait and see for the Dr at 2am.

I was just waking up when he came into the room to wake me to say that Melody was feeling a little poorly over night – they were considering placing her on to ventilation. To me that wasn’t feeling a little poorly; this was something more.

I leapt from my bed and we tried to decide what we would do. We had my older two children; we had plans to visit just me and my eldest daughter. It was then we decided to get their Dad to have them while we went to see what was happening. We fully intended on returning to collect them to go and visit her.

We had a phone call asking if we were going to make our way over to the hospital, we said yes.

Dropping the children off as soon as we could, ensuring them that we’d be back soon, we would all get to see her later. Another phone call came; asked us how long we would be.

My husband and I talked on the way there, we were fully expecting them to tell us that they were going to transfer her to another hospital; they were just waiting for us to maybe sign forms. That is all we were expecting.

Reached the car park, where I placed a Facebook status, asking for positive vibes and wishes for this little girl, who we thought was going to be moved.

We buzzed ourselves in, the atmosphere was different; even before we had walked into the actual unit – something was off. We entered the room, saw boards around one bed; then headed the opposite direction to where she had been the day before. She wasn’t there. Where was she?

She was indeed in the bed space behind the boards. There were no other parents, there seemed minimal staff; we stood by the nurses’ station and was greeted by her paediatrician.

“Melody became very unwell overnight. It is expected that she won’t survive.”

What the actual fuck?!!

My legs turned to jelly, I hit the ground but I remained upright – somehow. She was still talking, I couldn’t quite tell what she was saying; I just looked towards the screens. She was in a bed space that she was never in, even when she was first born – she was now in the highest of point of intensive care.

I couldn’t stand the sound of her voice any longer, I wanted to slap her, grab her and scream in her face to tell her to stop – to stop lying, to just shut up.  I needed us to be with Melody. We walked behind the screens, to find a nurse performing chest compressions. She’d had her heart restarted five times in the final hours.

“Do you want to hold her?”

Of course, I did  – I didn’t want to let her go. How was I supposed to let her go? How exactly was my heart supposed to beat?

They gently lifted her from the incubator, leads and tubes covered her tiny little body; this tiny little ventilator up against her face. How were we supposed to do this?

Melody was gently placed in my arms. She was so peaceful, she didn’t look like she was dying.

I asked, begged, in fact, to be told that it would be some sick April Fool’s Joke. I looked around at each of the faces, none could make eye contact – none could tell me that they were lying; nobody could tell me that it was all going to be okay. Nobody. How was it ever going to be okay again?

I passed her to my husband, I couldn’t hold her; I am her Mum I was meant to protect her, I was supposed to do everything in my power to keep her safe; it was my one job. I couldn’t just sit and feel her life leave me, I couldn’t just watch helplessly as her restless body took its final breath.

The ventilator was removed, they were pressing the end, watching as we nodded to say stop. I didn’t want them to stop, how were we meant to say stop?! I knew I needed to hold her; I asked for her back, I whispered in her ears, desperately hoping it would help or that she would hear me. Begging her to stay, promising that I loved her, if I loved her more would she stay. Begged hard until I could no longer find the words.

They stopped, the little piece of plastic was removed; we held her together. We cried; they cried. She remained silent and peaceful. I could hear them whisper that she was gone – but she wasn’t she was still in our arms, she was STILL in our arms; she hadn’t gone anywhere.

Her heart stopped and everything changed.

She was meant to be our Rainbow Baby; our honeymoon baby. Instead, she became the baby who never grew up. Our missing note.

The start of something new.

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.
Cosy.
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
xx
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.
Helpless.
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.

 

melody and me

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.
melody and me

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.
Feet!
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.
melody and me

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.
melody and me

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.

 

Cuddles
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.