I always told myself I didn't suffer with depression. I fought it for years. It's like the silent disease. It doesn't give you any warning either. One day I can be perfectly happy and just getting on with life, then the next I wake up with a huge black cloud around me threatening to suffocate me. I suppose it has always been there, I just never acknowledged it before. The thing is, you cant see it. I have always hidden it really well, but now it has started to seep through to everything. I feel so alone most of the time, even though I am surrounded by people.
Nobody really understands either. It's a selfish, lonely, unbearable disease that makes it hard to function. I tried tablets, they helped for a while. I tried therapy, but I felt like I was being too self involved. So now I just live with it. The good days outweigh the bad, for now. If it ever gets to the point where it takes over then I will have to do something about it. After all, when I am under my black cloud I am really difficult to live with.
I took Georgia over to Southampton a couple of weeks back. She needed to have a sleep study. I was so nervous. It has been quiet a long time since she has had to stay in hospital overnight.
The afternoon that we were due to leave I was rushing about trying to pack everything she may possibly need.
It was not just the staying in hospital really. It's also that extra hour on the ferry where I need to keep her entertained. It cost me a fortune to get the ferry over. Yet another expense when we struggle to even feed us all.
Georgia was so good though. She is so well behaved, we are lucky. She fell asleep at 7.30pm and we managed to get the monitors on her without waking her up. I laid on a camp bed beside her cot just watching the little glow of her sats monitor through her sock.
The doctor on the ward came in to see us at 10pm. She said she needed to listen to Georgia's heart. Why she couldn't have done that when she was awake I will never know. Of course, she woke her up. Georgia was then awake until 3am. So it was more of an awake study!
In the morning we were both so tired. I packed our stuff and was out of the hospital by 7.15am. By 8am we were on the ferry, finally arriving home at 9am. It was a long night. But it is done now. Thank god.
So the results have shown she will probably need her tonsils and adenoids out. Easy for any other child. Not for Georgia. I keep having horrific flashes of ventilators and a little blue Georgia. What if they try to take her off the ventilator and she has another collapse? I know she is stronger now but I really don't want her to have to go through that again.
We have 3 appointments in September over in Southampton. I have no idea how we are going to pay for the ferry. We can't afford to pay our bills, let alone travel. We have been made homeless once, I think it's soon to be on the cards again. I don't understand how other people cope. It's not like we go and splash out. All our clothes have holes in them, the kids have been playing with the same toys since Christmas. We never have a holiday, we never go out to places that require money.
Where is the help for the people that really need it?
Monday, 15 August 2011
Thursday, 21 July 2011
Is she just unlucky?
To look at Georgia now, you would never know.
You would expect that the pain she suffered would show in some way. I don't know how, but I expected her to always carry the horrifying experience with her. Up till now, there is no trace of it. Maybe it is because I carry it with me. It's probably more because I carry enough for both of us! I prefer it that way.
I don't think Josh has any lasting memories of any of it really. I am pleased about that. He is young enough to forget, or not totally get the gravity of certain situations. I would be devastated if he remembered her going into respiratory arrest. It was frightening to us, imagine how it felt for a 3 year old.
After Georgia was released from hospital, I was just waiting for the next drama to happen. When it didn't, I felt a bit lost. I know it sounds stupid, but I felt like I had nothing to fight anymore. So what I did instead was re live everything that had happened. I started to drive everyone insane with my constant chatter, I repeated myself all the time. It was my way of dealing with it.
That is one of the reasons for this blog. I don't have to drive everyone crazy, I can write it here and then it's done.
This way, our journey is forever told. It's a comfort to me to know that I have shared it, as awful as it was.
I know we are not finished yet. I know there is more but my little family is doing well, for now. We are happy. Happier than we have been for a long time. It has put things into perspective.
Before Georgia's surgery, she had a nasal brushing done to test for something called PCD. Primary Ciliary Dyskinesia is a respiratory disease that would cause the symptoms she was showing. Blocked nose, coughing, constant chest infections and colds. The nasal brushing is just a tiny little brush that looks like a cotton bud for a Barbie, being brushed round the inside of the nose. It doesn't hurt, it just is very uncomfortable and made her eyes water.
Unfortunately the test needs to be done when the patient has no virus, Georgia always had a virus!
Obviously, the first test was inconclusive. So we travelled over to Southampton again to get another test. Again, they couldn't diagnose.
Our lovely PCD nurse, Amanda, gave us a course of antibiotics to give Georgia. This was to try and get a good brushing and hopefully get her diagnosed.
Again, this shows the determination of the staff. Amanda was brilliant (and still is), she had a feeling that Georgia did have PCD. She finally took Georgia's case to a meeting of all the PCD specialists. We finally got the diagnosis.
PCD is still in the research stage. To treat it, Georgia is on constant antibiotics (to stop any infection) and I have to do daily physiotherapy.
My GP once told me that he thinks physiotherapy is a load of rubbish that was made up to get money out of people. Well he is wrong. If he saw the difference in Georgia since starting physio he would eat his words.
I am not saying the physio is easy. It's awful. I have to hold a little mask over her nose and mouth for 5 minutes a time. At the moment I am only doing it once a day but I will have to do more soon.
Georgia screams. She thinks I am trying to stop her breathing. On top of this, I worry that I am putting more stress on her heart. It's a vicious circle. It's good for her to cry as it builds up her lung strength, it's bad for her to cry as it puts pressure on her heart.
I now have a nasal spray for her too. It shoots a small spray up her nose to unblock it. It seems to be doing the trick. She quite likes that too, it's not as bad as physio.
I read an interesting theory. If you are not interested in the science of it, then skip this last bit!
The cells that are created when you are conceived, are cilia. As Georgia's don't work as they should, they created her the wrong way round. The heart is the first thing to develop. Maybe PCD is the reason for all of her problems.
Rob is a carrier of the PCD gene, so am I. You need both parents to carry it. Josh was lucky, Georgia wasn't.
You would expect that the pain she suffered would show in some way. I don't know how, but I expected her to always carry the horrifying experience with her. Up till now, there is no trace of it. Maybe it is because I carry it with me. It's probably more because I carry enough for both of us! I prefer it that way.
I don't think Josh has any lasting memories of any of it really. I am pleased about that. He is young enough to forget, or not totally get the gravity of certain situations. I would be devastated if he remembered her going into respiratory arrest. It was frightening to us, imagine how it felt for a 3 year old.
After Georgia was released from hospital, I was just waiting for the next drama to happen. When it didn't, I felt a bit lost. I know it sounds stupid, but I felt like I had nothing to fight anymore. So what I did instead was re live everything that had happened. I started to drive everyone insane with my constant chatter, I repeated myself all the time. It was my way of dealing with it.
That is one of the reasons for this blog. I don't have to drive everyone crazy, I can write it here and then it's done.
This way, our journey is forever told. It's a comfort to me to know that I have shared it, as awful as it was.
I know we are not finished yet. I know there is more but my little family is doing well, for now. We are happy. Happier than we have been for a long time. It has put things into perspective.
Before Georgia's surgery, she had a nasal brushing done to test for something called PCD. Primary Ciliary Dyskinesia is a respiratory disease that would cause the symptoms she was showing. Blocked nose, coughing, constant chest infections and colds. The nasal brushing is just a tiny little brush that looks like a cotton bud for a Barbie, being brushed round the inside of the nose. It doesn't hurt, it just is very uncomfortable and made her eyes water.
Unfortunately the test needs to be done when the patient has no virus, Georgia always had a virus!
Obviously, the first test was inconclusive. So we travelled over to Southampton again to get another test. Again, they couldn't diagnose.
Our lovely PCD nurse, Amanda, gave us a course of antibiotics to give Georgia. This was to try and get a good brushing and hopefully get her diagnosed.
Again, this shows the determination of the staff. Amanda was brilliant (and still is), she had a feeling that Georgia did have PCD. She finally took Georgia's case to a meeting of all the PCD specialists. We finally got the diagnosis.
PCD is still in the research stage. To treat it, Georgia is on constant antibiotics (to stop any infection) and I have to do daily physiotherapy.
My GP once told me that he thinks physiotherapy is a load of rubbish that was made up to get money out of people. Well he is wrong. If he saw the difference in Georgia since starting physio he would eat his words.
I am not saying the physio is easy. It's awful. I have to hold a little mask over her nose and mouth for 5 minutes a time. At the moment I am only doing it once a day but I will have to do more soon.
Georgia screams. She thinks I am trying to stop her breathing. On top of this, I worry that I am putting more stress on her heart. It's a vicious circle. It's good for her to cry as it builds up her lung strength, it's bad for her to cry as it puts pressure on her heart.
I now have a nasal spray for her too. It shoots a small spray up her nose to unblock it. It seems to be doing the trick. She quite likes that too, it's not as bad as physio.
I read an interesting theory. If you are not interested in the science of it, then skip this last bit!
The cells that are created when you are conceived, are cilia. As Georgia's don't work as they should, they created her the wrong way round. The heart is the first thing to develop. Maybe PCD is the reason for all of her problems.
Rob is a carrier of the PCD gene, so am I. You need both parents to carry it. Josh was lucky, Georgia wasn't.
Thursday, 14 July 2011
Happy home?
The day Georgia came home was a mix of emotions. I was happy she was home and we didn't have to keep juggling our lives. I was scared that I was going to do something wrong and not look after her properly. I was worried that I wouldn't notice when something was wrong.
Sometimes life gets in the way of everything else.
2 weeks later Georgia, being the little monkey she is, pulled out her feeding tube. That's the thing with her, she will only do things when she is ready, you can't force her. I made the decision there and then. I was going to leave the tube out and see if she got hungry enough to eat. I know that is a quite harsh way to do it, but if I didn't then she would depend on the tube forever.
All day I tried her with a bottle. All day she refused. I started to doubt myself by the evening. I was planning to try her one last time, if it didn't work then it was another trip up to the hospital.
I packed a bag for her. With a baby you take so much with you everywhere you go, with a heart baby you take everything bar the kitchen sink! While I packed it, Rob tried her with a bottle again. She drank it.
Sometimes I need to just give in and let Rob do it. It's not that Georgia prefers him, it's the fact that I had tried all day, and every time I got more and more stressed. She could feel it.
So there you have it, again she does things in her own time.
From September to December, life felt almost normal. Georgia was still getting chest infections every 2 weeks and we still had the odd trip up to the hospital with her, but it was as if everything had slowed down. It was not so out of control.
On Christmas eve, we received our repossession court order. The bad times were not over yet.
We had done nothing but worry about the house and our debts, all of which we incurred when Georgi was ill.
Rob and I were declared bankrupt on the 26th Jan 2011. Our mortgage was to be included in it.
We had to vacate our house on the 15th March 2011.
Now we were homeless.
Sometimes life gets in the way of everything else.
2 weeks later Georgia, being the little monkey she is, pulled out her feeding tube. That's the thing with her, she will only do things when she is ready, you can't force her. I made the decision there and then. I was going to leave the tube out and see if she got hungry enough to eat. I know that is a quite harsh way to do it, but if I didn't then she would depend on the tube forever.
All day I tried her with a bottle. All day she refused. I started to doubt myself by the evening. I was planning to try her one last time, if it didn't work then it was another trip up to the hospital.
I packed a bag for her. With a baby you take so much with you everywhere you go, with a heart baby you take everything bar the kitchen sink! While I packed it, Rob tried her with a bottle again. She drank it.
Sometimes I need to just give in and let Rob do it. It's not that Georgia prefers him, it's the fact that I had tried all day, and every time I got more and more stressed. She could feel it.
So there you have it, again she does things in her own time.
From September to December, life felt almost normal. Georgia was still getting chest infections every 2 weeks and we still had the odd trip up to the hospital with her, but it was as if everything had slowed down. It was not so out of control.
On Christmas eve, we received our repossession court order. The bad times were not over yet.
We had done nothing but worry about the house and our debts, all of which we incurred when Georgi was ill.
Rob and I were declared bankrupt on the 26th Jan 2011. Our mortgage was to be included in it.
We had to vacate our house on the 15th March 2011.
Now we were homeless.
Tuesday, 12 July 2011
Little miss smiles
Georgia was finally moved back onto the Nursery part of the Ocean ward 31 days after her admission. She had been weened off morphine but was hanging on to the last little bit of oxygen. If they took the oxygen off her, then her sats would drop slightly.
She had started smiling again. Really big beaming smiles. I was so proud of my beautiful little brave girl!
One morning when I arrived on the ward, I was told she had been completely off oxygen for 6 hours in her sleep. It hadn't affected her sats and she was doing well.
When they did ward rounds, the consultant told me that Georgia could return to our local hospital the following day! She was still on a drug for hypertension and needed to be weened off it, they knew that our local hospital would be able to do that.
From my previous experience at our local hospital, I was worried.
Although I wanted nothing more than for Georgia to come home, she was safer here than anywhere else. They had saved her life so many times. What if her airway collapsed again?
The next day, Georgia was to be transferred by ambulance over the water. Closer to home. I had so many emotions that day. I was devastated to be leaving all these wonderful people. I also felt exceptionally guilty for leaving the parents that I had made friends with.
Mike was travelling over with Georgia in the ambulance, as he was the only one she would behave for! I followed in my car.
As we were leaving the ward, we had so many people to say goodbye to. I cried the whole time. It's not that I didn't want to leave, its because these people went through the hardest part of our lives with us. It felt like I was taking Georgia away from the people that loved her as much as I do.
By the time we got to St Marys I had pulled myself together. It was weird being back there. It was like it had changed. We had been through so much since being there last.
It was only as I was leaving that evening that I realised. It wasn't the place that had changed, it was me. I have become who I am supposed to be.
Georgia has given me that. I am now more patient. I know that life is too short to waste it. If Georgia can be so strong, then so can I.
Even though we were back on home ground, Georgia still had some battles to win. She still had a feeding tube and we were trying to get her to take a bottle. It was hard for her as she had lost the ability to suck. She needed to though. No food or drink ever passed her lips. She constantly had a dry mouth, we used to have to change her tube and stick it back to her face. We also had to swab her mouth to moisten it and put Vaseline on her lips to stop them drying out.
We were told she would never drink from a bottle after having lost the suckling. Luckily that was a very stupid think to say to me. I was then all encompassed with getting her to drink.
Georgia would love to sit outside by the duck pond at the hospital. She had been in hospital for 36 days, this was the first bit of sunlight she got. I would sit there watching her with a ghost of a smile on my face. She would squint up into the sun and smile.
She appreciates the sun, the air, the trees, the clouds. All the things we take for granted.
She had started smiling again. Really big beaming smiles. I was so proud of my beautiful little brave girl!
One morning when I arrived on the ward, I was told she had been completely off oxygen for 6 hours in her sleep. It hadn't affected her sats and she was doing well.
When they did ward rounds, the consultant told me that Georgia could return to our local hospital the following day! She was still on a drug for hypertension and needed to be weened off it, they knew that our local hospital would be able to do that.
From my previous experience at our local hospital, I was worried.
Although I wanted nothing more than for Georgia to come home, she was safer here than anywhere else. They had saved her life so many times. What if her airway collapsed again?
The next day, Georgia was to be transferred by ambulance over the water. Closer to home. I had so many emotions that day. I was devastated to be leaving all these wonderful people. I also felt exceptionally guilty for leaving the parents that I had made friends with.
Mike was travelling over with Georgia in the ambulance, as he was the only one she would behave for! I followed in my car.
As we were leaving the ward, we had so many people to say goodbye to. I cried the whole time. It's not that I didn't want to leave, its because these people went through the hardest part of our lives with us. It felt like I was taking Georgia away from the people that loved her as much as I do.
By the time we got to St Marys I had pulled myself together. It was weird being back there. It was like it had changed. We had been through so much since being there last.
It was only as I was leaving that evening that I realised. It wasn't the place that had changed, it was me. I have become who I am supposed to be.
Georgia has given me that. I am now more patient. I know that life is too short to waste it. If Georgia can be so strong, then so can I.
Even though we were back on home ground, Georgia still had some battles to win. She still had a feeding tube and we were trying to get her to take a bottle. It was hard for her as she had lost the ability to suck. She needed to though. No food or drink ever passed her lips. She constantly had a dry mouth, we used to have to change her tube and stick it back to her face. We also had to swab her mouth to moisten it and put Vaseline on her lips to stop them drying out.
We were told she would never drink from a bottle after having lost the suckling. Luckily that was a very stupid think to say to me. I was then all encompassed with getting her to drink.
Georgia would love to sit outside by the duck pond at the hospital. She had been in hospital for 36 days, this was the first bit of sunlight she got. I would sit there watching her with a ghost of a smile on my face. She would squint up into the sun and smile.
She appreciates the sun, the air, the trees, the clouds. All the things we take for granted.
Saturday, 9 July 2011
Rehab
Georgia was on the ventilator for 7 days. When they took her off the second time, they decided to give her something called CPAP. Basically, it is just another form of ventilation, it's just less invasive.
This seemed to do the trick. As it was pushing air into her lungs, it strengthened the bronchial tubes that were the problem before.
Finally 3 days later, she came off CPAP and was breathing on her own. She was still being given a small amount of oxygen through her nose, and she was still on morphine for the pain. They wanted to send her back up to the Ocean Ward so the nurses there could try and ween her off both. If it was stopped straight away then she would crash.
The day she was being sent back to the Ward was the day Rob came to visit her, after not seeing her for a week. I had spent every moment with her, trying to make her smile or at least acknowledge I was there, I got no reaction. She was still in her world of pain.
The moment she saw Rob, a small shadow of a smile passed her face. I have never been so happy in my life. She smiled, a small smile, but a smile! Of course I was a bit miffed that after all my hard work it was Rob that caused it.
She went from strength to strength after that day. I thought that finally we were on the road to recovery and could go home! I was so pleased to be back on the Ocean Ward, with a smiling Georgia!
Then they started to reduce her morphine. She had been on it so long, she had started to depend on it. It was like my baby was in rehab. The day they reduced it, it was only by a tiny amount. She screamed for hours on end. They finally sedated her in the evening, partly for me to have a break, mainly for her to get some sleep.
When she finally drifted off in my arms, I slowly lowered her into the cot and gingerly stepped away. I know she was sedated but I was so scared she would wake up and scream again! It was only as I got a few meters away that I exhaled. I hadn't even realised I was holding my breath.
My whole body hurt. Probably nothing compared to the withdrawal pain she had. I was so mentally and physically exhausted at this point. I had hit a wall. There is always a moment when it all catches up, this was it. I went back to the house and fell asleep instantly.
I hope it doesn't sound too heartless but, the next day, I didn't want to go back. Not if it was going to be another day like the day before. My feet felt like lead as I dragged myself back to the ward with a heavy heart.
I could hear her screaming before I even entered the ward. On the plus side, all this screaming would strengthen her lungs!
The only nurse she would be content with on the Ward was Mike. She is a big softy when it comes to men! So for most of the day, Mike carried her around with him, or pushed her in a pram while he was working.
As soon as he went home the screaming started again. Sedation for sleep was used again. I went back to the house and felt the same way as the day before.
This became my groundhog day for 3 weeks. I went, she screamed, I comforted, they sedated. In between this, every now and then, a little shadow of Georgia's former self peeped through. She would smile when I sang to her. She still does that.
This seemed to do the trick. As it was pushing air into her lungs, it strengthened the bronchial tubes that were the problem before.
Finally 3 days later, she came off CPAP and was breathing on her own. She was still being given a small amount of oxygen through her nose, and she was still on morphine for the pain. They wanted to send her back up to the Ocean Ward so the nurses there could try and ween her off both. If it was stopped straight away then she would crash.
The day she was being sent back to the Ward was the day Rob came to visit her, after not seeing her for a week. I had spent every moment with her, trying to make her smile or at least acknowledge I was there, I got no reaction. She was still in her world of pain.
The moment she saw Rob, a small shadow of a smile passed her face. I have never been so happy in my life. She smiled, a small smile, but a smile! Of course I was a bit miffed that after all my hard work it was Rob that caused it.
She went from strength to strength after that day. I thought that finally we were on the road to recovery and could go home! I was so pleased to be back on the Ocean Ward, with a smiling Georgia!
Then they started to reduce her morphine. She had been on it so long, she had started to depend on it. It was like my baby was in rehab. The day they reduced it, it was only by a tiny amount. She screamed for hours on end. They finally sedated her in the evening, partly for me to have a break, mainly for her to get some sleep.
When she finally drifted off in my arms, I slowly lowered her into the cot and gingerly stepped away. I know she was sedated but I was so scared she would wake up and scream again! It was only as I got a few meters away that I exhaled. I hadn't even realised I was holding my breath.
My whole body hurt. Probably nothing compared to the withdrawal pain she had. I was so mentally and physically exhausted at this point. I had hit a wall. There is always a moment when it all catches up, this was it. I went back to the house and fell asleep instantly.
I hope it doesn't sound too heartless but, the next day, I didn't want to go back. Not if it was going to be another day like the day before. My feet felt like lead as I dragged myself back to the ward with a heavy heart.
I could hear her screaming before I even entered the ward. On the plus side, all this screaming would strengthen her lungs!
The only nurse she would be content with on the Ward was Mike. She is a big softy when it comes to men! So for most of the day, Mike carried her around with him, or pushed her in a pram while he was working.
As soon as he went home the screaming started again. Sedation for sleep was used again. I went back to the house and felt the same way as the day before.
This became my groundhog day for 3 weeks. I went, she screamed, I comforted, they sedated. In between this, every now and then, a little shadow of Georgia's former self peeped through. She would smile when I sang to her. She still does that.
Thursday, 30 June 2011
Angel Kisses
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.
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.
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.
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