Week 6

11/07/2009

This evening Toby had a big episode where he was having trouble breathing and maintaining his oxygen levels, he had a new IV inserted as the old one tissued again, and they needed a new on incase he needed to go back on to the ventilator, mummy and daddy went out for tea to celebrate their 1^st wedding anniversary tomorrow, and while they were they had a phone call to tell them about the new IV and then another call not long after to tell them that they were going to put Toby back onto the ventilator as he had had another big episode. Apparently Toby’s tummy was so full of air and so big that he was having too much trouble breathing. The Doctor thinks he will only need to be on the ventilator for a few days to allow his tummy to settle.

12/07/2009

Toby’s tummy is now looking really good, it is almost back to normal size and his breathing is a lot better, he is in air a lot of the time, but he has some swelling around his legs and groin, but over all looking a lot better. Daddy had to go back home to work today and he was much happier to go now that Toby’s tummy looks better.

14/07/2009

 Toby’s ventilator settings had to be turned up today, his bloods come back yesterday that were taken on Saturday night and it appears that he has an infection, Toby is on morphine and he is very quiet, has hardly moved today. The doctors turned it down in the evening, to see if he gets more active. He has also developed a bit of a cold and has a lot of green snot building up at the back of his nose and a lot of mucous in his lungs, he does not look too good today and mummy is a little worried about him. He needs to be suctioned out very often and is also getting a little more swollen. He is however tolerating a small amount of mummy’s milk and this is great given the last few days.

15/07/2009

Ventilator settings were turned back down a bit this morning, to see if they could wean him off, but Toby didn’t cope very well, so they were turned back up. Mummy had a little cry this morning when she seen him as he was so swollen that his poor little head was all out of shape. He weighed 988g this morning but a lot of that is fluid, the doctors have not started him on any diuretics yet and mummy is disappointed as she thinks they should, mummy is getting a bit crabby with the nurses today. He is needing anywhere between 30 and 50% oxygen.

16/07/2009

He is still very swollen today and his ventilator settings were increased again today, but after the doctors round they decided to get an x-ray, and the x-ray showed that he had some fluid on his lungs. The doctors prescribed some diuretics this time and we are hoping that this will help his lungs get better so that he can get off the ventilator. Weigh night is tonight, we are hoping that he gets rid of a lot of his fluids so that his weight will be more accurate.

Week 5

8/07/2009

Toby is still on his CPAP, and still in air, although he does have a few de-saturations occasionally, he had a fantastic weekend, and there was even talk on Monday morning of taking him off the CPAP for short periods of time, but Toby didn’t like that idea as the minute this was mentioned, he had a big de-sat and braddy, so the doctors put up his CPAP from 5 to 6, which is still very good.  Today is Wednesday and he has put on weight finally, he is 860g and is looking really good, he is having fortifier in his milk again, and is having 5 ml an hour. He has started having pentavite, vitamins today and he has had some really wonderful kanga cuddles with mum. His brother and sisters come to visit him for the weekend, and had some time to have a little play with him; Daddy is also getting more cuddles, and changed his nappy for the first time on Sunday the 5/07/09. Hopefully by the end of the day his CPAP will be reduced to 5 again if he is able to cope with it.

9/07/2009

Toby had a bit of a rough night again, his feeds were stopped and he had to have another IV inserted, as his little tummy was quite distended. And it was making it harder for him to breath, in the morning his CPAP was put up to 7 and he needed a bit of oxygen to help him breath. His sats were swinging quite rapidly as well. The Doctor was contemplating giving him some more lasix and maybe steroids if needed, by the end of the day he had got back to air and his tummy is starting to get a bit better but his feeds are still stopped. And he is still having some problems breathing. Daddy got to have a nice kangaroo cuddle this evening and he is starting to look a bit better again.

10/07/2009

40 days old today, and weighing 883g, but Toby has a lot of fluid around the lower half of his body, he started the day with 33% oxygen and around lunchtime got down to air, but mummy had a nice kanga cuddle in the evening and when he was put back to bed his oxygen requirement was up to 35% a few hours later the doctor come around and turned up his CPAP to 8 and ordered some lasix finally for his swelling. Toby had an x-ray in the morning to check both his lungs and his tummy which was looking rather big, but the x-ray was ok, so the doctors decided to just continue keeping a close eye on him. When mum and dad left this evening Toby’s oxygen was back to about 27% and he was not swinging so much.

Week 5

29/06/2009

Today was a bit up and down again for Toby, he was doing really well in the morning, they started to fortify his milk and put it up to 5mls an hour, and they started to turn down his ventilator settings too. In the evening he had to have his IV line re sited to his right arm, and his tummy was looking a bit darker in color the doctors are keeping an eye on it and will do an x ray if they think they need to. His sats started swinging again a little after being really good throughout the morning.

01/07/2009

A good day today, Nan and pop Neilson came to visit today. And Toby was doing really well; the doctors are even talking about getting him prepared to come off the oscillator tomorrow. Yay!

02/07/2009

Toby is really doing well today again, they are preparing him to come of the oscillator but he will wait until tomorrow, because he is doing so well they changed their minds and instead of going back on to the normal ventilator he will be going back on CPAP, mummy is so excited.

03/07/2009

Toby is 33 days old today, and is choofing along fantastically. He had to have is IV re-sited this morning before he could be taken off the ventilator, and it took them a while to get a good line in,  the doctor shaved a good size part of his hair as they had to attempt to get one in his little head, but they were unable to get in there too. So another doctor come to look, and he managed to get one in his left arm. So poor little Toby has now got a very strange hair cut. He is having another blood transfusion today and is still on caffeine to help him to remember to breath, Spirolactone and lasix to help get rid of any excess fluid, and a decreasing dose of dexamethazone to help his lungs. It appears that it is helping wonderfully as his sats are soooo good. Today. Even on the CPAP he is on a peep of 6 that’s the pressure in his lungs, and he is in air, so he does not need any oxygen. Mum couldn’t be prouder of him at the moment.

Week 4

22/06/2009

Toby needed a rest today; he dropped his sats and had a few significant braddy’s so the Doctor decided to put him back on the ventilator. After scaring mummy and daddy a bit, we were allowed to see him and he’s was really looking more peaceful, his feeds were stopped for a little while to give him a break but by the end of the day he was back on 2ml and tolerating it well. He now has 2 new peripheral lines in, one in his hand and one in his foot.

24/06/2009

Bit of a rough day for Toby today, his oxygen saturation levels were constantly up and down, his Dr was not sure if he had an infection but decided not to give antibiotics and put up the pressures on his ventilation instead. He is having 4.5ml of mummy’s milk every hour and had another peripheral line put in his right ankle as the previous one fell out.

25/06/2009

Still having a bit of a tough run, through the night the doctors decided to start antibiotics as he had some really dramatic de-saturations. His ventilator settings were turned up again and he needs around 50% Oxygen. He had another chest x-ray this morning and His Doctor says that he has chronic lung disease and started him on lasix again. Maybe starting him on a steroid for his lungs over the next few days but at the moment the doctor is happy to wait and see if he becomes more stable. He is now having 5mls of mummy’s milk and is so far tolerating that well. By the end of the night Toby was put on the High Frequency Oscillating ventilator, as he was having some more pretty serious swings with his sats, and having trouble picking himself back up. After starting the new ventilation he became a lot more stable and mummy and daddy were able to go and sleep much better.

26/06/2009

Much better today, although in the morning Toby seemed to be struggling a bit, but it turned out that he had wriggled his endo tracheal tube up by a centimeter and once it was re taped in place he was much better. He spent a lot of the day in air or 22 -23% oxygen, so he’s been much better. Uncle Brian and Aunt Pattie came to visit today and were very surprised at just how little baby Toby is.

27/06/2009

After a really good night where the nurses were able to turn down Toby’s ventilator settings 2 times and he spent around 8 hours in air, Toby had a few large de-saturations in the morning. This prompted his Doctor to start him on Steroids for his lungs. He explained that they won’t work straight away but hopefully over the next few days they may make a difference in the swings in Toby’s oxygen saturations. He also explained that steroid use can increase the chances of Toby having some developmental issues as he grows older etc, but as he is getting closer to 4 weeks old then the risks are not quite as high. But Toby really does need to have them, as the Doctors have been playing with the idea for a few days, but because of the risks they wanted to wait just that bit longer.

Brian and Rachael came down to visit today and they will be giving daddy a ride home tomorrow. 

28/06/2009

Daddy went home this afternoon so that he can go back to work; he will be down again in 6 sleeps. Toby had a good day, his sats were still swinging but not as bad as they have been, and mummy is really hoping that he is starting to get better. Weigh night tonight so we are all anxious to see how much he has grown. He is still having 5mls of mummy’s milk and continues to tolerate it well.

Week 3

15/06/2009

Mummy did not like Toby’s nurses today, he was suppose to have is milk increased but the nurses did not do this, they also did not hand over some of the information and when new nurses come on they did not know how to handle the swings in his sats. At the end of the night his feeds were stopped as the nurse thought his little tummy was looking swollen, but by the morning it was all ok, and best of all Toby has gained some weight, he is now a whopping 847g, he weighs more than his birth weight and is looking really good.

16/06/2009

A much better day today, Toby has settled more with his sats, and his o2 is hanging around 33%, he has started his feeds again and his morphine has been ceased in preparation for him to come off his ventilator. The doctor thinks it will be this week sometime, and mummy is hanging out for a cuddle, he still hasn’t opened his eyes yet, mummy got to change his little nappy 2 times today, and he really likes his dummy! Sucking so hard that his nurses can’t believe it. Another blood transfusion today made him all nice and pink, overall he had a much more relaxing day and really enjoyed having mummy stroke his little head and pat his little bottom. The line in his head was taken out today as it had tissued, and one was put into his arm so that he could have the blood, so Toby is sporting a mow hawk haircut! Very cute!

17/06/2009

Today proved to be a good day, Toby was seen by the doctors in the morning and although he is not coming off the ventilator today, his setting have been reduced, he started the day on a breathing rate of 50 in the morning it was turned down to 45 then 35 and in the afternoon it was turned down further to 30 and then 25, when mummy left him tonight he was sitting on 27% Oxygen and his tube had a huge leak, around 90% so he was effectively breathing by himself and this has been occurring most of the day. The doctors were so happy that they are talking more about taking him off tomorrow. His Doctor Tony had a big talk to mummy today and told me that although he is not out of the woods yet things are looking really good so far, mummy is very happy. Mummy gave baby Toby a nice massage too today and he really like it, rolling his shoulders and looking really relaxed, he sucked on his little dummy for most of the day, and he is now having 1ml an hour of mummy’s milk again, and he seems to be tolerating that really well today. Mummy is getting a little excited as she was also told that she may be getting a cuddle tomorrow, as Toby’s cot needs to be changed and who better to hold him while they do this! Mummy noticed a sign on his cot in the evening asking for his cot to be changed when possible, and mummy added to the sign saying that could it happen when mummy is there please so that mummy can have a hold, as the nurses are not very good at passing that kind of important information on sometimes, Toby’s nurses name today was Emily, in the evening, we like her, and Julie in the morning. He is very close to opening his eyes, and mummy and Paige can’t wait! Still having a little trouble with his blood sugars though but the insulin is being adjusted to fix it.  His little toe looks really good now and we are all very doubtful that he will have any damage from the arterial lin15/06/2009

18/06/2009

He’s off the ventilator, YAY! And so far looking really good, he has a bright red hat on and some really big prongs up his nose, but is breathing up really well. Oh yeah and mummy got her first CUDDLE it was so nice, he has a beautiful baby smell and he made mummy cry. It was so beautiful to have that first cuddle, if only dad could have been here, he will get his cuddle soon enough though. He is having 1.5 ml of mummy’s milk now and so far tolerating that well, if he keeps it up he will be on 2 to 2.5ml tomorrow. He hasn’t opened his eyes yet but is still so close.

19/06/2009

Toby has had a bit of a rough day today, his CPAP got turned up a bit and his oxygen requirements have been swinging again, and by the end of the night it was looking like he might go back on the ventilator, mum was really unhappy with how his nurse Sam was looking after him as his sats would drop to low 60% and she would not turn up his oxygen, and after a few minutes she would jump on him and try to stimulate him roughly and he would just hold his breath even more, causing him to crash further. Mummy and Paige had a talk to doctor Tony and he was really good and said that they would talk to the nurses and try to fix it.  On the plus side Toby’s right eye is partially open, we can see his eye but it’s only open in the inside corner so hopefully tomorrow! He is Also on 2.5ml of mummy’s milk and is really enjoying it.  

20/06/2009

Daddy came back today and he brought Aimee, Anthony and Larissa with him, they were so excited to see baby Toby, Aimee and Anthony got to have a little play with him and stroked his hands and feet. Toby also opened his right eye to say hello to everyone, he was just waiting for daddy to cam back after all, and his left eye is still fused though. Nan and Granddad Newman also came to visit and Granddad got to see Toby for the first time. Toby is having 3 ml of milk now and his Doctor has stopped his lasix so hopefully he will put on some weight now.

21/06/2009

Daddy got to have a very brief hold today, while Toby had his sheets changed daddy got to hold him up, also he opened his Right eye for everyone else to see today, Daddy got a look for the first time, mummy thinks his eyes are more blue that brown at the moment although they are still very dark so it is hard to tell. He is having 3.5mls milk today and is so far tolerating it well. He has had his PIC line taken out of his left arm and as the day went on he also had the peripheral line taken out of his right hand, his milk was bumped up to 4mls an hour which is full feeds for him so his doctors are happy for him to have his medication put into his milk instead of putting in another needle. Daddy got his first real cuddle tonight too, Toby looked so small in his arms but he did look very comfortable.

Week 2

07,06,2009

Nan Neilson, Aunty Natalie and Cousin Paige came to visit today. Toby is having ½ ml mummy’s milk every 2 hours, but his little tummy looks, a bit distended, he had an x-ray but it looks like it is just wind, he also had his first poo today, so hopefully that will get his gut moving, they stopped his feeds though for a little while to see if it settles, Toby got his first little dummy today and he really seemed to enjoy sucking on it.

08,06,2009

today Toby had a rough day, he has developed an infection, and has been put on a Oscillating Ventilator, which breathes for him, at about 100 breaths a minute and rather than blowing his lungs up like a balloon it vibrates air down making him look like he has a wiggle. In the morning his umbi line fell out and was replaced by a cannula in his leg, and the Drs also put in a long line, a line that runs from his wrist to his heart, so that he can get the medications that he needs. He weighs around 710g. His milk has also been stopped so that he can have a good rest and get over his infection. Nan Neilson, Aunty Natalie and Cousin Paige went home this morning and Uncle Eric and Aunty Marina came to visit for a few days. He had a little problem with his arterial line as well today, when his nurse tried to take out blood for a test, his toes went all white, his art line was taken out, but his middle toe on his left foot has changed colour and is now a dark purple. Meaning he has an interruption to his blood supply to that toe. Drs are keeping an eye on it to make sure its ok.

09,06,2009

He is looking better today although still struggling with his infection; he is still on antibiotics to help him. The line in his leg tissued or fell out, and he had to have a new one in, the Drs tried to get it in his leg but was unable to so it was put in his little head, doesn’t look too nice but is well worth it, it is less likely to fall out where it is. He also had another blood transfusion tonight and mummy helped to do his cares, wash his face and change his nappy etc. Toby is now having ½ ml mummy’s milk every 2 hours, and his little toe is still purple but doesn’t look like it is getting any worse.

10,06,2009

Today Toby’s milk was increased to ½ ml every hour and in the evening 1ml every hour, and he appears to be tolerating it very well, yummy!

He is making a little noise like a lamb, because of a leak from his Endo tracheal Tube, it is quite cute and sounds like he is telling us a story, his oxygen is being turned up and down depending on how much he needs but is sitting around 25% he is still on his oscillating ventilator and his Dr thinks he will need to stay on this for around a week. He is very relaxed today, but is on a big dose of morphine to help him, think he like having his head rubbed and he had a good long suck of his little dummy this morning. The Drs also had another look at his toe and it is still discolored, the Dr thinks he will have a bit of tissue damage but it will hopefully heal ok, they are still just keeping an eye on it at the moment to see how it goes.

11,06,2009

On mummy and daddy’s first visit this morning, Toby was looking really good, his little toe was looking much better, and his ventilator setting had been turned down, he got to wear the little booties that uncle Eric and aunty Marina had brought for him, very cute! but after a little while Toby started to have some braddy’s which is where his heart rate slows down, and around lunch time he was having a real battle keeping his heat rate up, he was seen by the Drs and they thought that he was just fighting against his ventilator, he was very pale and his little toe started to look really bad. Some of his other toes started to look darker as well as the side of his foot, the doctor ordered a bolus of normal saline to boost the amount of blood that he has and after a little while it seemed to work, and the pink came back to his toes. Toby’s blood sugar level is also too high for him to gain any weight or nutrition form his milk so the doctors put him on some insulin to help decrease his levels. His antibiotics were also stopped as his blood cultures had come back negative. By the time mummy and daddy went back in the evening to see him he was doing much better, was much pinker and very active, The cannula in his head was taken out as it had tissued. Mummy and Daddy think that it won’t be long until he opens his little eyes as he is making some very funny facial expressions.

12/06/2009

Today Toby come off the oscillating ventilator his toe is looking much better, still a little black but starting to get some pink underneath. He had to have his tube replaced as there was a huge leak and he was doing most of his breathing on his own and when they replaced it the first time they used the same size tube, which was too small and still leaked, so later they had to change it again to put in a bigger one. He was put on insulin as his blood sugar levels were too high, and he would not put on any weight if they stayed high, he also had to have another cannula put into a vein in his head so that he could have the drugs needed to change his tubes. His long line is still in place in his left hand and he had the humidity turned down in his little home as his skin is better now his is getting older. He is on 0.5ml of milk via continuous feeds.

13/06/2009

Toby’s oxygen sats have been swinging between either too high or too low most of the day, The doctor says that this is to be expected as his lungs are still immature, his blood sugars have been more stable but he is still needing his insulin, he is now on 1ml an hour again via continuous feed through his nasal gastric tube, but is having a few refluxing episodes, where the milk runs back up his throat. His morphine infusion was turned town to half the dose he was having to help prepare him to come off the ventilator, the Doctor thinks in a few days he may be able to try CPAP, (continuous positive airway pressure) instead of his ventilator but they want to be feeling pretty positive about trying this first after only lasting such a short time last time. Mum and dad think that he looks like he is a bit bigger today, and his nurse Jodi agrees.

14/06/2009
After a bit of a rough week with an infection Toby is starting to do much better  he is off his special oscillaiton veintilator and back on to his normal one, and they are starting to wean him off that too, so hopefully in a few days he will go on to CPAP, which will keep his lungs slightly inflated but he has to do all the breathing himself,  much better for his lungs,   he still hasnt opened his eyes, but is soo close, daddy has to go back to work tomorrow so he unless Toby opens them in the next few hours Daddy will miss out.  Im bettin he will open them soon after daddy leaves! cheeck boy that he is!   anyway,  just adding a few pics for you all, he hasnt grown much but he is looking really good today.

Daddy went home today to go to work, he will be back on Saturday, Cousin Paige has come to stay with mummy to keep her company while daddy is away. Toby still has not opened his eyes, mummy though that he would open them just after daddy left but no, Toby had different ideas, he’s probably waiting for him to get back, he is still swinging whit his 02 sats but is otherwise quite stable.

Week 1

Toby is in the dark a lot of the time and his little home is kept very humid for his skin, he was put under a blue light a few times to help decrease his billyrubin levels, or his jaundice. He was tried off his ventilator and put on CPAP but only lasted 2 hours as the doctors noticed he has a large PDA that was making it harder for him to breathe effectively, he was given medication for this. Day 4 mummy got to change his nappy for the first time. Toby had his first blood transfusion on day 5 and he has a 4.5mm PDA, he was given indomethacin to help this and by day 5 it was almost closed. He is having 0.5ml of mummy’s milk every 4 hours he has lipids, which is a form of fat being fed into his vein.
  Toby is in the dark alot of the time, and his little home is kept very humid for his skin so they are not the best quality but about the best that we can get at the moment, hope that you enjoy them,  today he is 5 days old, and is doing very well,  he is having a blood transfusion today as they keep takin his precious blood out for tests, and he needs it more than they do. he is on a ventilator still, but is not requiring any oxygen. his heart is looking much better with his PDA almost closed, and he is having a very satisfying 0.5ml of mummys milk every 4 hours,   Mum changed his nappy yesterday for the very first time, he is getting his umbiliacle line taken out after his blood transfusion today and the drs will be attempting to put in a 'long line' in either his leg or his arm, which will help them give him all his medications. he has lipids being fed into his vein, This is a form of fat,  Mum thinks she should have been able to donate some of hers!  but otherwise he is just sitting tight and growing really well.