The Day We Found Out About Dexter's Brain Damage
Taken from Dexter's Mother's blog (June 2011):
Dexter was born by emergency cesarean, and was living at RPA Hospital, in the Neo-Natal Intensive Care Unit.
A week ago today, our world once again turned upside down.
After coming back from our first day away from him, we were informed the doctor wanted to have a chat with us. We were taken into a special room with two doctors and a nurse. We were sat down and the doctor attempted small talk. Our nerves were frayed and tension was high.
Dexter had had a routine head ultrasound on his four week birthday, just checking for any abnormalities or concerns. Unfortunately, the doctor advised us that they had, in fact, found something in the white matter of his brain.
He called it Periventricular Leukomalacia, or PVL, or in more simple terms... brain damage.
When he said those two words, our world stopped. Thoughts, questions, anger, blame, guilt... all rushed through our minds, with the biggest, unanswerable one being: Why?
Why our little boy? Why us? Why?
The doctor can’t answer these questions, nor can he answer any of the questions that we have at the moment, which makes this situation all that more frustrating.
It was explained, the brain damage is likely to have been caused by one of two things; either a potential infection in his waters, or an event that took place in the first couple of days of his life. They cannot confirm if there was an infection, as I was given antibiotics. They will never confirm the latter.
It was explained, that it is very rare for this to occur in pre-term babies over 30 weeks gestation. Dexter was 31 weeks. None of this was fair.
It was explained, that this will impact on Dexter’s movement, and his learning and development. The doctors cannot indicate the extent of Dexter's limitations, nor can they confirm what areas will be affected.
It was explained, that on a scale of mild, moderate and severe, Dexter was sitting in the moderate section. We were advised to prepare ourselves that he will have some form of disability. We just don’t know what.
It was explained, that it is more than likely this will manifest into Cerebral Palsy. We just don’t know which form.
At lot was explained to us and our heads were full.
I was overcome with guilt, that something I may have done, could have caused this. I kept thinking of everything I had done that the books say you shouldn’t do... The occasional half a glass of wine, the occasional slice of deli meat, the less occasional slither of soft cheese. Then I remembered everyone telling me to slow down, get rest more, sleep more, don’t exercise as much.
Did I do this to him? Is it possible that I am the reason my little boy’s life is now going to be completely different to what it should have been? The doctor indicated, that nothing I did, would have caused the infection. This helped a little, but the self blame will always be there.
We made heart breaking phone calls to our families, explaining the situation and what we understood of it, which remains very limited. Those phone calls were among some of the hardest things we have had to do.
We made the decision to wait to tell others, until we had had the chance to get our very confused, full and hurting heads, around what we had been told.
Our hearts broke as we stood outside the hospital doors, holding each other and trying to make sense of what was going on. We discussed our first thoughts, comforting each other that we weren’t being selfish when we immediately thought of the worst case scenarios.
Would he be able to walk and run, let alone swing a golf club? Would he be able to communicate with us? Would he be able to care for himself? Would he grow up to be the strong independent young man we wanted him to be? Would his long limbs be able to carry him around and would his insanely long fingers ever be able to touch the keys of a piano?
Even before Dexter was born, we had so many hopes and dreams for him, half that were more than likely to never come true, but they were fun to think of. We thought of our childhoods and of parts that we wanted to share with him – sports, music, adventure, love, laughter, travel and family. We wondered now how much of these things he would be able to achieve and experience.
I felt that I had let everybody down. Everyone was just starting to see that there was a light at the end of the premature tunnel. We'd already endured a long, exhausting, frightening 30 days in the NICU, and then this happened... and I couldn’t give any answers.
I was angry. Angry at the doctors; angry at the nurses; angry at the receptionist. I was angry at the smiling and happy new families taking their babies home. I was angry at the television for showing ads with smiling, happy and healthy babies. I was angry at the mother’s who didn’t want to be mothers, but who had healthy babies. I was angry because it was raining. I was angry because it was a Sunday. I was just downright angry.
And then I was sad. Uncontrollable sadness. Sadness that would hit me out of nowhere. We spent the first night taking it in turns consoling each other. But I was still sad.
The anger left, the sadness remained. The first week was terrible. My husband was back at work, I was back in Sydney away from my family and keeping it to myself, pretending that all was ok. I cried myself to sleep. I cried on the bus. I cried walking. I cried at the hospital. I cried a lot.
But through it all, there is a silver lining.
We have now altered our plans for Dexter, but only slightly. We are a tough bunch and we will not let him get away with not pushing himself. We will attend appointments and we will have high expectations of him. He will chase his cousins around and push future siblings around. He will love us because he will know what love is. He will laugh at us and be embarrassed by us as we sing and dance and try our hardest to embarrass him, just as parents should.
We are lucky, we have the support of each other and our families. They have helped us more than they realise; through providing meals, financial support, an ear, happy stories, success stories and most importantly laughter.
When it comes down to it, Dexter is our son, our nephew, our cousin and our grandson. We love him, unconditionally, and this news is just a small blimp on what is going to be a great journey through life together.
Dexter was born by emergency cesarean, and was living at RPA Hospital, in the Neo-Natal Intensive Care Unit.
A week ago today, our world once again turned upside down.
After coming back from our first day away from him, we were informed the doctor wanted to have a chat with us. We were taken into a special room with two doctors and a nurse. We were sat down and the doctor attempted small talk. Our nerves were frayed and tension was high.
Dexter had had a routine head ultrasound on his four week birthday, just checking for any abnormalities or concerns. Unfortunately, the doctor advised us that they had, in fact, found something in the white matter of his brain.
He called it Periventricular Leukomalacia, or PVL, or in more simple terms... brain damage.
When he said those two words, our world stopped. Thoughts, questions, anger, blame, guilt... all rushed through our minds, with the biggest, unanswerable one being: Why?
Why our little boy? Why us? Why?
The doctor can’t answer these questions, nor can he answer any of the questions that we have at the moment, which makes this situation all that more frustrating.
It was explained, the brain damage is likely to have been caused by one of two things; either a potential infection in his waters, or an event that took place in the first couple of days of his life. They cannot confirm if there was an infection, as I was given antibiotics. They will never confirm the latter.
It was explained, that it is very rare for this to occur in pre-term babies over 30 weeks gestation. Dexter was 31 weeks. None of this was fair.
It was explained, that this will impact on Dexter’s movement, and his learning and development. The doctors cannot indicate the extent of Dexter's limitations, nor can they confirm what areas will be affected.
It was explained, that on a scale of mild, moderate and severe, Dexter was sitting in the moderate section. We were advised to prepare ourselves that he will have some form of disability. We just don’t know what.
It was explained, that it is more than likely this will manifest into Cerebral Palsy. We just don’t know which form.
At lot was explained to us and our heads were full.
I was overcome with guilt, that something I may have done, could have caused this. I kept thinking of everything I had done that the books say you shouldn’t do... The occasional half a glass of wine, the occasional slice of deli meat, the less occasional slither of soft cheese. Then I remembered everyone telling me to slow down, get rest more, sleep more, don’t exercise as much.
Did I do this to him? Is it possible that I am the reason my little boy’s life is now going to be completely different to what it should have been? The doctor indicated, that nothing I did, would have caused the infection. This helped a little, but the self blame will always be there.
We made heart breaking phone calls to our families, explaining the situation and what we understood of it, which remains very limited. Those phone calls were among some of the hardest things we have had to do.
We made the decision to wait to tell others, until we had had the chance to get our very confused, full and hurting heads, around what we had been told.
Our hearts broke as we stood outside the hospital doors, holding each other and trying to make sense of what was going on. We discussed our first thoughts, comforting each other that we weren’t being selfish when we immediately thought of the worst case scenarios.
Would he be able to walk and run, let alone swing a golf club? Would he be able to communicate with us? Would he be able to care for himself? Would he grow up to be the strong independent young man we wanted him to be? Would his long limbs be able to carry him around and would his insanely long fingers ever be able to touch the keys of a piano?
Even before Dexter was born, we had so many hopes and dreams for him, half that were more than likely to never come true, but they were fun to think of. We thought of our childhoods and of parts that we wanted to share with him – sports, music, adventure, love, laughter, travel and family. We wondered now how much of these things he would be able to achieve and experience.
I felt that I had let everybody down. Everyone was just starting to see that there was a light at the end of the premature tunnel. We'd already endured a long, exhausting, frightening 30 days in the NICU, and then this happened... and I couldn’t give any answers.
I was angry. Angry at the doctors; angry at the nurses; angry at the receptionist. I was angry at the smiling and happy new families taking their babies home. I was angry at the television for showing ads with smiling, happy and healthy babies. I was angry at the mother’s who didn’t want to be mothers, but who had healthy babies. I was angry because it was raining. I was angry because it was a Sunday. I was just downright angry.
And then I was sad. Uncontrollable sadness. Sadness that would hit me out of nowhere. We spent the first night taking it in turns consoling each other. But I was still sad.
The anger left, the sadness remained. The first week was terrible. My husband was back at work, I was back in Sydney away from my family and keeping it to myself, pretending that all was ok. I cried myself to sleep. I cried on the bus. I cried walking. I cried at the hospital. I cried a lot.
But through it all, there is a silver lining.
We have now altered our plans for Dexter, but only slightly. We are a tough bunch and we will not let him get away with not pushing himself. We will attend appointments and we will have high expectations of him. He will chase his cousins around and push future siblings around. He will love us because he will know what love is. He will laugh at us and be embarrassed by us as we sing and dance and try our hardest to embarrass him, just as parents should.
We are lucky, we have the support of each other and our families. They have helped us more than they realise; through providing meals, financial support, an ear, happy stories, success stories and most importantly laughter.
When it comes down to it, Dexter is our son, our nephew, our cousin and our grandson. We love him, unconditionally, and this news is just a small blimp on what is going to be a great journey through life together.
Sometimes, it all seems too hard...
This was taken from Dexter's Mum's blog (February 2013):
I always knew having two kids would be harder than one. Everything has to be doubled – twice the feeds, twice the nappies, twice the baths... Some days it seems all I do is feed, change, feed, change, feed, change – sleep! Some days pass in a blur, with appointments and therapies having to be completed. Some days never seem to end and some pass by uneventfully.
I have watched others with multiple kids, so I knew what to expect and I knew it could be done. But then, my kids were different. Things take longer. Things are harder.
I can’t leave a piece of toast in front of Dexter at breakfast knowing that he will eat it – I have to feed him – every meal. I can’t sit a cup of water down, knowing he will drink it throughout the day – I have to do this for him – all day. I can’t just sit him down on the ground to watch tv – I have to sit with him, to ensure he has support around his trunk.
If we go for a drive somewhere, it takes me at least three trips to the car. This is one of the hardest things at the moment for me. It’s like I have twins, but one who weighs twice as much as the other and can’t hold on and sometimes can’t hold his head up and is totally reliant on me, for everything.
For me to go grocery shopping, I have to have my husband with me. Dexter is too big for the baby seats in the trolleys and the toddler seat is too low, meaning he falls backwards. There's not enough support for him. So, if I do need to go to the shops on my own, it’s only for small things that fit in the basket – and I have to make sure it doesn’t get overloaded – the pram is heavy, and difficult to push one handed.
I live about a minutes walk to the beach and yet, I can’t go there on my own, with the two kids. The pram would never work on the sand and I can’t exactly carry one down and then go and get the other....
It’s hard.
I get sad when we go to the park. I get sad when others complain about insignificant little things. I get sad when I have to take Dexter to the hospital. I get sad if I have missed doing some of his therapies in a day.
I get sad a lot....
And then I get cranky. I get cranky that people can’t enjoy the small things. I get cranky when people try and compete. I get cranky when people stare and judge and pity.
And I get cranky that people see my sad days as being something other than what they are. I've had a tough two years. Things didn’t turn out like I thought they would. I'm entitled to get sad, every now and then!
Despite what people think and assume, I'm not depressed and I'm certainly not sick. I know when I'm having a bad day and can admit it. I cry. I talk to people about it – I'm a lot more open now about everything, then I was when this journey first started. And I hug my kids so tight they squirm away.
I've learnt to appreciate every day and every small little achievement. This morning, Dexter drank from a cup and didn’t spit it out and he has been standing in his frame for close to an hour and I haven’t had to go and push his head forward once. These are two massive things for us.
Our life is tough, but it’s filled with much love and support and to those people, I am eternally grateful. And I'm thankful for having a determined little boy, who is developing and getting stronger every day and who shows us that we are to never give up – despite what some people think!
I always knew having two kids would be harder than one. Everything has to be doubled – twice the feeds, twice the nappies, twice the baths... Some days it seems all I do is feed, change, feed, change, feed, change – sleep! Some days pass in a blur, with appointments and therapies having to be completed. Some days never seem to end and some pass by uneventfully.
I have watched others with multiple kids, so I knew what to expect and I knew it could be done. But then, my kids were different. Things take longer. Things are harder.
I can’t leave a piece of toast in front of Dexter at breakfast knowing that he will eat it – I have to feed him – every meal. I can’t sit a cup of water down, knowing he will drink it throughout the day – I have to do this for him – all day. I can’t just sit him down on the ground to watch tv – I have to sit with him, to ensure he has support around his trunk.
If we go for a drive somewhere, it takes me at least three trips to the car. This is one of the hardest things at the moment for me. It’s like I have twins, but one who weighs twice as much as the other and can’t hold on and sometimes can’t hold his head up and is totally reliant on me, for everything.
For me to go grocery shopping, I have to have my husband with me. Dexter is too big for the baby seats in the trolleys and the toddler seat is too low, meaning he falls backwards. There's not enough support for him. So, if I do need to go to the shops on my own, it’s only for small things that fit in the basket – and I have to make sure it doesn’t get overloaded – the pram is heavy, and difficult to push one handed.
I live about a minutes walk to the beach and yet, I can’t go there on my own, with the two kids. The pram would never work on the sand and I can’t exactly carry one down and then go and get the other....
It’s hard.
I get sad when we go to the park. I get sad when others complain about insignificant little things. I get sad when I have to take Dexter to the hospital. I get sad if I have missed doing some of his therapies in a day.
I get sad a lot....
And then I get cranky. I get cranky that people can’t enjoy the small things. I get cranky when people try and compete. I get cranky when people stare and judge and pity.
And I get cranky that people see my sad days as being something other than what they are. I've had a tough two years. Things didn’t turn out like I thought they would. I'm entitled to get sad, every now and then!
Despite what people think and assume, I'm not depressed and I'm certainly not sick. I know when I'm having a bad day and can admit it. I cry. I talk to people about it – I'm a lot more open now about everything, then I was when this journey first started. And I hug my kids so tight they squirm away.
I've learnt to appreciate every day and every small little achievement. This morning, Dexter drank from a cup and didn’t spit it out and he has been standing in his frame for close to an hour and I haven’t had to go and push his head forward once. These are two massive things for us.
Our life is tough, but it’s filled with much love and support and to those people, I am eternally grateful. And I'm thankful for having a determined little boy, who is developing and getting stronger every day and who shows us that we are to never give up – despite what some people think!