Another Day, Another Move

Yesterday (Monday) Toby was moved back to St Mary's because he was a bit unwell due to another infection however, he seems to be doing alright now. It does mean that his scan that he was due to have today at Pendlebury will now be done at St Mary's later in the week as they don't want to keep moving him as yesterdays move was trip number seven. It also seems likely that he will now stay at St Mary's until he is off all his medication which as mentioned before could be a number of weeks.

Recovering

Toby's surgery to put in his central line went well. A central line is similar to a long line but goes into a vein in his neck rather than a vein in his leg or arm. It will mean that he can have less toxic anti fungal drugs to minimise the damage to his liver. He went to St Mary's overnight and is now back in North Manchester and recovering well. He seems quite happy in himself and is as hungry as ever!

On Tuesday Toby will have a special scan to check the problems with his liver. We are hoping that the problem has been caused by his antifungal treatment and the TPN he had when he wasn't allowed to eat. If it is this then the doctors will just have to monitor his liver as they give the treatment for the fungus as it will cause further damage. The liver can regenerate so they will try to ensure that it can do this. Obviously if it gets so damaged it stops working then it gets alot more serious. If the scan reveals it is a blockage which is causing problems with his liver then he will need surgery. The vitamins and medicines the doctors have given Toby to help his liver do seem to be helping a little so we are hoping it can perhaps prevent some damage.

Toby's antifungal treatment will take up to 6 weeks so even if his liver is ok in the long run it is still going to be a long time until he is home.

Thank you to everyone who is praying for us and leaving us messages. It means alot to know you are thinking of us and that Toby is such a prayed for baby.

Another One Of Those Days

Today has been another one of those days that we hoped were behind us. In himself Toby looks fine but he does have two problems at the moment. The first is his fungal infection that has still not cleared up after two weeks. The doctors want to put another line into him to give him some more drugs for a further two weeks however this can't be done at north manchester so he will need to go back to St Marys or Pendlebury. The plan to bring him home in a few weeks won't happen now and there is also issues regarding when he is to be moved because of the bank holiday weekend.

The second thing is that Toby has a problem with his Liver which has resulted in him having jaundice. However is seems to be more serious than the one that many babies get. They are going to do a scan at Pendlebury next Tuesday to see what is going on. Worst case is that he might need surgery or a liver transplant but we are not at that stage yet and it might just be related to the infection.

We are doing alright but as you can imagine we are quite upset as he seemed to be on the mend and we were hoping to have him home soon which won't happen now.

In A Cot

Toby has been moved into a Cot for the first time today and he seems to be enjoying it as he slept most of the day. He did wake up for a bit and Grandma Edwards also got her first cuddles. We will take some more photos of that tomorrow when we are back in the hospital.

One Step Closer To Home

After nearly four very difficult weeks at St Mary's Toby has finally been moved back to North Manchester today. He is just finishing off his antibiotics which will be over tomorrow and then it is just a case of waiting for him to be full fed with breast feeding and then we should be able to take him home in around 2 or 3 weeks. It is such a relief for us to be much closer to him and be at a quieter hospital where everyone knows us and him. Here is the latest picture of Toby which was taken earlier on today.

Cardigan

Here is a picture of Toby that was taken last night when we had him out for cuddles. He is wearing a cardigan that was made by his Grandma, he looked really good in it.

Snuggles

Things have been better today with Toby. We have spent the afternoon with him and had loads of cuddles. He is still keeping down his feeds and he is on a lot of antibiotics for his infection. Here are some great photos of Toby looking really cute.

Each Day As It Comes

Unfortunately is seems that Toby has another infection which means he is back on antibiotics and his planned trip back to the hospital in North Manchester has been postponed for another few days. They are doing various test on him as well but some of them can not be done until next week. As you can imagine we are both quite upset at this most resent setback, however Toby does seem well in himself. His is now just over 4lb and is being fed 14ml an hour. We have also put him back in some clothes which he was not allowed to wear when he was having the problems with is tummy. We are trying to tack each day as it comes, however that is much easier said than done.

Sleeping

Toby is doing much better now and is almost back up to full feeds. He has also put a lot of weight on in the last few weeks, he is now around 3lb 14oz. As you can see in the latest photo he is sleeping loads.

Back on Milk

Toby has started to be fed with milk again and he seems to be tolerating it which is good news. He is now on 2ml an hour up from 1ml an hour yesterday. We also had my mum and dad up this weekend and they got the first cuddles with Toby which I know they really enjoyed.

The Latest

After a horrendous few days we seem to have made a breakthrough today. This afternoon Toby has a contrast study which means they put some dye into him to look at this bowls and there does not seem at this point to be anything wrong with his intestine. As they did the test some poo did come out which looks like it might have been the cause of the blockage. The current plan is that they will start to try and feed him again tomorrow so please pray that everything is now fixed and he can have milk again.

Thanks for all your comments

Toby has done better today and is now off the ventilator and on CPAP which just helps him a bit with his breathing. They think the infection has been caused by the long-line that was put into his arm which they have used to feed him over the last 10 days. They are going to remove it tonight and test the end of it for an infection. They then hope to be able to do some more tests on his tummy and maybe even feed him again if all that is clear, however that is all a few days off yet and he stills needs to recover from the infection which has caused him to get a bit puffy in the face particularly around his eyes. Thanks again for all your comments they are very much appreciated particularly all those at Sunbury Methodist Church who seem to be posting almost every day! Keep them coming I am sure Toby will enjoy reading them one day as much as we have.