Monday 20 July 2009

Saturday 28th March- the day the bubble burst

Saturday 28th March has got to be the worst day of my life so far.

We had been up with Joe most of the Friday night, taking it in turns to try and settle him with no joy. Saturday morning arrived, and Joe would not feed again. Phil brought Joe into our room while I got showered and dressed. We were not sure what time the midwife was coming and my mum, dad and sister were also coming to Leicester to meet Joe for the first time.


One of the happier memories of the day was Phil reading Joe the Leicester Tigers rugby game review out of the paper. Shortly after this, i decided to get Joe washed and dressed, while Phil had a shower. The only thing I remember was Joe's nappy being dry and he was cold and "limp". Again, I put this down to the fact that he had not fed much. I dressed Joe in his little Roo outfit that my mum and dad had bought him (as they were coming up). I remember laughing with Phil about how big it was on him, especially the little hat. We joked around saying that he looked like a little smurf. At the time, we did not notice the colour change in Joe. We decided to put a different hat on Joe (this was to become his lucky hat).


We took Joe downstairs. I was going to try and get some sleep on the sofa, and Phil was pottering around. I was concerned that Joe felt cold, but we decided to wrap him up some more, and put him in his bouncer. I was just falling asleep, and the doorbell rang. It was Vicky the midwife. I said to her that I had a few niggles, but was concerned that Joe was not feeding, and Phil mentioned the coloring on his face. Joe had gone "blotchy".

Then, hell opened up. Vicky took one look at Joe and told Phil to go and warm some blankets, told me to take off my top and do skin to skin. He was so cold against my skin, and was not warming up. She tried to take Joe's temperature. It was only about 32 degrees. She looked panicked and rang 999. I remember bursting out into tears, and she tried to reassure me that it might just be an infection, but better to be safe than sorry. She told Phil to pack a bag for me in case we had to stay in over night.


Next thing I know, there were paramedics in the lounge. I asked Phil to call my mum and dad and tell them not to leave Colchester yet until we knew what was happening. The next thing I remember is being in the ambulance getting annoyed that cars would not move out the way. I was holding Joe so tight, holding oxygen to his face. I remember him just looking at me. He looked so scared!


The next thing I remember is Joe being taken off me in A&E. I just stood there at the end of the bed. Someone asked me to move back. I remember there being about 7-8 people all around Joe, trying to get lines into him. I caught on to the fact that they were struggling. I just stood there and cried. Then i realised that Phil was there too. I remember someone trying to explain to me what the medical staff were doing, but i could not take it in. I just wanted to scream at them to leave him alone... to stop crowding him...to stop trying to stick things in him. But i couldn't. I was stunned that this could be happening... to us....

I do not know how long we were in A&E for, but the next thing I remember was a nurse saying that they would be taking him to Intensive Care, where they would run some tests to try and find out what was wrong. I do not remember walking to intensive care. We were told to sit outside the intensive care ward, they would get Joe settled, and would then come and get us, in about 10 minutes.

The ten minutes turned into about 2 hours. They had stopped anyone else entering the intensive care ward, and remember being made a cup of tea. I remember phoning my mum to say that they are not sure what is wrong, and that i would ring them when i had any more updates.

The next thing I remember is being taken into a little room. Now I am not sure how many times we were spoken to in terms of what was wrong with Joe, and I do not even remember seeing Joe before we were told what they thought was wrong. I knew that being taken into this room meant that it was bad news, epsecially as a nurse was there as well. In fact, I am pretty sure that we went into this room twice to be spoken to... but I only remember being told that that they thought that Joe had a condition called Hyper Plastic Left Heart, which meant that the left side of his heart was too small and that also, his aorta had not grown properly. We were also told that he had renal failure, and that because of this issue with his heart, his body had started to shut down.


I also remember being told that we could be referred to another hospital that dealt with Hyperplastic left heart, and this could be Birmingham. I was not able to process this as we were also told that Joe was in a very critical condition and that they could not guarentee what would happen over night..

Phils mum and dad came to the hospital to see Joe, but i cannot remember at what point, and I also cannot remember speaking to my mum or dad again, but the next thing I can remember is hearing my mum in the corrindor (me and Phil were still in the little room at the time), and running out, and just holding her so tight, asking why this is happening to our baby... what I have done so wrong that this happens to me? I didnt want to let go of her, I just wanted her to make everything better, but deep down inside I knew that she couldnt and that I just felt like screaming feeling that my world had ended, terrified that we were going to lose Joe, but at the same time, knowing that somehow, we had to make a decision as to whether or not to put Joe through operations that were high risk at just a few days old, having to consider his quality of life afterwards.


My last memory of the day is arriving home, we had a carrier bag with milk and a can of coke. I remember walking into the lounge with everything as we had left it in the morning (Joes blanket still in his bouncer etc), and throwing the bag across the lounge floor. The milk went every where but I didnt care. I was so angry! I dont even remember going to bed that night, but I remember hearing a baby cry in the middle of the night, which I must have dreamt, as a few seconds later, reality struck that Joe was not in his cot... Joe was in instensive care, on a ventilator, on drugs to keep him alive....




This was Joe on the Saturday morning, about an hour before the ambulance was called.


The "blotching" on his face was caused by his body shutting down.








This is Joe in Intensive care on the Saturday evening. He was swelling because his kidneys were not working. The swelling got a lot worse

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