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!
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