6 Months On...

For probably the first three years of a child's life, their age is marked in months rather than years. Each month is clocked up by proud parents and some are seen as real milestones. Emma was born six months ago today and it kills me that she isn't here for us to mark it with us. But I am going to mark it. I'm going to mark it by doing something that I've been putting off since I started to write this blog. I'm going to tell the story of the two days between when she was born and and when she was taken away from us.

She was born by caesarian, in the evening at twenty three minutes past nine. She was a good size 6lb 5oz considering it was three weeks early, and seemed fine. There had been worries about her kidneys throughout the pregnancy and we knew she was going to need some scans to determine how healthy they were, but we knew that we had a day or two so we were just enjoying the moment. We didn't even take any photos at that stage, as far as we were concerned we had all the time in the world. She didn't feed though. To be honest we weren't that concerned about it, "she'll feed when she's ready" we thought. Rach was taken to the ward and the midwives took Emma to be fed, I stayed with Emma. She still wasn't feeding. She was also, what the midwives called, "moaning". Easiest way I can describe what moaning is like is a soft whimper, that breaks your fucking heart.

A paediatrician was called. He listened to her chest. He wasn't happy so Emma was moved to the special care baby unit in Wrexham Maelor hospital. This is probably when alarm bells should have been going off in my head, but they weren't. I was totally convinced that everything would be fine. Seeing her in SCBU though was an eye-opener. The consultant was called ard her initial diagnosis was heart lesions. Two hours earlier I was a father looking forward to watching my little girl grow up, now I was looking forward to her having open heart surgery. I was devastated then, but looking back now the possibility of surgery would have been a godsend. They called Alder Hey to see if a bed was available and arranged for her to be transferred early in the morning. Rach, after her surgery was bed ridden so they wheeled her in to SCBU to see Emma before she was transferred. Prepping her to be moved took what seemed like an age. They intubated her hooked her up monitors and wires and drips. They sealed her in a capsule with her little Miffy soft toy and they took my little girl away in the ambulance.

So as the sun was coming up on the morning of the 10th of Novemeber, I kissed Rach goodbye and left her with her mum to drive to Alder Hey alone. I have never in my life felt as lonely as I did on that drive. I called my mum, asked to come over from Ireland. She realised that the situation was serious and started to make arrangements. I think I arrived in Alder Hey about 8 in the morning, I'm not sure about any times. I went straight to the Paediatric Intensive Care Unit and was asked to wait in the relatives room. I met a man there who told me about his little girl, born 16 weeks premature. He'd been there for a month. He showed me a picture of his little girl. His "little Thumbelina" he called her. Her outlook was serious and he'd been told on three occasions that she wasn't going to survive. "Look out for them taking you into a side room" he told me, "that never means good news".

I'd waited in the relatives room for almost an hour when Julia, the nurse who looked after Emma in the day came to get me. She brought me through to see her. She was intubated and sedated and so, so ill, but still gorgeous. I sat and held her hand and talked to her. Julia explained what all the monitors for. I couldn't for the life of me tell you what the are now. The doctors came round and gave their diagnosis. They told me that no lesions were detected in Emma's scans, that the struggle to breath and eat was likely caused by mucus in her lungs, that they would monitor her for a day or so, but the mucus would come up and she was going to be fine.

I was elated. Things were serious there was no doubt about that, she was still in intensive care, but she was going to be fine. I phoned Rach and everyone else who waiting to give them the good news. Then I settled into my day interspersed between a little sleep and sitting with Emma. That evening I left for a little while. The plan was pick my mother up from the train station, check in on Rach and maybe have a shower before heading back. So collected my mum and stopped in on Rach, but while I was there I got a call, asking when I would be coming back to the hospital. Emma had taken a turn for the worst. Again, I made the lonely journey to Alder Hey. I was met on my way in to PICU by two consultants and Emma's night nurse Helen. They suggested that we go into a side room to talk. This time the alarm bells did go off. The consultants told me about her turn for the worst, that as the day had worn on Emma's scans had passed in front of progressively senior consultants. The higher they went, the grimmer things seemed. What had been missed up until now was that the muscles in walls of Emma's heart were far to large, meaning the chambers were too small, meaning not enough blood was being pumped round her little body. The outlook at this stage was bleak. I called Rach to let her know and she began to make arrangements to be discharged. Her brother came from Derby to pick her up and drive her to Liverpool. When she arrived she could barely walk, she'd abdominal surgery just over a day earlier and realistically shouldn't have been out of bed. I borrowed a wheelchair and wheeled her up to PICU. We were met again by a consultant. He took us to a side room, again, and explained Emma's condition again for Rach's benefit. This time it seemed bleaker then when he filled me in. We stayed with Emma until the small hours and then went home for a couple of hours sleep.

The next day, my mother, Rach's parents and Laura (Emma's big sister) came back with us to the hospital. We went in to see her in twos. Everyone said how gorgeous she was. No one said how ill she looked. I don't think we saw it to be honest. There was a support worker there who was assigned to us to help Laura understand what was happening. We also met Caroline the chaplain. She arranged Emma to be christened in a simple ceremony that afternoon.

Our parents took Laura home that evening, Rach and I stayed. Not long after they had gone, we were invited to a side room for the last time. We were told that her condition was deteriorating and that to keep her alive they were going to have start performing more and more invasive procedures. We were given the easiest most difficult decision that we ever had to make. Ramp up the amount of procedures, making Emma more uncomfortable with no hope of her surviving. Or we could let her go peacefully. As far as we were concerned there was no decision to be made. We stepped outside and phoned our immediate family to let them know what was happening and went back to the ward to tell them to start taking the tubes out.

Except the ward was closed. They were performing an emergency procedure on some other child and non-staff were sent to the visitors room. That was the most horrible hour of all, just waiting. There were three other parents there, a mother whose son was having hip surgery, another mother with an ill little girl, and a father whose newborn son had some kind of genetic syndrome and was very, very ill as a result. I sometimes wonder what happened to all of them, mainly the father.

When we finally got back to the ward, we told them our wishes. Before moving Emma to a private room they started to tap off some of the redundant medication lines. Rach panicked. She asked them to stop and asked to see the consultant again. She only had one question: "can you make her better?". The answer was no. We were introduced to James, the Berevement.... something. His job was to support families going through, well, what we were going through. At the time he was just a stranger, and what the hell was he doing there? When I think now of what a rock he would be for us over the next few days it embarrasses me that I thought like that.

Emma was moved to a private room. The tubes were taken out. The wires were removed. She was wrapped in a blanket and handed to us. She didn't have the strength left to breathe on her own, not even once. In a few minutes she had slipped away. Emma had left us, less than two days after she had arrived.

We washed her. Put lotion on the dry patches of skin where tape had held in lines. We dressed her in clean warm clothes, and wrapped her in a blanket. We took some photos, and sat with her a while.

Well that's the story. Near killed me to write it, so I think I need a pint now. I think I'll drink to my little girl. Happy 6 month birthday sweetheart.