She Did it! Congratulations Ava!
1 year ago
Thursday, 14 October 2010
Wednesday, 13 October 2010
Here's the update, good and bad
so a lot has happened in the last month, mainly for me but about that later....
well on the last update i mentioned the mucousy choking and said no reflux with it so not too concerned, well i should have known the mucousy stuff was to do with his reflux, cos yup he's been refluxing, not after every feed but at 1 sometimes 2 out of his 3 daily boluses, we thought it was to do with that he was getting too much milk at his feeds, so i had to consult with the dietician about changing his feeding regime, not much we can do with it because there's a certain amount of calories we HAVE to give him and he's not good at all with large volumes, so he's now on the pump for 10 hours at night, subject to change as he's still having refluxes, guess it's the wrap coming a bit loose who knows, only a month to wait for his checkups at hospital, but will be mentioning it to his doctor when we take him in, he's got what we think is a touch of eczema and still has the runs, now tho they're back to how the were just after his fundo and smell so vile.
He's also teething like mad at the minute but so far only 1 more tooth has popped the surface so that's him now got 5 teeth, 1 of his top teeth is looking like it's gettin ground down the corner with him grinding his teeth but i have no idea how to stop that.
He's still not eating a thing either, i came across a forum for tube fed babies and they all seem to swear by this 'Graz method' it's a feeding clinic in Austria, but VERY expensive :( but with a high success of weaning these tube fed babies off their tubes in a few weeks, i am liking the sound of it but will have to do my research 1st, the cheapest option is to do the method via email, apparently it's just as successful, so if any this will be the option we choose, but will have to see about raising the funds, but obviously i will research it A LOT 1st.
So that's about it to be honest nothing much has been happening with Lewis, he's coming on so much and doing everything he should be except eating lol and growing a LOT, it's now 1 month till his birthday, i just can't believe it at all, this time last year sitting absolutely terrified that time was getting closer and not knowing what lay ahead and no just look at him, he's amazing he really really is, my wee rock this past couple weeks, which leads me to the bad news,
i'm not going into too much detail as it's Lewis's blog etc but it's what they call 'pregnancy of unknown location' static bloods say it's there but it's not surviving and it's not letting go either, and they can't locate it on scans, it's not been causing problems but needs to be removed :( had an injection of methextrate on monday which breaks down cells, so just waiting on things to happen now and hopefully it'll all be over soon and i won't need a 2nd injection, so i had been told last week baby would already have passed, but then told on monday that as the bloods are static it's still there, so i guess when the levels start falling we'll know it's really gone, so that's 3 wee angels for us now :(
well on the last update i mentioned the mucousy choking and said no reflux with it so not too concerned, well i should have known the mucousy stuff was to do with his reflux, cos yup he's been refluxing, not after every feed but at 1 sometimes 2 out of his 3 daily boluses, we thought it was to do with that he was getting too much milk at his feeds, so i had to consult with the dietician about changing his feeding regime, not much we can do with it because there's a certain amount of calories we HAVE to give him and he's not good at all with large volumes, so he's now on the pump for 10 hours at night, subject to change as he's still having refluxes, guess it's the wrap coming a bit loose who knows, only a month to wait for his checkups at hospital, but will be mentioning it to his doctor when we take him in, he's got what we think is a touch of eczema and still has the runs, now tho they're back to how the were just after his fundo and smell so vile.
He's also teething like mad at the minute but so far only 1 more tooth has popped the surface so that's him now got 5 teeth, 1 of his top teeth is looking like it's gettin ground down the corner with him grinding his teeth but i have no idea how to stop that.
He's still not eating a thing either, i came across a forum for tube fed babies and they all seem to swear by this 'Graz method' it's a feeding clinic in Austria, but VERY expensive :( but with a high success of weaning these tube fed babies off their tubes in a few weeks, i am liking the sound of it but will have to do my research 1st, the cheapest option is to do the method via email, apparently it's just as successful, so if any this will be the option we choose, but will have to see about raising the funds, but obviously i will research it A LOT 1st.
So that's about it to be honest nothing much has been happening with Lewis, he's coming on so much and doing everything he should be except eating lol and growing a LOT, it's now 1 month till his birthday, i just can't believe it at all, this time last year sitting absolutely terrified that time was getting closer and not knowing what lay ahead and no just look at him, he's amazing he really really is, my wee rock this past couple weeks, which leads me to the bad news,
i'm not going into too much detail as it's Lewis's blog etc but it's what they call 'pregnancy of unknown location' static bloods say it's there but it's not surviving and it's not letting go either, and they can't locate it on scans, it's not been causing problems but needs to be removed :( had an injection of methextrate on monday which breaks down cells, so just waiting on things to happen now and hopefully it'll all be over soon and i won't need a 2nd injection, so i had been told last week baby would already have passed, but then told on monday that as the bloods are static it's still there, so i guess when the levels start falling we'll know it's really gone, so that's 3 wee angels for us now :(
Tuesday, 12 October 2010
Will Update Later
Have decided to reopen the blog to the public, i was looking through the feed thing and discovered people used to come across my blog by googling for various CDH things and google would direct them to certain posts of mine relating to what they were looking for, so i'm glad my blog 'helps' people.
i know we're well overdue an update but lots of things been going on here lately so i promise i'll update later today and add some recent pics of our gorgeous Sunshine Warrior.
Hayley xx
i know we're well overdue an update but lots of things been going on here lately so i promise i'll update later today and add some recent pics of our gorgeous Sunshine Warrior.
Hayley xx
Thursday, 9 September 2010
highs and lows
well last wednesday (1st) Lewis was back at yorkhill for his post op check supposedly with his consultant, who we seen for like 2 minutes!!! no1 is concerned that Lewis STILL has the runs, which he's had since his operation, his consultant took 1 look at him said oh he looks great, we'll schedule him to come back to the diaphragm clinic in November!!!
So i'm not happy but what can i do, he's been the diaphragm clininc only once already which was in february, the month after he was discharged from NICU and we haven't seen his lungs or had his chest listened to or his diaphragm checked out since, not impressed.
Oh and he passed his hearing screening today, i knew he would though :)
He's still not eating either, in fact i think the situation is getting worse, he only has to touch some foods and he's gagging and retching at them nevermind if it actually touches his lips, this is so frustrating, he's just not interested in food, he WILL put anything in his mouth as long as it's not food. I'm just at a loss with this now, i have no idea what to do or try next and SALT is no use either, so what now?
Lewis has been gaining weight recently, yesterday was the latest weigh in, he has put on 5oz in one week, how fab, that's the most weight he's ever gained in a week, sometimes didn't even gain that in a month, but can feel the difference in him now he feels so heavy and solid, though he still isn't on par with his height and age but he's doing fab, apart from the past week or so his mucousy choking episodes are back though he's not refluxing so we're not concerned about the nissen, but again no1 seems concerned sooooo........
Can't believe Lewis will be 1 in two months time, that's so scary, where has the past year gone and look how far he's came :)
So i'm not happy but what can i do, he's been the diaphragm clininc only once already which was in february, the month after he was discharged from NICU and we haven't seen his lungs or had his chest listened to or his diaphragm checked out since, not impressed.
Oh and he passed his hearing screening today, i knew he would though :)
He's still not eating either, in fact i think the situation is getting worse, he only has to touch some foods and he's gagging and retching at them nevermind if it actually touches his lips, this is so frustrating, he's just not interested in food, he WILL put anything in his mouth as long as it's not food. I'm just at a loss with this now, i have no idea what to do or try next and SALT is no use either, so what now?
Lewis has been gaining weight recently, yesterday was the latest weigh in, he has put on 5oz in one week, how fab, that's the most weight he's ever gained in a week, sometimes didn't even gain that in a month, but can feel the difference in him now he feels so heavy and solid, though he still isn't on par with his height and age but he's doing fab, apart from the past week or so his mucousy choking episodes are back though he's not refluxing so we're not concerned about the nissen, but again no1 seems concerned sooooo........
Can't believe Lewis will be 1 in two months time, that's so scary, where has the past year gone and look how far he's came :)
Monday, 30 August 2010
2 top teeth :)
just a quick update
well the other top tooth made an appearance the day after the 1st one and he has now discovered how to grind his teeth eeewwwww i hate it it's horrible and i have no idea how to make him stop it :s
he's still not eating either, can't believe he was doing so well just after he got out of hospital as well then went right back to not wanting anything near him, SALT women said on thursday that she doesn't have anymore suggestions, can these people really be sooo rubbish? i mean they've only ever gave us 1 suggestion, and just repeated it every month when they've came out and now say they don't have anymore suggestions, wtf? there HAS to be more? ah well back to google for me :s she doesn't agree with giving him lots of different flavours, but health visitor seems to be in a bit of a disagreemenbt with her, SALT wants us to only give lewis baby rice and porridge, he doesn't like either has never shown an interest in it, my opinion is he needs to experience lots of different flavours (and hope he discovers somethin he likes) and also lots of different textures, who knows, she did say we could be looking at him going to school and seeing other kids eat before he does, yeh she's very optimistic...NOT, so looks like i'm on my own again with this.
well the feeding pump is going great, what a difference, he's only tolerating 65 mils an hour over 8 hours and has breakfast, lunch and dinner times (to play with food seeing as he won't eat it) at the same times as us then we do his bolus feeds, we would like him to be on more throught the night so we can reduce the amounts he gets at his bolus feeds during the day and hopefully he can get hungry and experience that and learn that food stops the hunger, well we live in hope something will work and i figured the best place to start would be to have him getting hungry.
so that's about it for now, he has his post op checkup on wednesday and hoping we can persuade them to do his CDH checks while we're there as they haven't been done since february!!! just be nice to see how his lungs are doing.
well the other top tooth made an appearance the day after the 1st one and he has now discovered how to grind his teeth eeewwwww i hate it it's horrible and i have no idea how to make him stop it :s
he's still not eating either, can't believe he was doing so well just after he got out of hospital as well then went right back to not wanting anything near him, SALT women said on thursday that she doesn't have anymore suggestions, can these people really be sooo rubbish? i mean they've only ever gave us 1 suggestion, and just repeated it every month when they've came out and now say they don't have anymore suggestions, wtf? there HAS to be more? ah well back to google for me :s she doesn't agree with giving him lots of different flavours, but health visitor seems to be in a bit of a disagreemenbt with her, SALT wants us to only give lewis baby rice and porridge, he doesn't like either has never shown an interest in it, my opinion is he needs to experience lots of different flavours (and hope he discovers somethin he likes) and also lots of different textures, who knows, she did say we could be looking at him going to school and seeing other kids eat before he does, yeh she's very optimistic...NOT, so looks like i'm on my own again with this.
well the feeding pump is going great, what a difference, he's only tolerating 65 mils an hour over 8 hours and has breakfast, lunch and dinner times (to play with food seeing as he won't eat it) at the same times as us then we do his bolus feeds, we would like him to be on more throught the night so we can reduce the amounts he gets at his bolus feeds during the day and hopefully he can get hungry and experience that and learn that food stops the hunger, well we live in hope something will work and i figured the best place to start would be to have him getting hungry.
so that's about it for now, he has his post op checkup on wednesday and hoping we can persuade them to do his CDH checks while we're there as they haven't been done since february!!! just be nice to see how his lungs are doing.
Tuesday, 24 August 2010
Feeding Pump Bliss
well on Friday morning i took delivery of a nice shiny feeding pump and a box of giving sets :) then in the afternoon i had a visit from a man who trained me on using it, i will just say WHAT A HUGE DIFFERENCE this is making, had my 1st whole night sleep in forever and it's better for Lewis as well as before, with his tummy still tender he was waking up during the night as we fed him and he was crying etc but now as it goes in slowly over 8 hours he barely knows and so he's back to the way he was before his fundo, sleeping right through, we started off on friday night with 30 mils an hour then night night up to 40 then next 50 etc, last night he was on 60 mils an hour, therefore reducing the amount he needs through the day, so now he'd down to just 3 milk feeds through the day at proper meal times, breakfast, lunch and dinner, introducing him to the world of 'normal' feeding times, we'll slowly get up to so much through the night i'm not sure what the target is, so that he'll actually feel hungry through the day, which we hope may help in the learning to eat process, so he will eventually learn eating satisfies hunger, i'm so glad i pushed for this, it was all my idea just has taking some time to actually get it to happen and glad every1 is on side and agrees with my plan, let's just hope it works :)
Yesterday Lewis's top left tooth made a little appearance through the gum and i think in the next couple of days the 1 beside it will be through as well, if it isn't already this morning, i'll have a look when he gets up, i'm sure he has a couple coming on the bottom beside his front ones as well, but to be fair he's taking it all in his stride, it's not bothering him at all, a friend said this is because in comparison to everything he's been through already this is nothing, so true.
He wanted his bed earlier last night so bathed him a bit earlier and put him to bed and he's still sleeping now at 8.30am so had 13 hours so far, lazy bones :)
We were away meeting some fab SANDS ladies on saturday and the above picture is Lewis table licking lol so funny, weird how he'll lick and chew on everything except food!!
Monday, 16 August 2010
Back to Not Eating
so before Lewis was born i heard the phrase 'CDH is a rollercoaster' a lot, well isn't that just a huge understatement, just wish things could be easy for once, afer his wee spell of eating everything, we thought that would be it, surely now he knows he can enjoy it he won't look back, WRONG!! he got my cold, he only got it mild but it was enough to put him off his food....he stopped eating and hasn't eaten since, he's not interested whatseover, back to going mad everytime you dare put somethin near him.
He's a bit more back to his old self now, so he's getting there slowly but surely
before we left the hospital we were told the community nurses would be out 2 days later, but nope they never came and that was nearly 3 weeks ago now, he also never gained any weight in a month, but we put that down to he was still being sick then he was in for his operation and he probably had put on weight but with all that he'd lost it again,
at the minute he's still quite uncomfy when he gets a lot of milk put down his tube, so we're sort of been bordering going back on 3 hourly feeds, but managing to JUST get by without doing that for now.
we're off on saturday morning to go meet some lovely ladies i met through SANDS just after losing Nathan, and we pick our new shiny car up on thursday can't wait :)
He's a bit more back to his old self now, so he's getting there slowly but surely
before we left the hospital we were told the community nurses would be out 2 days later, but nope they never came and that was nearly 3 weeks ago now, he also never gained any weight in a month, but we put that down to he was still being sick then he was in for his operation and he probably had put on weight but with all that he'd lost it again,
at the minute he's still quite uncomfy when he gets a lot of milk put down his tube, so we're sort of been bordering going back on 3 hourly feeds, but managing to JUST get by without doing that for now.
we're off on saturday morning to go meet some lovely ladies i met through SANDS just after losing Nathan, and we pick our new shiny car up on thursday can't wait :)
Friday, 6 August 2010
good stuff and bad stuff
well the good news is Lewis got home on the 28th July the bad is he's still been showing discomfort etc, he's miserable all the time and still has the runs poor wee thing, so he's being bothered by the top (teeth) middle (tummy) and bottom, he just moans all the time and randomly screams here and there, all through the night as well, just want to take him back and tell them to undo everything they done so i can have my happy smiley little boy back, hate seeing him upset and miserable all the time xx
we also have other good news on the Lewis front, since a week ago today he has been eating, and seems he just wants everything in sight, even though he's not eating very much he really goes for it when he does, and he's now decided he does like the little yoghurts after all and can devour half of 1 of the little pots, all this off a spoon as well, so suddenly and out the blue, he used to just go nuts whenever a spoon went near him or whenever food went near him, so thinking it was just a 1 off all week but he's eaten somethin everyday for a week, he's only taking like a teaspoon all in then he's knackered but it is hard work for him having to use muscles he's never really used before, so hopefully with some more practice every day he'll get better and start eating more.
Even more proud of him he's been through so much, he's just my little hero :0)
we also have other good news on the Lewis front, since a week ago today he has been eating, and seems he just wants everything in sight, even though he's not eating very much he really goes for it when he does, and he's now decided he does like the little yoghurts after all and can devour half of 1 of the little pots, all this off a spoon as well, so suddenly and out the blue, he used to just go nuts whenever a spoon went near him or whenever food went near him, so thinking it was just a 1 off all week but he's eaten somethin everyday for a week, he's only taking like a teaspoon all in then he's knackered but it is hard work for him having to use muscles he's never really used before, so hopefully with some more practice every day he'll get better and start eating more.
Even more proud of him he's been through so much, he's just my little hero :0)
Saturday, 24 July 2010
Feelin better today
lewis is much better today compared to yesterday, he's had the continuous morphine stopped but is still connected to it incase he needs a wee boost, they're stoppin his epidural tomoro as well, and today they've started givin him stuff through his new tube into his tummy just startin off with dioralite and i think tomoro they're startin to give him milk then we'll try and get his feeds built back up to what they were, got a wee smile off him last night which is the 1st since before his op and daddy got him a spongebob balloon from the wee shop seein as he's spongebobs biggest fan i don't know how he's managin without his daily fix lol xx slightly more smiles off him today which is great to see, he's still in some pain and specially when he tries to cough etc, can't wait for him to be over this and back home such a brave wee man xx
Friday, 23 July 2010
Lewis had his fundo yesterday
So he was away from us about 5 hours his consultant filmed his operation, he was pleased with how it went though they had to open him up as keyhole wasn't possible as his insides were just too stuck together, he managed to unstick everythin from his tummy but tore his spleen in the process but managed to stop the bleedin quickly, everythin will just stick bk together again, he was happy with how the fundo went but as he had to open his repair scar they couldn't give him the mickey button feedin tube so he's just got the peg
He had to go to high dependency unit after his op and was in a lot of pain when we got there, he was screamin so bad and his heart rate hit a very scary 220 it was just awful and heart breakin, he never cries he's always so happy, he had an epidural placed after his op so they had to give him a top up of that am upped his morphine and that settled him. As he was in high dependency i wasn't able to stay over with him so reluctantly i had to go home for the night.
When we got bk in this mornin lewis was looking much better, though i won't be happy until i get some of his usual smiles out of him, he got moved from high dependency to a normal ward this mornin, still on morphine and will have the epidural in till sunday then it has to come out and may have his morphine turned down a notch tomorrow
Thats pretty much it for just now he just has to rest and heal and we hav to get used to the new feedin tube and also the fact his scar from before is now longer as they had to open up his old repair scar and extend it a bit. He'll probably be in for another week and we have to work on buildin his feeds up as at the moment he's only gettin a little water every few hours. Will post a couple of pics xx the 1 in the shirt and tie was him on wednesday before we left for hospital, it was a rumour goin round the nurses about the cute smiley baby in the shirt and tie so they were all coming to see him when we arrived lol the other picture is lewis today xx
Saturday, 10 July 2010
Lazy bones
it's 10.10am and my gorgeous lazy bones is still asleep, normally we're up at 8 so he's slept an extra 2 hours, he was awake briefly while i was doing his feed lol he's allowed though he seems to have got a touch of his daddy's cold, it's not as bad as we first thought yesterday but it's still there, i'm feeling it myself, i just hope his doesn't develop and he can get rid of it soon, don't need this hanging over him in the run up to his fundo.
oooooohhhh Lewis has a new word for the last couple days it's....hiya :), he's got a great range of vocabulary for his age :)
the S+L women was here again on wednesday, she was supposed to do some observations of Lewis of the way he is around food etc, but nope never done it, was here like 15 minutes and left, she's lovely though, but i just don't feel like we're getting enough help with this therapy thing but i don't like to complain, so have decided to just wait it out till the end of the month till Lewis gets his Gtube and when he's recovered etc we're going to try and come up with a plan of action, whether that involves S+L or not i don't know, will just have to wait and see if it actually becomes of any help to us or not.
it's been agonising for us to decide whether or not to go ahead with the fundo, the acid in his reflux is well controlled with medicines so he's not in any discomfort, he's ALWAYS happy and smily, so there's no obvious signs that he NEEDS to have the fundo done BUT we know he's aspirating badly, which is dangerous, so on that basis this is why he needs the fundo, all the side effects from it though are what scare me, it could make him miserable and suffer in various ways and we don't want it for that reason, but ultimately it boils down to the aspiration, knowing just how serious that is in that it could be fatal, so Lewis will have his fundo on the 22nd july, to any1 reading this i'd be grateful if you caould send lewis lots of good vibes for a quick recovery and minimum side effects from it :s
while we're there, once he gets his Gtube and we get to speak with the dietician i'm going to see if we can get a feeding pump for the night time, i'd like to try and give him most of his daily calories throughout the night, so that he can be free during the day to actually feel a hunger and gives him the chance to 'eat' just hope they agree, at the moment he's fed every 4 hours, he's getting packed full every 4 hours, he doesn't know what hunger is, never has
oooooohhhh Lewis has a new word for the last couple days it's....hiya :), he's got a great range of vocabulary for his age :)
the S+L women was here again on wednesday, she was supposed to do some observations of Lewis of the way he is around food etc, but nope never done it, was here like 15 minutes and left, she's lovely though, but i just don't feel like we're getting enough help with this therapy thing but i don't like to complain, so have decided to just wait it out till the end of the month till Lewis gets his Gtube and when he's recovered etc we're going to try and come up with a plan of action, whether that involves S+L or not i don't know, will just have to wait and see if it actually becomes of any help to us or not.
it's been agonising for us to decide whether or not to go ahead with the fundo, the acid in his reflux is well controlled with medicines so he's not in any discomfort, he's ALWAYS happy and smily, so there's no obvious signs that he NEEDS to have the fundo done BUT we know he's aspirating badly, which is dangerous, so on that basis this is why he needs the fundo, all the side effects from it though are what scare me, it could make him miserable and suffer in various ways and we don't want it for that reason, but ultimately it boils down to the aspiration, knowing just how serious that is in that it could be fatal, so Lewis will have his fundo on the 22nd july, to any1 reading this i'd be grateful if you caould send lewis lots of good vibes for a quick recovery and minimum side effects from it :s
while we're there, once he gets his Gtube and we get to speak with the dietician i'm going to see if we can get a feeding pump for the night time, i'd like to try and give him most of his daily calories throughout the night, so that he can be free during the day to actually feel a hunger and gives him the chance to 'eat' just hope they agree, at the moment he's fed every 4 hours, he's getting packed full every 4 hours, he doesn't know what hunger is, never has
Tuesday, 6 July 2010
Tummy Time
yay looks like we've had a wee breakthrough, he's currently lying asleep.....on his tummy, on the floor, he can roll over and back again, has been for months now but he hates the pressure on his tummy so he hates being on his tummy, so he won't just lie there on it, so this is huge, i presume it's to do with the fact that his tummy is all odd shaped due to his prgans being put back in and nothing's in the exact right place making it weird shaped, so it really must be uncomfy for him to be on it, he was quite happy lying there for a while watching kerrang before he fell asleep lol
Nothing much else to update on really, still happy getting his teeth brushed, happy and confident sitting up by himself for a while now, still being a typical CDH eater, S+L women due back out tomorrow so i'm setting myself up to be disappointed again when she leaves, ah well. 15 days till we go back in Yorkhill, meaning 16 days till Lewis's fundo operation and till he gets his Gtube, glad to know they got him a bed in the NICU stepdown ward where he was just before he got home for the 1st time, familiar territory for an unknown length stay.
Oh and Lewis now has his own Facebook page if any1 wants to add him, Lewis Boyd, or search SunshineWarriorLewis@gmail.com
Ps i've added a video below this post, Lewis all excited and licking his tray lol
Nothing much else to update on really, still happy getting his teeth brushed, happy and confident sitting up by himself for a while now, still being a typical CDH eater, S+L women due back out tomorrow so i'm setting myself up to be disappointed again when she leaves, ah well. 15 days till we go back in Yorkhill, meaning 16 days till Lewis's fundo operation and till he gets his Gtube, glad to know they got him a bed in the NICU stepdown ward where he was just before he got home for the 1st time, familiar territory for an unknown length stay.
Oh and Lewis now has his own Facebook page if any1 wants to add him, Lewis Boyd, or search SunshineWarriorLewis@gmail.com
Ps i've added a video below this post, Lewis all excited and licking his tray lol
Friday, 2 July 2010
hospital confirmation
got the letter confirming Lewis's hospital stay, and 'pleased' to say he'll be having his stay back in 3b, which is like the NICU stepdown ward. he was in there just before he came home, last stay he had in May we were in ward 4, i didn't like that much, hopefully this time it means we'll get a wee room rather than a pull down bed in the shared ward where you're not allowed to shut the curtains round the bed and have to listen to the other parents staying over snoring all night, not sure how long he'll be in it just depends on whether they can do his operation by keyhole but to be honest i think we and them will be surprised if they can do it by keyhole.
The mor i think about this fundo the more i'm unsure, like really really unsure, but Ricky says it's best for Lewis, the hospital says it's best for Lewis, in fact every1 says it's best for Lewis, every1 except me, but guess i'll just have to be quiet, hopefully we'll get to see his consultant beforehand and i can express my fears to him (i have a lot of concerns regarding the fundo), i am however looking forward to getting the Gtube, my baby will look even more beautiful without the nasty tube stuck to his face all the time, and it also means that no1 will ever know there's anything wrong with him and the stares and ignorant whispers can stop, would rather people just ask but they won't, i mean it's worse if we're out and we're feeding him, people stare, how would they like it if i sat and stared at them while they were getting their dinner.
The mor i think about this fundo the more i'm unsure, like really really unsure, but Ricky says it's best for Lewis, the hospital says it's best for Lewis, in fact every1 says it's best for Lewis, every1 except me, but guess i'll just have to be quiet, hopefully we'll get to see his consultant beforehand and i can express my fears to him (i have a lot of concerns regarding the fundo), i am however looking forward to getting the Gtube, my baby will look even more beautiful without the nasty tube stuck to his face all the time, and it also means that no1 will ever know there's anything wrong with him and the stares and ignorant whispers can stop, would rather people just ask but they won't, i mean it's worse if we're out and we're feeding him, people stare, how would they like it if i sat and stared at them while they were getting their dinner.
Saturday, 26 June 2010
mum, dadda, babba
can't believe i forgot to blog about this and can't even remember if i blogged about Lewis saying mum, anyway, couple months at least he's been shouting mum, it started off as mumumum then got more clear as mum, usually only when he got himself upset which was rarely ever, but then started saying it more and more, i must check the archives to see if i've blogged about it, if not i can't believe it lol
Since Thursday he's been saying dadda, and babba and even was repeating me, i'd say dadda, he'd say dadda, i'd say babba he'd say babba, sometimes he sounds like he's saying abaddad 'a bad dad' which is so weird because when Ricky teases him either him or i will say aww you've got 'a bad dad' maybe just coincidence but usually when people meet him they always say, he's been here before, and the comments about how advanced he is, which is just a miracle in itself coinsidering his 2 month bad start to life, we were always told he'd be delayed, but he certainly is not.
He's our sunshine warrior Lewis, a little part of me and Ricky, also a little part of Nathan and Rainbow, i'm so proud of them all xxx
Since Thursday he's been saying dadda, and babba and even was repeating me, i'd say dadda, he'd say dadda, i'd say babba he'd say babba, sometimes he sounds like he's saying abaddad 'a bad dad' which is so weird because when Ricky teases him either him or i will say aww you've got 'a bad dad' maybe just coincidence but usually when people meet him they always say, he's been here before, and the comments about how advanced he is, which is just a miracle in itself coinsidering his 2 month bad start to life, we were always told he'd be delayed, but he certainly is not.
He's our sunshine warrior Lewis, a little part of me and Ricky, also a little part of Nathan and Rainbow, i'm so proud of them all xxx
Friday, 25 June 2010
Operation Date and Dentist
firstly, had a call from Lewis's consultant's secretary this afternoon with a date for the fundo and he'll be having his Gtube fitted at the same time, so we've to take him in for 2pm on the 21st July and he'll go to theatre the morning the 22nd, mixture of feelings for me at the minute but mostly i guess i'm scared, i can't bear the thought of them wheeling him away from me again, or even going into theatre with him and staying with him till he's 'out' and it's less than a month away :( really hope they'll be able to do it keyhole, but when we were there in May the consultant said it's common for them not to be able to do it keyhole because he's been operated on there before things can be really stuck together inside so should be prepared for having to open him back up, just really hope so much they can do it keyhole, it'll be less stress for him and a quicker recovery.
On the plus side of it all i'm 'looking forward' to him finally being able to get rid of the NG tube, it'll be so weird seeing him for the 1st time in 8 months with a completely clear face, am just feeling abit 'phobic' of this feeding tube through his tummy, what if he pulls at it or it falls out or something, ugh gives me the willies thinking about it, will be so much better for him finally having the feeding tube out of his nose and throat, it must be so horrible having that there, i can only omagine, but i did ask Ricky months ago to let me pass a tube on him and i'd feed him thickened coffee through it so he could tell me what it's like but he refused lol.
Anyway as for the dentist, Lewis had his 1st visit to the dentist today, he was his usual smiling away, oh by the way, it took me 2 hours to go round our local supermarket today because of Lewis smiling and waving at every1 so of course they all just had to stop me, anyway dentist isn't too worried about his teeth at the moment as he isn't taking anything official orally, but like me bit worried about the reflux but we'll just wait and see what happens after the fundo operation.
we're so lucky to have him here with us. i really can't say it enough, he's just brought so much 'sunshine' back into our lives, he really is such a great baby, he just makes it all so worth it, even all the washing and ironing lol just wish he could have it a bit easier, or better still i wish i could go right back and go through it all for him xxx
On the plus side of it all i'm 'looking forward' to him finally being able to get rid of the NG tube, it'll be so weird seeing him for the 1st time in 8 months with a completely clear face, am just feeling abit 'phobic' of this feeding tube through his tummy, what if he pulls at it or it falls out or something, ugh gives me the willies thinking about it, will be so much better for him finally having the feeding tube out of his nose and throat, it must be so horrible having that there, i can only omagine, but i did ask Ricky months ago to let me pass a tube on him and i'd feed him thickened coffee through it so he could tell me what it's like but he refused lol.
Anyway as for the dentist, Lewis had his 1st visit to the dentist today, he was his usual smiling away, oh by the way, it took me 2 hours to go round our local supermarket today because of Lewis smiling and waving at every1 so of course they all just had to stop me, anyway dentist isn't too worried about his teeth at the moment as he isn't taking anything official orally, but like me bit worried about the reflux but we'll just wait and see what happens after the fundo operation.
we're so lucky to have him here with us. i really can't say it enough, he's just brought so much 'sunshine' back into our lives, he really is such a great baby, he just makes it all so worth it, even all the washing and ironing lol just wish he could have it a bit easier, or better still i wish i could go right back and go through it all for him xxx
Wednesday, 23 June 2010
good weight gain
we had Lewis weighed today, 1st time in a month, he has gained 1lb 6oz in that time which as most of you will know is HUGE for a CDH'er, it's also pushed him up to the next percentile yay, health visitor is very happy with him, commenting on how advanced he is as well which is great as we thought it was just us who thought that lol,
so the only downfall with the weight gain is that hes halfway into the next KG which means he needs his calories intake upped quite a bit, which is bad news because he won't tolerate so much and so we're going to end up with the mega bad reflux again, therefore weight loss, argh i've found my own way of controlling his reflux with the way he gets his feeds etc, just don't know what i'm going to do now, he's already on as much as he can tolerate and without going back to THREE HOURLY feeds i can't see another way at the minute, wish the date for his nissen fundo would hurry up and come through we've been waiting nearly 2 months :s
so the only downfall with the weight gain is that hes halfway into the next KG which means he needs his calories intake upped quite a bit, which is bad news because he won't tolerate so much and so we're going to end up with the mega bad reflux again, therefore weight loss, argh i've found my own way of controlling his reflux with the way he gets his feeds etc, just don't know what i'm going to do now, he's already on as much as he can tolerate and without going back to THREE HOURLY feeds i can't see another way at the minute, wish the date for his nissen fundo would hurry up and come through we've been waiting nearly 2 months :s
Friday, 18 June 2010
toothy peg number 2
Lewis has another tooth, exactly 1 weeks after the 1st broke through, the 2nd broke through this morning, again it hasn't bothered him, a little grumpy on and off during the night but he never actually woke up, was just having little whinges in his sleep, sucha brave wee man, i know how sore it was when my wisdom teeth came through xx
we're still on 4 hourly feeds but he's tolerating this rather well, with his break half way through, we tried increasing him again to get him to 5 hourly but he wasn't tolerating that, but he done better with it this time than last time, remember we ended up back to square 1 on 3 hourlies lol, so hopefully before long we'll get there.
He's still enjoying sitting in his high chair or his bumbo seat for meal times, playing around with food, sometimes but rarely he'll try and eat it, mostly just plays in it and then rubs it all over his face (pics at the end lol) but this is more than he used to do so it's progress at his own pace, he doesn't like things that are pureed to be very very smooth, he prefers things that are not lumpy, but gritty if that makes sense, them's the things he's more likely to put near his mouth but he still prefers the finger foods, like biscuits etc pity we can't make meals into biscuits lol, but still no calories by mouth but hopefully like everything else we'll get there in the end even though i know we're in for a tough few years at least lol
do these kids ever grow out of the feeding problems/aversions?
anyway here's some pics :)
this is him EATING
we're still on 4 hourly feeds but he's tolerating this rather well, with his break half way through, we tried increasing him again to get him to 5 hourly but he wasn't tolerating that, but he done better with it this time than last time, remember we ended up back to square 1 on 3 hourlies lol, so hopefully before long we'll get there.
He's still enjoying sitting in his high chair or his bumbo seat for meal times, playing around with food, sometimes but rarely he'll try and eat it, mostly just plays in it and then rubs it all over his face (pics at the end lol) but this is more than he used to do so it's progress at his own pace, he doesn't like things that are pureed to be very very smooth, he prefers things that are not lumpy, but gritty if that makes sense, them's the things he's more likely to put near his mouth but he still prefers the finger foods, like biscuits etc pity we can't make meals into biscuits lol, but still no calories by mouth but hopefully like everything else we'll get there in the end even though i know we're in for a tough few years at least lol
do these kids ever grow out of the feeding problems/aversions?
anyway here's some pics :)
this is him EATING
Wednesday, 16 June 2010
What a Year
It'll be a year on the 29th June since i started this blog, meaning it's been a year since we found out our 'dream number 3' had CDH,
it all started on the 10th june 2009, blood test results came back high risk for downs syndrome, not a problem we can handle that, the worry was waiting for the heart scan to see if baby had the same heart problems that Nathan had, the worry of downs syndrome with the link of heart problems,
12th june we had the heart scan, can still hear the consultant clear as day as if it was yesterday, he 'thinks' he can see the 4 chambers, what a relief, then bang the BUT, i can still feel my heart stop when that BUT came, what now, then the brief explanation of the stomach being in the chest, the heart bein squashed and pushed to the side, the lungs etc etc, the only thing going through my mind was that we were going to lose this baby too, it was already a hard pregnancy to this point, after losing 2 already, but now, how the heck would we ever get through the next few months knowing only that it's 50-50.
I wish we could have seen into the future, seen just a year ahead, seen our beautiful wee boy with his very happy nature, smiling and laughing away at us, breathing all by himself, sailing through his intensive care days, we know how lucky he is to have made it through this horrible defect, we know how lucky we are that we got to bring our 3rd baby home, he's such a joy honestly no bother at all, never cries or complains about anything, yes it's been 1 hell of a long hard road but it's been worth every step, still is hard with the whole oral aversions, mega bad reflux, etc but we'll get there, he's thriving and looks such a wee chunky monkey, legs like tree trunks, i just can't believe how far we've came, everything we've been through in the last year have no idea how we done it had to i guess and having an amazing sands friend (leigh) there every step, listening to me, terrified Lewis wouldnt make it, sharing my cravings lol getting me through every day, keeping me laughing etc etc well that helped xx
don't know what else to say really, it's quite hard thinking about all that again, just so thankful to our angels for helping their brother come home
What a year!!!
it all started on the 10th june 2009, blood test results came back high risk for downs syndrome, not a problem we can handle that, the worry was waiting for the heart scan to see if baby had the same heart problems that Nathan had, the worry of downs syndrome with the link of heart problems,
12th june we had the heart scan, can still hear the consultant clear as day as if it was yesterday, he 'thinks' he can see the 4 chambers, what a relief, then bang the BUT, i can still feel my heart stop when that BUT came, what now, then the brief explanation of the stomach being in the chest, the heart bein squashed and pushed to the side, the lungs etc etc, the only thing going through my mind was that we were going to lose this baby too, it was already a hard pregnancy to this point, after losing 2 already, but now, how the heck would we ever get through the next few months knowing only that it's 50-50.
I wish we could have seen into the future, seen just a year ahead, seen our beautiful wee boy with his very happy nature, smiling and laughing away at us, breathing all by himself, sailing through his intensive care days, we know how lucky he is to have made it through this horrible defect, we know how lucky we are that we got to bring our 3rd baby home, he's such a joy honestly no bother at all, never cries or complains about anything, yes it's been 1 hell of a long hard road but it's been worth every step, still is hard with the whole oral aversions, mega bad reflux, etc but we'll get there, he's thriving and looks such a wee chunky monkey, legs like tree trunks, i just can't believe how far we've came, everything we've been through in the last year have no idea how we done it had to i guess and having an amazing sands friend (leigh) there every step, listening to me, terrified Lewis wouldnt make it, sharing my cravings lol getting me through every day, keeping me laughing etc etc well that helped xx
don't know what else to say really, it's quite hard thinking about all that again, just so thankful to our angels for helping their brother come home
What a year!!!
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