Friday, 21 August 2009

The Day after Joe's Operation to bringing him home again

The next few weeks were pretty much a waiting game. Everybody kept telling us that "it is up to Joe" on how quick things happen in terms of recovery and so on. I cannot remember much about Joe being in intensive care after his operation to the point that he left intensive care... I just remember feeling a sense of normality-sitting by his bed everyday, for 15 hours or more a day.

For this reason.. I can only really outline what happened.........

Thursday 2nd April
Thankfully, Joe did not have another cardiac arrest.
Joe had a stable night, even though everyone was expecting another arrest. The doctors and consultants, including Joes surgeon said that they were pleased that there were no negative events over night.

Joe had to be given another drug to help him cope with the fact that that he had an empty stomach.
We spoke to Joes surgeon in the afternoon. He said that he was pleased with Joes progress

Friday 3rd April
We were told that they wanted to try and close Joes chest, but leave the breast bone open.
Joes eyes were moving, and he was trying to swallow, so they had to put him on ROC again (a drug that kept him alseep and paralised).
Another heart scan was completed, and everyone seemed pleased with the progress, although we were told that his right ventricle was weaker than required. This was apparently an issue since the operation and we were told that this would be monitored.

Joes chest was closed at about 11am, and they confirmed that the flow of blood to his lungs had increased slightly, and that the breatsbone remained splinted.

The plastics team had looked his his ankle as one of the cannulas had disintegrated into his vein. We were told that this needed to be monitored to prevent longer term damage.
We were also told that they were starting Joe on Expressed Breast Milk (EBM) intravenously, along with fluids.

Saturday 4th April.
Joe had a good night.. he had his adrenaline reduced significantly. And there was plently of urine. The surgical team advised that happy with Joes progress, but we had a huge reality check when we were advised that it was 50/50 that Joe would make it. His Kidney and liver functions were improving, although his kidney function was plateauing due to drugs being given.

The pastics surgeons told us that they think Joes ankle will be OK, but would continue to monitor it.

Joes started to move his eyes and mouth, however, no one had told me that they had taken him off the ROC again, so when I bent over to kiss him, and he opened his eyes, I nearly screamed, as I was not expecting him to do it.

Sunday 5th April
Joes Frusemide (drug to stop fluid building up) was stopped overnight with no decrease in urine. Joe was wide awake in terms of moving his eyes and mouth, and there was also a small amount of toe wigling.

However, the side of his head was swollen... we were told that this was due to lack of movement

We helped to wash and moisturise Joe. We then walked into town as needed to go to mothercare... phil bought Joe a cow and another lucky hat.. when we got back, they had removed Joes abdominal drain. Joe was sleepy again due to sedative,so we spent the afternoon watching him drift in and out of sleep.

Joes ventricles started to be paced externally by the pace maker...I remember being really concerned. We spoke to the doctor, who done an ECG straight away for us, and explained that everything was OK.

Monday 6th April
There were no changes overnight. His Surgeon explained that they would remove the splint from his chest and close the skin, but would not close the sternum. The Plastic surgery team (4 of them) came to look at Joes foot.. again, they said that it looked OK, but would continue to monitor.

The surgical team advised the nurse looking after Joe that if they did not do the work on joes chest straight away, then it would not be done until the day after... this was started at 10.30 so we went back upstairs to our room. We were told that this would take an hour.. finally at 12.30 the nurse called to say that we could see joe. The surgical team had already left when we got there. The nurse said that the stent had been removed and the chest re-stitched.

I changed Joes nappy for the first time since he was taken ill . I remember feeling really scared because of all the lines that were going into Joe. I was worried that I would pull something out. The nurse kept re-assuring me saying that this would not happen.. Finally, Joe started to feel like my baby again.

Both me and Phil started to get frustrated, because the communication between the medical team and us had decreased, so we did not really know if things were going well. In the evening, Phil managed to find out that they they were happy with Joes fluid balance (although it was climbing a little) and EBM was increased to 4ml an hour.

Tuesday 7th April.
Joe had a small "event" in the middle of the night. The doctor had tried to take a line out of Joe, but Joe got upset about this. His heart rate spiked (over 230 beats per minute), but again, we were told not to worry as they knew what had caused this. This is called Supra Ventricular Tachycardia (SVT).

Finally, Joes chest was closed. I remember feeling like a huge weight had been lifted off of us.

Wednesday 8th April
Joes Pace maker was turned off.

Thursday 9th April
Joe had the ventilator tube changed to be a "short tube". This was the start of Joe breathing on his own.

Friday 10th April
Joe was OK overnight. His short tube was removed at 6.30am , but Joe was not coping very well with breathing in his own, so it was put back in, despite 30% oxygen blown into his face... the doctor assured us not to worry and to give him more time.

Saturday 11th April
Joe's short tube was taken out again and he was put into an oxygen box at 9am.... Joe was then given no additional oxygen from 14.00. For the first time since the 28th March, we were able to dress Joe and we were also able to hold him again.

Sunday 12th april
Phil woke up really early (about 4am from what I remember) and went down to see Joe. Joes arterial line had been removed. This meant that Joe could be moved out of intensive care and up to the high depency ward as soon as there was a bed available.

At 11am, Joe was moved to the high depency section of ward 11.

Monday 13th April
Joes feed was increased to 18ml hour

Tuesday 14th april
Phil had to go back to work, so he went in for the morning. The nurse had removed Joes heated matress, and I remember being very concerned about how cold Joes hands were. Joes milnirone (a drug to support Joes heart) was reduced, and his feed went up to 20ml an hour. Joe also had to have a 24 hour ECG to make sure that everything was OK before they could remove his pacing wires.

Wednesday 15th april
Joes milnirone was stopped.
He also had his pacing wires removed. A scan had to be done to check that no trauma had occured when the wires were removed. Everything came back fine. Joe also had his line removed from his neck

We got to hold Joe again, and for the first time, Joes sats monitor switched off while we held him.

Thursday 16th april
Joes bolus feeds started. I tried to breast feed, but struggled, so we bottle fed Joe.

Friday 17th April
Joe had another SVT (heart rate too high) during the night, but this time, no one was sure what caused this, so we were told that this would be monitored.

Joe was now being bottle fed by day (40 ml every 3 hours... increasing to 60 ml every 3 hours)

Saturday 18th April
Joe now weighed 3.44kg.. which everyone was pleased about as he had put on weight.

Sunday 19th - Thursday 23rd april.
The next few days were quite frustrating. We had to wait for a bladder scan to be done before they took out Joes Catheter. This was the only thing that was stoping us from going home, so was a waiting game for them to take out the catheter and confirm that everything was ok.. I started to really struggle, and started to feel really low. Luckily, Joe shared a room with another baby called Charlie, and if it wasn't for Charlies Mum, I would have been climbing the walls.

On the Wednesday night, me and Claire sat and watched the apprentice. The babies were alseep, so did not have to worry about them. I started to feel normal again that night. Phil had been to Uni, so me and Claire had been on our own most of the day. I have a lot to thank her for, as she kept me sane while Phil was at work and Uni.

Finally, we were told that Joe could go home, and we could go at about midday on the Thursday. However, we were slightly delayed as when I fed Joe at 12pm, he vomitted, and I noticed that there was blood in it. Because of this, the nurse said that she wanted us to stay until his next feed at 3pm, to see what happens and to make sure that there was no more vomit with blood. I could have screamed because I just wanted to get Joe home.

Thankfully, everything was OK after Joes 3pm feed, so we were given the green light to go home. I said my goodbye to Claire... knowing that I would really miss her, and we left the hospital.

The day that Phil and I had been together for 9 years.....Finally it was our turn to go home!!

Thursday, 30 July 2009

Joe's Operation Day - 1st April 09

Early on the Wednesday morning, Phil's mobile rang. It was the PICU (intensive care) nurse to say that Joe's operation had been brought forward, so he will be going to theatre at about 9am.

I remember thinking that it was only just over an hour away.. my heart thumping. I was not sure that I could cope with this. We got dressed and went down to the ward to see him. The nurse was getting him ready to go to theatre. She had put cling film over the top of his bed to keep him warm.. which i thought was a bit strange when he had a heater, but I was not going to question what she was doing.

She explained that when the theatre staff for ready for Joe, they would come and get him, and that we could walk as far as the lift with him. Next thing I know, they had come to get him. I did not know whether to laugh, cry or scream.

We walked down the corridor with Joe, I remember Phil holding my hand really tight. We got as far as the lift, and we both gave Joe a kiss. I burst into tears. I was petrified! All that kept going through my mind was that this could be the last time that I see Joe alive. The nurse cuddled me and said that Joe would be OK and that she would ring us as soon as he was back from theatre and they had got him settled.

We knew that the operation would take about 5 hours, so we decided to head back to Leicester to get some more clothes. I think we both wanted to keep busy. I don't remember anything about being back in Leicester, and I don't even remember the drive back to Birmingham.

The next thing I remember is sitting in our room at the hospital. The 5 hours were up.. we fell asleep, both holding our mobiles. We were asleep for about an hour. When I woke up, I remember thinking that something must have gone wrong, as Joe had been in surgery longer than expected, but was also tyring to convince myself that no news was good news.

Just after 8 hours, the phone rang to say that Joe was back from theatre and that we could go and see him in about 15 minutes. We headed back downstairs to the ward... I remember feeling a sense of huge relief that Joe had made it through the operation, and the nurse saying that Joe looked OK.

The next thing I remember is his surgeon coming to speak to us. He explained why the surgery had taken so long. Joe had another cardiac arrest when they went to put him on the heart and lung machine, and he had also lost a lot of blood and had to have a blood transfusion. He also explained that Joe was still very poorly, and could not guarantee that the cardiac arrest had not caused any more damage. In a nutshell, the next 24-48 hours were vital.

After hearing this, and seeing that Joe appeared to be settled, we decided to go and get something to eat. The restaurant was downstairs in the basement of the hospital. Neither of thought to check that we had a mobile signal. After we had eaten, we headed back to Joe. Phil had got an message on his phone requesting that he contacts intensive care. Phil called them, and told them that we were on our way back.

As we walked into the intensive care unit, I saw the woman on the front desk shout something over to where Joe was, and the next thing we saw was the ward sister come and meet us. My heart was pounding. She stopped us and explained that Joe had had another cardiac arrest. I remember bursting into tears and feeling really dizzy. For a brief moment, I thought that we had done the wrong thing putting Joe through the operation. When I looked over to where Joe was laying, the curtains were drawn round his bed. She explained that they had to open his chest again to massage his heart. She got us a couple of chairs, and someone made us a cup of tea. I remember holding Phil's hand, not wanting to let go. I could not believe that this was happening.

The nurse came over and explained what they were currently doing. She explained that luckily, everyone (his surgeon, etc) had been round Joe's bed on the rounds when Joe's heart had failed. I remember looking over to Joe's bed space and seeing blood on the floor. I wanted to make someone clear it up as I knew it was Joe's blood and I didn't want to see it. My head was spinning!

Shortly after, Joe's surgeon came over and explained again that Joe had had another cardiac arrest, so they have put a stent in his ribs to keep them open to give his heart some room, and that they will see how he goes over the next 48 hours before they decide when to close his ribs. This meant that his chest would remain open for a few days more, as they did not want to close his chest when they had out his ribs back together in case something else went wrong.

Then, one of the intensive care doctors came over to talk to us. Again, she explained what had happened and that she was not hopeful that Joe would make it through the night without having another cardiac arrest. In all honesty, I wanted to scream at her.. This was the last thing that I wanted to hear, although looking back, I realise now that she was just being honest and up front, which is what we had asked them to be.

I remember hearing Joe's surgeon saying Thank you to the nurse, and saying what a good job she had done. I was pleased about this, and she was too as she had a huge smile on her face. She ended up working from 8am to 9pm, as she did not want to leave Joe until she knew that everything was OK.

When we were able to see Joe again, all I wanted to do was make him better, I would have done anything to swap places with him, to take away any pain that he was feeling. I could not understand how something so little could deal with all this. People tried to reassure me that he wasn't in any pain, and that babies are very strong, but at the time, I didn't believe them

I remember ringing my mum to say what had happened, but that's all I really remember from that day, apart from going to bed and not wanting to sleep in case anything happened. I remember laying in bed thinking that if anything else does happen, and Joe has another cardiac arrest, then enough is enough.

This is Joe before his operation. The nurse had to put a line into a vein in his head as they were
struggling to get into veins in his legs and arms.
This is Joe's bed space. Phil was not able to fit the ventilator into the picture. The machines on the left hand side of the picture are the different
medications helping to keep Joe alive.
This was taken just after Joe's operation.
This was taken just after Joe's 4Th cardiac arrest after his operation. He looked really grey.

Tuesday, 28 July 2009

The Big Decision

On the Monday morning, we were both up early as we wanted to be back in Birmingham as early as possible. When we got there,we were told that Joe had a stable night, but he was not producing very much urine, and this was because of the damage to his kidneys.

We were introduced to Pauline. Pauline was Joe's cardiac Liaison nurse. Straight away I liked her... Her role was to make sure that me and Phil understood what was going on, and we could go to her if we had any questions. She said that she would put us on the waiting list for accommodation at the hospital and also car parking, but she could not guarantee if and when we would get them.

We asked Pauline if we could speak to an intensive care doctors in regards to where we exactly were with Joe and the operation. Pauline arranged this really quickly. We spoke to one of the intensive care doctors who explained every to us again, and we also spoke to Dr Desai (he is now Joe's cardiac doctor).

We knew that we had to make a decision about whether to put Joe through the operation, or to let him go, so we wanted to speak to every one possible to make sure that we had all the facts. Because of this, we requested that we also speak to the surgeon that would be doing the operation if we decided to go ahead with it. Pauline said that she would arrange this for us.

The frustrating thing about talking to the doctors was that no one would or could say for sure what the outcome would be if Joe did have the operation. Even with his kidneys or potential Brain damage, no one could say what would happen. This scared me as everything was "unknown". I could not get my head around having to make this decision without knowing what the situation would be after if we went ahead and had Joe operated on.

We spent the whole day with Joe. They had to put in a supra pubic catheter (a catheter that went into his bladder through his stomach), as his catheter kept blocking. This was not helping in getting rid of fluid.

The staff in the intensive care ward were fantastic. They would bring me and Phil cups of tea and coffee. I remember sitting at the side of Joe's bed and looking at all the lines going into Joe and to this day, when I think about sitting there, I can still hear all the bleeps from the machines that were keeping him alive.

Pauline came to see us to say that we had got accommodation at the hospital. I was so pleased about this as it saved us driving to and from Leicester every day. The parents accommodation was really nice, with kitchen facilities and so on. It was nice than some hotels that I have stopped in.

We decided to go back to Leicester and spend the night there as we had to pick up clothes etc. On the way home, we got a call requesting that we be back in Birmingham for 8am on the Tuesday morning as the surgeon wanted to speak to us.

So, on the Tuesday morning, we headed back to Birmingham , armed with clothes. I remember waiting ages to speak to the surgeon, but it was well worth the wait. The surgeon was called Mr Tim Jones. He explained exactly what they would do if they were to operate, and was honest in terms of Joe's chances in regards to making it through the operation. He explained that Joe was very poorly, and that there was a 60% chance that Joe would not make it through not only the operation, but the days after the op. I remember him drawing diagrams of Joe's heart and how they would change it. I could not take it in.. I remember watching his hands, not really listening to what he was saying.

After speaking to Mr Jones, I felt a lot more positive, even though there was a high chance that things could go wrong. It was just after this, that we decided to put Joe through the Operation. What was strange looking back, is me and Phil discussing this like we were discussing what we were going to do at the weekend, or what to have for dinner. I think we were both emotionally numb. I think though, this helped in some ways, as we were able to make a decision without being selfish. Neither of us wanted to keep Joe alive just for our sakes, we wanted to do what was best for Joe.

As soon as we had made the decision, we let the intensive care doctors know. Next thing, we were being told that Joe would have his operation the next day - exactly 7 days old, and on April Fools Day. We were told that he would be second, so would be after lunch, but there might be a chance that this is brought forward.
We actually got to hold Joe which was amazing, as neither of us had held him since the Saturday morning. The nurse looking after him offered to take a picture for us. It was the first picture of me, Phil and Joe together. It was so nice to be able to hold Joe, even though he was not awake. I was fully aware that this might be the last time that I get to hold him, so I made sure that I held him tight. I did not want to give him back!

I remember ringing my mum, and telling her, but that's all I really remember from the Tuesday. I remember going to bed in the parents accommodation, and laying there thinking that Joe was on the floor below us, and dreading the next day.
This was the day before Joes Operation. This was the first time we got to hold Joe from when he was taken ill on the Saturday morning
This is the first picture of us three together that the nurse took for us.

This is Joe with his Lucky hat on the day before his operation.

He also has his sheep teddy that Phil bought for him when I was pregnant.

Tuesday, 21 July 2009

Sunday 29th March - the move to Birmingham Childrens Hospital and official Diagnosis

Sunday morning arrived. We had forgotten that the clocks had gone forward an hour. We got out of bed. I was OK to begin with. Phil tried to get me to have breakfast as I hadn't eaten much all week. At this point, I lost it... I was such a mess. My milk had come in on the Saturday night, so i was in agony, and was feeling so angry and scared all at the same time.

I remember bursting out into tears, and then the next thing I remember was Phil passing me the phone. He had rung Fiona my midwife. I don't remember what I said to her, all I remember is crying and Fiona telling me that I could call her/ the other midwifes whenever i wanted if I needed to talk.

I got in the shower. I heard the doorbell ring. It was someone from Phil's work with a present for Joe. I thank my lucky stars that it was not me that answered the door as I don't think that I could have handled explaining what was happening.

My family had stopped in Leicester. I am not sure where, but when we left the house i could see the cars and Phil's mums and dads. We got to the hospital. Joe had a stable night, so they were continuing to try and keep him that way.

Everyone came to see Joe again. Phil's sister had also come down to see him. Looking back, I think people wanted to meet him in case they did not get the chance. My only regret is that my family and Phil's sister met Joe (and each other) for the first time in this situation.

The Play Worker had started a little diary for Joe, explaining what was happening. This made me and every one else cry. It explains to Joe what was happening to him, with photos.. I was hoping to keep this diary going for him, but I put it in my bag and forgot about it... I am gutted about that now..

My family needed to leave to head back to Colchester. I walked with them out of the hospital. At this point, I was feeling OK. I was frustrated that I could not hold Joe, but i think that I was just relieved that he had made it through the night. I showed my mum and dad, my sister and brother and his girlfriend photos that were on my camera. I was trying everything to make them stop that little bit longer. I did not want them to leave me.

I don't remember much else about the morning. The next thing I remember is being told that Joe could be referred to Birmingham Children's Hospital that day and that Birmingham would be able to do further investigations, so this was the best place for him. We agreed that Joe would be taken there.

I remember looking at Joe's toes... his feet were so swollen that his toes looked like they did not fit, and his skin looked as though it was cracking. His eyes were really swollen as well.. he didn't look like Joe anymore, but perhaps this helped in a way as he did not look like our baby.. he could have been someone elses baby.

Sue, the nurse, was fantastic. It took hours to get Joe ready to be moved, but she made sure that everything was done correctly, and in the middle of this, arranged for me to express milk. One of the other nurses even lent us her lunch box so we could keep the milk cool. I don't know what I would have done without Sue that day.

Joe was finally ready to be moved, I think that it was about 6pm by this point. Sue said that she would go across to Birmingham with him in the ambulance. There was a doctor go as well, but I cannot remember much about him. This meant that she would finish her shift really late, but she didn't seem to mind. We were asked if one of us wanted to go int he ambulance as well, but I declined as I wanted to be with Phil, and I knew that Joe was in good hands. We were told by the ambulance crew and Sue not to try and keep up with the ambulance, and that if it stops, we need to keep going, and not stop to see what is happening.

I remember Sue asking whether they had got the Crash Kit, and feeling physically sick when I heard this. I have seen Holby City/ Casaulty enough times to know what a Crash Kit was.
I remember someone saying to me that God is with us, and that he will take care of our son. This really got my back up at the time, and wanted to say to her that if there was a god, then why the hell was he doing this to us.. but all i could say was Thankyou. I know that she was just trying to comfort me at the time, but the last thing I wanted to hear was God was with us.
As it happens, we were in front of the ambulance most of the way to Birmingham. Even though the blue lights were on, cars would not move out of its way, especially on the M69. This was horrible to watch as we knew that it was our baby in the ambulance.

Once we got to Birmingham, the ambulance over took us, so they got to the hospital first. I remember being met by the ambulance crew at the hospital, and being shown the way to intensive care. We had to sit in the family room, and were told that someone would come and get us shortly. I don't remember how long this took, but when we got to Joe, Sue and the doctor were about to leave. Sue gave me a big hug, and wished us luck. I really did not want her to leave!

The next thing I remember is Joe having a heart echo done. This took forever. We were then told what was wrong with Joe. We were told that Joe did not have Hypoplastic left heart syndrome as the left side of his heart was normal size. They confirmed that Joe had:

A ventricular septal defect (VSD) - hole in his heart
An Atrial septal defect (ASD) - another hole in his heart
Hypoplastic Aorta - his aorta was only 1mm thick which meant that his blood could not get to his body
Aortic Valve atresia - his aortic valve was too small.

As bad as it sounds, we were happy that Joe did not have Hypoplastic left heart syndrome, as this would mean that Joe's heart would need to be changed to only have one pumping chamber (Fontan procedure). At the moment, medical people are not sure of the long term outlook for children who have this, and could have meant Joe needing a heart transplant in his twenties.

The cardiologist also said about surgery - and what could possibly be done, and that we needed to decide whether we wanted Joe to be operated on. He also said about 2 cardiac arrests that Joe had while he was in Leicester. This was a huge shock, as we did not know that Joe had 2 cardiac arrests, but this would explain why it took them so long to settle Joe in Intensive Care.
However, this also caused further complications as the doctors in Birmingham were also concerned about Brain damage due to the cardiac arrests. They said that they could do a brain scan, but this cannot guarantee that there is not any damage. This was another blow, and was unsure about how much more I could take...
And, on top of this, we were told that Joe had Liver and Kidney failure (which we knew), but although they were pretty sure that his liver would fix itself, they were not so sure about his kidneys, so further tests would need to be done, and he would also have to be on medication to help his kidneys.
That's all I really remember from the Sunday... apart from the drive back to Leicester. Phil kept missing the exists of the motorway. We were both so tired, but poor Phil had to drive home. I don't even remember walking through the front door, or going to bed. I remember being "numb" and not being able to cry anymore.. I think I had gone into a state of shock, as I felt like this was not really happening to me.
I remember thinking that I cannot make a decision about whether or not to put Joe through the operation, as I did not want to be held responsible for ending our sons life at 2/3 days old.. and that how can I make this decision when most of the time, I cannot even decide on what to have for dinner, or what to wear when i get up in the mornings.
This is the Kit that Joe was put in ready to be taken to Birmingham Children's Hospital.
You can just see his Lucky Hat

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 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

Saturday, 18 July 2009

Taking Joe Home

After Joe was born, I spent one night in the hospital. I did not get any sleep as the other babies were crying, and I was too excited to sleep.

Phil picked me up from the hospital the following morning (Thursday 26th March), and we took Joe home. I remember Phil telling me that I needed some sleep and he sent me to bed, so this was his first time alone with Joe. When I woke up, Phils mum was round. She had cooked us some food that we could reheat to make things easier. We were so grateful.

Things went OK, apart from I was struggling to get Joe to latch (I was trying to breast feed). On the friday we had to take Joe for his 24 hour check. The GP said that everything was fine, although we were concerned that Joes nappies were not very wet. At the time, we put this down to the fact that Joe had not had very much feed. The midwife was supposed to come out, but she never showed up. I phoned the hospital and was told that the midwife would be out on Saturday morning.

I continued to struggle to get Joe to feed, so I phoned a helpline. I was advised to stick with it, and that this can be normal for mothers and babies. I was really worried, so on the Friday afternoon, I tried expressing milk and bottle feeding, but still Joe would not feed.

During the Friday evening, Joe would not settle, and was whining (not even crying). This carried on through the night into the Saturday morning. However, I did manage to get Joe to have some milk during the night, so I felt a lot happier.

Friday, 17 July 2009

Here Goes.....

Ok, so I have decided to start this blog to document Joe's story so far and to carry on telling his story.
But first, a little bit about me... I am 28 and a first time mum. I found out I was pregnant after returning home from our holiday in California. We believe that Joe was conceived in Barstow (Near Las Vegas).

The pregancy was fine. Both the 12 and 20 week scans did not show any problems, and other than a cold, i did not feel too bad while pregnant. I was lucky in the respect that i did not really suffer from morning sickness, and the only cravings I had were for Stawberry milkshake and marzipan.

We decided to find out the sex of the baby at the 20 week scan, and tried our hardest to keep this a secret from my mum and dad, although I am pretty certain that they knew.

During all my appointments with my midwife, the words that have stuck in my head are "you have a very happy baby"

My due date was the 11th March, but Joe was 2 weeks late, so I had to be induced, even after having two membrane sweeps. I had planned to have a water birth, but this went out the window because of being induced, and I ended up having the works in terms of pain relief (I was convinced that Joe was trying to come out of my bum :).... I remember the midwife saying that Joe was Back to Back which is why the pain was where it was. I enjoyed the birth (thanks to the epidural). Joe was born at 16:47 on the 25th March weighing 6lb 15 1/2 oz.
Phil was amazing at the birth... could not have asked for anything more from him!