12th November 2015
It’s been a year since we said goodbye, kissed your forehead and you took your last breath in daddy’s arms. Sometimes it feels like yesterday as I rested my hands on your warm skin through the holes of your incubator and told you how much I loved you.
From day one aged 24 weeks and 2 days you were full of beans, minute in comparison to other babies on the ward but perfectly formed.
In the Neo Natal Unit we hardly left your side, first they let us stay in the family room just down the corridor but as you got a little bit stronger, they moved us to a room a short walk away.
We were there at the ‘ward rounds’, first thing in the morning and then in the evening. This is where the team of consultants would detail how you were doing. Daddy became an expert in deciphering the jargon and relaying to me what everything meant.
On day two we arrived at your incubator in the morning and I noticed straight away that you weren’t moving your legs and arms as much. You would lift your left arm slightly and then it would fall by your side as though you were thoroughly exhausted. Call it mother’s instinct but I knew something was wrong.
We discovered that you’d had a very small bleed on the brain overnight and this meant that messaging to other parts of your body had been affected. Your toes had turned blue because the blood wasn’t circulating and the consultant said you may lose a few toes. We thought to ourselves, what are a few toes for a life.
You were, as the consultant described, the poorliest baby on the ward and in a ward full of very poorly babies we knew this wasn’t good.
There was a glimmer of hope when we saw your toes turn back to a healthy colour. I said to the nurse ‘look he’s getting better’ optimistically as she put her hand reassuringly on my shoulder.
I wanted to be a ‘hands on’ mum but it was so difficult. I would give blood and express as much milk as possible. I was stockpiling for when you got stronger.
Four nurses were at your incubator when we arrived back from a short rest. One consultant had an x-ray machine hooked up and was describing what he saw through the eyepiece to another consultant who was scribbling notes. I still remember looking at the pictures on the screen and not knowing what they meant but hoping they were showing some positive signs.
One nurse was trying to get a cannula fitted to get fluids in but your little veins had taken all they could. I wanted to shout at her to stop and wanted to say ‘no more’ but I knew they were only doing the best they could for you.
What followed was another meeting with the consultant and he showed us the X Rays. The small bleed in the brain had now encompassed the whole left hand side of your brain. I knew from school that the left side of the brain was dominant in language, hearing and handling speech.
I glanced at your dad for some reassurance and he just bowed his head.
I don’t recall much from the conversation with the consultant that day, only that that he told me that should you survive you would have a severe disability.
I remember reflecting on my own childhood briefly. Riding bikes with friends, running in puddles and rolling down hills.
We wished so much for you to grow up healthy and happy but we knew this wasn’t meant to be. We both wanted more than anything for you to no longer be in pain, so we decided to take you down the ‘comfort path’. We want you to know that this was done completely out of love for you and for no other reason.
The nurses took your little goggles off and kept your ventilator on but reduced its output. I put my hand through the sides of your incubator and you turned your head. For the first time I saw your brown eyes as you opened them to look at me and I really felt at that moment you turned to say ‘thank you’ mum.
You kept fighting just long enough for both sets of grandparents to meet you as well as aunts, uncles and mummy’s closest friends. They all spent time next to your little incubator before it was time to say goodbye.
We wound up the Steiff Bear that Auntie G gave you and he played a nursery rhyme as they brought you into the room. We had a cuddle and told you how much we loved you. You were placed gently in daddy’s arms and your breathing mask removed. I asked my mum and brother to take good care of you as you took your final breath and drifted away from us.
We hope you enjoyed the Winnie the Pooh themed send off. Sky Full of Stars by Coldplay is your song. Your Steiff Bear sits in the corner of the living room and your photo takes pride of place on the mantelpiece. Daddy and I also wear special rings, so you are always close to us.
For the best part of six months after we said goodbye, I went over all the reasons that there could be for you deciding to arrive so early and so unexpectedly. I’ve been told medically there is no explanation and it’s just one of those things.
It seems that you were just too eager to meet everyone. I just wish you’d waited that little bit longer……
Happy 1st Birthday J, my precious little boy.
Lots of love,