week 14

05/09/2009

This week Toby has spent some time on and off his CPAP, he is doing really well. But has some reflux that I have noticed. I have been trying to tell the doctors and nurses about it as I can hear him gurgling and I think that he could do more without his CPAP but as he keeps having braddys, (I think from his reflux) they are not listening to me and they think that he just needs more time on CPAP to rest his lungs. He has had another blood transfusion as his HB was low again, and he hasn’t been able to pick it back up himself. Mummy was getting quite frustrated with the doctors and the nurses who all have different ways of caring for Toby but never seem to listen to or help mummy out so mummy has decided to go back home to Somerset for a break next week.

Week 13

26/08/2009

Toby has gone up to 20mls of mummy’s milk every 2 hours today and he is tolerating this well still. He has also graduated from CPAP to high flow oxygen/Air. Which is mixed the same as CPAP and is humidified but does not create the pressure in the lungs. He is on a flow of 4, but had 4 hours off on low flow at 0.15lpm, and did really well. He also had his first real bath in the morning, and really enjoyed it. He has had a few more breastfeeds and is really getting the hang of it. In the evening 7pm, he had some more time off on low flow and was still doing well when mummy went home to bed.

              

27/08/2009

Toby continued off his CPAP throughout the day today, he is growing so strong, but by 6pm he had to go back onto the high flow as he was tiring a bit. But well done Toby 23 hours breathing on your own. The doctors said once he does that for a week or 2 and remains stable we can go home. So mummy is hoping that will be really soon. His feeds went to 3 hourly today, and the doctors decided to add more calories to his milk too, it is weigh night tonight so it will be interesting to see how he goes. Later in the evening Toby went back on to the CPAP, as he needed more of a rest. Hopefully he will go again after a good rest.

29/08/2009

Larissa and Aimee and Daddy got to give Toby a bath today and then they each got a big cuddle. Anthony will get his tomorrow. Toby loved his bubble bath and in the evening he had a little breast feed. 9 hours off CPAP today. Well done Toby

30/08/2009

Toby got to have another big bath today and the whole family got to help. Toby loves his baths so much and we all had some nice cuddles after. Anthony got to bond a bit with his little brother, and Anthony enjoyed singing him some nursery rhymes, although Toby does not like Pink lyrics as he got upset when Anthony started to sing “so what”!

Week 12

13/08/2009

Today Toby had his first attempt at breastfeeding and he had some really good sucks.

16/8/2009

Toby has had a relatively stable week, he has slowly gained weight and is now 1310g he is having 9.5mls of mummy’s milk and he had his first real bath today in a basin of water inside his little humidi crib. Initially he was unsure but really enjoyed floating in the water once he was use to it. He has been having some short periods off CPAP and is really going well, and his nurses have told mummy and daddy that he is not swinging so much with his oxygen saturations. Mummy and Daddy were really impressed tonight with the way Toby handled his bath and his cuddles. He has started wearing clothes and enjoys being wrapped up when he is sleeping. He has some short periods where he is really awake and playful. And he is now learning the difference between day and night as they nurses are not covering his cot during the day. Hopefully to help him sleep better when he comes home.

18/08/2009
he is now 1310g and looking very chubby for his little size. He had his first bath on sunday, there are some pics of that, and his weigh after the bath,
he is now having 9.5 mls of milk and they have just started fortifying it again, to help him to gain more weight. he has had a few breastfeeds and is doing really well with it
 he has had 2 x 1hour sessions off his CPAP today and is coping wonderfully with that too. he really is making progress, but sadly we still dont know whne we will be able to come home as he has to be off CPAP for a little while first. and we are not sure when that is going to happen. but hopefully wont be long. 

20/08/2009

Toby had a good day today, he had an hour and a half off his CPAP in the morning and he also had a good attempt at a breastfeed. Then he had another hour and a half in the evening, he was a little quiet in the evening but he had a really nice long cuddle with mummy. 

21/08/2009

Having a bit of a flat day today Toby was not moving around much, he had a 20min cuddle in the morning off his CPAP but then he got really tired, so he was put back on and back to bed.  The doctors did a blood test and his hemoglobin was at 76 so they decided to give him another blood transfusion of 26mls. Hopefully this will help him to pick up. Toby had a very restful day after that, as we was happy to let him recover throughout the day. 

22/08/2009

After his blood Transfusion, Toby is very pink today. He is not swinging anywhere near as much with his oxygen saturations and he has had an hour and a half off his CPAP in the morning. In the afternoon we decided to see if it made a difference to give him some oxygen via some small nasal prongs when he is off his CPAP. Toby went even better and the whole hour and a half he did not drop his oxygen saturations. So tomorrow we will try for a bit longer and hopefully he goes ok. His nurse, Jodi thinks that he is ready for bolus feeds as he seems to be always trying to suck on his hands or his dummy, we will ask the doctors tomorrow.

23/08/2009

Toby is now having bolus feeds of milk, at 9mls every hour and tomorrow this will go to 18mls every 2 hours if he tolerates it ok. He had an excellent morning, going a whole 4 hours off his CPAP with his little oxygen prongs in his nose. He is also going to get a chance to go off again in the evening, and have another breastfeed with mummy. He is doing so well his daddy was so proud of him as he left to go back to work today.

Week 10

4/08/2009

1120g today and he has been put down to a CPAP of 5, he may get to have some time off CPAP tomorrow. Both mummy and daddy got to have a big cuddle today. Still no blood transfusion though and his Hb is very low. He had his first eye test today and it was good!

5/08/2009

Today Toby is doing really well. He had 40 minutes off his CPAP with some oxygen wafting over his nose. Mummy had a cuddle while he was off his CPAP and mummy and daddy think that if he was in his cot he may have lasted a bit longer as he doesn’t like being moved to much and he kept looking for milk, and sliding down, so mummy had to hoist him up a bit a few times and he didn’t like it, his Hb is now 78 and he is looking very tired. He had his 2 month immunizations today!

6/08/2009

Toby had a blood transfusion today, his Hb got down to 73 and he was dropping his oxygen saturations very low and had the odd apnoea. His doctor come to see him and decided initially not to do the transfusion as they thought that he was poorly from his immunizations, but Toby had different Ideas, and as soon as his doctors said no he had a BIG episode where he dropped his sats and his heart rate and so the doctors changed their minds. His CPAP was put up to 7 and He got a new IDN and 20mls of blood in the afternoon and had a blood gas taken and a blood culture just in case. The gas showed his Hb to be 66, after his blood he was doing well in the afternoon.

7/08/2009

Toby had a bit of a rough night with a few big episodes of braddicardia and apnoea again he was started on antibiotics just in case as his blood infection markers were raised. When the doctors started their rounds this morning, Toby though he needed attention and had another episode. The doctors came to witness and help and his feeds were stopped and a IV infusion was started. He is still on his antibiotics. He had to have another IV inserted as when mummy and daddy come in the afternoon they noticed his IV had tissued. During his 1500 cares, Toby had about half an hour off his CPAP unofficially, to give his head a rest form the cap, and mummy gave him a beautiful head massage. Toby liked it and remained off his CPAP! He is doing better in the evening with a CPAP of 7 and in air. He was also put back onto 3mls an hour of milk, and seemed to be tolerating this well.

Week 9

29/07/2009

1111g today, Yay Toby is really getting bigger now, he had his first real little cry this morning, and it was so cute. he is looking a little pale though as he may need a blood transfusion sometime over the next few days. Toby’s nurse this evening was sick with a head cold when she came in, and mummy was not very happy! We didn’t get to have cuddles today either as mummy didn’t want to risk his nurse getting him out and possibly infecting him with her cold. Poor mummy is really hanging out for a cuddle its been a few days now. 

30/07/2009

Mummy brought a little T-shirt for Toby today, I’ll give it a wash and he should be able to wear it tomorrow as it was a special premmie size. I also brought a nursery rhyme book to read to him and in the evening mummy and Toby got to have a very nice long cuddle and a read of the book. Toby fell asleep and was very contented.

31/07/2009

1210g, today, keep it up Toby and we will be home in no time!  Toby had a wash this morning and got to put on his first little T-Shirt. He looks very cute! He is still on his CPAP of 6 and still has a low hemoglobin but the doctors don’t want to give him a blood transfusion yet as they want to wait to encourage him to make his own. He is looking pale and tired but he is still hanging in there, proving them wrong all the way.

2/08/2009

1039g today, Toby is doing well, Larissa and Anthony went home today and Aimee stayed as she was a bit upset about being away from mummy so long. Toby is still on a CPAP of 6 and he is on minimal oxygen.

Week 8

24/07/2009

940g today, not sure if this is an accurate weight as he doesn’t look like he has lost weight, instead it looks like he has gained weight.  The doctors came by and were first not going to try him off the ventilator, but after watching him for a little while they decided to give him a trial. He was very agitated this morning and they would have had to re-tape his breathing tube if they were not going to take it out. Little Toby soon told the doctors what he wanted and this afternoon he will get a chance to prove himself on CPAP again as long as his blood gas is good. In the evening, Toby come off the ventilator and he is really doing well on his CPAP.

                  

26/07/2009

Toby is 1034g today and he is starting to look bigger. He is still on his CPAP and is doing well. His oxygen fluctuates between air and 30% mummy went home today for the first time in 8 weeks. Mummy and daddy really enjoyed a big long cuddle with Toby before we left for a few days.

28/07/2009

Mum came back today after a bit of a relaxing few days catching up with Toby’s brother and sisters, and mummy’s friends.  Toby has got lots of presents awaiting him at home. I was nice to have a break from the hospital but mummy did really miss Toby and was very disappointed when I was unable to have a cuddle as he had been swinging a bit with his oxygen needs. Toby did get another bed bath from mummy and he really enjoyed that, and he was also visited by nan Newman, as she come to stay for a few days.

Week 7

17/07/2009

1060g today and the nurses got a chocolate cake for Toby as this is a running tradition. He is still on the diuretics to help reduce his fluid, his feeds have also gone up to 6.5mls of mummy’s milk and his ventilator settings have gone down to 40bpm. He is coping with this well. Daddy and Aimee, Anthony and Larissa come down to see him today and were really happy with how Toby has grown.

18/07/2009

Today Toby is going along well. There are not many changes with his care as the doctors are happy with how he is going. But mummy did get a very long cuddle late in the evening, both mummy and Toby really enjoyed this.

19/07/2009

Toby had a new IV line put in this afternoon as his other one tissued; it was put into his left arm. His ventilator settings are at 35 and he is doing a really good job of breathing up over it at the moment. The doctors had a talk to mummy and they said that he will be on the ventilator for a few more days as they want to start the fortifier again and they do not want to put him on CPAP at the same time in case his belly blows up again.

20/07/2009

Today the doctors started to fortify Toby’s feeds as he had lost some weight, he went back to 930g. His ventilator settings were reduced to 30% he is still having 0.5mg of morphine and hour and this is keeping him nice and relaxed. Mummy gave him a nice bed bath today and a massage in the morning and Toby really enjoyed both.

21/07/2009

Toby’s little tummy became distended again this afternoon and they had to stop fortifying his feeds. It appears that he cannot tolerate even half fortified milk, so after a discussion with his nurses, he was given more milk instead, he went up to 7mls, an hour. He also had his morphine stopped so that he can start to breath up a bit more and hopefully come off the ventilator in a few days. Daddy had a big long skin to skin cuddle in the evening, both Toby and daddy really enjoyed.

22/07/2009

Milk up to 7 mls an hour and Toby is tolerating it well.  His little tummy had gone back to normal size and he is looking good. No real changes to his care today as we are just waiting to see if he gains weight and if he continues to feel better after stopping the fortifier. His weight is now 1040g.

23/07/2009

Toby’s tummy is looking much better and he is now having 7.5mls of mummy’s milk and it coping wonderfully with this. When his feed tube started to leak and was not noticed for a little while, Toby got quite hungry and was trying to eat everything, given his dummy he really had a good suck until his milk started to fill his tummy again. Mummy had a big kanga cuddle, and Toby really loved it, his sats stayed up high and he was enjoying practicing his faces. Smiling and surprised looks and a very sad looking face too. But he was soon to smile again. He was given a loading dose of caffeine to help him to breath on his own better as they are hoping to take him off the ventilator in the morning.