Hi everyone,
Freddie is recovering well from his surgery. His blood tests have been good all day and he is not on a lot of medication compared to what he was when he first came out of theatre!
They were so happy with how he was doing that the doctor agreed to see how he went breathing on his own. They switched his ventilator off but he wasn't quite ready so he has still got the breathing tube in. After a recent phone call we have learned that he is now on something called 'cpap' through his tube rather than full ventilation and is coping very well which is a very positive step towards them taking his ventilation tube out.
We were in Leicester for quite a while today but didn't actually get to spend a significant amount of time at Freddie's side. Either the doctors doing their rounds, nurses carrying out tests etc on Freddie or us entertaining Samuel by taking him to the park prevented us from spending much time with him. To be honest it is very difficult to spend time with him when he is in the intensive care unit as he is receiving constant attention from the professionals and lack of sleep and stress mean that the time Jon and I can cope with the bleeping machines and poorly children has significantly diminished recently! He is receiving fantastic care which we are so grateful for but as parents it is difficult to walk away from him.
It has all been good news today and we feel like we can breathe easy for the time being.
With Freddie's fighting spirit we wouldn't be surprised if he was off his ventilator by tomorrow.
xxx
Friday 30 September 2011
Thursday 29 September 2011
Thursday 29th September - part two.
Good news
Freddie's heart operation has gone well. The surgeon rang at about 12:30pm which was very scary as we weren't expecting to hear that early and also not expecting to hear directly from the surgeon himself. He told us that he had performed the coarctation repair but had to disconnect the blood vessel that was in the way. They had tested the blood flow to the arm that the vessel went to and it was good so they were happy.
We visited him once he was back in the intensive care unit. He doesn't look his best bless him, lots of wires going in and out and he's on the ventilator but we knew that would be the case. They are monitoring him very closely and are taking blood at regular intervals. They do a blood gas test every hour and the nurse said the results were getting better every time. It is just a case of giving him time to recover from the surgery and hoping there are no more hurdles to get over.
We saw the surgeon briefly (the less time he spends with us the better the news!) and he said that he was able to perform the 'end to end' coarctation repair which is the preferred method. He said that if any problems develop with his arm then he would be able to re-attach the the disconnected blood vessel. The reason that he couldn't re-connect the blood vessel during today's surgery was because he had to stop the blood flow to Freddie's spine and this can only be done for a certain amount of time before there is a significant risk of causing damage.
We are still aware that Freddie still has some fighting to do to recover but we are very relieved that he has had his heart surgery and has come through it still fighting.
Our little man is showing his determination to get home.
Thank you so much to everyone for their concern, support, prayers and words of comfort since Freddie arrived early but especially over the last couple of days, keep it coming people!
I'm not going to post any more photos till Freddie is off his ventilator.
Lots of Love
Aimee xxx
Our little man is showing his determination to get home.
Thank you so much to everyone for their concern, support, prayers and words of comfort since Freddie arrived early but especially over the last couple of days, keep it coming people!
I'm not going to post any more photos till Freddie is off his ventilator.
Lots of Love
Aimee xxx
Thursday 29th September 2011
No post yesterday as we didn't have a very good day and by the time we got home we were completely exhausted.
So, Freddie went into theatre for his heart surgery at about 9am yesterday. Jon and I spent the next five hours sitting around outside the hospital waiting to hear some news. At about 1:30pm I rang the intensive care unit and they said they were expecting Freddie back from theatre within half an hour. This was great news, as you sit there thinking the absolute worse. When we got to the unit they were just getting Freddie sorted back in his spot so we sat in the family room waiting. In came the surgeon and his assistant and the nurse, shutting the door behind them. The surgeon (Mr Lotto) proceeded to tell us that when he got in to look at Freddie's heart things weren't as he expected. It's fair to say at this point that I felt like somebody had punched me in the stomach and I don't really remember anything else said at this meeting because tears and hyperventilating took over.
The info we got was that they were going to do an emergency CT scan on Freddie to get further information as there was an issue over the blood flow to his brain.
After more agonising waiting and Freddie's CT scan we were joined in the family room by an even larger group of important looking people. What we understand is that in the middle of the narrow area of Freddie's aorta there is a blood vessel leading away from the heart. The surgeon was aware of this and it was thought that the blood in this vessel was flowing to his left arm. In order to correct the narrowing the surgeon has to remove the narrow part of the aorta then fix it back together. There is a good chance that the vessel coming off the narrow area will have to be sacrificed. This very rarely causes a problem for the baby's arm as blood is found from elsewhere for the development of the arm. However, when the surgeon clamped the vessel he expected to not be able to find a pulse in Freddie's left arm, this was not the case and there became some doubt over whether or not the vessel actually carried blood to Freddie's brain. The consultant cardiologist scrubbed in and was only 95% sure that it did not go to his brain so no procedure was carried out. Freddie was closed up and brought back to intensive care. The consultant explained that 95% was not good enough to take the risk of stopping the blood flow to Freddie's brain.
Bare with me.... after his CT scan and further tests and scans they then came to us at 8pm and said that they were now 100% certain that the vessel did not go to his brain and therefore the blood flow would not be compromised.
So, Freddie is back in theatre this morning having his coarctation repaired this time hopefully.
Sorry if that didn't make much sense, it is all very overwhelming and worrying.
Hopefully the next post will be good news.
xx
So, Freddie went into theatre for his heart surgery at about 9am yesterday. Jon and I spent the next five hours sitting around outside the hospital waiting to hear some news. At about 1:30pm I rang the intensive care unit and they said they were expecting Freddie back from theatre within half an hour. This was great news, as you sit there thinking the absolute worse. When we got to the unit they were just getting Freddie sorted back in his spot so we sat in the family room waiting. In came the surgeon and his assistant and the nurse, shutting the door behind them. The surgeon (Mr Lotto) proceeded to tell us that when he got in to look at Freddie's heart things weren't as he expected. It's fair to say at this point that I felt like somebody had punched me in the stomach and I don't really remember anything else said at this meeting because tears and hyperventilating took over.
The info we got was that they were going to do an emergency CT scan on Freddie to get further information as there was an issue over the blood flow to his brain.
After more agonising waiting and Freddie's CT scan we were joined in the family room by an even larger group of important looking people. What we understand is that in the middle of the narrow area of Freddie's aorta there is a blood vessel leading away from the heart. The surgeon was aware of this and it was thought that the blood in this vessel was flowing to his left arm. In order to correct the narrowing the surgeon has to remove the narrow part of the aorta then fix it back together. There is a good chance that the vessel coming off the narrow area will have to be sacrificed. This very rarely causes a problem for the baby's arm as blood is found from elsewhere for the development of the arm. However, when the surgeon clamped the vessel he expected to not be able to find a pulse in Freddie's left arm, this was not the case and there became some doubt over whether or not the vessel actually carried blood to Freddie's brain. The consultant cardiologist scrubbed in and was only 95% sure that it did not go to his brain so no procedure was carried out. Freddie was closed up and brought back to intensive care. The consultant explained that 95% was not good enough to take the risk of stopping the blood flow to Freddie's brain.
Bare with me.... after his CT scan and further tests and scans they then came to us at 8pm and said that they were now 100% certain that the vessel did not go to his brain and therefore the blood flow would not be compromised.
So, Freddie is back in theatre this morning having his coarctation repaired this time hopefully.
Sorry if that didn't make much sense, it is all very overwhelming and worrying.
Hopefully the next post will be good news.
xx
Tuesday 27 September 2011
Tuesday 27th September 2011
Only a short post tonight.
Freddie has had a good day. He was wide awake this morning for quite a while when I was there. He took 20ml of milk from his bottle which is brill.
Freddie has lost some weight, he weighs 2.2 kg now. It's quite a significant drop but he looks more like himself where as before he was looking quite swollen from excess fluid.
Still on track for surgery tomorrow, hopefully in the morning but the intensive care unit at Glenfield is very busy at the moment, as is the children's ward so it could be in the afternoon.
Freddie's got a bit of a crew cut now! He's only got one hat on now because once again one of his cannula's stopped working overnight. He's got shaved head patches all over, bless him!
'the boss' The babygro says it all!
A nervous night for us tonight. Any finger crossing, touching of wood, prayers, positive vibes etc would be much appreciated tomorrow.
xx
Freddie has had a good day. He was wide awake this morning for quite a while when I was there. He took 20ml of milk from his bottle which is brill.
Freddie has lost some weight, he weighs 2.2 kg now. It's quite a significant drop but he looks more like himself where as before he was looking quite swollen from excess fluid.
Still on track for surgery tomorrow, hopefully in the morning but the intensive care unit at Glenfield is very busy at the moment, as is the children's ward so it could be in the afternoon.
A nervous night for us tonight. Any finger crossing, touching of wood, prayers, positive vibes etc would be much appreciated tomorrow.
xx
Monday 26 September 2011
Monday 26th September 2011
It's looking like Wednesday will be the day!
Doctors have told me today that Freddie will be having his heart operation on Wednesday, all being well. We knew the day was coming and it's great that he's going to have his heart repaired but we're also feeling very anxious at the thought of him having to have surgery.
I had a nice day with Freddie today, bit of a shock when I got there because he has now got two cannula's going into his head! You just don't know whether to laugh or cry when you see him. At least the poor little thing has got his hands and feet free now.
He is getting better at taking milk from the bottle and is now on two-hourly feeds rather than every hour.
He's also started producing stinky nappies again which is a great sign that everything is working as it should! Not so great when he decides to do a projectile poo just as I'm changing his nappy though! Nice.
'Look at me growing!' In newborn size nappies now instead of micro size (even if they are rather big on me!). 'If you think your getting this dummy out you've got another think coming!'
He may be smiling but he has told me that Mickey Mouse and Princess Lea jokes will not be appreciated.
Goodnight xx
Doctors have told me today that Freddie will be having his heart operation on Wednesday, all being well. We knew the day was coming and it's great that he's going to have his heart repaired but we're also feeling very anxious at the thought of him having to have surgery.
I had a nice day with Freddie today, bit of a shock when I got there because he has now got two cannula's going into his head! You just don't know whether to laugh or cry when you see him. At least the poor little thing has got his hands and feet free now.
He is getting better at taking milk from the bottle and is now on two-hourly feeds rather than every hour.
He's also started producing stinky nappies again which is a great sign that everything is working as it should! Not so great when he decides to do a projectile poo just as I'm changing his nappy though! Nice.
'Look at me growing!' In newborn size nappies now instead of micro size (even if they are rather big on me!). 'If you think your getting this dummy out you've got another think coming!'
He may be smiling but he has told me that Mickey Mouse and Princess Lea jokes will not be appreciated.
Goodnight xx
Sunday 25 September 2011
Sunday 25th September 2011
Hello!
We've had a full day at Glenfield today, spending time with Freddie and also entertaining his older bro!
Freddie continuing to do well. He had lost a very small amount of weight when they weighed him this morning. They are keeping his fluids up as well as increasing his feeds because they do not want him to lose a lot of weight, especially before his surgery.
We got to have lots of cuddles today and things were going very well until one of his cannula's (line going into his hand) stopped working again! Overnight the doctors had to put another cannula in because one had stopped working so this morning he had one in his hand and one in his foot. The poor little mite has been poked with these things so much that they tried and tried but couldn't find a vein this afternoon. The nurse came and told us that they would have to put one in his scalp which would mean shaving a patch of hair off. Obviously rather distraught at the thought of him having to have this done as it must be very uncomfortable and painful. We didn't watch while they did it - don't think I'd be able to without passing out/breaking down in tears!
He needs to have these lines going in to have his medicine and to have the fluids he needs.
Freddie not looking his best after he had his new line put in. He had a good sleep after they did it though and seemed nice and comfortable.
Apparently he has to have this strange looking hat on (a plastic beaker stuck on!) until the line can come out which makes cuddling him a little bit more awkward!
It's not all bad though, because other than the unfortunate cannula experience he is doing really well. He is really stable and all of the regular tests that the doctors carry out are showing good results. He is still taking some of his feeds in a bottle and some through his tube because he is fed every hour so it is tiring for him.
Looking forward to lots of cuddles with him tomorrow. Will remind him of all the drama he caused us in these early days until he is at least 40 years old!
xx
We've had a full day at Glenfield today, spending time with Freddie and also entertaining his older bro!
Freddie continuing to do well. He had lost a very small amount of weight when they weighed him this morning. They are keeping his fluids up as well as increasing his feeds because they do not want him to lose a lot of weight, especially before his surgery.
We got to have lots of cuddles today and things were going very well until one of his cannula's (line going into his hand) stopped working again! Overnight the doctors had to put another cannula in because one had stopped working so this morning he had one in his hand and one in his foot. The poor little mite has been poked with these things so much that they tried and tried but couldn't find a vein this afternoon. The nurse came and told us that they would have to put one in his scalp which would mean shaving a patch of hair off. Obviously rather distraught at the thought of him having to have this done as it must be very uncomfortable and painful. We didn't watch while they did it - don't think I'd be able to without passing out/breaking down in tears!
He needs to have these lines going in to have his medicine and to have the fluids he needs.
Freddie not looking his best after he had his new line put in. He had a good sleep after they did it though and seemed nice and comfortable.
Apparently he has to have this strange looking hat on (a plastic beaker stuck on!) until the line can come out which makes cuddling him a little bit more awkward!
It's not all bad though, because other than the unfortunate cannula experience he is doing really well. He is really stable and all of the regular tests that the doctors carry out are showing good results. He is still taking some of his feeds in a bottle and some through his tube because he is fed every hour so it is tiring for him.
Looking forward to lots of cuddles with him tomorrow. Will remind him of all the drama he caused us in these early days until he is at least 40 years old!
xx
Saturday 24 September 2011
Saturday 24th September 2011
Today we got to spend quite a lot of time with Freddie which was lovely. When Jon and I arrived at his ward Freddie was just being weighed:
What a big boy! Freddie has put weight on and now weighs 2.4kg which is roughly 5 lb 5!
We gave Freddie his 1ml feed of my milk via syringe into his mouth when we got there. He did really well licking and supping it down.
The nurses had a bit of trouble in the night with Freddie because he decided to have a good pull at all of his wires and ended up pulling out his long line (into his neck) which is where his TPN goes in and he also pulled out the tube in his nose, also one of the lines into his hand stopped working!
The doctor came round and said rather than putting another long line into Freddie which is an unpleasant procedure for him they decided to increase his feeds rapidly in order for him to to get all the nutrients he needs. So his feeds went up to 4ml every hour then tonight they will increase to 8ml every hour. We gave him a couple of feeds in his mouth but he was quite tired after that so he had one into his tube. However just before we left we got to give him his first little bottle feed as he had been rudely awoken by the nurse taking his blood!
The doctors carried out an Echo scan on Freddie's heart this morning. They are happy that his heart is coping well whilst he is on the medication which keeps his aorta open. The surgeon explained that they would like to carry out his surgery next week. It sounds like on Wednesday they will assess whether his stomach is coping with feeds OK and if it is then they have said the operation will probably be on Thursday.
It's a very strange feeling involving mixed emotions again because the thought of him having heart surgery is terrifying but on the other hand he needs this procedure and the quicker it is done the quicker he can start recovering.
Goodnight all!
xx
Samuel quote of the day: "Grandpops, you've got attitude." They both have!
What a big boy! Freddie has put weight on and now weighs 2.4kg which is roughly 5 lb 5!
We gave Freddie his 1ml feed of my milk via syringe into his mouth when we got there. He did really well licking and supping it down.
The nurses had a bit of trouble in the night with Freddie because he decided to have a good pull at all of his wires and ended up pulling out his long line (into his neck) which is where his TPN goes in and he also pulled out the tube in his nose, also one of the lines into his hand stopped working!
The doctor came round and said rather than putting another long line into Freddie which is an unpleasant procedure for him they decided to increase his feeds rapidly in order for him to to get all the nutrients he needs. So his feeds went up to 4ml every hour then tonight they will increase to 8ml every hour. We gave him a couple of feeds in his mouth but he was quite tired after that so he had one into his tube. However just before we left we got to give him his first little bottle feed as he had been rudely awoken by the nurse taking his blood!
The doctors carried out an Echo scan on Freddie's heart this morning. They are happy that his heart is coping well whilst he is on the medication which keeps his aorta open. The surgeon explained that they would like to carry out his surgery next week. It sounds like on Wednesday they will assess whether his stomach is coping with feeds OK and if it is then they have said the operation will probably be on Thursday.
It's a very strange feeling involving mixed emotions again because the thought of him having heart surgery is terrifying but on the other hand he needs this procedure and the quicker it is done the quicker he can start recovering.
Goodnight all!
xx
Samuel quote of the day: "Grandpops, you've got attitude." They both have!
Friday 23 September 2011
Friday 23rd September 2011
Good news, Freddie is back at Glenfield hospital and on the children's ward instead of the intensive care unit!
When I rang the hospital this morning the nurse looking after Freddie said everyone had given the nod for him to be transferred and that they were waiting for confirmation that there was space for him on the children's ward at Glenfield. We tried not to get our hopes up too much as we have been in that situation before, however the ambulance came to transfer him from the Royal to Glenfield at around three pm. Whoo.
Everyone at the Royal has been fantastic but the move to Glenfield is a big positive step in the right direction as it means he is where he needs to be for his heart surgery.
We got to him at Glenfield just as he was being moved from the 'transporter' to his new bed so we had a nice cuddle before they hooked him up to his machines:
Freddie is also starting back on his feeds tonight! He will only start on one ml every hour which is only a drop but its a good start and if his stomach is OK the amount will be increased every 12 hours.
While he has been 'nil by mouth' Freddie has been given something called 'TPN' which I now know stands for Total Parenteral Nutrition. This has been given to him intravenously and contains nutrients such as salts, glucose, and vitamins.
Before we left the hospital tonight the nurses at Glenfield were waiting for Freddie's TPN to be delivered from the Royal hospital pharmacy. Because the last hospital transport run is at 4pm, Freddie's TPN was being delivered to the hospital via taxi! How surreal...a nurse booking a taxi to carry our son's vital nutrients!
We have just rang the hospital and the TPN has arrived safely and they were about to give him his first 1ml feed which they said they are going to give by mouth rather than in his feeding tube as it'll be nice for him to wet his lips and mouth.
Freddie's feet are still a bit swollen but the doctor took a look and didn't seem to concerned.
The experience of Freddie being on a ward rather than in intensive care looks like it is going to be very different from what we have experienced so far. It's much more family friendly in there with play rooms (a life size Thomas the tank engine which Samuel loves!) bedrooms for parents to stay, a kitchen etc. We got chatting straight away to the couple who's baby is next to Freddie and who also has coarctation of the aorta. It is nice to speak to people that are going through the same kind of thing that we are.
'Heart Link' is the East Midlands children's charity that provide support for parents and families who have a child suffering from a heart defect. They also raise money in order to improve the facilities for the children and parents and to provide valuable medical equipment. We have seen so much evidence of the contribution this charity makes to improving the care a child receives and also the facilities available to families.
Freddie's gorgeous 'Heart Link' teddy which was in his goody bag which the charity provide to all new patients.
I believe this charity will be a big part of our lives in the future and we are already so grateful for their support. See the link below for their website with information about what they do and fundraising.
http://www.heartlink-glenfield.org.uk/
The light at the end of the tunnel is getting bigger and brighter.
No Samuel quote of the day to leave you with today, instead, a picture of the kind of thing I have to deal with on a daily basis.....
Scary. xx
When I rang the hospital this morning the nurse looking after Freddie said everyone had given the nod for him to be transferred and that they were waiting for confirmation that there was space for him on the children's ward at Glenfield. We tried not to get our hopes up too much as we have been in that situation before, however the ambulance came to transfer him from the Royal to Glenfield at around three pm. Whoo.
Everyone at the Royal has been fantastic but the move to Glenfield is a big positive step in the right direction as it means he is where he needs to be for his heart surgery.
We got to him at Glenfield just as he was being moved from the 'transporter' to his new bed so we had a nice cuddle before they hooked him up to his machines:
Freddie is also starting back on his feeds tonight! He will only start on one ml every hour which is only a drop but its a good start and if his stomach is OK the amount will be increased every 12 hours.
While he has been 'nil by mouth' Freddie has been given something called 'TPN' which I now know stands for Total Parenteral Nutrition. This has been given to him intravenously and contains nutrients such as salts, glucose, and vitamins.
Before we left the hospital tonight the nurses at Glenfield were waiting for Freddie's TPN to be delivered from the Royal hospital pharmacy. Because the last hospital transport run is at 4pm, Freddie's TPN was being delivered to the hospital via taxi! How surreal...a nurse booking a taxi to carry our son's vital nutrients!
We have just rang the hospital and the TPN has arrived safely and they were about to give him his first 1ml feed which they said they are going to give by mouth rather than in his feeding tube as it'll be nice for him to wet his lips and mouth.
Freddie's feet are still a bit swollen but the doctor took a look and didn't seem to concerned.
The experience of Freddie being on a ward rather than in intensive care looks like it is going to be very different from what we have experienced so far. It's much more family friendly in there with play rooms (a life size Thomas the tank engine which Samuel loves!) bedrooms for parents to stay, a kitchen etc. We got chatting straight away to the couple who's baby is next to Freddie and who also has coarctation of the aorta. It is nice to speak to people that are going through the same kind of thing that we are.
'Heart Link' is the East Midlands children's charity that provide support for parents and families who have a child suffering from a heart defect. They also raise money in order to improve the facilities for the children and parents and to provide valuable medical equipment. We have seen so much evidence of the contribution this charity makes to improving the care a child receives and also the facilities available to families.
Freddie's gorgeous 'Heart Link' teddy which was in his goody bag which the charity provide to all new patients.
I believe this charity will be a big part of our lives in the future and we are already so grateful for their support. See the link below for their website with information about what they do and fundraising.
http://www.heartlink-glenfield.org.uk/
The light at the end of the tunnel is getting bigger and brighter.
No Samuel quote of the day to leave you with today, instead, a picture of the kind of thing I have to deal with on a daily basis.....
Thursday 22 September 2011
Heart history
An attempt to explain Freddie's heart problems.
The decision to deliver Freddie was made by doctors at Nottingham City hospital when I went in because I had a small bleed. The bleed was considered normal because my twenty week scan had shown that my placenta was low lying. However when they started checking how the baby was, the monitor was showing a heart rate of well over 200. After a scan confirmed that the baby's heart rate was beating at double the speed it should be I was told they were going to deliver by emergency cesarean.
When Freddie was born he was whisked out of the room by doctors. We were able to see him after the surgery and could see that his heart rate was between 210-220 most of the time. After a couple of hours on the ward a doctor came to see us and we could see in his face straight away that it was not good news. He explained that Freddie was very ill, his heart was beating very fast and an x ray of his lungs showed that they had not developed enough. He said that it was going to be very tough for them to make him better and that we had a very tough long journey ahead of us. Words can't really express what Jon and I were going through at that time.
On the 22nd August there was a glimmer of hope from the doctors who explained that they needed to give Freddie a treatment to correct the pace of his heart. This involved using a defibrillator to give his heart a small shock. This was a success and his heart began to beat at a normal pace.
There have been a number of other medical issues with Freddie involving his lungs, kidney's, liver, blood pressure and excess fluid to name but a few. Some of these were due to/made worse by him being premature some to his heart issues.
This is Freddie actually looking a bit better at a few days old.
After the doctors had sorted the pace of Freddie's heart they told us they still weren't convinced that there wasn't another problem. They were unable to feel the pulse in Freddie's legs and one doctor did suggest that one of the valves in Freddie's heart could be narrow. When a scan was performed by the specialist from Glenfield hospital it was thought that the pulse in his legs couldn't be felt because of all the fluid retention. It was thought that because his heart had been beating at double the pace his blood wasn't being pumped properly around his body and his heart needed time to recover.
Freddie came off his ventilator on the 28th August and from then on generally progressed quite rapidly.
This was the first time we saw Freddie's face properly. Special moment.
Up until the 9th September everything with Freddie seemed to be going in the right direction. I went with him to the QMC on the 9th for an ultrasound scan on his heart to see how it was recovering. It was during this scan that the specialist discovered that Freddie had a narrow aorta and would need surgery on his heart. The next few hours were chaos, we were at QMC waiting to see if Freddie could go straight to Glenfield in his ambulance. We had to go back to city because they didn't know if there was space at Glenfield. After not knowing what was happening for a couple of hours they got the OK from Glenfield and he was transported there with us not far behind. Its fair to say it was not a pleasant day.
It was explained to us that the reason his heart problem was not picked up originally was because of his size and also because the problem he had already had with the pace of his heart.
Freddie has congenital heart disease which is an abnormality of the heart that developed in the womb. The abnormality with Freddie's heart is called coarctation of the aorta. There is a narrowing in Freddie's aorta which prevents the blood from circulating normally in the lower half of his body. Freddie also has a small hole in his heart but apparently this is very common and does not need any treatment at the moment. His heart structure is also slightly different to a normal heart which the surgeon explained would not be a problem except that it might obstruct part of the surgery that needs to be performed. This should not be a problem though because there are two different types of methods of correcting the aorta and the surgeon is happy to perform either.
To not go into too much unnecessary detail the surgeon will cut out the narrowed part of the aorta and sew the ends back together.
We have been advised that most children with repaired coarctation of the aorta go on to lead normal, active lives. Freddie with have to have checks at a specialist heart centre for the rest of his life which on the scale of things is nothing if it means we get a happy healthy little boy.
Anyhoo, I'm off to get some sleep.
I just want to say how amazing all of the doctors, nurses and staff with the NHS have been at all of the hospitals Freddie has been at. The work these people do is absolutely amazing and they deserve so much more credit not to mention money for what they do. Not only did the doctors who we got to see regularly at the City hospital astound us with their ability but they always seemed so caring and passionate about Freddie and sensitive to our emotions.
xx
The decision to deliver Freddie was made by doctors at Nottingham City hospital when I went in because I had a small bleed. The bleed was considered normal because my twenty week scan had shown that my placenta was low lying. However when they started checking how the baby was, the monitor was showing a heart rate of well over 200. After a scan confirmed that the baby's heart rate was beating at double the speed it should be I was told they were going to deliver by emergency cesarean.
When Freddie was born he was whisked out of the room by doctors. We were able to see him after the surgery and could see that his heart rate was between 210-220 most of the time. After a couple of hours on the ward a doctor came to see us and we could see in his face straight away that it was not good news. He explained that Freddie was very ill, his heart was beating very fast and an x ray of his lungs showed that they had not developed enough. He said that it was going to be very tough for them to make him better and that we had a very tough long journey ahead of us. Words can't really express what Jon and I were going through at that time.
On the 22nd August there was a glimmer of hope from the doctors who explained that they needed to give Freddie a treatment to correct the pace of his heart. This involved using a defibrillator to give his heart a small shock. This was a success and his heart began to beat at a normal pace.
There have been a number of other medical issues with Freddie involving his lungs, kidney's, liver, blood pressure and excess fluid to name but a few. Some of these were due to/made worse by him being premature some to his heart issues.
After the doctors had sorted the pace of Freddie's heart they told us they still weren't convinced that there wasn't another problem. They were unable to feel the pulse in Freddie's legs and one doctor did suggest that one of the valves in Freddie's heart could be narrow. When a scan was performed by the specialist from Glenfield hospital it was thought that the pulse in his legs couldn't be felt because of all the fluid retention. It was thought that because his heart had been beating at double the pace his blood wasn't being pumped properly around his body and his heart needed time to recover.
Freddie came off his ventilator on the 28th August and from then on generally progressed quite rapidly.
This was the first time we saw Freddie's face properly. Special moment.
Up until the 9th September everything with Freddie seemed to be going in the right direction. I went with him to the QMC on the 9th for an ultrasound scan on his heart to see how it was recovering. It was during this scan that the specialist discovered that Freddie had a narrow aorta and would need surgery on his heart. The next few hours were chaos, we were at QMC waiting to see if Freddie could go straight to Glenfield in his ambulance. We had to go back to city because they didn't know if there was space at Glenfield. After not knowing what was happening for a couple of hours they got the OK from Glenfield and he was transported there with us not far behind. Its fair to say it was not a pleasant day.
It was explained to us that the reason his heart problem was not picked up originally was because of his size and also because the problem he had already had with the pace of his heart.
Freddie has congenital heart disease which is an abnormality of the heart that developed in the womb. The abnormality with Freddie's heart is called coarctation of the aorta. There is a narrowing in Freddie's aorta which prevents the blood from circulating normally in the lower half of his body. Freddie also has a small hole in his heart but apparently this is very common and does not need any treatment at the moment. His heart structure is also slightly different to a normal heart which the surgeon explained would not be a problem except that it might obstruct part of the surgery that needs to be performed. This should not be a problem though because there are two different types of methods of correcting the aorta and the surgeon is happy to perform either.
To not go into too much unnecessary detail the surgeon will cut out the narrowed part of the aorta and sew the ends back together.
We have been advised that most children with repaired coarctation of the aorta go on to lead normal, active lives. Freddie with have to have checks at a specialist heart centre for the rest of his life which on the scale of things is nothing if it means we get a happy healthy little boy.
Anyhoo, I'm off to get some sleep.
I just want to say how amazing all of the doctors, nurses and staff with the NHS have been at all of the hospitals Freddie has been at. The work these people do is absolutely amazing and they deserve so much more credit not to mention money for what they do. Not only did the doctors who we got to see regularly at the City hospital astound us with their ability but they always seemed so caring and passionate about Freddie and sensitive to our emotions.
xx
Thursday 22nd September 2011
Today we're thinking along the lines of 'no news is good news.' Medically there is not really anything different to report on Freddie today. The doctors are still happy with how he is doing and are still planning to start his feeds either at the weekend or on Monday. He has got a bit of fluid retention which has made his feet all puffy but he's had that before and it didn't last very long. It sounds like they are still trying to get him put on the children's ward at Glenfield hospital to wait for his surgery but I think there is a bit of an issue because they don't usually take babies that weigh less than 3kg for some reason. The nurses are always cooing over him so they seem happy to 'baby sit' him on the intensive care unit.
He's acting more and more like you would expect a baby to act. He is loving his dummy at the moment and gets quite annoyed when he realises its fallen out.
Jon got to have his first hold of him today which was lovely for them both.
Freddie was a very good boy for his Daddy.
Do not even consider taking this dummy out!!
Goodnight and lots of love to all from the Sawyer family four.
Samuel quote of the day:
On speaker phone in the car: "Nanan I've got something to say to you......kiss my artichoke!" Brilliant!
He's acting more and more like you would expect a baby to act. He is loving his dummy at the moment and gets quite annoyed when he realises its fallen out.
Jon got to have his first hold of him today which was lovely for them both.
Do not even consider taking this dummy out!!
Goodnight and lots of love to all from the Sawyer family four.
Samuel quote of the day:
On speaker phone in the car: "Nanan I've got something to say to you......kiss my artichoke!" Brilliant!
Wednesday 21 September 2011
Wednesday 21st August 2011
Happy one month birthday Freddie! 
Today I went to visit Freddie after dropping his big bro off at pre-school. I just missed out on his bath and change which was a shame but he's doing really well still. When I got there the nurse said they were going to start his feeds today which came as a bit of a shock and I started fretting because I hadn't taken any of my frozen expressed milk. However, when the doctors came to Freddie on their rounds the consultant said he wanted to wait a bit longer before giving him milk again. It was the surgeons who had come round first thing and said they were happy for him to start having feeds which is a good sign because it shows they must be really happy with how is stomach is recovering from the infection. The consultant said he wants Freddie to start on milk either at the weekend or on Monday.
I had a massive cuddle with him which was lovely. Whenever he started stirring a bit I just let him suck on his dummy or my little finger knuckle. He's so cute, just does a few sucks then falls asleep again.
Freddie's now moved into his own little room in the children's intensive care unit at the Royal. This makes it better for when we take Samuel with us to the hospital.
Very mixed emotions at the moment for us all. We're thrilled that Freddie is doing so well but it's very frustrating not having him home with us and even more so that he is in Leicester rather than Nottingham. It's very difficult to not feel guilty for not being with him all the time but it's physically and mentally exhausting! The nurses have always advised us to reserve our energy for when he is home! My ability to express for him seems to be coming to an end also which is a bit upsetting but at least he's had a good start with his feeds.
Counting down the days now before he is strong enough for his surgery. We want our little man healthy and home!
Get that camera out of my face Mummy!
I leave you with a windy smile:
Samuel quote of the day: "Kiss my potato!" (Apparently from Wallace and Gromit) Ha!
Tuesday 20 September 2011
Tuesday 20th September 2011. PM
Hi.
Just got back from a visit with Freddie. He got to see his mummy, daddy and big brother all together today. As soon as we got to the hospital the nurse went to fetch the consultant to speak to us so I think my persistent phone calls today paid off. The consultant explained to us that the doctors and surgeons want to let Freddie get back onto his feeds before the heart operation is carried out. The infection he has been recovering from at the Royal hospital was in his stomach (something called NEC) and until this time next week he needs to be nil by mouth in order for his stomach to recover. The doctors need to be happy that his stomach can handle feeds again before he has any surgery on his heart so that his recovery is not jeopardised. The consultant said we could be looking at 10 days before his operation. Freddie needs to be in Leicester because that is where the cardiac centre is and where the surgical team are. It's frustrating for us but he is where he needs to be to receive the best care so we are happy and it means he'll be bigger and stronger for his operation.
Anyway, onto the good stuff. He's looking fab!!! Check him out...
The doctors and nurses at The Royal are really happy with how he is doing. The nurses keep telling us how cute he is (as if we didn't know!) They gave us some pics that they took of him today with his eyes open and doing some 'wind smiles.'
Of course we had a cuddle:
Mummy does tend to hog Freddie a bit so poor daddy had to take the pictures! He had some nice kisses with his little man though. Samuel was a very good boy and even sang the Wallace & Gromit theme tune (his latest obsession) to Freddie. In fact we were all humming the wallace & gromit tune to Freddie at one point - I bet they think we're a bit mental...they'd be right! Ha.
Freddie is just about the same size as his favourite toy now, his glow worm given to him by his Mamma and Samuel...
He loves it and it soothes him when we put the music on.
Goodnight everyone, love from Freddie and Glow worm!
xx
Samuel quote of the day:
Mummy: "Why don't you want to go to pre school Samuel?"
Samuel: "Because I like you Mummy and I want to help you clean the oven!"
Hmmmm I wonder if he'll still be offering to help clean the oven when he's a teenager?
Just got back from a visit with Freddie. He got to see his mummy, daddy and big brother all together today. As soon as we got to the hospital the nurse went to fetch the consultant to speak to us so I think my persistent phone calls today paid off. The consultant explained to us that the doctors and surgeons want to let Freddie get back onto his feeds before the heart operation is carried out. The infection he has been recovering from at the Royal hospital was in his stomach (something called NEC) and until this time next week he needs to be nil by mouth in order for his stomach to recover. The doctors need to be happy that his stomach can handle feeds again before he has any surgery on his heart so that his recovery is not jeopardised. The consultant said we could be looking at 10 days before his operation. Freddie needs to be in Leicester because that is where the cardiac centre is and where the surgical team are. It's frustrating for us but he is where he needs to be to receive the best care so we are happy and it means he'll be bigger and stronger for his operation.
Anyway, onto the good stuff. He's looking fab!!! Check him out...
Of course we had a cuddle:
Mummy does tend to hog Freddie a bit so poor daddy had to take the pictures! He had some nice kisses with his little man though. Samuel was a very good boy and even sang the Wallace & Gromit theme tune (his latest obsession) to Freddie. In fact we were all humming the wallace & gromit tune to Freddie at one point - I bet they think we're a bit mental...they'd be right! Ha.
Freddie is just about the same size as his favourite toy now, his glow worm given to him by his Mamma and Samuel...He loves it and it soothes him when we put the music on.
Goodnight everyone, love from Freddie and Glow worm!
xx
Samuel quote of the day:
Mummy: "Why don't you want to go to pre school Samuel?"
Samuel: "Because I like you Mummy and I want to help you clean the oven!"
Hmmmm I wonder if he'll still be offering to help clean the oven when he's a teenager?
Tuesday 20th September 2011. AM
Freddie is currently at the Leicester Royal Infirmary hospital (will explain how/why he got there in future post). Me, Samuel and Freddie's Mamma visited him yesterday afternoon (his Daddy has had to go back to work) and it was lovely to see him off his ventilator for the first time in nearly a week. He looks really well, bigger and more awake than we have seen him for a while. His hair is so much lighter than it was when he was born and is really growing now.
Yesterday I was told over the phone that Freddie would be moving back to Glenfield hospital to wait on their children's ward until he has his heart surgery. However, during our visit yesterday it became apparent that there is some confusion over where Freddie is going and when his surgery is going to be. We have been under the impression that it would be at the end of this week all being well but the consultant I spoke to yesterday mentioned him being taken to a neonatal unit at either Leicester Royal or Leicester general till he is bigger and stronger for his operation. This was a bit like a slap in the face because the surgeon and other doctors we have spoken to have always given the impression that we don't need to wait a significant period of time before he can have his surgery. I hate the thought of him having to stay at Leicester for a long time before he can have his op because I don't get to see him very much.
Just waiting till the doctors have finished their rounds then I am going to ring and find out if they know what is happening.
Aimee
Yesterday I was told over the phone that Freddie would be moving back to Glenfield hospital to wait on their children's ward until he has his heart surgery. However, during our visit yesterday it became apparent that there is some confusion over where Freddie is going and when his surgery is going to be. We have been under the impression that it would be at the end of this week all being well but the consultant I spoke to yesterday mentioned him being taken to a neonatal unit at either Leicester Royal or Leicester general till he is bigger and stronger for his operation. This was a bit like a slap in the face because the surgeon and other doctors we have spoken to have always given the impression that we don't need to wait a significant period of time before he can have his surgery. I hate the thought of him having to stay at Leicester for a long time before he can have his op because I don't get to see him very much.
Just waiting till the doctors have finished their rounds then I am going to ring and find out if they know what is happening.
Aimee
Intro
Hello. This is Freddie Mark Sawyer. He was born at Nottingham City Hospital on 21st August, eight weeks and one day before he was due to be born. That was over four weeks ago but I haven't had the time/energy/frame of mind to start this blog until now. I am Freddie's mummy and also proud mummy to Freddie's older brother Samuel who is three. I am going to try and keep you updated with Freddie's progress day to day as well as what has happened so far. This photo of Freddie was actually taken over a week ago so I will put a more up to date one on soon.
This is the first time I have ever written a blog so apologies in advance for mistakes/amendments or random structure!
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