Thursday 27th October

Freddie now weighs six pounds! (2.72 kg)

Freddie's teddy bear impression in his new gorgeous snowsuit!

I had to take him to the doctors today because he isn't pooing very well bless him. A combination of the formula he has and the iron medicine he is taking isn't helping with that situation. He seems to become more uncomfortable at night which meant very little sleep for us last night! The doctor has prescribed some lactulose for him so hopefully that will start to work soon.
He is very lively and has a serious problem with being put down when he could be being cuddled!

It is starting to become difficult already to imagine that there was ever anything wrong with him!

Morning time with my boys, Samuel showing affection towards Freddie without having to take his eyes of his 'doggy game.'

For those of you in the East Midlands, next Monday on BBC 1 at 7:30pm there is a programme called Inside Out and it is about the congenital heart centre at Glenfield and the government proposal which could mean that children's heart surgery wont be carried out there any longer. http://www.bbc.co.uk/programmes/b017b4kx

The stress and anxiety a family goes through when their child needs heart surgery is indescribable but to add to that by making families have to travel hours and hours to the hospital would be further torture.

The government has set out four options for creating safe and sustainable children's congenital heart services in the UK. Out of the four options, Glenfield remaining a centre for children's heart surgery is only included in one, which is option A.
http://www.specialisedservices.nhs.uk/library/30/Safe_and_Sustainable___A_New_Vision_for_Childrens_Congenital_Heart_Services_in_England_Consultation_Document_1.pdf
Not light bedtime reading but very interesting stuff. It is unfortunate that it has taken Freddie's illness to make us aware of the situation at Glenfield and around the UK.

To finish today's post, a pic of Freddie looking fab!

xx

Monday 24th October 2011

Freddie had his first trip to the congenital heart centre outpatients unit at Glenfield.

We have had a busy day today. Freddie had his stitches removed from the wound where his chests drains were (didn't watch that happening!). The wound has healed nicely and he just has a few scabs that will drop off.
Then Freddie had an Echo scan on his heart.
I had to wait for quite a while for the doctor to speak to me which was quite nerve wracking but when he did he said that the scan was fine.
Freddie's heart is working well and the small narrowing that they are keeping a close eye on has opened a little at the moment so the blood is better. The doctor explained that as babies grow so does the heart and the arteries so often the narrowings sort themselves out.
The doctor said that we should be getting some follow up visits from the City hospital because Freddie was born so prematurely. Because everything has been focused on Freddie's heart issues we haven't had any discussions with doctors about what to expect development wise from a baby that was born prematurely.
I have spoken to the city hospital and these appointments are in the process of being made.

A very tiring day after not much sleep last night but we're thrilled that things are looking good with Freddie. His next appointment is mid November for another scan.

Samuel has been a really good boy during today's hospital visit, mostly due to the entertaining powers of Grandpops! Well done that man!

xxx

Saturday 22nd October 2011

Hi,

Freddie is really settling in at home now. In the last 24 hours his wind/griping seem to have settled down a lot and he is taking more milk than he was a couple of days ago. He hasn't been sick at all last night or today and has looked really comfortable all day. 

I was starting to get a bit worried about him this morning because he seemed a bit lethargic but typically as soon as I started thinking this he woke up and was awake for a good few hours. 

Freddie has enjoyed meeting a few new people this week and looks forward to meeting more of his friends to be! 

He had a lovely visit from his Nanan and Grandad and Auntie Michelle and Uncle Steven today. He missed out on the pizza unfortunately but I'm sure he'll make up for that when he is older!

I'm sure I got a little smile from him yesterday (which wasn't wind related) and am looking forward to seeing more smiles hopefully very soon. 

Freddie's check up at Glenfield is on Monday at which they will carry out an Echo scan on his heart and take his stitches out as well as weighing him. 

Freddie is nine weeks old tomorrow!

xxx

Thursday 20th October 2011

It is so lovely to be dealing with normal baby issues rather than medical and hospital issues all of the time!

Freddie is already showing signs that he would much rather be having a cuddle than in his pram or basket. He is still a little 'grunter' with his wind but it doesn't seem to be bothering him too much at the moment. He was actually more awake during the day yesterday than he was overnight - Whoo!

We're seeing some friends today which is lovely because I have waited a long time to show this little man off in person!

All the boys together at last! In age order... Samuel, Freddie and Zachary! What fun these boys are going to have and what trouble they will cause us!

Just chilling.

Little Freddie's cheeks are getting a bit chubbier every day!

First trip to Morrisons (of thousands no doubt) with Mummy, Mamma and Samuel)


xxx

Wednesday 19th October

Hello.

Freddie now weighs in at five pounds, six ounces.  He has put on an ounce a day since he has been home which the health visitor said is fantastic. He's causing a little bit of bother with his feeds. He has been grunting and writhing around quite a lot when he seems to get too much air on his bottle (which sometimes then results in pukesville!) he also seems to be quite uncomfortable lying flat on his back and although doesn't cry much with it he makes some rather uncomfortable noises. We have had some advice from the health visitor and are just keeping a close eye on him because he is on iron which could make him constipated! Poor little thing.

I think it will take time to really settle into a proper family routine again (although anyone with a new born baby at home knows routine is out of the window!) but we are loving having both our boys at home!

Will post some more pics soon!

xxx

Tuesday 18th October 2011

Freddie has had his first trip onto the Avenue in West Bridgford. Shopping with Mummy, Mamma and Auntie Lisa. It was rather windy so he was all wrapped up bless him. We had a walk to the park and his big brother had a play then the boys were subjected to a bit of M&S shopping! Poor things.

He continues to be quite sleepy during the day and much more active at night!
I have got him booked in at the doctors for his first vaccinations on the 31st October and will feel a bit more relaxed about visitors and taking him places once he has had these.
The health visitor is coming today so we're hoping Freddie will have put some weight on. He looks like he has to us but it is difficult to tell when you see him all the time.

More blogging once I find some time!!
xx

Sunday 16th October 2011

It feels strange to admit it but already the thought of intensive care units, surgery and ventilator tubes and wires seems like a bad dream, like it must of happened to someone else.
Don't get me wrong, tomorrow I will be ringing the hospital booking Freddie in for his week one check at the heart centre and no doubt having the health visitor round to discuss things, so the medical issues are always going to be in our minds but this weekend has been the family time away from the suffocating environment of the hospitals that we have so craved over the past eight weeks.

Freddie has been a star. He has ate, slept, filled his nappy and cried - exactly the things a baby should do! He is much more lively at night and spends most of the day at the moment sleeping, waking for his feed, having a bit of wind, having his nappy changed and then sleeping again. At three am today he was wide eyed and calm, taking in his new surroundings.

He is still a pale fragile looking little man but hopefully the way he attacks his bottle when it is milk time should remedy that soon. I can honestly say that we haven't yet had a panic over anything health related yet. The only worry I have had is how 'windy' he looks after some of his feeds. He grunts and goes red and pulls his legs up but I know this is common with many babies. He is much better when he has a feed of normal cow and gate formula instead of the high energy formula so we are mixing and matching which is what the dietitian originally recommended anyway but the consultant overruled it because he wants to see Freddie 'fatten up'.

Freddie's first trip in his pram!













First proper bath! He's not impressed!

Where have all the noisey beeping machines gone Daddy?

His favourite position, soaking up the sun in his pram in the conservatory!

One trip to mothercare later... a bag full bigger than Freddie in his car seat!

xxx

Saturday 15th October 2011

FREDDIE MARK SAWYER IS HOME!!!!!!

Not much time to give you all the detail given that we have a tiny man in the house to look after (whoo!) Basically, on Thursday we were told that Freddie's blood tests had shown a risen infection level so they needed keep a close eye on him. We were gutted as last time that happened he ended up at the Royal hospital on a ventilator! However, yesterday the doctors told us that the infection he had was small and was from the central line that used to be in his groin. They said they were happy that Freddie was looking well and feeding well so were just going to do another blood test. The results from that test showed that the infection had gone and Freddie was fine. 

We were told that all being well and as long as Freddie put a bit of weight on we would be able to either be discharged on Monday and just take Freddie for an appointment at QMC for administration purposes or if the doctors wanted him monitored some more he would be transferred to a bed an the neonatal ward at QMC. 

We were quite happy with this give the day before we were thinking the worse and expecting to be told Freddie would have to stay in for much longer. 

A couple of hours after getting home from the hospital yesterday I got a phone call to say that we could go and pick him up! Fair to say we were in a bit of shock! Apparently the consultants had decided that he was well enough to go home and fatten up their!

So here we are, we have to give him a couple of medicines and he is on a high energy formula but other than that he is acting like any normal tiny baby! 

It hasn't really sunk in yet and to be honest we haven't really had time to get all emotional but I'm sure that will come! 

I'm going to keep blogging with Freddie's progress whenever I get the chance. 

Thanks again to everyone for their continued support, we'll never forget how wonderful people have been. 

Goodbye children's ward!!

A very excited Mummy and Samuel

A tiny sleeping Freddie back where he should be!!!

Happiness at last!

xxx

12th October 2011

Very fed up of hospitals now! The closer we seem to get to bringing Freddie home the more impatient I become!

He's had a good day, just doing usual baby stuff - lots of feeds, lots of cuddles and lots of dirty nappies for Mummy! He has had a blood test today, the doctor thought he was looking a little paler than yesterday so they want to check his blood count. But they did say it was also for a check before he is discharged which is always good to hear. I don't think he has looked pale today, he's looked nice and rosey this afternoon! Freddie has also had a chest x-ray today to check that the air hasn't accumulated again and the doctors are happy that it hasn't. His leg has gone back to something like normal size now so it seems to be fine.

The doctors want to see Freddie put some weight on before they discharge him but have said if all is well it should be the weekend.

Jon brought Samuel to see Freddie tonight. He was very sweet, he held Freddie's bottle with me and helped me change his nappy. We were able to take Freddie into the playroom with Samuel and his Daddy got to have a nice cuddle.

Hoping he's put some weight on when they weigh him in the morning.

xxx

Tuesday 11th October 2011

Freddie is now officially line free! He has no more nasty things sticking in him and isn't hooked up to any machines permanently so I have been able to walk around with him in my arms for the first time today.

He has had his chest drain taken out and his central line. The leg into which the central line goes has been very swollen today which I wasn't very happy about because the doctors should have taken it out yesterday but it is looking better now they have removed the line. He had his nasal canula taken off because he doesn't need to be on any oxygen and his stomach tube taken out his nose because he is taking his bottle feeds really well.

What progress!
We are still on track for bringing him home soon

First time I have seen his face without any horrible tubes. What a gorgeous boy if I do say so myself!

xxx

Monday 10th October 2011

Today if there could have been a way to shut off the unpleasant noises and stresses of the children's ward I could have just about imagined having Freddie at home with us. He is acting so much more like you would expect a 'normal' new born baby to act.
He is taking his feeds brilliantly in his bottle and being nice and settled in between meal times.

The doctors were supposed to be taking Freddie's chest drain and central line out today but there was a breakdown in communication due to a very hectic day in the children's ward and it has not been done. The doctor has apologised and said that it should be clamped first thing in the morning and then x ray'd with a view to removing it early afternoon. This would also mean that he can have his nasal canula removed and the annoying sticky plasters covering half of his face!
It can be very frustrating on the ward, especially on busy days. The staff there are very good and very friendly but today they were a bit low on numbers and it was very busy with new children coming onto the ward. Just before I left the hospital tonight I noticed Freddie's right leg was a bit swollen and when I looked at his foot I could see that the oxygen probe they had put on was wrapped around his little foot ridiculously tight. They are meant to swap the position its in regularly but it obviously had been overlooked and his poor little foot was bright red and swollen. I swapped it over and voiced my annoyance!

In typical baby fashion Freddie has been nice and settled today except for just when I was about to leave him! He decided to wake up and very quickly become angry that he wasn't being fed (only an hour and a half after his last feed). So I gave him a bottle, during which he decided to do the biggest, smelliest poo he's done in his life so far. So I changed his nappy (in his incubator which is an art in itself) and he decided to wee whilst his nappy was off all over his sheets and his baby gro. AGGGGHHH! Change of nappy, clothes, sheets later and after a bit more milk he was still wide awake but much happier!

Peekaboo everyone!

Milky drunk! That's a newborn size bib he's got on, its just about the size of him!

This is definitely one for his 18th birthday! Judge Freddie!

xxx

Sunday 9th October 2011

Hello.

Today Jon and I have got to spend quite a lot of time with Freddie on the children's ward. When we arrived the nurse (a lady with a Russian ish accent called Syka!) told us that Freddie could now have as much milk as he wants! Hurrah! She had already given him a bottle before we arrived so we waited a couple of hours and had a nice cuddle with him during which he was quite awake. When he started to act hungry we gave him his bottle and he had 50ml which is massive for Freddie! 

He seemed to settle so much better today than yesterday because he had a full tummy. They should be taking him off his TPN (his IV nutrition) tonight which also means he should hopefully be able to have his last remaining central line taken out! 

We had a few nervous hours this morning. When the doctors were doing their usual rounds they said he was doing fine but that they needed to do an ECHO (heart scan) on Freddie because of the small narrowing that was still present in his heart!! What....this was the first we had heard of this! As you can imagine we weren't very happy at the prospect of him needing further surgery and were also feeling rather confused. We also heard mention of the blood pressure in his arms being higher than what it is in his legs so we started thinking the worst! 

Anyway, a couple of miserable hours later the doctor came over with the scanning machine and scanned Freddie's heart. We sat there looking at the images of our little baby boy's heart and blood flow as if we had a clue what we were looking for! After the scan the doctor explained that Freddie did have a very small narrowing in another part of his heart but that it was not affecting his heart function and that it would just be monitored when we bring him back to the heart centre clinics. He said that we were still set to be taking him home once he has established feeding! 

We remember the surgeon mentioning that sometimes when significant coarctations like the one Freddie had are corrected the surgery can cause more minor narrowings in other positions. It appears like this is a common occurrence as a family we met who's little boy had the same heart surgery a couple of days before Freddie were told the same thing. 

It sounds like we will be bringing Freddie in to the heart clinic to be checked after the first week of being home and then after the first month and I'm sure regular checks will continue from there. 

If this smaller narrowing does become worse it can be corrected with a much less evasive procedure when Freddie is bigger but hopefully it will not come to that. 

So after a rather stressful morning it still looks like Freddie may be allowed home in a week or so which is fantastic! 

Freddie enjoying a drink with his Dad!!

We better start trying to remember how to fit the baby car seat!! Whoo. 

Samuel quote of yesterday:

In the car on the way back from Matlock: " Mummy, I don't want to leave Matalan!" Classic, not many children have ever said that they didn't want to leave Matalan! 

saturday 8th october 2011

Just a quick post via jon's phone tonight as we have treated samuel to a trip to matlock tonight to see the lights and the boats- we've had lots of fun.

Freddie is doing brilliantly.I had a nice day with him. he is getting very hungry in between his feeds and has been exercising his lungs a lot!
The doctors have said that at the moment the only things we are waiting for before we can go home are getting him on full feeds and  getting his chest drain out. there has been suggestion that he might be discharged from hospital at the end of next week all being well! how exciting!
He had lots of cuddles today including his first mamma cuddle!
Xxx

Friday 7th October 2011

A typical Freddie moment of today...

Ahh, nice and sleepy and having a cuddle with Mummy

Wait a minute, I feel like something is missing, whats going on..

There is definitely something missing, do something about it Mummy!

Ah, that's better! 

Freddie is back on the children's ward at Glenfield and is doing well. He is having his teaspoon of milk via bottle every hour! He's gets very frustrated at the small amounts and keeps sucking angrily on his dummy! He is still on his tpn so is getting all the nutrition he needs and the doctors will keep increasing the amount of milk he can have and decreasing the amount of tpn he gets. 

He still has his chest drain in and a central line going into his groin. Hopefully these wont have to be in for much longer so we can get to him for cuddles more easily!

Thanks again to everyone for their continued support, love, caring and friendship during these tough times. I used to be worried about saying anything too positive in case I jinxed his progress but that hasn't worked too well for us in the past so here goes... he's an absolute star and is doing all the things you would expect a baby to do. Hopefully we're on the home stretch now!

xxx

Thursday 6th October 2011

Freddie continues to do really well. He is breathing nicely without his ventilator and last night they switched off the oxygen in his nasal canula as he was doing so well.
This morning the doctors removed his chest drains and his arterial line. When they carried out an x-ray on Freddie they saw that some air had escaped from his lung into his chest again which unfortunately has meant that they have had to put a new chest drain in.
This is not nice for Freddie, they could give him pain relief but couldn't sedate him completely because they didn't want to compromise his breathing. It has been done now though and wont be taken out until they are happy that his lung is completely repaired.
Freddie is still heading for the children's ward all being well. He would have been going today if it weren't for him needing this procedure. They will keep him on intensive care overnight and if he continues to do well he can go to the ward with his chest drain in tomorrow.

Freddie is much more awake and alert these days. Here he is having a good look at his Mummy and his Grandpops!






xxx

Wednesday 5th October 2011

Freddie is off his ventilator!


Hello,
Freddie has made great progress today. Mum and I went to visit him this morning and he was still on his ventilator but the nurse told us the doctors had agreed they could try taking his tube out this afternoon.

Freddie this morning still with his ventilation tube in. He's hoping to start a new fashion trend with his patchy hair do!










The doctors seem to have balanced Freddie's blood pressure medicine better and his levels are much more stable now. The surgeon advised us that he would probably need to be on medicine to lower his blood pressure after his surgery because his brain may not register that the narrowing in his heart has been repaired and still send messages increasing the blood pressure when it is not necessary.



Freddie has been very awake and lively today. They stopped his morphine this morning in preparation for taking his tube out.

Freddie tonight, wide awake and loving his dummy!

We have been told that if Freddie has a good night the doctors will probably be able to take out his chest drains and his arterial line tomorrow which wont be particularly pleasant for him while they are doing it but will make him much more comfortable and make it much easier to have cuddles!

xxx

Tuesday 4th October 2011

Freddie is still on his ventilator but is having a much better day today then yesterday. The doctors probably wont take his tube out until his lungs are clear but the fluid the physio has suctioned out of his tube today has been clearer than yesterday so that is a good sign.
He is having a tiny amount of milk every hour - gone up to 2ml today!
He was quite lively when we saw him which is good for his recovery but quite difficult to see as the tube is quite obviously causing him discomfort.
His blood gas test results have been good all day today so things are looking up.

xxx

Monday 3rd October 2011

A very emotional day today.
To start I will let you know that Freddie is fine and when Jon left him this evening he was doing very well and the nurses were pleased with him.
I had a day with Samuel today and Jon and I were planning on visiting Freddie together this evening. I took Samuel over to see his cousin Zachary and we had a lovely time. I rang the hospital at about midday and everything was fine but when I rang at about two things had gone downhill quite rapidly.
The problems Freddie has had today have been related to suspected damage to his lungs during surgery. It is thought that one of his lungs may have been caught during his operation which is something that is quite common by the sounds of it. This has caused air to leak from his lungs into his chest cavity which has put pressure and one of his lungs and caused part of it to collapse.
When I rang the hospital they were in the middle of inserting another chest drain and the nurse said that Freddie was "stable now". This was very frightening and overwhelming as I didn't know what was going on. The thought of him having to have yet another chest drain inserted into his little body was very distressing.

After a major wobble, followed by a decision that I was not feeling at all up to going to the hospital and an order from my mum to have a lie down before I fell down, things have now calmed down a bit!

It is unbelievable how quickly things can change and Jon has come back from the hospital with the news that Freddie's blood gas results are now very good and that the doctors and nurses are happy with how he is doing! What a relief. The air in his chest has been released through the new chest drain that has been inserted and the damage to one of his lungs should heal itself in a short space of time with a little help from physio.





Freddie having a peak at his Daddy.

Can't wait till the day when Freddie can be with his fab big bro and his gorgeous cousin. All the boys together will be a happy day!

xxx

Sunday 2nd October 2011

Not a lot of new info to post today. Jon and I have been to see Freddie this morning. He is still on his ventilator because he still has a lot of fluid/mucus on his chest.
He has been a lot more awake, we got to see him with his eyes open today which was lovely.
They have had to mess with him quite a bit this morning because one of his chest drain lines fell out so they had to put another one in.
It sounds like the doctors are quite happy with how he is doing and that he continues to move in the right direction but in his own time!
He was looking very swollen yesterday but he is back on his water medicines which should help with that and with the fluid on his chest. The nurse said they are hoping to wean him more off his ventilator this afternoon and maybe he can come off it tomorrow! We'll see!
It's all about having patience!! Easier said than done though!!

xxx

Saturday 1st October 2011

Freddie had a visit from his Mummy and Mamma today.
Unfortunately Freddie didn't cope very well on the cpap last night and had to be put back on full ventilation. He was having to work hard to breathe and his blood pressure was high so the doctors decided it was better to help him out with the ventilator.
The nurse told us today that Freddie has got a 'wet chest' which is common after surgery. It means the physio's have to keep using tubes to suck the mucus and fluid from his chest. Freddie's x-ray also showed that he had air trapped in his chest and the doctors had to put in another chest drain line today.
We had a bit of scare when his oxygen levels and heart rate dropped dramatically whilst we were sitting with him. The doctors came over and we had to move away which was very frightening but the nurse quickly came over to tell us that he was OK and sometimes poorly babies just don't like being messed with!
His blood pressure has been quite high today so they have put him on some medicine for that and it was already coming down nicely before Mum and I left the hospital.

The word 'normal' was used by the nurse quite frequently today with regards to the issues Freddie has at the moment. It appears that generally most of these things are to be expected after a baby has undergone heart surgery. We also have to remember that Freddie had two trips to theatre in two consecutive days and that technically Freddie still shouldn't have even been born yet!

It seems like Freddie is doing all the right things to recover, just small baby steps every day.

Freddie looking nice and snug in his bed . He's got his hand on his ventilator tube just to keep the nurses on their toes.... "you better keep your eyes on me nurse, I could pull this thing out anytime when I wake up!"







Freddie's got lots to look forward to when he's better........

such as stick fighting with his big brother! Ha.

This big lad is helping us retain our sanity whilst we're going through this, what a star!








Goodnight all xx