Madison's dream
Donation protected
At our 20 week scan we found A problem with the heart. We made the trip down to great ormond street (gosh) to see a cardiac specialist after a weekend of thinking the worst. We were told after a long wait that Madison has hypoplastic left heart syndrome (hlhs). Which means she only has one working ventricle in her heart. She also has no aorta hers is just a few MM. Our consultant told us the chances of survival were slim. We were offered surgery which would be three stages but it is just palliative care meaning eventually she will go into heart failure and they won't be able to fix hers anymore, meaning a heart transplant is required. So we were offered a termination but we decided to let her fight. Over the next 20 weeks we had scans every 4 weeks and visited gosh to look at the wards and see our nurse. We decided not to buy anything for her untill we could take her home.
Madison was born on the 7th June at 10.30am. She came out screaming! She was taken from us straight away to start her treatment and scan her heart (echo) and send of genetic testings. When we finally saw her she was still very upset but she was very much alive and fighting! The following day we got the call that gosh were ready for her. She went via an emergency ambulance (cats) she had an echo as soon as she was settled and examined by the doctors then they started some fluids. We waited 7 days before it was time for her first open heart surgery (Norwood). This is where they put a shunt in to start building a fully functioning heart. She was in theatre 7 hours. After a few complications of not being able to control the bleeding she came back to us in intensive care. Her chest was left open for a few days to let her recover. She was on a ventilator for 6 days and lots of medicines to help her heart/lungs to recover. After 8 days she came up to high dependency ward (bear) where she recovered amazingly. We discovered though that something was wrong. Her breathing was very noisey and she was struggling to cry. She had a scan and they discovered she had a vocal chord problem. Vocal palsy and laryngomalaysia. So she only has one working vocal chord. We also noticed she was getting blue and was looking very mottled. So she had an echo where they found her aorta was too narrow so her blood wasn't flowing correctly. So surgery was needed. All this happened while I was at home with our other two children as we had no childcare. So at the beginning of July Madison went for surgery number 2 to have a ballooning procedure done. After that she was a lot better. In August we started looking at bottle feeding her but that quickly went wrong and she started choking so we were told she was nil by mouth due to choking so she is currently waiting to have her peg fitted for feeding. At the end of August Madison took a turn and got very poorly after an intense echo it was found her aorta has narrowed further so she would need more surgery so on the 30th August Madison went down for her third surgery to have a stenth put in her aorta to help the flow. This surgery has made a drastic improvement to her quality of life and she is finally after almost 3 months warm to touch and not blue!
Madison is still in gosh and will stay there till her second stage of surgery when she is big enough ( her doctors want her to be 5.5kgs and 4 months old) these are the minimum guidelines but we would like Madison to be as old as possible sos he can handle surgery. She also needs her peg inserting and for us to receive training on how to look after it.
So that is a small insight into Madison's short life! We would love to raise some money to fund anything she may need when she gets home. At the moment she needs a special cot that I can recline as she has to be sat up all the time. She also needs a chair to do the same thing. She will need a car seat and pushchair to suit her needs and fit all her equipment in for trips out/hospital. We also need storage for all her medical equipment including a freezer for her milk. Plus all the basic bits a baby needs.
Simon has had to stop working in order for us to care for our other two children so our income has dropped dramatically. We have also had to move house to accommodate Madison's needs. This is happening while she is in hospital so another financial strain on our family.
If you could spare any money to help make Madison's life as easy as possible we would greatly appreciate it or know of any other ways to help us :)
I will also be doing a blog with updates on Madison's journey with photos and videos
Madison was born on the 7th June at 10.30am. She came out screaming! She was taken from us straight away to start her treatment and scan her heart (echo) and send of genetic testings. When we finally saw her she was still very upset but she was very much alive and fighting! The following day we got the call that gosh were ready for her. She went via an emergency ambulance (cats) she had an echo as soon as she was settled and examined by the doctors then they started some fluids. We waited 7 days before it was time for her first open heart surgery (Norwood). This is where they put a shunt in to start building a fully functioning heart. She was in theatre 7 hours. After a few complications of not being able to control the bleeding she came back to us in intensive care. Her chest was left open for a few days to let her recover. She was on a ventilator for 6 days and lots of medicines to help her heart/lungs to recover. After 8 days she came up to high dependency ward (bear) where she recovered amazingly. We discovered though that something was wrong. Her breathing was very noisey and she was struggling to cry. She had a scan and they discovered she had a vocal chord problem. Vocal palsy and laryngomalaysia. So she only has one working vocal chord. We also noticed she was getting blue and was looking very mottled. So she had an echo where they found her aorta was too narrow so her blood wasn't flowing correctly. So surgery was needed. All this happened while I was at home with our other two children as we had no childcare. So at the beginning of July Madison went for surgery number 2 to have a ballooning procedure done. After that she was a lot better. In August we started looking at bottle feeding her but that quickly went wrong and she started choking so we were told she was nil by mouth due to choking so she is currently waiting to have her peg fitted for feeding. At the end of August Madison took a turn and got very poorly after an intense echo it was found her aorta has narrowed further so she would need more surgery so on the 30th August Madison went down for her third surgery to have a stenth put in her aorta to help the flow. This surgery has made a drastic improvement to her quality of life and she is finally after almost 3 months warm to touch and not blue!
Madison is still in gosh and will stay there till her second stage of surgery when she is big enough ( her doctors want her to be 5.5kgs and 4 months old) these are the minimum guidelines but we would like Madison to be as old as possible sos he can handle surgery. She also needs her peg inserting and for us to receive training on how to look after it.
So that is a small insight into Madison's short life! We would love to raise some money to fund anything she may need when she gets home. At the moment she needs a special cot that I can recline as she has to be sat up all the time. She also needs a chair to do the same thing. She will need a car seat and pushchair to suit her needs and fit all her equipment in for trips out/hospital. We also need storage for all her medical equipment including a freezer for her milk. Plus all the basic bits a baby needs.
Simon has had to stop working in order for us to care for our other two children so our income has dropped dramatically. We have also had to move house to accommodate Madison's needs. This is happening while she is in hospital so another financial strain on our family.
If you could spare any money to help make Madison's life as easy as possible we would greatly appreciate it or know of any other ways to help us :)
I will also be doing a blog with updates on Madison's journey with photos and videos
Organizer
Felicity Parry
Organizer
