So yesterday we finally got to have Bailey's sedated EEG. We got there at 11:00am and the nurses did their obs that I am so used to seeing. Then at 12:00pm , he was to have the EEG at 1:00pm they gave him his dose of sedatition medication after a struggle to actually get the medication down. Bailey was doing his impersionation of someone drowning! He was out like a light within 5 minutes!
They came and did the EEG at 1:15pm and I was sneakly trying to get the techinician to tell me if she saw anything abnormal she didnt let me know anything she said she didnt know but I saw her looking really closely at the computer a few times and also once when i was looking at the computer for 10 minutes all the lines went haywire and they had not been like that so we will see. n Now all I have to do is wait for the EEG results which i will hear about on the 21st May if everything is ok of course if it shows something it will be sooner.
To top the day off I came home to my other two beautiful boys who came running up to me and said we missed you mummy-awww it melted my heart.
4/30/09
4/23/09
What Can I say !!!!
Sorry for not writing for awhile been busy busy! Bailey started getting sick on Monday and was refluxing really bad and breathing way too fast so he wasn't giving me much time to get on the computer. Then on Monday night he got pretty bad he had chills and fevers was awake all night. At 4 in the morning I got up with him to change a nappy and clothes that he had wet through and noticed he was shivering I took his temp and it was 33.2 degrees Celsius Bailey has never been that low before! Then 10 minutes later it shot up to 38 degrees Celsius. He had an appointment with occupational therapy on that day so I thought I would still take him seeing as though he was lethargic and would let anyone do anything to him and this would be good because he is always fighting the lady at occupational therapy and she can't get anything done most of the time.
So we went up to the appointment. Now I don't have my license so I have to get people to take me up. I had full intentions of going to the hospital after my appointment, I live an hour away, and they agreed that Bailey was very docile and letting them do things. They were happy though because he was so floppy it showed that he does have the range in his left arm to get it above his head he just won't do it himself so no arm measurements today for a splint. She also said that Bailey is doing things a lot on his right side only. He rolls over on his right, is sitting supported with his right arm but not doing these thing with his left so I have to encourage that and she showed me some ways to do that. He also has low trunk tone on his left side and when she finally got him to roll onto his left side, after much persuasion, he didn't have very good control when he went back. Another thing is that he is still having his hands in fists a lot and I have noticed that when he has a toy in one hand he will have the other one in a fist she told me this is neurological. He also should be playing with one toy while reaching out with another, which he is not doing and also bring hands to mid line and playing with toys. He also cannot reach up with his left arm to get a toy that is high. She also answered my question about him falling a lot while crawling and said that he constantly rocks while crawling and that is because he is weaker on that left side. I have also noticed that he is running into things like he doesn't have the sense they are there. I mentioned this to her and she said that that has something to do with his balance so we will see anyway. It was actually quite funny at one point she was trying to get Bailey to reach out for a toy using his left arm and he just kept pivoting and reaching for it with his arm, after about the 10th time of doing this he chucked a tanty!
After the appointment I took Bailey to the hospital, luckily there weren't many people there. His resps were 64 when he got there and 37.8 degrees on panadol. When we got in I gave them a run down of what had been happening when they asked me to take his clothes off there was this HUGE rash in his groin area I said oh that's new he also had a couple of spots on his hand and legs. The paediatricians came down, all the peads know Bailey and were actually happy to see in in a way. They said they weren't sure what was wrong with him but his breathing had slowed down since he got there and he was sating at 94 his chest sound clear and they didn't know what the rash was from but they were happy that it did fade when pressed. I had to take a urine cup home to get some wee for the next days appointment(don't let me even get started on that!) So off i went also with some syringes because he was not eating properly.
The next day was MEANT to be Baileys EEG sedated so i was MEANT to be up at the hospital at 11;00am. My hubby could not get the day off so I organised for my sister in-law to take me up as she was going to uni. I also organised her to take me home at 3:00pm cause that is when she finished and Baileys EEG was at 1:00pm and he had to wake up a bit before he was allowed home. We had to leave at 9:00am cause my sister in-law had to be at Uni at 10 and i live an hour away. Well at about 9:45 am the hospital rang me and asked if I remembered that I had the appointment today I said that I did and i was on my way up. They said oh your going to be early and i said that I knew that and I was going to go do some window shopping till 11:00 . They said that was fine. We where just about to get in town at about 10:15 and they rang and said we are sorry your appointment has been cancelled the paediatric ward is too full!!!!!!!!!!!!!!! I was so pissed off , excuse the french, not only did i have only one bottle for Bailey because he was meant to fast from 10 i was now going to be stuck in town for 4 and a half hours! With only a front pouch. I was so upset, now I of all people can understand that the paediatric ward does get full of sick kids, we have been there ourselves many a time. What i don't get however is how they could ring me reminding me of my appointment and then ring up 30 minutes later cancelling it to top things off I had almost lost my voice from over exertion. So anyway we have another appointment next Wednesday for it and i think I will be complaining.
To end on a happy note Ryan got his school report and he is doing very well although he gets concerned if he makes a mistake(his father all over he is such a perfectionist lol) so i was quite happy about that. Thomas has his interview with the school on Friday so i am hoping he has his op before he goes to school next year. To top things off i feel 10 times better today and i am going to make a cake with my man Tommy as we call him bye for now xxx
So we went up to the appointment. Now I don't have my license so I have to get people to take me up. I had full intentions of going to the hospital after my appointment, I live an hour away, and they agreed that Bailey was very docile and letting them do things. They were happy though because he was so floppy it showed that he does have the range in his left arm to get it above his head he just won't do it himself so no arm measurements today for a splint. She also said that Bailey is doing things a lot on his right side only. He rolls over on his right, is sitting supported with his right arm but not doing these thing with his left so I have to encourage that and she showed me some ways to do that. He also has low trunk tone on his left side and when she finally got him to roll onto his left side, after much persuasion, he didn't have very good control when he went back. Another thing is that he is still having his hands in fists a lot and I have noticed that when he has a toy in one hand he will have the other one in a fist she told me this is neurological. He also should be playing with one toy while reaching out with another, which he is not doing and also bring hands to mid line and playing with toys. He also cannot reach up with his left arm to get a toy that is high. She also answered my question about him falling a lot while crawling and said that he constantly rocks while crawling and that is because he is weaker on that left side. I have also noticed that he is running into things like he doesn't have the sense they are there. I mentioned this to her and she said that that has something to do with his balance so we will see anyway. It was actually quite funny at one point she was trying to get Bailey to reach out for a toy using his left arm and he just kept pivoting and reaching for it with his arm, after about the 10th time of doing this he chucked a tanty!
After the appointment I took Bailey to the hospital, luckily there weren't many people there. His resps were 64 when he got there and 37.8 degrees on panadol. When we got in I gave them a run down of what had been happening when they asked me to take his clothes off there was this HUGE rash in his groin area I said oh that's new he also had a couple of spots on his hand and legs. The paediatricians came down, all the peads know Bailey and were actually happy to see in in a way. They said they weren't sure what was wrong with him but his breathing had slowed down since he got there and he was sating at 94 his chest sound clear and they didn't know what the rash was from but they were happy that it did fade when pressed. I had to take a urine cup home to get some wee for the next days appointment(don't let me even get started on that!) So off i went also with some syringes because he was not eating properly.
The next day was MEANT to be Baileys EEG sedated so i was MEANT to be up at the hospital at 11;00am. My hubby could not get the day off so I organised for my sister in-law to take me up as she was going to uni. I also organised her to take me home at 3:00pm cause that is when she finished and Baileys EEG was at 1:00pm and he had to wake up a bit before he was allowed home. We had to leave at 9:00am cause my sister in-law had to be at Uni at 10 and i live an hour away. Well at about 9:45 am the hospital rang me and asked if I remembered that I had the appointment today I said that I did and i was on my way up. They said oh your going to be early and i said that I knew that and I was going to go do some window shopping till 11:00 . They said that was fine. We where just about to get in town at about 10:15 and they rang and said we are sorry your appointment has been cancelled the paediatric ward is too full!!!!!!!!!!!!!!! I was so pissed off , excuse the french, not only did i have only one bottle for Bailey because he was meant to fast from 10 i was now going to be stuck in town for 4 and a half hours! With only a front pouch. I was so upset, now I of all people can understand that the paediatric ward does get full of sick kids, we have been there ourselves many a time. What i don't get however is how they could ring me reminding me of my appointment and then ring up 30 minutes later cancelling it to top things off I had almost lost my voice from over exertion. So anyway we have another appointment next Wednesday for it and i think I will be complaining.
To end on a happy note Ryan got his school report and he is doing very well although he gets concerned if he makes a mistake(his father all over he is such a perfectionist lol) so i was quite happy about that. Thomas has his interview with the school on Friday so i am hoping he has his op before he goes to school next year. To top things off i feel 10 times better today and i am going to make a cake with my man Tommy as we call him bye for now xxx
4/19/09
Sickness and Constipation:)
Well we have all been sick the past 7 days. I took Bailey to hospital on Wednesday he has been constipated for 3 weeks and only doing little bowel movements which are rock hard and he was screaming in pain when he was doing them! I had tried everything i tried prune juice his usual lactrlose and infant suppositories nothing was working and i was tired of having a baby who was up most of the night! Well they put him on huge doses of stuff called para choc and hopefully he should be coming better he slowly is he has don e 2 soft poos since then so. They also want to see me again because Bailey is usually constipated and they want to check that nothing is going on there I got an appointment on that Friday but they rang me 5 minutes before i was about to leave to tel me that the person who was doing it was sick! We should be going sometime this week I'll keep you all updated. We have a pretty busy week this week.
On Friday the two older boys went up to my sisters house to play when they got back I noticed that Thomas was acting really tired and out of sorts. Now if you knew Thomas he is the complete opposite of that. Then he felt really hot so I took his temperature and lo and behold it was 39.1 degrees Celsius! I gave him some panadol and as we already had the Dr coming up to do all of our flu shots so i thought I'd ask him to have a look. Thomas has to have his adenoids out tonsils out and grommets put in whenever we get off the damn waiting list so it didn't surprise me when the Dr said he had another ear infection. Just me, hubby and Ryan ended up getting the flu shot Thomas and Bailey will get theirs another day.
Well Yesterday Thomas started getting red spots on his tongue which have today turned into red spots on his feet, hands and groin area. I will have to get the Dr up again tomorrow to have a look. He is much better today temperature wise. To top everything off i have got a really sore throat which as you probably all know i have to put up with cause I'm trying to look after everyone else so it's not getting any better.
I'm sick of sickness i hope it will end in our house very soon. Sorry about the rant was in one of those moods :)
On Friday the two older boys went up to my sisters house to play when they got back I noticed that Thomas was acting really tired and out of sorts. Now if you knew Thomas he is the complete opposite of that. Then he felt really hot so I took his temperature and lo and behold it was 39.1 degrees Celsius! I gave him some panadol and as we already had the Dr coming up to do all of our flu shots so i thought I'd ask him to have a look. Thomas has to have his adenoids out tonsils out and grommets put in whenever we get off the damn waiting list so it didn't surprise me when the Dr said he had another ear infection. Just me, hubby and Ryan ended up getting the flu shot Thomas and Bailey will get theirs another day.
Well Yesterday Thomas started getting red spots on his tongue which have today turned into red spots on his feet, hands and groin area. I will have to get the Dr up again tomorrow to have a look. He is much better today temperature wise. To top everything off i have got a really sore throat which as you probably all know i have to put up with cause I'm trying to look after everyone else so it's not getting any better.
I'm sick of sickness i hope it will end in our house very soon. Sorry about the rant was in one of those moods :)
4/15/09
More pics of Bailey in NICU!!!
Bailey 2 minutes old!!!!
My first visit to Bailey 2hrs after he was born.
4/14/09
Easter and Baileys progress!!!
Well Easter was great fun Bailey got his first taste of chocolate and the other two boys just looovvvveeeddd the Easter egg hunt and the big bunny feet that the Easter bunny left!!! The boys got more chocolate then they can probably handle and i fear we will be eating chocolate for the next month.
On Friday the !0th April we went to a park with all the boys and had some fish and chips. I bit the bullet and decided to give Bailey some chips, ends bitten off of course, he loved them!!! He is so much better with finger foods then me feeding him and he has gotten much better with eating too. Problem is he only likes certain foods, little fusspot, and refuses anything else! He loves mashed banana ands will quite happily eat a full banana. He also likes mashed veggies and will eat quite a lot of that as well. He doesn't however like apples, mango, blueberries or pumpkin.
On Thursday 9th April we had an appointment with my private pedi to discuss the EEG that didn't happen. He said to not worry about Bailey not eating very much because some babies refuse to eat until they are 12 months old. He also explained the sedated EEG to me and said he will be in the pediatric ward early in the morning and his appointment is at 1:00pm and he will be monitored and he can go home as soon as he wakes up he also said he would be getting a drip put in for the medicine to go through. He was very happy that Bailey was crawling even though he is still falling over to the left hand side quite a bit.
When i got home the hospital rang me to let me know i had an appointment on the 22nd April and i had to be in the pediatric ward at 11am when they would knock him out with ORAL medication now I'm just a little bit worried about this as Bailey is not very good with taking oral medication and i told the nurse this and she said that they had ways around that. If the oral stuff doesn't knock him out enough he will have a drip put in and heavier sedation. So fingers crossed that the minimal sedation will work. Bailey has already probably had more drips then me!!!
Oh and Bailey has just got his first two teeth finally lol!!! He is also sitting supporting himself with his arm(his right one) he is continually amazing me with his steely determination to do things. My parents have two steps in their house to get from one part of the house to the other and he was trying his utmost best to get up there while he can crawl he is nowhere near trying to pull himself up yet. While i was up at my parents house i made Baileys 1st birthday invitations now all i have to do is print them out!! He will be 1 in 4 weeks and it's amazing to see just how far he has come.
On Friday the !0th April we went to a park with all the boys and had some fish and chips. I bit the bullet and decided to give Bailey some chips, ends bitten off of course, he loved them!!! He is so much better with finger foods then me feeding him and he has gotten much better with eating too. Problem is he only likes certain foods, little fusspot, and refuses anything else! He loves mashed banana ands will quite happily eat a full banana. He also likes mashed veggies and will eat quite a lot of that as well. He doesn't however like apples, mango, blueberries or pumpkin.
On Thursday 9th April we had an appointment with my private pedi to discuss the EEG that didn't happen. He said to not worry about Bailey not eating very much because some babies refuse to eat until they are 12 months old. He also explained the sedated EEG to me and said he will be in the pediatric ward early in the morning and his appointment is at 1:00pm and he will be monitored and he can go home as soon as he wakes up he also said he would be getting a drip put in for the medicine to go through. He was very happy that Bailey was crawling even though he is still falling over to the left hand side quite a bit.
When i got home the hospital rang me to let me know i had an appointment on the 22nd April and i had to be in the pediatric ward at 11am when they would knock him out with ORAL medication now I'm just a little bit worried about this as Bailey is not very good with taking oral medication and i told the nurse this and she said that they had ways around that. If the oral stuff doesn't knock him out enough he will have a drip put in and heavier sedation. So fingers crossed that the minimal sedation will work. Bailey has already probably had more drips then me!!!
Oh and Bailey has just got his first two teeth finally lol!!! He is also sitting supporting himself with his arm(his right one) he is continually amazing me with his steely determination to do things. My parents have two steps in their house to get from one part of the house to the other and he was trying his utmost best to get up there while he can crawl he is nowhere near trying to pull himself up yet. While i was up at my parents house i made Baileys 1st birthday invitations now all i have to do is print them out!! He will be 1 in 4 weeks and it's amazing to see just how far he has come.
4/8/09
Photo's
Bailey's first breastfeed!!! I know don't you just love the pink blanket lol!!!
Bailey on CPAP
Bailey 1st blood transfusionGood News...... Not So Good News!!!!
Well for once I'd like to start of with a positive so I'm going to start with the good news!!! Yesterday Bailey was weighed and he had put on 13o grams in a fortnight and he grew a cm he is now 8.5kilo and 76cm long. He has also surprised me by starting to crawl mind you he falls over an awful lot so don't know if it's to do with the weakness down his left side but it's a start and his steely determination has me bursting with pride.
Now for the bad news Bailey is sick well he has a fever and has lost his voice and did not sleep well last night. He hasn't eaten any solids at all for 3 days now. I had the dr up for him yesterday and he said first off that one of his tonsils was 3 times bigger then the other one! He then proceded to the couch looking very worried. I asked what it could be and he said well it could be the start of tonsilitis but its weird. Then he said I'll another look the second time he had a look he said oh no it's just slightly bigger and said that i had to keep an eye on wether he starte dto get fevers or not which i already knew. Sometimes i wonder if he changed his mind so that i would not worry so much :)
We have got another appointment today so i will tell anyone what happens on my next blog :-)
Now for the bad news Bailey is sick well he has a fever and has lost his voice and did not sleep well last night. He hasn't eaten any solids at all for 3 days now. I had the dr up for him yesterday and he said first off that one of his tonsils was 3 times bigger then the other one! He then proceded to the couch looking very worried. I asked what it could be and he said well it could be the start of tonsilitis but its weird. Then he said I'll another look the second time he had a look he said oh no it's just slightly bigger and said that i had to keep an eye on wether he starte dto get fevers or not which i already knew. Sometimes i wonder if he changed his mind so that i would not worry so much :)
We have got another appointment today so i will tell anyone what happens on my next blog :-)
4/6/09
Sorry Sorry Sorry!!!
Sorry to anyone who has been reading this, If there is anyone lol, I have been so busy the last week and a half and haven't had time to get on to do another blog.
Last week was soooooo packed with apoointment after appointment. On Tuesday I had well Bailey had Physio and occupational therapy. He screamed the whole time he was there and was not cooperating at all. If they even so much as looked at him he would scream which made their job very very hard. I asked them if they thought he had cerebral palsy and they said that he does show some signs of it. They were quite happy with his gross motor skills. Not so much with fine he is still very stiff in his elbow and shoulder joint he does have the range there but he doesn't like moving it for some reason. The occupational therapist said that i had to go back in 3 weeks so she could do some arm measurements, Don't know what for???, and that she may even splint his arm next time. This whole time we were talking he was screaming and i mean screaming he litrally was sobbing. As soon as we got out in the car he stopped and went to sleep!!!
On Wednesday we had 2 appointments one with Early Learning and one with the NICU team which is a follow-up 8 month corrected appointment. Early Learning came to my house which was really good cause its starting to get really cold here. There was two women this time because the one who usually is the one who is in charge of the premmie playgroup is handing me or Bailey over to another one who is in charge of a playgroup that is for babys with disabilities or learning difficulties(whoa that last sentence confused me lol). It was really good actually they focused on the things he was doing rather then the things he wasn't which not many people do. He even got up on hands and knees and crawled 2 crawls!!!! Woo Hoo Bailey. They agree he does have the weakness on his left side . When they were trying to get him from lying to sitting he wasn't putting his left hand above his head like he is supposed to. They were great with Thomas as well the new Woman that i will be having was playing with him and he loved it lol. I have another appointment with her in two weeks.
The Nicu appointment was good as well they have the same concerns that my other private pead has that he is slightly stiffer on the left side then the right but that my private pead is doing everything right. Oh and they said something about going off his elecare im not sure why he isnt eating much still. He lost another 200grams in a week so it will be interesting to see what he weighs tomorrow at his health nurse check.
On Thursday he had hiss eeg appointment. Well lets just say it didn't go very well. They couldn't get a trace because Bailey was not having a bar of having all these wires on his head and he screamed and hyperextended and they couldn't do it. So now he has to have it done again sometime this month under sedation!!! Now I'm totally freaked out I just don't know if they will montier him, How they will give it to him because he can't take anything orally and what will happen if something else happens lol. I know i might sound paranoid but oh well. I also am meant to be seeing my private pead this week to discuss his eeg and how much medication to give him for his seizures but how are we going to do that if there are no eeg results. I figure i should go anyway because there are questions i want to ask him about the sedation and seizures anyway.
Then on Friday we had Ryan's swimming carnival so off we went to that he did very well and came 2nd in one race. We also got his report card it had on it that he wrries if him makes a mistake i told his teacher that he is like this at home as well and i tell him if he tries his best that is all that matters.
I spent the weekend relaxing well as much as a mother of 3 can relax!!!
Last week was soooooo packed with apoointment after appointment. On Tuesday I had well Bailey had Physio and occupational therapy. He screamed the whole time he was there and was not cooperating at all. If they even so much as looked at him he would scream which made their job very very hard. I asked them if they thought he had cerebral palsy and they said that he does show some signs of it. They were quite happy with his gross motor skills. Not so much with fine he is still very stiff in his elbow and shoulder joint he does have the range there but he doesn't like moving it for some reason. The occupational therapist said that i had to go back in 3 weeks so she could do some arm measurements, Don't know what for???, and that she may even splint his arm next time. This whole time we were talking he was screaming and i mean screaming he litrally was sobbing. As soon as we got out in the car he stopped and went to sleep!!!
On Wednesday we had 2 appointments one with Early Learning and one with the NICU team which is a follow-up 8 month corrected appointment. Early Learning came to my house which was really good cause its starting to get really cold here. There was two women this time because the one who usually is the one who is in charge of the premmie playgroup is handing me or Bailey over to another one who is in charge of a playgroup that is for babys with disabilities or learning difficulties(whoa that last sentence confused me lol). It was really good actually they focused on the things he was doing rather then the things he wasn't which not many people do. He even got up on hands and knees and crawled 2 crawls!!!! Woo Hoo Bailey. They agree he does have the weakness on his left side . When they were trying to get him from lying to sitting he wasn't putting his left hand above his head like he is supposed to. They were great with Thomas as well the new Woman that i will be having was playing with him and he loved it lol. I have another appointment with her in two weeks.
The Nicu appointment was good as well they have the same concerns that my other private pead has that he is slightly stiffer on the left side then the right but that my private pead is doing everything right. Oh and they said something about going off his elecare im not sure why he isnt eating much still. He lost another 200grams in a week so it will be interesting to see what he weighs tomorrow at his health nurse check.
On Thursday he had hiss eeg appointment. Well lets just say it didn't go very well. They couldn't get a trace because Bailey was not having a bar of having all these wires on his head and he screamed and hyperextended and they couldn't do it. So now he has to have it done again sometime this month under sedation!!! Now I'm totally freaked out I just don't know if they will montier him, How they will give it to him because he can't take anything orally and what will happen if something else happens lol. I know i might sound paranoid but oh well. I also am meant to be seeing my private pead this week to discuss his eeg and how much medication to give him for his seizures but how are we going to do that if there are no eeg results. I figure i should go anyway because there are questions i want to ask him about the sedation and seizures anyway.
Then on Friday we had Ryan's swimming carnival so off we went to that he did very well and came 2nd in one race. We also got his report card it had on it that he wrries if him makes a mistake i told his teacher that he is like this at home as well and i tell him if he tries his best that is all that matters.
I spent the weekend relaxing well as much as a mother of 3 can relax!!!
Subscribe to:
Posts (Atom)
