Taken in your isolation room at The Sick Kids, before we went to Yorkhill.
Mummy has a lot to get through today Haydon. Yesterday Mummy was kept so busy with the 'Lots of Socks' day, she didn't feel a need to write to you, but she does today. Her heart is so heavy today.
Mummy was with Massimo yesterday morning. It was the first meeting where Mummy has only cried briefly 4 times, instead of all the way through which normally happens. Massimo sees a change in Mummy, and he says he can see that Mummy is trying so so hard to cope with losing you and getting her life back. He hasn't given Mummy any extra tasks to do because he feels Mummy is doing enough, for now, to keep moving forward.
Mummy explained to him that she has only been able to properly look at your photographs twice, it has been too hard, With every good memory there is about 5 bad accompanying each one. He understood this, and thanked Mummy for trying. Massimo thinks it is a good idea for Mummy to create scrap books for the first 2 chapters of your life, helping her to focus on the good moments, and the positive times, and giving both her and Daddy something meaningful to look at with all of your little tags and signs added in. So Mummy will do this, she has said she will, so she will.
Mummy spoke about how worried she is about Daddy, and Massimo thinks that because Mummy has moved a little bit forward this has given Daddy permission to show how he is feeling, because Mummy can help him more now.
Lots was discussed, but Massimo is pleased with Mummy's effort, especially clearing out your room, he acknowledges that would have been one of the worst things to face, and said Mummy did well to get that moving.
She is back to chat with him in 2 weeks time, just before your anniversary days. I say days, because you became an angel on good Friday, and that is in 2 weeks time, but you left us on the 6th April, so that will also be a hard day. Your funeral happened on Friday the 13th, but we won't focus on that yet, until she needs to.
Massimo just wants Mummy to keep facing a day at a time, and working out what she can cope with each day, and keep doing what she is doing. He was pleased though that Mummy has attempted to reach out to people she had lost contact with, Mummy says she is trying to re-establish these links, but it isn't just up to her, and Massimo agreed.
Anyway,
the hard bit now.
This time last year. It is playing over and over, not just with me but with Daddy too.
yesterday all Mummy and Daddy could talk about was how we went for a walk knowing that they had turned your isolation room into a theatre, so they could insert a central line to your neck, get you sedated and place you in a pod to travel.
We sat outside the hospital watching your window, seeing all of the doctors moving past it, being busy. We were told it would take an hour, but 2 and a half hours later we were still sitting outside on the verge at the main road watching your window. The doctors had explained that it was a very risky procedure, because you'd had 36 resuscitation by this point, and your veins were so shrunken they didn't know if they could anaesthetise you. They said we might lose you through this procedure alone. We were anxious. Sitting outside, watching and waiting. Then the call came.
They had managed the procedure and you had struggled with it, but were stable. We could go up.
Nothing prepared us for what we would see Haydon, nothing.
You were lying in the pod, which looked like a little space shuttle. Buttons and tubes and wires everywhere. We could see blood stains on your neck, babygro, and the trace of them on your face. We came close to look at you, you were asleep but you looked like you had already left us. We could see marks on your neck where they had tried to insert a central line, but failed, and tried again, and failed. Our poor little baby. You had a central line at the other side of your neck, and that didn't look comfortable at all, your neck was already swollen and chubby, and this line with all these parts coming off it so they could give you so much medication at the same time...so hard to see. They had been working on your hand too, but had ended up using further up on your arm. You had a cannula in, and that was giving you the anaesthetic and morphine.
They had did as we asked, and had wrapped you in your white fluffy, and had your dummy attached to your baby gro, but they said you shouldn't wake up until you reached Yorkhill, it was a race against time for you.
They blue lighted you in the ambulance over to Yorkhill. They told us not to follow them because if they had to stop for any reason, and we panicked, it would make their job more difficult to do. So Mummy and Daddy jumped into a taxi, and asked to be take to the train station. We were racing your ambulance.
We managed to get a train quickly, and made our way to Glasgow. Once off the train we jumped in yet another taxi, because at this time we weren't sure where Yorkhill was, and this was the easiest way.
I remember Mummy and Daddy running into the hospital and asking the lady at the desk if you had arrived. She said you had just arrived and directed us where to go.
We ran up the stairs because the lift was taking too long and we pressed the buzzer on the Intensive Care Ward. Because Mummy and Daddy had just raced across from Edinburgh, we still had all of our bags and your things, but that was ok, they understood. When we entered the ward, we saw the doctor and nurses from Edinburgh wheeling away your pod, and you weren't in it. They waved and wished us all well.
The doctor showed Mummy and Daddy into a little meeting room, that they had set up 2 camp beds in, and said we could leave our things there. They had no spare pillows so we had rolled up towels to use instead.
We were shown to where you were, another isolation room, and asked to put on a yellow apron. Once inside the room we washed our hands, we couldn't approach you until we did this, to protect you from more germs. And then we saw you.
You looked so so fragile. You were lying on this little bed that could be tilted in various angles, it was a little too small for you, but they said they were waiting on another one coming up. They had taken all of your clothes off you, apart from your nappy. You were still unconscious, and were hooked up to more machines and monitors than we had ever seen in our life. (When Great Ormond Street Hospital is on TV now, we know what all the machines mean and all that they do, and understand all the numbers, and that is not always a good knowledge to have :-( )
You were hooked up to so many drugs, and some glucose, they wanted you to be strong for your operation the next day.
The doctor came in, I struggle to remember his name, but his nickname was Doctor Trev. He was all tanned and looked very fit, and he spoke to us using a very informal manner, like we weren't your parents at all.
His first words to us were "it's not looking good for your boy, is it?"
Mummy and daddy were shocked, and became upset, and so angry. We had never been told this before. The doctors at the last hospital had said you were going to be ok, that you were going to grow out of these issues. Why was he saying you were going to die? Why had he said that to us, and scared us? We became inconsolable Haydon, and you were oblivious because you were asleep still.
Mummy and Daddy were told, no arguments, to go and eat and rest. We couldn't eat or sleep though. Who could after being told all of that?
First thing in the morning Mummy was on her phone, calling your last ward, and demanding to speak to your last doctor. He was annoyed that Dr Richards...I've remembered his name now.....He was annoyed that he had said that to us within minutes of meeting you, and us. He was angry that we had been made upset, when we were already in a mess, you had gone through the mill that day, and so had we.
He reassured us that you would get your heart surgery and you would be fine in time. You weren't though were you, and Dr Trev was right. :-(
You were awake, although groggy when we came through to see you in the morning. Mummy did all your cares, that means she cleaned you up and did your nappy and eyes and lips and tongue, she washed you, and put your mrsa treatments on that were so much more gentle than how things had been in Edinburgh, and both Mummy and Daddy felt a sense of peace, this hospital were going to help you, this hospital were gentle and cared, and even their touches to you were gentle, you weren't scared of their touches here...yet.
Mummy and Daddy got you all settled, and you slept.
The time came for you to go to theatre for your heart surgery. They told us one of the riskiest parts was getting you down to the Cath lab for your operation, you had to be removed from your ventilator machine and they used the green bag to blow air into your lungs to help you breath all the way down. Your cot was attached to so many monitors and emergency oxygen cannisters and all sorts and they wheeled you away, we kissed you and told you to be so so brave, because we needed you. You looked us in the eye, and we were sure you were telling us that you were going to be ok.
Mummy and Daddy were told to go and be busy, you could be 4 hours or more. So we went into town and bought you some funky new baby gro's. You never got a chance to wear some of these though Haydon :-(
Uncle Bobe came through and met with us, and we all waited for news. We were all a mess. We got ourselves booked into Ronald McDonald House by this time, and we spent some time there, hanging about, waiting for news. All the while your family back here were sitting patiently, but anxiously, waiting to hear that you had survived your operation, and that you were ok. You can't even describe that experience to anyone..knowing you could have been wheeled away in that cot and it could have been our last time to see you awake, ever.
But word came. you were ok. You were a fighter. You were already trying to wake up. They felt hopeful about your operation.
that was a year ago today Haydon. How can it be a year. How can it be a whole year since we went through all of that with you, and yet it only feels like a few weeks ago.
We felt hopeful. We were told this was going to make you better.
It didn't help though did it baby, it only added to your suffering. The horrors of more were to come.
So unfair. Seems so pointless. If we had known Haydon, if we had really known, would we have allowed your tiny little vulnerable body to go through all of that, would we have had you face so many new people and fears....we don't know if we would have.
I am sorry we let you go through all of this Haydon. We are sorry.
We couldn't protect you, but we were trying to help you.
We love you, we just do, and that will never change xxxxxxxxxxxxxxxxxx
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