The Loss of Our Son

 This blog post was a very difficult one to write and I have no doubt that it will also be a difficult one to read. Particularly if you have or have a had a child or an experience similar. This is not a happy post and if you're looking for one I would advice you leave this blog. This is also a very long blog post so please don't feel that you have to read it all. I've tried to include as much detail as possible. I have not proof read this post so there may be some spelling/grammar mistakes. It was to difficult to go through twice.

On the evening of Friday 22nd February my partner and I were debating whether or not we should go out for the first time since my son, Ted, was born. Our friends band were playing at our local pub and we usually make as much effort as we can to go and support them.

We were cycling through the names of people we would trust to look after our Ted for the night and the only obvious choice was my mum, but we still weren't sure if we should leave him.

In the end we decided we wouldn't. I'm so glad of that.

We spent the evening in watching movies. and having cuddles with our boy. He was 23 days old at this point and still really tiny. He had been weighed the Monday previous to that and had just made it up to 5 lbs.
When I picked him up to give him his last feed and change before we went to bed I noticed he was really cold. When he was born he'd had trouble holding his temperature and was on and off the heated cot in the NICU for the two weeks he was there. His head was always colder than his body was and his hands got cold easily too. This is why I was told to check his temperature from either his chest or his back and this is why I panicked this time.

I first picked him up to change his nappy and it wasn't until I un-wrapped him from his blanket did I realise he'd been sweating a little. (We have no central heating in our house so were using storage heaters. The temperature got really warm very quickly and it was so difficult keeping the temperature set to the right place.) I thought he'd got over heated as we'd had the heater on all evening but when I touched his chest he was really cold. So, we fed and changed him as usual and wrapped him up extra warm. His body temperature rose but we hardly slept all night keeping an eye on him and checking his temperature regularly.
I should take this time time to go into our housing situation. While we were trying to get pregnant we'd moved from the first house we lived in because it was ridiculously expensive to run as well as having damp problems. The house we moved to was very near my mum which was a good thing but had way more problems that we first thought. There was no central heating whatsoever. We had four storage heaters to the whole house and when we contacted our estate agents to fix the problem after I got pregnant there solution was to buy more storage heaters - which we could not afford to run. We planned extensively for this baby and just when everything started to happen our plans seemed to fall apart around us. My Partner was let go from his job whilst I was six months pregnant and I was on sick pay at the time due to some major panic attacks. I had to go back to work at seven months pregnant and work right to the day of my due date to be entitled to any maternity pay (and not enough to do anything with truthfully). SIDE NOTE: the job that I had was terrible and did not really operate to the regulations they were meant to. I left my job, which gave us more entitlement to the benefits we so desperately needed to get by. Paddy searched so hard to find a job but in a town like the one we live in there isn't a whole lot available. We barely made it through rent every month and stopped paying our water, council tax and tv licence just so we would have enough money for heating and food. We put in an application for council housing but were pushed further down the list because we had a roof over our head. We were completely abandoned by our government and left in a situation that was not safe for us or our child.

On the morning of Saturday 23rd February we changed his nappy and fed him. He didn't open his eyes and only manged about 10 ml of milk before he really couldn't eat anymore. I led down on the bed with him next to me as my partner tried to ring someone to ask for advice or help. That morning we'd noticed that he was making a very odd noise when he was breathing. It sounded a little phlegmy and I genuinely thought he'd picked up a cold. Paddy tried ringing the health visitor first but apparently they aren't open at all on weekends (very helpful) so we rand the on call doctor instead. He explained that our sons temperature was lower than it should be and that he was making a bit of a funny noise when he was breathing. They didn't seem to concerned so we were still fairly relaxed about the whole situation. They listened to his breathing over the phone because we were having trouble explaining what it sounded like and there next question was how old was he. As soon as we told them he hadn't long past three weeks we were told to ring the ambulance immediately. By this point I was panicking.

We went through the same call with 999 whose first response to the situation was to talk us through giving him mouth to mouth. Paddy went into autopilot mode talking on the phone with the paramedics and doing everything they were telling him. I on the other hand could barely breathe. I'd started crying the minute they'd told us to ring the ambulance.

We were barely on the phone for two minutes when an ambulance arrived. I answered the door and at first stood in the room as they were trying to get a response from him. I had to leave the room when they were trying to get a breathing mask on him. They'd bought a child's mask but it was way to big for him. I texted my mum saying there were ambulances at our house and she ran the two blocks to ours straight away.
By the time she arrived there were two ambulances and a first response car. I couldn't have got in the room even if I'd wanted to. I started packing his bag and got my shoes and jumper on ready to go. I was determined I was not leaving him.

As it happen both Paddy and i were allowed to go in the ambulance with him. I held him the whole way. they'd wrapped him up in a blanket my nan had crocheted for him before we even knew he was boy and I had to hold the too-bid breathing mask just above his face. We drove the half hour to the hospital in under ten minutes. I spent the whole journey looking at his face. Half way there he opened his eyes. It was the first time he'd opened his eyes since the morning of the previous day (this was not un-usual as he slept all the time and had to be woken up to feed - where he'd usually keep dropping off through. He never really cried). It was also the first time he'd ever focused his eyes on me and the last time he ever opened his eyes.

When we got to the hospital we were rushed inside were we sat in the corridor for five minutes. We were then ushered into a side room where we had to explain everything that had happened and they tried to take Ted's temperature. They couldn't get a reading. So we were moved to a treatment room in A&E and we had to explain everything all over again and they tried to take his temperature - again. They still could not get a reading and that's when I placed him down on the table . If I'd have known that was the last time I'd really be able to hold him whilst he was alive I may not have let him go.

We stood in the edge of the room whilst it filled up with people and they all tried to put I.V drips and everything into our son. We had the head consultant of the A&E department; the head consultant of the pediatric department; two more consultants for something and about five different nurses.

They told us that his hand was still bruised from the I.Vs from when he was in the NICU, so they couldn't find a vein. In order to get fluids into him they had to put the line into his leg. The last noise I ever heard him make was a little squeal when they did that.

Paddy was on the phone to his sister at this point because this was the day that she was meant to be coming down to see Ted for the very first time. She turned around on her way to our house and headed to the hospital arriving at about this time.

We were told to stand outside the room in the corridor whilst they tried to put him onto the ventilator. they were doing this because he hadn't been absorbing all the fluids he needed properly and they were scared that the fluids they were pumping into him would build up on his lungs and cause a problem.

Paddy, his sister and I sat in the waiting area for what seemed like hours occasionally being told snippets of information about what was going on. Every now and then we would have a doctor come in and tell us very matter of factly what was happening and then, two minutes later, have a nurse come in to explain what was happening in a more friendly way. We didn't have a clue.

Then a nurse came in to tell us that while they were attempting to put him on the ventillator his heart stopped. They managed to get it started straight away and despite all this I was still convinced that everything was going to be fine. I was surprisingly calm after we got to the hospital and I just could not let myself get worked up. I had to be here for my boy and that was all I was worried about.

They were getting ready to move him to the ITU (there was no children's ward for this sort of thing in this hospital so it is an adult ITU - both my brother and I spent some time in there as children). Before they could move him though they did have to get the ventillator in. At this point my friend who was upstairs on the maternity ward came down to see us. She'd heard we were there and told the nurses she was my sister so that she could get in the ward. Ted was moved to the ITU and we had to move to yet another waiting room. My friend (who was due to drop at any moment) and Paddy's sister stayed with us. Paddy's parents were also on the way.

The first time we knew that things may not get better was at about four in the afternoon. The pediatric consultant came to talk to us not long after Paddy's parents had arrived. He was telling us that they had called Cardiff and they were sending an ambulance and two specialist consultants to come and move him down to Cardiff University Hospital. He was going through what he thought might have happened (I can't remember what he said) and Paddy asked "He is going to be okay isn't he?" I hadn't even thought to ask, I just assumed. The doctor basically told us that he had a very slim chance and that he was surprised he'd even made it this far.

I broke down.

I just started crying and I couldn't stop. My friend didn't let me go. She was amazing that whole day. She took my phone and rang my mum, telling her to just get to the hospital now. (to put some perspective into that act - she hates my mum. like really hates my mum. My mum also really hates her and there's a whole history there that I wont get into) She arrived so quick.

Paddy and I got to go into the ITU then. They'd got the ventillator working and all the IV's in. The Cardiff team had arrived and they were busy moving them to the portable packs so they could move him. He was in the same room just off the ITU that my brother had been in when we nearly lost him. I could barely stand there. On one hand I couldn't look away from him and I couldn't leave, and on the other I just wanted to be somewhere else. Anywhere else.

They'd stripped him down to his nappy in order to get at all the tubes and everything so the first thing I did when I walked into the room was pick up his vest and sleep-suit. I just held them up to my face so I could smell him. I just wanted to pick him up so badly.

When they were ready to move him the gave us the address of the hospital and told us not to follow the ambulance in case they needed to pull over for anything. We got to kiss him goodbye and then we left the ITU. Everyone there had just stopped what they were doing. From the minute Paddy and I walked in. All the nurses were lined up outside the room just watching and all the patients just watched us leave. One woman was crying in the corner as she watched us.

We went back to the waiting room to get everything that was ours so we could get in the car and get down to Cardiff quickly. We said goodbye to our friend who we promised to keep informed with every little detail and my grandparents and mum got ready to leave. Paddy's sister was going to stop at friends house on the way home and his parents were taking us to Cardiff. When we all got into the corridor Ted passed with the consultants on the way to the ambulance and everyone just stopped.

From this point everything gets a little hazy for me and I only have a few main points until the Monday.
We got to Cardiff fine without getting too lost. We did go the long way round but we got there not long after Ted did. When we found the right ward we pressed the bell and told them who we were. They were just getting him settled in and switching the machines over so we waited for a little while.

We got to see him that night. We sat there for hours. We talked to the consultant that picked him up from the hospital and she said she would be there for the rest of the weekend so he wouldn't be handed from person to person. She gave us a rough outline of what was happening but I don't remember a word she said.
We were given parent accommodation in a space not too far from Teds ward.

The next day we just sat with him all day. we kept everyone updated with every little thing that was happening. I went through £10 worth of credit in just that day. Over night it turned out that Ted had stopped peeing so was holding all of the fluid they were pumping into him. He was so puffy he didn't even look like the same kid. They'd done every test they could think of and nothing had come back. The last solution was to try dialysis to clear his kidneys and that would give them longer to work on the underlying issue that was making everything else more difficult to deal with.

If that didn't work they didn't have any other option. Because his kidneys weren't working his potassium levels were getting higher. If they got too high they would stop his heart.

They did dialysis that night after the other parents had left their kids for the night. We asked if we could stay. They reluctantly agreed. They didn't want us there in case something went wrong, but that was precisely why we wanted to be there. If they were going to be his last moments I wanted to be right there with him.

They tried it once while we were there but ted was so small that he just didn't have enough blood to go around the machine and his system. The first attempt failed and as they were getting ready t try again we got to sit with him. The force of the situation hit me and I instantly felt sick. The nurses did get me a bowl in time but apparently I'm the first person they've had that's thrown up because of the news their son might not make it. I find that hard to believe.

After that Paddy insisted we go to bed. I hadn't eaten in two days and I'd thrown up so I was running on less than empty. The next morning we went to see Ted straight away. Dialysis was attempted one more time in the night and it did not work. I didn't want to give in to the fact there was no other option but I knew. My parents arrived that morning too, along with my mums boyfriend and my uncle who gave them a lift.

They hadn't been there long when Paddy and I were called in to see the consultant. Everyone else sat in the waiting room and we were called into a side room. When I got there the first thing I noticed was the full box of tissues and stack of sick bowls they'd bought in. When we sat down the consultant said that she was just waiting for the nurse before she got started. That's never good news. Two members of staff in a private room only means one thing.

We were told that there was nothing more that they could do. There were only two options left for us. We could either turn off the life support machine that was keeping him alive or we could wait until his potassium levels got so bad they would stop his heart. I just went dead. I couldn't cry and I didn't throw up. I just didn't know what to do. Paddy went outside to get my parents and to call his mum. I was hoping he would come back into the room to call them. I didn't want the other parents to go through our grief.

My mum just hugged me straight away and I had to tell her that Ted was going to die meanwhile all I could hear through the door was Paddy loosing it. He's called his mum and as soon as she'd answered he'd began crying uncontrollably. My dad went out to him and took the phone. He got as fart as "I'm sorry" and Paddy's mum and hung up obviously thinking that he'd gone already.

I don't know what happened after that. We sat with Ted until Paddy's mum, dad and sister turned up. Paddy's sister lets her emotions go and as soon as she walked in the room she was loud and it hit everyone again just what was happening.

We left the room so that they could turn off the heart rate monitor and take out all the IV's. They turn off the heart rate monitors so that when they go the machine doesn't make that horrible beeping noise and then just stop suddenly.

When we got back in the room they gave Ted to me. It was the first time I'd held him since we'd bought him in two days earlier. Once he was settled there, the ventillator was taken off him. It was without a doubt the worst day of my entire life. I don't think anyone ever prepares you for the noise people make when they're trying to breathe. Even then I kept hoping he would start breathing on his own but it just wasn't the case.
My beautiful baby boy passed away on Monday 25th February.