I have been thinking about my previous post all day.
The way it felt is so hard to describe. I thought I had done it justice, but reading it back I realise there is so much I have left out.
It was so difficult when Georgia was at home and she kept having respiratory arrests, once she was in Southampton Hospital I felt relieved she was there.
Again I was so naive.
We just expect these people to be able to save our children. It's like, if they are in hospital no harm can come to them. That is so not true. There is only so much they can do.
There were a couple of parents we became friendly with that this happened to. It is so destroying to be faced with the fact that your child can not be saved. How do you deal with that? Even worse, how do you tell parents that you can't help?
This was one of the hardest days for us, mainly because we realised that the people we thought were super hero's actually were as baffled by Georgia as we were.
It is so scary to think that you could just lose them. Just like that. I think, if I had realised this before I would have been even more terrified.
Her next surgery is going to be worse. She will be aware this time. Maybe it will make it easier if she is able to tell us how she feels. Maybe it will make it worse if she can tell us how she feels. Who knows?
All I know is, without the constant attention to detail and the hard work of the consultants and nurses, Georgia would not be with us today.
Before Georgia was born I was a wimp. I hated the sight of blood. I was terrified when people were sick. I can't even remember when I got over that. So much has happened that I just dealt with it.
We were not allowed to properly bath Georgia due to all the wires but we could bed bath her. I would sit for hours with a a few little bits of cotton wool and warm water trying to get the dried blood off her puncture wounds. She had so many, she looked like a little pin cushion.
You know when you take off a plaster and you get left with that really irritating sticky stuff that just won't come off? She was covered in that from head to toe. Mainly around her mouth and nose where the ventilator had been kept in place. I spent so long trying to get that off before one of the nurses gave me this wonderful remover that did it in seconds. I didn't really use it much though. Cleaning Georgia was about all I had to do.
Georgia's scars had begun to heal though. She had (and still has) perfect little X's just below her chest where the drains were. Josh says they look like someone has drawn kisses on her tummy. I told him that's where the angels kissed her to keep her safe.
There were so many little insignificant things that happened throughout our stay. Each one of these things makes up the whole story.
Thinking back to when Georgia was diagnosed, I was devastated. I never realised it would be this hard, or that she would be this strong. I don't think I thought for a second she would survive. It's those angel kisses that did it!
I do hope her next surgery goes a bit better than the last. Hopefully, one day, she might be able to go a full day without medication, or a full month without a chest infection!
For now, we are just happy she is here.
Thursday 30 June 2011
The Pretenders
I still go to bed in my jogging bottoms. I still keep a hairband around my wrist at night too. It's just in case.
When Georgia was really ill, I had to be prepared to leave to go to the hospital at any time. It's a habit I cant get out of. I still have a bag packed for her, hanging up ready to go.
I always have enough petrol in my car to get to the hospital and back. I always have £1.50 for the parking.
It will never go away, I am in a constantly alert, ready for anything. I don't ever relax. I am just a big bundle of nervous energy. I wonder if I will ever chill out again!
Georgia laid in Intensive Care for 2 days not really seeing, or hearing. She seemed to just be completely taken over by the pain she was in.
I could do nothing but sit with her. I couldn't even cuddle her as she still had so many wires.
I knew she wasn't right. The doctors told me that she would recover slowly and that they wanted her to go back up to the Ocean Ward.
When it is your child, you just know. She was still really poorly, I felt like no one was listening to me. In fairness I understand why they didn't. On paper she was fine. But when I looked into her eyes, she was dying.
I went with her back up to the ward. The nurse that was working was called Jess and we knew her very well. She was to be Georgia's nurse for the day. I told her my concerns. As Jess had looked after Georgia before, she knew her and I trusted that she would know if something was wrong. I left her in Jess' capable hand and went off for a break.
When I came back 2 hours later, Georgia had not moved. Anyone that knows Georgia, would know that's not right. She had not smiled since before her surgery either. I know that no one would want to smile after heart surgery but Georgia smiled through her pain, usually.
At 2am that morning Georgia stopped breathing. Back in Intensive Care the Consultant was baffled as to why she was still not well. All her statistics said she was ok.
Rob and I stayed with her until 4am then finally gave in and went to get some sleep.
Ward rounds the next day were at 10am, we made sure we were there to hear the doctor's theories. The consultant on that morning was Vanessa. She had called in all of the Paediatric Consultants to come and have a look at Georgia.
The bed was surrounded by 7 or 8 people and I just sat beside Georgia listening to them. They discussed her for 10 minutes. Vanessa then asked me what I thought. I was so surprised that she wanted my opinion I didn't really know what to say. Being me, I just burst into tears and told them all she was not right. There was no light left in her eyes. It was as if she had given up. All the fight had been taken from her.
The consultants all went off to talk and left Rob and I sitting looking at each other in fear. What if they couldn't work out what was wrong? What do we do then?
On top of this we had planned to travel back to the Island to visit Josh as we hadn't seen him for 2 weeks. We had to make time for Josh too, as hard as it was to leave Georgia.
Vanessa came over to tell us that they were going to investigate more by doing chest x-rays and a heart echo.
I feel very indebted to Vanessa. She had asked me my opinion, and listened to me. She agreed that there was something wrong and was doing all she could to find out what it was. She was aware we had planned to see Josh on this day too and told us to go. I really didn't want to leave Georgi but I really wanted to see Josh. Honestly, I was looking forward to a normal day. No hospital, for a while anyway.
So we kissed Georgia goodbye and walked out. That dreaded elastic band trying to pull me back with every step.
We got into the car and started to drive to the ferry. We were both crying.
Playing in the car was 'I'll stand by you' by the Pretenders. It will forever remind me of Rob, and how we both felt in that moment. Afraid, sad, guilty for Georgia. Excited and happy to see Josh. United in our thoughts and feelings.
Vanessa phoned me as we got off the boat. Georgia had stopped breathing again. This time they couldn't pull her out of it so they had sedated her and put her back on the ventilator. A chest X-ray showed that her lung had collapsed.
10 minutes later we were all smiles for our little boy. For the moment we had to put Georgia to the back of our minds, as hard as that was.
We took Josh to the beach. Rob and I could be brilliant actors.
When Georgia was really ill, I had to be prepared to leave to go to the hospital at any time. It's a habit I cant get out of. I still have a bag packed for her, hanging up ready to go.
I always have enough petrol in my car to get to the hospital and back. I always have £1.50 for the parking.
It will never go away, I am in a constantly alert, ready for anything. I don't ever relax. I am just a big bundle of nervous energy. I wonder if I will ever chill out again!
Georgia laid in Intensive Care for 2 days not really seeing, or hearing. She seemed to just be completely taken over by the pain she was in.
I could do nothing but sit with her. I couldn't even cuddle her as she still had so many wires.
I knew she wasn't right. The doctors told me that she would recover slowly and that they wanted her to go back up to the Ocean Ward.
When it is your child, you just know. She was still really poorly, I felt like no one was listening to me. In fairness I understand why they didn't. On paper she was fine. But when I looked into her eyes, she was dying.
I went with her back up to the ward. The nurse that was working was called Jess and we knew her very well. She was to be Georgia's nurse for the day. I told her my concerns. As Jess had looked after Georgia before, she knew her and I trusted that she would know if something was wrong. I left her in Jess' capable hand and went off for a break.
When I came back 2 hours later, Georgia had not moved. Anyone that knows Georgia, would know that's not right. She had not smiled since before her surgery either. I know that no one would want to smile after heart surgery but Georgia smiled through her pain, usually.
At 2am that morning Georgia stopped breathing. Back in Intensive Care the Consultant was baffled as to why she was still not well. All her statistics said she was ok.
Rob and I stayed with her until 4am then finally gave in and went to get some sleep.
Ward rounds the next day were at 10am, we made sure we were there to hear the doctor's theories. The consultant on that morning was Vanessa. She had called in all of the Paediatric Consultants to come and have a look at Georgia.
The bed was surrounded by 7 or 8 people and I just sat beside Georgia listening to them. They discussed her for 10 minutes. Vanessa then asked me what I thought. I was so surprised that she wanted my opinion I didn't really know what to say. Being me, I just burst into tears and told them all she was not right. There was no light left in her eyes. It was as if she had given up. All the fight had been taken from her.
The consultants all went off to talk and left Rob and I sitting looking at each other in fear. What if they couldn't work out what was wrong? What do we do then?
On top of this we had planned to travel back to the Island to visit Josh as we hadn't seen him for 2 weeks. We had to make time for Josh too, as hard as it was to leave Georgia.
Vanessa came over to tell us that they were going to investigate more by doing chest x-rays and a heart echo.
I feel very indebted to Vanessa. She had asked me my opinion, and listened to me. She agreed that there was something wrong and was doing all she could to find out what it was. She was aware we had planned to see Josh on this day too and told us to go. I really didn't want to leave Georgi but I really wanted to see Josh. Honestly, I was looking forward to a normal day. No hospital, for a while anyway.
So we kissed Georgia goodbye and walked out. That dreaded elastic band trying to pull me back with every step.
We got into the car and started to drive to the ferry. We were both crying.
Playing in the car was 'I'll stand by you' by the Pretenders. It will forever remind me of Rob, and how we both felt in that moment. Afraid, sad, guilty for Georgia. Excited and happy to see Josh. United in our thoughts and feelings.
Vanessa phoned me as we got off the boat. Georgia had stopped breathing again. This time they couldn't pull her out of it so they had sedated her and put her back on the ventilator. A chest X-ray showed that her lung had collapsed.
10 minutes later we were all smiles for our little boy. For the moment we had to put Georgia to the back of our minds, as hard as that was.
We took Josh to the beach. Rob and I could be brilliant actors.
Saturday 25 June 2011
One year on.......
Today is the year anniversary of Georgia's heart surgery.
What we have been through could have torn us apart. Luckily it has just made us stronger.
I remember telling someone that Georgia's story so far has been like going through hell. Quite honestly, if I had to go through hell, there is no other person better to go through it with than Rob.
Both our children are our world. I am so proud of both of them. Josh has been a little warrior, he has had to put up with all the trips to the hospitals, he has seen so much he should never have had to.
I can't even explain how brave and determined Georgia is. She has amazed me with everything she has achieved.
I didn't really want to write a blog today. I have written and rewritten this page so many times. I just don't know how to put how I have felt today into words.
All day I have been clock watching, thinking what we were doing at this time on that day. I feel like I have relived it today.
Maybe I need to start to let it go. This blog has helped in someways, but made it worse in others. It makes me think about stuff that I shouldn't really keep going over. There is nothing I can do to change the past. There is nothing I can do to make her better. It is what it is.
I have started doing Physio on Georgia. The respiratory team think it will help her breathing. So far the only thing it has done is make her breathing worse and make her really stressed. They said this would happen though. It should start to get better soon.
I have to hold a mask over her face for a certain amount of time. That doesn't sound so bad does it? Well then imagine how awful it is with a girl who was prone to gasping for air. She is petrified of this mask, to her it's like I am trying to suffocate her. She arches her back while she is screaming and looks me right in the eye. Its horrid. I am also worried about the amount of stress this puts on her heart. She has, after all, still got a heart condition.
So life goes on, much the same as it always has. It's normal to us now.
Sometimes I wish we could just have the same insignificant worries as everyone else. I would not change Georgia for the world though.
In the year since the surgery she has learnt so much. She walks, she drinks, she eats, she babbles and she smiles. All the time.
What we have been through could have torn us apart. Luckily it has just made us stronger.
I remember telling someone that Georgia's story so far has been like going through hell. Quite honestly, if I had to go through hell, there is no other person better to go through it with than Rob.
Both our children are our world. I am so proud of both of them. Josh has been a little warrior, he has had to put up with all the trips to the hospitals, he has seen so much he should never have had to.
I can't even explain how brave and determined Georgia is. She has amazed me with everything she has achieved.
I didn't really want to write a blog today. I have written and rewritten this page so many times. I just don't know how to put how I have felt today into words.
All day I have been clock watching, thinking what we were doing at this time on that day. I feel like I have relived it today.
Maybe I need to start to let it go. This blog has helped in someways, but made it worse in others. It makes me think about stuff that I shouldn't really keep going over. There is nothing I can do to change the past. There is nothing I can do to make her better. It is what it is.
I have started doing Physio on Georgia. The respiratory team think it will help her breathing. So far the only thing it has done is make her breathing worse and make her really stressed. They said this would happen though. It should start to get better soon.
I have to hold a mask over her face for a certain amount of time. That doesn't sound so bad does it? Well then imagine how awful it is with a girl who was prone to gasping for air. She is petrified of this mask, to her it's like I am trying to suffocate her. She arches her back while she is screaming and looks me right in the eye. Its horrid. I am also worried about the amount of stress this puts on her heart. She has, after all, still got a heart condition.
So life goes on, much the same as it always has. It's normal to us now.
Sometimes I wish we could just have the same insignificant worries as everyone else. I would not change Georgia for the world though.
In the year since the surgery she has learnt so much. She walks, she drinks, she eats, she babbles and she smiles. All the time.
Wednesday 22 June 2011
Shooting Stars
2 days after surgery we were asked if we wanted to be there when they lightened her sedation and took her off the ventilator.
I really didnt want to be there but if something went wrong and she was waking up and in pain I would have never forgiven myself. We stayed.
Georgia was very fidgety even under sedation. She had enormous amounts of morphine to keep her unconsious and out of pain but she was fighting it. It really freaked me out to start with. She would be really still then all of a sudden have a little wriggle about and try and lift her arms! So when they told me they were taking the sedation down, I knew it wouldnt be long before she was awake.
There was 2 nurses and a PICU consultant doing the removal of the ventilator. We were pre warned that she was likely not to do very well to start with due to her breathing problems. I felt like I was in the way a bit, so I shifted round her cot so I was by her feet. The downside of being in that position was I could see the monitor with all the stats on it.
As Georgi started to open her eyes I went all hot. Pure panic was starting to set in. She was so sweaty and pale she looked like a little china doll. She started to fight then.
She was still not totally alert, but alert enough to know there was a tube down her throat and she didn't like it. She started to reach for it so the Consultant removed it and put an oxygen mask by her face.
I stood there feeling totally helpless. I watched as her sats went from 99 right down to 40 then back up to 70. I am not really sure how my legs supported me at that point.
Then that was it. That easy. The nurse told us she was stable and they would be keeping an eye on her very closely until she was fully awake.
I dont know what I expected but when I looked over the cot at her she just stared at me. No facial expression at all. I think I wanted the famous smile. She looked so sorry for herself, it was as if she were saying 'help me, I am in pain'. I just sat next to her and held her hand.
I know she was right there in front of me but I felt like I was grieving for her. Maybe I was grieving for the Georgia I wanted to see again, sunny happy little baby. I stayed with her all day, just crying silently.
In PICU, all the parents understand. They are all right there with you, they live your sadness, just as you live theirs. You also live their happiness, when it happens.
At this point I missed Georgia. I missed Josh too, he is the kind of boy that can brighten up any situation, I think he gets it from his dad. I so wanted to come home and see him but I was so scared that something would happen to Georgia and I wouldnt be there with her. It was so hard.
That night they covered Georgia's cot with a sheet and put a little stars light show on for her. It was so beautiful it made me cry to watch her pained eyes following the stars as they moved. She no longer cried, she just whimpered like a wounded animal. I wish it had been me.
I really didnt want to be there but if something went wrong and she was waking up and in pain I would have never forgiven myself. We stayed.
Georgia was very fidgety even under sedation. She had enormous amounts of morphine to keep her unconsious and out of pain but she was fighting it. It really freaked me out to start with. She would be really still then all of a sudden have a little wriggle about and try and lift her arms! So when they told me they were taking the sedation down, I knew it wouldnt be long before she was awake.
There was 2 nurses and a PICU consultant doing the removal of the ventilator. We were pre warned that she was likely not to do very well to start with due to her breathing problems. I felt like I was in the way a bit, so I shifted round her cot so I was by her feet. The downside of being in that position was I could see the monitor with all the stats on it.
As Georgi started to open her eyes I went all hot. Pure panic was starting to set in. She was so sweaty and pale she looked like a little china doll. She started to fight then.
She was still not totally alert, but alert enough to know there was a tube down her throat and she didn't like it. She started to reach for it so the Consultant removed it and put an oxygen mask by her face.
I stood there feeling totally helpless. I watched as her sats went from 99 right down to 40 then back up to 70. I am not really sure how my legs supported me at that point.
Then that was it. That easy. The nurse told us she was stable and they would be keeping an eye on her very closely until she was fully awake.
I dont know what I expected but when I looked over the cot at her she just stared at me. No facial expression at all. I think I wanted the famous smile. She looked so sorry for herself, it was as if she were saying 'help me, I am in pain'. I just sat next to her and held her hand.
I know she was right there in front of me but I felt like I was grieving for her. Maybe I was grieving for the Georgia I wanted to see again, sunny happy little baby. I stayed with her all day, just crying silently.
In PICU, all the parents understand. They are all right there with you, they live your sadness, just as you live theirs. You also live their happiness, when it happens.
At this point I missed Georgia. I missed Josh too, he is the kind of boy that can brighten up any situation, I think he gets it from his dad. I so wanted to come home and see him but I was so scared that something would happen to Georgia and I wouldnt be there with her. It was so hard.
That night they covered Georgia's cot with a sheet and put a little stars light show on for her. It was so beautiful it made me cry to watch her pained eyes following the stars as they moved. She no longer cried, she just whimpered like a wounded animal. I wish it had been me.
Saturday 11 June 2011
Sleeping Beauty
Georgia had 2 chest drains, 2 pace wires, a catheter, an arterial line, ECG wires and patches and a sats monitor on her foot. She also had her ventilator tube in the side of her mouth.
I remember wondering why she had a hole in the side of her neck. It was only small, but a hole nonetheless. The nurse told me it was where they had the arterial line in for surgery, they put it in her arm afterwards.
Georgia still has that scar of the hole on her neck now.
After we had spent a bit of time with her we realised that it seemed a little pointless. Georgia was not going to be woken up and taken off the ventilator for a couple of days. Rob disappeared off to watch the World Cup. I decided to stay with her and hold her little hand. It was impossible to get any closer to her.
Rob's mum was taking over Joshie watch from my mum that night, so on her way home my mum was going to drop into the hospital to see us and bring with her some, much needed, clean clothes.
It was shocking for me to see Georgia after her op. Not long afterwards I no longer saw the wires, just Georgi.
I didn't even think about how it would be for my mum, to me it was normal.
I sat in my car, waiting for her. All day I had managed to be really brave and not cry. This is a huge accomplishment for me. I am the type that cries at Eastenders!
I was really proud of myself for holding it together, not only for myself, but for Rob too.
Sitting on my own though, I started to run it all through my mind. It hit me then. I was crying so much I couldn't catch my breath.
I called Marc (my step dad) and poured my heart out. Bless him, he cried with me.
When mum and I finally walked back into PICU, her reaction must have been what I had looked like. She looked horrified. Sorry for not warning you before we went in mum!
A few days later my Dad came to visit her too. It must have been awful for him. He had only seen Georgia a few times in her short little life, for him to see her in that situation must have been petrifying.
After my mum left, I sat and watched Georgi for ages. On one hand I was so scared of what was to come. On the other hand, I was so proud of her at that moment I thought my heart would burst. She is so beautiful even asleep.
All I wanted to see was that Georgia smile.
I remember wondering why she had a hole in the side of her neck. It was only small, but a hole nonetheless. The nurse told me it was where they had the arterial line in for surgery, they put it in her arm afterwards.
Georgia still has that scar of the hole on her neck now.
After we had spent a bit of time with her we realised that it seemed a little pointless. Georgia was not going to be woken up and taken off the ventilator for a couple of days. Rob disappeared off to watch the World Cup. I decided to stay with her and hold her little hand. It was impossible to get any closer to her.
Rob's mum was taking over Joshie watch from my mum that night, so on her way home my mum was going to drop into the hospital to see us and bring with her some, much needed, clean clothes.
It was shocking for me to see Georgia after her op. Not long afterwards I no longer saw the wires, just Georgi.
I didn't even think about how it would be for my mum, to me it was normal.
I sat in my car, waiting for her. All day I had managed to be really brave and not cry. This is a huge accomplishment for me. I am the type that cries at Eastenders!
I was really proud of myself for holding it together, not only for myself, but for Rob too.
Sitting on my own though, I started to run it all through my mind. It hit me then. I was crying so much I couldn't catch my breath.
I called Marc (my step dad) and poured my heart out. Bless him, he cried with me.
When mum and I finally walked back into PICU, her reaction must have been what I had looked like. She looked horrified. Sorry for not warning you before we went in mum!
A few days later my Dad came to visit her too. It must have been awful for him. He had only seen Georgia a few times in her short little life, for him to see her in that situation must have been petrifying.
After my mum left, I sat and watched Georgi for ages. On one hand I was so scared of what was to come. On the other hand, I was so proud of her at that moment I thought my heart would burst. She is so beautiful even asleep.
All I wanted to see was that Georgia smile.
Wednesday 8 June 2011
when I'm feeling blue
I still have good and bad days.
Today is a bad day. I don't often write when I am feeling bad. I think I should start too, just so you can understand the different emotions we still have.
I don't understand people very well. Why have so much bad feeling when life is so short.
I consider myself quite an easy going person. I don't hold grudges, I don't see the point. If you love someone, you love them completely. Warts and all.
I miss my family being together. It has been years now since we have all been able to be in the same room, without fighting. Things have been said that have hurt so much that we will never be able to have the same relationship again.
Why can't we just all get along? Perhaps I am resigned to the fact that people treat me how they like and I just forgive them. I don't know.
Georgia has been a bit off for the last few days. Her breathing has got really bad and she seems to have lost her sense of balance. She has fallen over so many times her face is covered in bruises.
I was watching her sleep last night. Her blocked nose makes it really hard for her to sleep through the night. It's like she has a constant cold. Is this what she has in store for the rest of her life?
I do always try to look forward but sometimes the picture I have in my head is not what I want to see.
So she will never be a long distance runner? So what?
Will she be able to keep up with her friends? Or her brother? Probably not. We will have to watch her struggle constantly.
I can't help her, literally. She wont let me. I try to help her walk so she wont keep falling over but it annoys her. I know this is how it will be. She will push herself to extremes, just to feel normal.
I know there are other people far worse off, but when it is your child it is all you see.
Georgia's condition is all encompassing to me. I have fought so hard for it not to define me, but it does.
But I won't let it define her. She probably won't either.
I hope we can get some answers soon as to why she has this trouble with her breathing. Sometimes it's nice to have an explanation.
Explanations are annoying me too. Why did this happen to her? Josh is perfectly happy and healthy with only the common cold springing up now and then.
I don't mean I want him to be ill, it's just why one and not the other? This makes me think it is something I did. I was the incubator for 9 months so where did I go wrong?
The doctors told us that it just happens. No explanation, it is just something that happens. That's not good enough for me because it makes me feel like it must have been something I did. It doesn't matter how many people tell me it wasn't my fault. It will always be there in the back of my mind.
All I can do is carry on trying to make her life as happy as possible.
Today is a bad day. I don't often write when I am feeling bad. I think I should start too, just so you can understand the different emotions we still have.
I don't understand people very well. Why have so much bad feeling when life is so short.
I consider myself quite an easy going person. I don't hold grudges, I don't see the point. If you love someone, you love them completely. Warts and all.
I miss my family being together. It has been years now since we have all been able to be in the same room, without fighting. Things have been said that have hurt so much that we will never be able to have the same relationship again.
Why can't we just all get along? Perhaps I am resigned to the fact that people treat me how they like and I just forgive them. I don't know.
Georgia has been a bit off for the last few days. Her breathing has got really bad and she seems to have lost her sense of balance. She has fallen over so many times her face is covered in bruises.
I was watching her sleep last night. Her blocked nose makes it really hard for her to sleep through the night. It's like she has a constant cold. Is this what she has in store for the rest of her life?
I do always try to look forward but sometimes the picture I have in my head is not what I want to see.
So she will never be a long distance runner? So what?
Will she be able to keep up with her friends? Or her brother? Probably not. We will have to watch her struggle constantly.
I can't help her, literally. She wont let me. I try to help her walk so she wont keep falling over but it annoys her. I know this is how it will be. She will push herself to extremes, just to feel normal.
I know there are other people far worse off, but when it is your child it is all you see.
Georgia's condition is all encompassing to me. I have fought so hard for it not to define me, but it does.
But I won't let it define her. She probably won't either.
I hope we can get some answers soon as to why she has this trouble with her breathing. Sometimes it's nice to have an explanation.
Explanations are annoying me too. Why did this happen to her? Josh is perfectly happy and healthy with only the common cold springing up now and then.
I don't mean I want him to be ill, it's just why one and not the other? This makes me think it is something I did. I was the incubator for 9 months so where did I go wrong?
The doctors told us that it just happens. No explanation, it is just something that happens. That's not good enough for me because it makes me feel like it must have been something I did. It doesn't matter how many people tell me it wasn't my fault. It will always be there in the back of my mind.
All I can do is carry on trying to make her life as happy as possible.
Tuesday 7 June 2011
Not what I want to hear
Some people remember times and places by a smell or taste. I am transported back in time by sounds.
There is a high pitched beeping as you walk into Southampton Hospital. It sounds like the monitors that Georgia had attached to her in PICU. Whenever I watch any programs about hospitals and I hear that noise, I can see and feel it as though it was yesterday. The smell of the hospital, like antiseptic. The heat of the wards to keep the babies warm. The murmur of voices, not being too loud so as not to wake the little ones.
I still can't listen to certain music. The song that makes me cry every time I hear it was played repeatedly in my car as I drove to and from the hospitals. 'Keep holding on' is very fitting though!
There is a song by Mumford and Sons, it is like the song was written for Georgia.
It is a year this Sunday since we made the trip over with Georgia for her surgery. I can't believe how fast the time has gone.
Sometimes I wonder why people don't just know what we have been through. It has been such a life changing experience that I just assume that I look like the mum of a cardiac baby. I know, that sounds so bizarre. If you have ever lost someone you love, you tend to wonder why the world has not stopped to grieve with you. Like the whole world should be as devastated as you. It was like that with Georgia. When she was really ill I would watch people and resent them for being so happy when she was fighting for her life.
Whilst Georgia was in Theatre, Rob and I sat in the parents room on the Ocean Ward.
We waited for 4 hours for news. In the meantime we needed something to take our minds off it, which turned out to be extremely difficult.
Rob read a newspaper 20 times, cover to cover. He would have gone to buy another one but was scared he would miss the surgeon.
I sat and watched 'Friends'. I have seen them so many times that I could watch them without really watching them!
Dr Viola finally came to see us at about 2pm. He told us the surgery had gone well and that PICU were just getting her settled, then we could see her. He then told us that she was a very rare case as her heart is completely back to front and upside down. They had managed to patch up the ventricles and atrial septum's with part of the outer sack that the heart sits in. The bad news was that her valves were like nothing he had ever seen before. They were not the usual AVSD valves, in actual fact they were unrecognisable as valves. They had put a couple of stitches in to stop the leaks but that would be a short term solution. She will have to have surgery again. They have no idea when.
Thinking about it now that was a devastating turn of events. We were so focused on this surgery being the end of it all. We naively thought that she would have this surgery then be fine. So stupid. This will go on for the rest of her life. She will never be able to do what other children can. But I bet she will try!
At the time though we were just so relieved she made it through the surgery. We didn't really think about the future and what this would mean.
One of the nurses went with us to PICU. It sounds silly but as soon as you walk in you can breathe better, guess it's the amount of oxygen they have floating about in there! It's so light and fresh, very quiet too apart from the beeping every now and then.
Georgia was right at the end of the room, exactly the space she had before.
Even though you think you have prepared yourself for it, it is still the most shocking sight.
Wires and tubes is all you can see. She was covered by a huge blanket with warm air being blown under it. She was ice cold and so still. It was as if she had not survived. The ventilator was making her chest rise and fall but other than that she was not Georgia. She didn't return to being Georgia for a long time either.
I realised how much time I had spent at the hospital when it turned into a sort of Groundhog Day. There was always a man asleep with his face on his laptop in the coffee shop at 7am. There was always a really skinny woman and a man with no legs out the front smoking. The surgeons would come for lunch at 12 in their scrubs waiting in line. The smell of fish wafted down the corridors at 1pm, hospital dinners!
The best time of day in the hospital was between 7 and 8 pm. All the visitors had gone and only the regulars remained! We all knew each other, even if it was just a nod of hello in passing. It was so quiet that after the emotional days we could sit and drink a cup of tea in silence.
Sometimes nothing needs to be said.
There is a high pitched beeping as you walk into Southampton Hospital. It sounds like the monitors that Georgia had attached to her in PICU. Whenever I watch any programs about hospitals and I hear that noise, I can see and feel it as though it was yesterday. The smell of the hospital, like antiseptic. The heat of the wards to keep the babies warm. The murmur of voices, not being too loud so as not to wake the little ones.
I still can't listen to certain music. The song that makes me cry every time I hear it was played repeatedly in my car as I drove to and from the hospitals. 'Keep holding on' is very fitting though!
There is a song by Mumford and Sons, it is like the song was written for Georgia.
It is a year this Sunday since we made the trip over with Georgia for her surgery. I can't believe how fast the time has gone.
Sometimes I wonder why people don't just know what we have been through. It has been such a life changing experience that I just assume that I look like the mum of a cardiac baby. I know, that sounds so bizarre. If you have ever lost someone you love, you tend to wonder why the world has not stopped to grieve with you. Like the whole world should be as devastated as you. It was like that with Georgia. When she was really ill I would watch people and resent them for being so happy when she was fighting for her life.
Whilst Georgia was in Theatre, Rob and I sat in the parents room on the Ocean Ward.
We waited for 4 hours for news. In the meantime we needed something to take our minds off it, which turned out to be extremely difficult.
Rob read a newspaper 20 times, cover to cover. He would have gone to buy another one but was scared he would miss the surgeon.
I sat and watched 'Friends'. I have seen them so many times that I could watch them without really watching them!
Dr Viola finally came to see us at about 2pm. He told us the surgery had gone well and that PICU were just getting her settled, then we could see her. He then told us that she was a very rare case as her heart is completely back to front and upside down. They had managed to patch up the ventricles and atrial septum's with part of the outer sack that the heart sits in. The bad news was that her valves were like nothing he had ever seen before. They were not the usual AVSD valves, in actual fact they were unrecognisable as valves. They had put a couple of stitches in to stop the leaks but that would be a short term solution. She will have to have surgery again. They have no idea when.
Thinking about it now that was a devastating turn of events. We were so focused on this surgery being the end of it all. We naively thought that she would have this surgery then be fine. So stupid. This will go on for the rest of her life. She will never be able to do what other children can. But I bet she will try!
At the time though we were just so relieved she made it through the surgery. We didn't really think about the future and what this would mean.
One of the nurses went with us to PICU. It sounds silly but as soon as you walk in you can breathe better, guess it's the amount of oxygen they have floating about in there! It's so light and fresh, very quiet too apart from the beeping every now and then.
Georgia was right at the end of the room, exactly the space she had before.
Even though you think you have prepared yourself for it, it is still the most shocking sight.
Wires and tubes is all you can see. She was covered by a huge blanket with warm air being blown under it. She was ice cold and so still. It was as if she had not survived. The ventilator was making her chest rise and fall but other than that she was not Georgia. She didn't return to being Georgia for a long time either.
I realised how much time I had spent at the hospital when it turned into a sort of Groundhog Day. There was always a man asleep with his face on his laptop in the coffee shop at 7am. There was always a really skinny woman and a man with no legs out the front smoking. The surgeons would come for lunch at 12 in their scrubs waiting in line. The smell of fish wafted down the corridors at 1pm, hospital dinners!
The best time of day in the hospital was between 7 and 8 pm. All the visitors had gone and only the regulars remained! We all knew each other, even if it was just a nod of hello in passing. It was so quiet that after the emotional days we could sit and drink a cup of tea in silence.
Sometimes nothing needs to be said.
Thursday 2 June 2011
Surgery. Heart stopping.
We bathed Georgia in her MSRA Gel on the morning of 25th June 2010. I was still quite sceptical about her actually going down for surgery.
Rob and I played with her for a while. She had been nil-by-mouth for a few hours, so we were trying to keep her entertained so she wouldn't notice. She didn't really care, I suppose she had been fed every 3 hours for 6 months so it was nice for her tummy to have a rest!
At 8.30 she fell asleep draped over my shoulder.
The hospital porters turned up with another gurney! I realised then that this was very real. I looked at Rob and saw my terror reflected in his eyes. This was it, our smiley little baby girl was going to have someone stop her heart. Still when I say it I can feel my breath catch.
Because she was sleeping I was able to carry her down to the theatre waiting room. A lovely nurse called Sarah came with us from the ward. Apparently, even if you are not using the gurney it has to come with you, I felt like a bit of a prat following 2 hospital porters wheeling it down the corridors!
Georgia had to be dressed in a surgical gown. We managed to get it on her without waking her. Who would have thought they make gowns that small.
Rob, Georgia and I sat down to wait for Sarah to sign us in with reception. The head of Surgery, Dr Khan came out to say that they were just prepping the room and then they would take her down. He asked which of us would be taking her. I said it would be me as I was holding her asleep.
As soon as he walked away my nerves kicked in. The thoughts I had were terrifying. They were about to open her chest, stop her heart and put her on a bypass machine. They would then try their hardest to fix her as quickly as possible. But she is so tiny, how can they possibly do that?????
I started to feel dizzy then, I had to hand her over to Rob so I could stand up. I couldn't sit still. As I was standing there hopping from foot to foot like an absolute idiot, they came for her. What a terrible thing to admit, I panicked and couldn't take her. Rob took her for me.
She was still fast asleep on Rob's shoulder, dressed in her little gown.
I stood at the end of the corridor and watched her little head on Rob's shoulder until they disappeared into the room.
My heart was breaking. I couldn't cry, I knew that what Rob was doing was going to be so hard for him, the last thing he needed was to have to comfort me too. I stood at the end of that corridor watching that door with Sarah holding my hand until Rob reappeared. He was fine until he looked me in the eye, then he fell apart.
Rob and I played with her for a while. She had been nil-by-mouth for a few hours, so we were trying to keep her entertained so she wouldn't notice. She didn't really care, I suppose she had been fed every 3 hours for 6 months so it was nice for her tummy to have a rest!
At 8.30 she fell asleep draped over my shoulder.
The hospital porters turned up with another gurney! I realised then that this was very real. I looked at Rob and saw my terror reflected in his eyes. This was it, our smiley little baby girl was going to have someone stop her heart. Still when I say it I can feel my breath catch.
Because she was sleeping I was able to carry her down to the theatre waiting room. A lovely nurse called Sarah came with us from the ward. Apparently, even if you are not using the gurney it has to come with you, I felt like a bit of a prat following 2 hospital porters wheeling it down the corridors!
Georgia had to be dressed in a surgical gown. We managed to get it on her without waking her. Who would have thought they make gowns that small.
Rob, Georgia and I sat down to wait for Sarah to sign us in with reception. The head of Surgery, Dr Khan came out to say that they were just prepping the room and then they would take her down. He asked which of us would be taking her. I said it would be me as I was holding her asleep.
As soon as he walked away my nerves kicked in. The thoughts I had were terrifying. They were about to open her chest, stop her heart and put her on a bypass machine. They would then try their hardest to fix her as quickly as possible. But she is so tiny, how can they possibly do that?????
I started to feel dizzy then, I had to hand her over to Rob so I could stand up. I couldn't sit still. As I was standing there hopping from foot to foot like an absolute idiot, they came for her. What a terrible thing to admit, I panicked and couldn't take her. Rob took her for me.
She was still fast asleep on Rob's shoulder, dressed in her little gown.
I stood at the end of the corridor and watched her little head on Rob's shoulder until they disappeared into the room.
My heart was breaking. I couldn't cry, I knew that what Rob was doing was going to be so hard for him, the last thing he needed was to have to comfort me too. I stood at the end of that corridor watching that door with Sarah holding my hand until Rob reappeared. He was fine until he looked me in the eye, then he fell apart.
Karma
Before Georgia was born I never thought I could love another child as much as I loved Josh. I did find it quite hard to bond with Georgia, I felt a bit more like a nurse than a mum for a while. I also tried very hard to not let myself get too close to her in case of the worst happening. That was impossible as she is just wonderful.
I have noticed in the last few weeks the affect that this journey has had on Josh. He has been attention seeking, in the worst possible way. He has been hitting us all, pinching, biting and throwing really horrendous tantrums. Firstly, I put it down to him being 3 and acting out. I have been looking more at myself in the last week or so and realised that it's me, all me. I have been so 'all about Georgia' that I was starting to overlook Josh. When people ask me how the kids are, I would say 'Georgia is doing really well'. How awful, poor Josh.
I am glad I have recognised it now before it is too late. Josh and I have started to have 'special time' for an hour everyday. This worked immediately. He has turned back into the lovely boy he was before.
I was worried how this would affect Georgia, as I would not be spending so much time with her. It has done her the world of good, she has become more independent and respects Josh (and his space) much more.
Does every parent have these problems? I seem to focus solely on what is happening at that moment and am completely blind to everything else going around me. Josh was shouting out for time and I was, not only ignoring it but shouting back at him. It's that bloody guilt thing again!
Sometimes I need to remember the important things. I have managed to deal with all that Georgia has had to endure but it has been at a very high price, now I need to right the wrongs.
Rob and I have just managed to get our relationship back to some normality. We went from one crisis to another just clinging on by our fingertips. What we have all been through has made us stronger in the long run.
I think Georgia has been punished for all my mistakes in life. I have done some pretty awful stuff in my time and definitely deserved some sort of karma but if I had known it would be my children that would pay the price perhaps I would have thought twice. Thoughts like this run through my head from time to time but I can't do anything about it now, it's in the past and done with. I can't change it.
I have noticed in the last few weeks the affect that this journey has had on Josh. He has been attention seeking, in the worst possible way. He has been hitting us all, pinching, biting and throwing really horrendous tantrums. Firstly, I put it down to him being 3 and acting out. I have been looking more at myself in the last week or so and realised that it's me, all me. I have been so 'all about Georgia' that I was starting to overlook Josh. When people ask me how the kids are, I would say 'Georgia is doing really well'. How awful, poor Josh.
I am glad I have recognised it now before it is too late. Josh and I have started to have 'special time' for an hour everyday. This worked immediately. He has turned back into the lovely boy he was before.
I was worried how this would affect Georgia, as I would not be spending so much time with her. It has done her the world of good, she has become more independent and respects Josh (and his space) much more.
Does every parent have these problems? I seem to focus solely on what is happening at that moment and am completely blind to everything else going around me. Josh was shouting out for time and I was, not only ignoring it but shouting back at him. It's that bloody guilt thing again!
Sometimes I need to remember the important things. I have managed to deal with all that Georgia has had to endure but it has been at a very high price, now I need to right the wrongs.
Rob and I have just managed to get our relationship back to some normality. We went from one crisis to another just clinging on by our fingertips. What we have all been through has made us stronger in the long run.
I think Georgia has been punished for all my mistakes in life. I have done some pretty awful stuff in my time and definitely deserved some sort of karma but if I had known it would be my children that would pay the price perhaps I would have thought twice. Thoughts like this run through my head from time to time but I can't do anything about it now, it's in the past and done with. I can't change it.
Subscribe to:
Posts (Atom)