Family Life

Family Life

Monday, November 22, 2010

Home Sweet Home Week 22

Today is the day that we get to take Toby home. We haven’t told anyone as we wanted to surprise them all even the kids, they are expecting us home but think that Toby is being transferred to Burnie. Not coming home! wow what a surprise our family is in for!  the last 2 nights we were allowed to take Toby back to ronald McDonald House, and everyone was so pleased to see him,  he would have his little graseby apnoea monitor on and it did alarm twice but with a little rub Toby was ok. it was a little frightening for mummy and daddy to have him all to ourselves to care for but we were so brave. mummy had to wake him up through the nights for feeds as he is still too little to wake himself up, and we dont want him to lose any weight.
All three of us went for a short walk into the city to buy som bits and pieces for Toby and Toby had another little apnoea but it was more because of the sun in his eyes, once mummy put a blanket over his pram to block it out he was perfect.   
So today we had to take Toby in to special care to get weighed, he lost a little but not enough to stop us from taking him home. we visited all his nurses and Drs and in a way we were sad when It was time to take him home for good.    dont get me wrong,  we were over the moon,  yet we had made so many friends over this journey and we were leaving them behind,  it was a wonderfully, sad day!
All nervous, we said our goodbyes and loaded Toby into the car to start the four hour trip home. 

Week 21

After his bad week, he looks alot better and is havinghis hernia op on the 3rd of nov, and all going well he can come home after that, or transferred back to burnie, depending on which dr he has, and how many braddys he has between now and then. 
he has gotten rid of his feeding tube finally as he is now fully breastfed, and having bottles at night, mum is only not gettin over there for 1 feed through the night, as untill he gets a little close to coming home, its a long way to walk at 3am on my own in the city.
he is also going for a walk around the hospital each day in his stroller. and he really like this. we have to take an oxygen tank and a rescussiatation bag and mask. and portable suction exquipment wit us at all times just in case but sofar he has been very good.
He has had cuddles with nan newman and nan and pop neilson, and cant wait to have more.

Toby had his hernia operation today, all went well and he come back to the NICU extubated. That is off the ventilator. Yay!  If all goes well he can be transferred back to Burnie at the end of the week

Week 20

Toby has come off the ventilator today, after recovering for the last few days, he has been pretty well sedated. His morphine and midazolam was stopped yesterday morning and he was suppose to come off the ventilator then but he did not wake up so he was left another day. This morning he was wide awake and not liking having the tube down his throat so they took it out at 10.30 and replaced it with some nasal prongs, he did not need the extra oxygen in the end but the prongs were left of to be on the safe side. But in the evening they were removed. Toby had some lovely cuddles with mum and dad. It Turns out the he had an infection in his blood and maybe in his urine, his spinal fluid came back clear, so that is good, he has to have antibiotics for another 3 days but then they can stop. Toby has been a different boy today, he hasn’t had any braddys, or apneas and his oxygen saturations have been good all day, we are all hoping that he can keep this up.

After a great week, Toby has been moved to Special Care today! Mummy is a bit nervous but he has so far had the same nursing staff. We also went for a walk to Hudson’s in the morning before he was moved, with nurse Jacky, to get all his nurses a coffee. Toby is doing really well, he is allowed to go for short walks with mummy by herself on the 3rd floor, but we have to take oxygen and a bag and mask with us, he must like the walks as he sleeps all the way through and wakes up when we get back.
If Toby continues to go well, his surgeon has agreed to do his hernia op on the 3rd of November, and if all that goes well, and we can get him up to full breastfeeds then he can come home a few days after! Yay.

Daddy got to take Toby for a walk with mummy today in his own pram. We went down to get some lunch and then walked back up zigzagging up the floors to stretch it out a bit longer. Toby was awake this time, and loved it all. He also had his first bottle feed with daddy, both of them enjoyed it very much.

Week 19

Friday Toby had an even worse day, full of big Braddys, the doctor put in an IV line in his left hand, just in case he didn’t come out of one, as he was having so many. His Doctor is pretty concerned about him at the moment and is thinking about doing a broncoscopy to see if anything is wrong with his throat or lungs, but he said that the equipment used will be to big to use on Toby and he will have to get bigger first. He is now 2430g. They are also trying to organize a MRI but that poses a problem as Toby will need to be sedated for this, which will compromise his breathing, and if he has one of his episodes while they are doing the scan, it will take some time to get to him, and then the pictures will be ruined, and they would have to start over again.  Also Toby’s inguinal hernia has gotten a lot worse and the surgeon wants to operate on it before it becomes strangulated, but that poses a big problem with the anesthetic too as Toby will most likely not handle one too well at the moment, so for now we are just hoping that he will settle down and get better. Daddy comes back down tonight, as we are all a little worried about him.
A lot better weekend, it seemed as though Toby recovered when the doctor put in his IV. It must have scared him.  He is still having a few little ones but so far they are not quite as scary as they were on Friday night. However his hernia is a lot worse. It will be interesting to see what happens this coming week.

Not a good day today, Toby started to have some pretty big braddys at 6am and by 10am when the doctors came around he was not looking good. They started him on CPAP, and then he moved to a short nasal tube for CPAP through the ventilator which also delivered him 1 breath every 10 seconds as by this stage Toby was having apneas as well as braddys. This style of CPAP only lasted 10 minutes and he had another big braddy so His doctors decided that it was time to fully ventilate him. He was given lots of sedation and pain relief and intubated. The doctors think that he may have an infection so they took blood tests, and did a urine test, initially they did a bladder scan and tried to get the urine out using a little needle into his bladder, but this didn’t work so his doctor put in a catheter to get the sample. They also sent away a fecal sample and some CFS from a lumber puncture. They started him on heavy antibiotics, and did an ultrasound of his brain. The ultrasound was clear, but by the end of the night it was looking like he has a urine infection, and or an infection in his blood. He now safe on the ventilator and pretty well sedated. Daddy rushed back down from Burnie as we are all pretty worried about him today.

Toby looks a bit better today; he has been given more sedation as he is trying to fight the ventilator. Which is a good sign as yesterday he didn’t have the energy to fight, however, we want him to rest and let the vent do the work for him so that he can get better so he has been sedated. His blood count is now low at 77, so the doctors have organized for him to have another blood transfusion today. His blood cultures and urine have shown the presence of infection but we will have to wait another day to see what grows. Also his CSF shows some white cells in it. This may be a concern for infection, but the doctors are not sure, as a newborn child could be expected to have some white cells in their CSF however as soon as they are out of the newborn period, and into the infant period they are not suppose to have any, and this can mean an infection in the CSF. The doctors are not sure if Toby fits into the Newborn or the Infant area, but he is on the strong antibiotics to cover him if it is an Infection. Mummy and daddy have also been told that the possibility of a urine infection may have been the cause of him having a rough time of it lately, as they can be brewing for some time before they show themselves. So hopefully when Toby gets better, his braddys settle down.

Week 18

Another bit of a rough day today, daddy decided to stay for a few extra days as Toby has some pretty big braddys this morning. Mummy and Daddy took, Larissa, Anthony and Aimee to Campbell Town to meat Nan and Pop Neilson so that they could take them home, and daddy can spend some more time with Toby.

More upsetting today as Toby had some more pretty big braddys, the doctors were talking about some tests to do to find out why he is having these braddys. Hopefully next week he will have a 24 hour Ph probe done, which is a little tube that is placed down the nose to the esophagus, then it records the amount of acid that enters the esophagus, over a 24 hour period, hopefully telling us how bad his reflux is.

Daddy had to go home today, Toby had a bit of a better day but is still having some pretty big braddys. His doctor has decided to put him on a high flow circuit to try to keep his airways open when he is having the braddys as he seems to be having what’s called a laryngospasm during the episodes, this is where his larynx just closes tightly and no air can get through no matter what the doctors do, and they doubt that they would even be able to get and ET tube through, if they needed to.  This is quite scary as if Toby was to not come out of one of his episodes they can’t breath for him, and it would take a fair while for them to get a iv line in and to give him the relaxant drugs to allow them to help him to breath. He would get pretty starved for oxygen over this time, and might not wake up! Mummy and daddy are pretty scared at the moment,

Week 17

Still off his CPAP and going great guns, Toby and mummy had a wonderful day today, In the morning we had a beautiful bath followed by a really good breastfeed, Toby didn’t even need a top up, then he snuggled down and both mummy and Toby had a little nap in the big comfy chair.  In the evening Toby had another very successful breastfeed without needing a top up! Mummy is going to ask the doctor about his plans for Toby going home or being transferred to Burnie in the morning. 

Toby come off his oxygen today and is going great, the doctor said that if he keeps it up he can go back to Burnie early next week.  Yay!!!

Toby is still off his oxygen, and only having the occasional braddy now the doctors are all very happy as they thought that he may need oxygen when he comes home. Mummy is very happy with him he weighs 2190g and he looks amazing. he is having 2-3 breastfeeds a day. Won’t be long till we get home now.

What started as a good day ended up being pretty horrible, Toby had some good breastfeeds in the morning, but he had a few big braddys when he was feeding so I decided that he needed a rest from breastfeeding for a while, and then in the afternoon, his doctor found his hernia again, and after talking to his surgeon, decided that they would operate on Monday if Toby was well enough so that he could still hopefully go home at the end of next week. Then at 9:15pm He had a massive braddy that he didn’t pick up from for about 20 minutes, the doctors were about to put him back on CPAP and even had the ventilator at the ready, we nearly lost him as they fought to get his heart rate back up, They are not sure why, but after that his breathing settled back down, with just oxygen, and his wonderful doctor Pete told us that he didn’t need CPAP as this would just upset him more, and a lot of his braddys are from him holding his breath, not from having trouble breathing. Anyway Toby got a IV and his feeds were reduced to half, and he had some bloods sent off to check for infection just in case, although no one really thought he had one.

Toby has been better today, his feeds are still at half and he still needs a little oxygen but he has been pretty good. The doctor has put off his surgery for his hernia repair until they are comfortable that he will be ok with the anesthetic and he will not be transferred to Burnie until after he has the surgery, so it looks like we will be stuck in Hobart for a little while longer. On the plus side, Nan Newman got to have her first cuddle today, both Nan and Toby really enjoyed it.

Week 16

Today Toby got another doctor, Pete, he has been really good and listened to mummy, he said that Toby can have up to 4 hours off CPAP in the morning and 4 hours off in the afternoon, if he handles it. He weighed 2130g and his feeds were put up to 30mls every 2 hours. In the afternoon Toby had 2 large vomits, one right before his feed and one right after. And his 2 good nursed Emily and Jane seen both happen and the very pronounced braddys that followed both. They mentioned this to doctor Pete on the afternoon round and he suggested that we stop fortifying Toby’s feeds with the Pepti Junior and thicken his milk instead to try to prevent him from vomiting. He also come to have a talk to mum later in evening and told mummy that he thinks his braddys may be reflux related. YAHOO mummy was so happy that someone was listening, and all evening Toby was a perfect baby! He also said that if that is the case he may well not even need the CPAP or NICU.  We will see what happens.
Toby has been a different baby today. The doctors continued with the thickened milk and wow, he hasn’t skipped a beat. All the nurses were so happy with him and he has spent the whole day off CPAP. Pete thinks it is worth giving him the chance to prove himself and see how he goes, so they are not suppose to put him back on unless he gets tired or starts working harder to breath. Nan and Grandad come to visit him today and brought down his bouncer and Toby got to sit in it for the first time. He seemed to really enjoy it.  earlier last week we were told that he would be longer than another 8 weeks. and i was not happy about that,  but this week we have a different doctor and he is working harder to help toby,  and so today he has had 11.5 hours and counting off the CPAP! and we are hoping for him to stay off. he has started thickening his feeds and this seems to have settled down alot. he is now 2130g which is almost a normal baby's weight,    we are hoping that he can stay off CPAP and be home alot sooner than the 8 weeks we were told.

Toby is still off his CPAP and doing really well. He has had about 1 big braddy a day but otherwise he is breathing fine. His other doctors and nurses are all a bit nervous as he was not weaned off slowly like they would have liked but mummy and doctor Pete both have faith in him. Keep up the good work Toby!

Week 15

Mummy had a good week at home although she got cranky at the nurses as they never called her when changes were made in Toby’s care, like on the Sunday when she left, the doctor decided that Toby should stay on CPAP while mummy was away as he had a few more braddys.  Mummy was not happy. After talking with the nurses several times a day while she was away, She was told most times that his braddys were associated with his feeding. Mummy still thinks that Toby has significant reflux and that is what is causing his braddys, the doctors started him on Ranitadine, to help prevent the pain from his reflux last week but he is still refluxing. But the doctors still think that his braddys are from him not breathing instead. They did put his milk back to 2 hourly feeds though. Mummy is finding it really hard to get her feelings across to the doctors but next week she will go and have a chat about it to them.

Mummy and daddy had a meeting with doctor Chris today as on his round this am he told mummy that he thinks that it would be a good idea to leave Toby on his CPAP for another month before he tries him off.  Mummy tried to mention Toby’s reflux a few times but was cut off by the doctor. Tim the nursing unit manager was also there to help try to sort out some of the inconsistencies with the nursing staff. Mummy and daddy were shocked to hear that doctor Chris said that Toby has the worst Chronic Lung Disease that he has seen since he has been in Tas, and that he thinks that we will be at least another 8 weeks in the NICU. He also said that Toby may need some tests to see if there is anything else causing his apneas, such a brain scan or bronchoscope. But they will wait and see what happens as Toby needs to get bigger before they can do them.

Toby gets another blood transfusion today as his HB was low again. He is now having 27mls of milk every 2 hours and going well. Still having braddys at feed times and when he vomits. He is 1950g and he has really chubby cheeks. He has a bath every second day and he loves the warm water. The doctors noticed that Toby has a hernia on his left side so got doctor Fenton to come and have a look at him, apparently his left is ok, but his right may have a hernia, so they are just going to keep an eye on it, and if it gets worse or he gets pain form it they will operate.

week 14

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

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.
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.

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

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

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

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.

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. 

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. 

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. 

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.

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

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!

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!

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.

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

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. 

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.

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.

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

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.
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.

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

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.
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.

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.

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.

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.

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.

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.

Week 6

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 1st 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.

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.

 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.

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.

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

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.

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.

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

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.

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!

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.

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

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.

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.

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.

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.


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. 

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

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.

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!

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

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.

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.  

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.

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

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.

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.

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.

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.

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.

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.

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.

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.