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

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!!!

Speech and Language at last

well yesterday the lovely lady from the speech and language team came out, i know it sounds confusing saying speech and language when it's not for any of them she comes, it's for the oral aversion/feeding issues, but tbh i'm so disappointed, we've waited 5 months for her coming, in that time i've done so much of my own research, found lots of our own things to try etc, she comes in, tells me everything i know already, tells me to try things we're trying already, tells me we need to cut a night feed, when i was 90% percent back to that already, then says she'll be back in 3 and a bit weeks and we'll do some food play, which we do all the time anyway, then she leaves, ok so what was the point in that, so disappointed, i've just been hanging on for this and for what, for nothing that's what, so what now :( back to feeling stuck at the same point and not seeming to progress, see if i can research some more and find some more things on it i guess, just thought they'd come in maybe once every week or 2 and work a LOT with us in order to actually progress but i guess not so what's the point, maybe i'd be just as well saying forget it and don't come back.

Anyway Lewis's wee tooth is looking mega cute and is coming in more everyday, the child smile women's been in and gave him toothpaste and a toothbrush, though he's got 1 but that was for more of a sensory thing before he got his tooth, and he's actually let me brush his tooth now which is great, he's not eating anything but he is refluxing so just wory about the acid in that getting to his teeth, just wish the appointment for the fundo would hurry up and come through.

We've been to the yearly SANDS balloon release today to put tags on balloons for Nathan and watch the balloons getting released, it' obviously Lewis's 1st one, we didn't make the 1 last year as i had the amnio the day before so was laid up the whole weekend, lovely and emotional as always and Lewis met some of him very fabby SAND's aunties who all think he's just adorable (obviously) lol but great seeing Lewis meeting them, i've known them since we lost Nathan and they all were rooting for him to get through the CDH etc, and he just loved them too, specially their necklaces eek lol just brilliant though :)

Really need to pull my finger out sorting things on the blog out, really want to take down the slideshows that are up and replace them with some other pics, just can't get the time but i'm not complaining, plus i'm so forgetful but that's baby brain and lack of sleep so defo not complaining on that either, lucky Lewis still sleeps through every night lol xx

*****have now done the slideshows at last woohoo, i've never sat down n went through all his pics from birth till now, until tonight, going through them sorting the ones i wanted for the slideshows, just amazing seeing him from day 1 till now, he's car sooooo far in his 7 months, keep saying it but i couldn't be prouder of my gorgeous  Sunshine Warrior*****

Suprise tooth :)

well about half an hour ago we were just wandering around the supermarket, me and Lewis playing our wee game or RrRrRrAaAaAaAaRrRrRrRr i do Raaaaar at him n he does it back lol and anyways i noticed something on his gum, hmm what's that? Ricky had a look tried to 'wipe' off whatever it was hmmm it's a tooth YAY Lewis has his 1st tooth at 29 weeks and 1 day old, he hasn't cried or anything with teething all the signs he's had is red cheeks, that's it, no grumping or anything, such a brave wee soldier, so cue phone calls and texts getting sent out round the shop lol, have been trying so hard since we got back to get a picture for the blog but he's not having any of it, trying to grab the camera and keeps his tongue on the tooth licking it lol

my favourite ever scan picture

just been looking through lewis's pictures from before he was born (and there's a LOT lol) anyway came across my favourite scan picture and wanted to share it, it's always been said it looks as though there's 2 babies in it, 1 is obviously Lewis but just above him looks like another and looks like Lewis is really looking at it amazed anyway, anyway i'll post it the way it is with lewis lookin up at it and then i'll turn it round maybe easier to see that way xx (i'll be uploading some other pictures later, there's a few i want to share so i think i'd be better making them into a slideshow rather than just filling the whole page(s) with loads of pictures lol)

i think it may just be Nathan watching over his brother :)

first ever weight loss

so last wednesday we had Lewis weighed and he'd lost half a lb, this is the 1st time he's ever lost weight, even when he was 1st born he never lost the usual 10% of body weight, he stayed the same weight to start with then just kept gaining, the health visitor says it's probably gone to his height, yet she never measured him, but to be honest she's probably right, he still looks like a wee chumbawumba and i think he's doin better weight wise than a lot of CDH kids and he IS on the charts which is good, but i know the hospital won't be happy etc even though we are, but anyway onto good news,
we've managed to get Lewis back onto 4 hourly feeds, it takes about hour to feed him his 150mils, in 2 halfs with a half hour break between but still better than 3 hourly, this time thought i'll be in no hurry to try and push him into taking more mils during the day so we can cut a night feed, i don't mind getting up in the night, to me we've managed to cut a feed byt getting to 4 hourly anyway which is great, 6 n half months old and 3 hourly feeds isn't good lol he's thriving, he's fair filling out and is happy as larry as usual, so if my son's happy then i'm happy :) oh and we've decided to switch to baby led weaning for lewis he's happier feeding himself he won't take anything i offer to feed him with.
he's currently shouting and beating lumps out of his jumperoo so i'm away to rescue the toy and get cuddles off my hero :)

Gone backwards with feeds

so silly me, 4 hourly was going so well that i decided to try and 'push' him into taking a bit more at each feed so we could cut a night feed, nope didn't happen, not only was he refluxing soooo bad, but when i put the amounts back down to bring the night feed back, he wasn't tolerating that either, he was still refluxing so bad, feel sooo bad trying to push him like that and now he's showed me by having to go back to constant 3 hourly (nights as well) when he was doing so well on 4 hourly, 

ah well that's the thing with this rollercoaster. trial and error, we won't know how far he'll go until we try, but at least we know he WAS ok on 4 hourly so just need to let him recover and get him back onto it and at least now we know he can't tolerate anymore than that so know not to do it again for a while lol. so back on the 3 hourly and he's doing great, generally he's keeping 3 feeds in a row down, then having a little reflux at the next 1, unless the congestion kicks in then it's not 'reflux' it's thick mucousy secretions.

He still won't eat from a spoon, and i feel limited as to what 'finger foods' we can give him, can't be too sugary, too salty, crumbly where big lumps drop off as he won't swallow that, but yet these are the only type of things we can seem to find, apparently our referral for speech and language got sent somewhere else, but now it's been re referred to the right place, so hopefully we will hear from them really soon, i think having them involved with their expertise will be really helpful to us so just trying to hold on and scrape by till then. 

most 6 months old babies are only just starting to spoon feed, Lewis can feed himself lol it's just a case of finding the right things he can have because of the issues he has with eating and swallowing, but it's a start in the right direction, not so long ago he wouldn't even let us so much as touch as his mouth, never mind put anything in it.

anyway onto the brilliant weather the last couple of days, we went and bought Lewis some cute shorts and t shirts and some hats, need to get some more pics to put up lol.

15/05/10 at OneTrueMedia.com

Cheeky Wee Monkey

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Oh my, he was EATING, well sort of :)

Yesterday, I gave Lewis a gingernut biscuit to 'play' with, but he decided he wanted to lick it, a few more licks and facial expressions later, i gave him a piece of chocolate, yep he was licking that too, so bit later, strapped in his hi-lo chair HE LET ME put banana to his mouth, he licked it a lot, and then HE CHEWED ON IT, and he kept chewing on it, i had to scoop the bits of banana out his mouth as he still won't swallow but YAY my little man at 6 months old yesterday CHEWED on some food, he still won't take a bottle or cup or anything and still won't swallow anything, but even just letting food near his mouth or anything near his mouth is HUGE for us WAY TO GO SUNSHINE WARRIOR LEWIS, sooooo proud of my little man.

Another big thing is we decided to try Lewis on 4 hourly feeds, while still on 3 hourly we found he kept it down better if we gave him half then the other half up to half an hour later, so thought hmm well let's try this with 4 hourly amounts n so we give him half, then thought we'd start with the other half, half an hour after the 1st half n if that didn't work we'd increase the times between the 2 halfs to 45 minutes n so on, and pleased to say that with HALF AN HOUR between halfs of his feeds, yesterday he had TWO vomits, but only little mouthfuls both times within 10 minutes of each other, this is excellent, TWO tiny vomits in a whole day on 4 hourly feeds, till this morning anyway he had quite a big vomit but it was actually mostly the snotty mucousy stuff, i always find him really sicky and mucousy in the mornings anyway.

Sooo all we need to do now is work on the swallowing issues, though i don't know what to do or try for that :s but it's all part of this CDH rollercoaster thing, but here's to hoping we have many more licked biscuits n chewed on banans :)

Can't believe my little man is 6 months old, this time last year we were early pregnant and didn't know about the CDH yet, absolutely terrified the baby would have the same heart problems our Nathan did etc and now look at him he's just sooo amazing we treasure every single day our litlle Sunshine Warrior, our wee miracle :)

Just waiting around for dates now for the fundoplication and G tube ops, hopefully be soon and we can get rid of this nasty problem causing NG tube.

Going to post the biscuit licking video and the banana licking and chewing video, need to sort out the blog n get some pics in slideshows or something, it's just getting the time :s

Update from hospital

ok so we went into hospital on wednesday (5th) for PH study, we got out on the thursday, a day early as the PH study was done at 3.30pm and they managed to squeeze Lewis into xray at 4.10pm for the contrast study, the results of the PH study take a few days so we don't know anything about that yet, but from the contrast study in xray it was clear to see how bad his reflux is, they hadn't even put like 10 mils of the stuff down his tube but it came straight back up, the doctor said she was very very surprised at just how quickly it came back up, so we were in and out of xray in like 5 minutes as they then had everything they needed.

We had requested a chat with Lewis's consultant and after waiting all day to see him as he was busy in and out of theatre, he came along to see us, he'd seen the results from xray and then went on to tell us Lewis needed 2 things done, 1st he needs the fundoplication operation, i really hoped he wouldn't need it, but after the consultant explained about Lewis's reflux being so bad and the consequences of the damage the acid does and will continue to do over time, we decided to go ahead with the fundoplication, it's the best thing for Lewis and for his insides and also for the future of his insides, the 2nd thing he said was he need to have the Gtube fitted, i was going to ask about this but he beat me to it, so i'm 'pleased' he knew he needed this too, i really think, well hope, that this is a way forward in our efforts to get Lewis eating, we know it'll still take time but least he won't have the NG tube irritating him all the time.

So that's about it, we just have to 'wait' on Lewis's turn coming round but least we know his name is on the list. I'm glad we didn't have to stay in 2 nights though, i hadn't slept much the night before we went in as Lewis was being bothered by congestion all night, then the night in the hospital was just awful, he was on a ward in a 6 bed bay and i slept on the cotside bed they have, on an open ward as wasn't allowed to shut the curtains round, so no privacy, and poor little kids and babies crying and screaming all night, Lewis slept soundly all night as usual lol.

Roll Over/Hospital and New Blog Header

So Lewis finally rolled over from his back to his front, he's been rolling around a while now but was comfy just lying on his side n if he got to close to being on his tummy he didn't like it and flipped right over again onto his back, but on Saturday (1st May lol) he was lying on our bed we were playing with him and he done his usual onto his side but then he kept himself going, right onto his tummy, so proud of him actually letting himself do it even though he hates being on his tummy and he was quite happy lying there on it for a good 5 minutes, well done my wee sunshine warrior Lewis, sooooo proud of you and how far you've come in your (nearly) 6 months lol, can't believe he's nearly 6 months, where's the time gone :s

Tomorrow (5th May) Lewis goes back into yorkhill for a PH study and a Contrast Study, i'm hoping things won't be so bad they'll want to do the Nissen (fundoplication) can't bear the thought of another operation like that for him but i guess if it'll help him then i'm all for it, i also want to discuss while we're there about the possibility of fitting him with a G tube so we can get rid of the NG tube, i think that may be the cause for the problems he has an hopefully a way forward with learning him to eat, can't stand the thought of the G tube getting fitted or just being there either but again if it's going to help him make steps forward with oral eating then i'm all for it.

Check out Lewis's new Blog Header, i threw it together last night, wanted to keep the same colours etc so just changed them round a bit, also put his photo on it from the night he was born (12th November 2009) and then 1 from just the other day (1st May) what a difference in him he's came so far has my little man.

We also took a wee trip last week just an hour n halfs drive to meet some wonderful ladies who i met through SANDS after losing Nathan, they were so pleased to see Lewis for the 1st time and he was so well behaved as always, he's a a right ladies man is Lewis, giving out kisses within 5 minutes, that day we discovered Lewis likes metal spoons, we were out for lunch and mummy was being naughty having pudding and Lewis was grabbing the sppon and pulling it to his mouth and was happy with it just sitting in his mouth, so out has gone the plastic spoons at home and in with the metal ones, which he does seem to prefer, but he preferred sucking sweet potato off my finger, which meant that he actually got some of it swallowed, he still won't suck a bottle though but know he can actually suck because he sucks his fingers all the time big loud sucking noises lol and then sucking food off my finger but he won't take it off the spoon metal or otherwise, he'll happily have the empty spoon in his mouth though, this whole CDH, eating issues, oral aversions thing is weird lol

can't seem to find the time

to sort out closing the blog, sorting out all the emails to give access to. think i may just have to leave it as it is, but try and provide a private place to link to for showing photos? that's if i can even get the time to sort out all the photos n slideshows etc, anyway just thought i'd throw in an update..

we have a date through for Lewis going back into hospital for reflux tests, 1 is called a PH test? have no idea what that involves, the other test i can't remember what was called?, can any1 tell me what these entail?
i'm not looking forward to going back there not after being home 3 months now, but i'm hoping we'll get to the bottom of some other issues as well, mainly the snotty issue though as he took such a bad snotty attack the other day i panicked so much he struggled so bad with it i'd hate to have seen his sats, then he managed to clear it by vomiting sooo much it got everywhere, poor wee man i hate seeing him like that it's awful seeing him struggling so much to breathe because of it and not being able to help him.

another issue we've figured is, Lewis won't swallow, maybe that's a lot of the snotty issue's problem, he chokes on it because he won't swallow it down. he must swallow a wee bit though because he's not drooling or anything so that must go down? i'm not sure why he won't swallow but in my search of the internet i keep coming across Dysphagia, does any1 have any experience of this with CDH kids? i juust don't feel like we can progress anywhere with oral feeding of any form as lonmg as he won't swallow, he just ends up breathing it in and then it goes down the wrong way and he chokes on it, it's the same with whatever you put in his mouth, such a shame for him struggling with something we do everyday without even thinking about it.

we're also still on 3 hourly feeds but have increased amount slightly only thing is he's only just on the verge between tolerating and not tolerating the amounts, what happens when he needs his amounts increased again, he won't handle even just an extra 5 mils, the only way would be to go 2 hourly and there's just absolutely no way that's possible, during the day yes i could do that, but during the night i just couldn't keep up with it, we only just manage at nights as it is and i don't think they'd give me a pump for night may be worth just asking though.

PLEASE THOUGH IF ANY1 OUT THERE HAS ANY EXPERIENCE OF SWALLOWING ISSUES PLEASE GET IN TOUCH

Hayley and Lewis xxx

last public update

i thought i'd close the blog from public with a last post (remember to email me if you'd still like to read it), Lewis is sitting here with me as i type whacking the keys, so think this will take a while lol, he's now 20 weeks and 3 days old and we've been home longer now than he was in the hospital and to be honest all that seems like a distant memory, it's only when we look at his photos that we're right back there by his bedside in NICU for 2 months watching him fight for his life not knowing what each day would bring, looking at him now, apart from the NG tube up his nose you wouldn't even know about his start to life.

well i think we may have missed the diaphragm clinic last month because they never bothered to send us an appointment, also haven't heard from speech and language therapy either and still haven't got to the bottom of the snotty problem,
so we're still on 3 hourly feeds which he's keeping down a lot better except when the snotty issues attack then he vomits lots of yukky sticky snot, he's also still refusing everything orally, when he does decide to take something in his mouth he sits with his look of disgust and refuses to swallow and so just ends up choking on it instead,

so having been abandoned by everyone, i have no idea what to do or try, so looks like we'll always be on 3 hourly tube feeds so annoyed by it all to be honest, as for the snotty problem we've been passed round in circles

apart from all that crap Lewis is well, no other CDH related issues for now so fingers crossed it stays like it.
He's still a very good wee boy, doesn't cry for anything he's always very smiley and laidback and sleeps through the night
It's sooo good to see him coming on and progressing, we bought him a jumperoo, expensive but sooo worth it he loves it and took him all of 5 minutes to figure out he had to jump in it so now he jumps like mad and can turn himself in the seat all the way around and i've had to order a lightweight stroller for him, we made a mistake when buying his pram, it's nice and all but it's so bulky and heavy and a nightmare if i'm on my own and trying to get it in and out of the car, it takes up the whole boot space, i don't think it was designed for car use so we'll just use it for going walks and things and keep the stroller in the car lol

nothing much else to report to be honest life is event free and that's the way we like it
but if anyone has ANY feeding tips whatsoever please email me i'll be forever grateful and i'm willing to try ANYTHING.

i'll finish up with some pics

Lewis the night he was born (his very 1st photo)

the day we brought him home

Superbaby, indeed he is

playing while supervising mummy doing the ironing

and more recently 2 of Lewis in his jumperoo (since had to rearrange the living room to make room for all his toys)

Closing the Blog

within the next week or 2 i'll be closing this blog, not completely, just putting it onto private, so if any1 REALLY wants to keep reading then do get in touch and i'll set up the emails so you can still access the blog.

thanks to all who have been reading since i started this and for comments and prayers etc when Lewis was 1st born, i'm so proud of our wee sunshine warrior xxx

Hayley xx

Save The Cherubs

CDH affects a
baby every 10 minutes. Over 600,000 babies since 2000 - killing
300,000. Please help us raise awareness and save the cherubs! http://www.savethecherubs.org

feeds and general update

i've became quite crap at updating the blog, but i'm sure you'll know how hectic life is having a baby around, i'm not complaining it's just the best thing ever, Leiws is just a wee doll, a dream come true :) 

we've changed his feeds to 3 hourly due to the fact that the dietician wanted his amounts upped in line wih his weight, the amount he was getting already was pushing his reflux over the edge, he was losing so much of his feeds all the time, so i knew no way he could tolerate getting even more all at 1 time, so i decided it had to be 3 hourly if he was to get the amounts upped and so far so good, he is actually getting slightly more than the dietician wanted him to have and although he still has a vomit after every feed during the day, it is'nt very much at all, the best bit though is that he keeps down 3 whole night feeds and only has a small mouthful after the 4th night feed, but last night he kept down all 4 yay go Lewis, we have been on the 3 hourly feeds for just over a week now, which leads me to his weight :s

a week ago he was in to get his 3 month jags with the health visitor n she weighed him for me while we were there, he weighed in at 12lb 6oz,

yesterday he was weighed again, he weighed 12lb 7oz,

so in a week he has put on 1oz :s not what i wanted to hear considering he's getting more of his high calorie milk in a day and actually keeping what i'd say 'most' of it down, so she measured his length and decided that he's had a spurt in height and this is where it's all went into his height spurt rather than his weight, i hope so and i really hope for a better weight gain when we go back in a fortnight, though i might just actually pop in next week and see.

So he's now gone from the 2nd percentile on his height to the 9th, and still on the 2nd percentile for his weight, health visitor is really happy with him though but i still worry, i guess it's only natural, she says the chart shows he's not just plodding along on the same percentile, he's actually climbing it, which shows he's doing well, just hope he catches up to the 9th percentile for his weight soon.

We've been testing out his taste buds for a few days now with some baby foods, i was worried that the fact he won't have anything to do with sucking a bottle would mean he probably wouldn't want anything to do with a spoon, but he lets it in his mouth and actually opens up for more, he only takes a tiny drop on the spoon at a time and only has a few of these before he gets bored, but it's a start and i'm just happy he's happy to experiment, so far he's had baby rice, i think it's too tasteless for him though, he quite likes banana porridge and fruit porridge and also likes cauliflower brocolli cheese, and just before he had some strawberry cheesecake, i think it might have been a bit too 'tart' for him, he prefers chocolate pudding :)

oh and he had his 2nd RSV jag on the 23rd february, due for the 3rd on the 23rd march though they say phone first because he may not not need it, not sure how they'll know over the phone whether he needs it or not :s

He also had a hearing test last week, the women came out to the house to do it, i think he was liking all the noises coming through the earphone things at him, he was all excited n everything, that meant she couldn't get an accurate test bacause he was so active flapping around, from what she did get though she thinks he may have some fluid behind his ears, we've been referred to somewhere else to get him retested when he's between 8 and 10 months old and they'll do different tests, where we'll actually be able to see him responding to noises etc rather than just put earphone things on him and let the sensors do the test.

here's some recent pics of my wee cutie

1st visit to the Diaphragm Clinic

yesterday was Lewis's 1st appointment at the Diaphragm clinic,  when we got there we were sent along for xray, Lewis was soooo good lying still and we were in and out in like 5 minutes, then we headed back to the clinic and went into see the physio people, they're happy with Lewis in that sense and said he's came on leaps since they last seen him before he was discharged from hospital, gave us some wee things to do with Lewis so he still gets to work the muscles in his mouth/face as he's refusing his oral feeds and we're getting referred to speech therapist near home to work on the feeds, but to be honest there's only 1 thing that needs to happen to get Lewis feeding again and that's to come off the yukky smelling and tasting high calorie milk but they won't do that,
next stop was into see the doctor, apparently Lewis is only just scraping by with weight gain and he was concerned at the amount of feeds in a day Lewis was bringing back up and the xray showed his right lung looks whiter than the left, he says that could be the reflux coming back on his lungs though sooooooo he wants Lewis admitted to the hospital for a couple of days to run tests on the reflux, to determine how bad it is etc and to see if the operation would benefit him, though he's not keen to do the operation, he would rather just wait it out and see if it gets any better as Lewis gets bigger and starts on solids etc but like he said, bringing back 5/6 out of 6 feeds in a day is not good.
he says we'll be looking at the beginning of March to be going in, great, last place i want to be over Nathan's 2nd birthday, we have plans for his birthday as well, will just have to wait and see what dates they send us out for it and go from there, just worried about his 'good' lung looking whiter than the 'bad' lung.

He really is just a wee treasure though, he's so precious to us after everything he went through to be here and moreso after Nathan etc,
i'll add some pics xx

Hayley + Sunshine Warrior, Lewis xx

Refusing feeds

well, seems like Lewis doesn't like the infatrini milk, the hospital put him on it for extra calories but he hates it, has refused EVERY oral feed, but then in my opinion it's more important for him to get the extra calories and put on the weight rather than being able to suck from a bottle, will be trying him with more solids soon but he doesn't seem to like the spoon in his mouth, though he quite likes the taste of baby rice and rusks
his reflux is pretty bad too poor wee thing, so i now have a nice big stock up on washing powder to keep up with all the washing of things he's covered in 'brought back up milk'

nothing else to update on really, have an appointment on the 19th at the diaphragm clinic and an appointment with the surgical paediatrician on the same day though i have no idea what that one is for, but hopefully will be nothing to report from those appointments because hopefully everything will be ok.

update

this will be quick, hard findin the time now but certainly not complainin, bein a 'proper' mummy is just the best thing in the world n Lewis certainly lives up to his nickname and is just a little ray of sunshine, he's just so content and smiley.

we both still have the cold though its very mild now and Lewis still has a wee cough, coughin up mucous, so it's makin him vomit quite a bit, horrible mucousy vomit, and this has put him off his feeds a bit so has gone back to a best of 30 mils orally,

we had an appointment back at the ward clinic today and seems Lewis hasn't put any weight on since last appointment 2 weeks ago, well he has it was only 1 ounce tho, he's 10lb 6oz today and was 10lb 5oz a fortnight ago, so they've changed his milk to infantrini? with more calories in it, great another thing can only get on prescription, for the doctors to mess up, he's been home 3 weeks now and we still arent totally sorted with everythin ugh
they sorted him out today for an RSV injection, was either hang round another hour odd and get it today or go back on wednesday so we just waited round, wanted it sooner rather than later, so he's to go back in 3 weeks for the next 1 n then another 2 weeks after that which he might miss because they stop doin them in march sometime.

on a brighter note Lewis is givin out kisses, it started with me smackin my lips at him sayin give mummy kisses, then he started smackin his lips back at me n holdin his mouth open for kisses, sometimes he's a wee tease though will do it and keep his mouth open till i get near then closes it n turns away laughin, it's just so cute and seems he saves them all for me, no1 else will get any not even Ricky, total mummys boy is Lewis.

nothin really much else to report on so i'l just leave some pics :)

check out his 'sunshine' tshirt :)

 

 

Colds :(

ugh so less than a week back home and me and Lewis have been hit with the cold, i don't get ill with things very often but when i do they hit me sooooo hard, really hoping Lewis hasn't been hit as bad as me with it cos i feel absolutely dreadful with it, his grumpiness suggests otherwise though, worry sooo much cos it's not like him to be grumpy or anything, he's always been so happy and content, anyway got some calpol n was reading the leaflet before i gave him any and apparently if he's on domperidone (which he is) then he can't have calpol without talking to doctor or pharmacist first, not what i wanted to read being it's sunday :s

hope some1 reads this today but any suggestions as to what he CAN have to help with his cold symptoms just to help him feeld that wee bit better, that agrees with meds he's on?

Apart from this he's been doing well, seems to have settled in nicely though me and Ricky still trying to work out a routine lol, he's been vomiting quite a bit and i have come to wonder if his milk formula has been upsetting his tummy as well, in hospital they used the ready made version of it and at home i was using the powder version, not sure whether it could be the carobel or gavison not mixing properly in it or something but it should'nt look curdled, and when i pull back on his NG tube it looks curdled there as well so it's sitting in his tummy like that, anyway decided that although it'l cost double, to buy the ready made version in the cartons, it mixes better with the carobel n gaviscon so will give it a few days and see if helps the vomiting a bit and runny poo.

Now onto the NG tube lol i'm learning slowly about it getting caught in everything, for example yesterday i lifted him out his bouncy chair thing only for the end of the tube to get caught in the side and pulled clean out oops, felt so bad cos i know he hates getting a new tube passed therefore screaming for the next 45 minutes, anyway i'l get there, just have to try and remember it's there lol

Nothing much else happening at the minute, he has an appointment back in the hospital on monday just a wee checkup and then has the diaphragm clinic in february, oh also the health visitor is going to arrange for us to have an open acces to our local hospital which is excellent and puts my mind at ease a bit knowing if i get worried about absolutely anything at all just to take him on in n he'll get seen straight away, not having to wait days on doctors appointments etc.
and on wednesday past he weighed in at 10lb 3oz

Oh and also would love some tips on medicines and the mixed oral and NG feeding thing for when i'm out, don't fancy takin like 6 bottles of meds out with me and then have to draw them up when i'm out etc etc is there another way? lol

Pics of Lewis on homecomin day

HOMEtime

well for the lack of updates it's been a hectic time specially last few days, nurses started mentioning home n said that 1st we'd have to learn to pass the NG tube 3 times each n i'd have to do rooming in for couple nights with lewis but basically that was the only thing stopping him going home, so saturday n sunday nights i stayed over with lewis, 1st night he slept from 9pm till 8am n next night 9pm till 7am. and we decided to leave his hands free hoping he'd pull out his tube a few times, a shame i know but small price to pay to get him home.

yesterday his consultant said he could go, tomorrow, so mad dash home for me to get things ready as we've been livin away for 9 weeks.

anyway to cut a long story very short SUNSHINE IS HOME on his 60th day :)

just a quick update as things bit hectic. gettin used to medicines n stuff blah blah he's home and i'm just over the moon
pics later xx

quick update and pics

not really much to update on apart from Lewis got an infection to do with his NG tube and as it's a type that the babies make themselves it cant be treated with antibiotics cos they don't work, so he's been moved into a separate cubicle for isolation, not complaining on that though cos he's not ill with it or anything and it's nice to have our own wee private space with him and while he's in the cubicle i can stay over a couple of nights if i want so hopefully tomorrow night i'll get to stay and spend my very first night with my baby boy, though he's not so much baby now he's lookin older and he's getting so big and he now weighs 9lb 8oz.

Yesterday Lewis had his very first bath, the nurse filled the bath up for him and i put him in it and he cried but to be honest i thought it was way too cold so got her to put some more hot water in it and then he was fine, his wee legs kicking away in it, thwn when i lifted him out he started crying so i put him back in for a wee minute ne he stopped but then didnt want him gettin too cold so was time to come out and he cried again, so think he really liked it. Also yesterday he was wearing big boys clothes for the 1st time, he's just been wearing babygrows till now and he looks soooo grown up, kept thinking wheres my wee baby gone.

as of this morning his feeds are back up to 3 hourly and he only had 1 small vomit all day which is great as it was the 3 hourly feeds that started the reflux n vomiting off the last time so fingers crossed he continues with no vomits or at least only very small ones.

some pics of Lewis's first bath

Lewis wearin big boys clothes

his new vest, love it, it says mummys superbaby, little hero in training

Happy 1st Xmas Lewis, and good news

Lewis just looked sooooo cute in his reindeer and elf outfits yesterday and his santa outfit today, pics at bottom :)

well yesterday morning, Lewis got moved 'upstairs' which is still part of NICU but it's like the stepdown ward, so unless he earns himself a 1st class ride back downstairs, next stop is hopefully home, though still working on feeds, he was being sick a lot so they've now started doing gradual feeds, the aim is to get him on 50mils every 2 hours, so for example today he's down to 9mils one hour and 41mils the next hour which makes 50 mils in 2 hours, every 12 hours they're reducing the smallest one by another mil or 2 and upping the bigger one byt the same so in few days he'l be on none 1 hour and 50 the next, therefore onto 50mils every 2 hours , this seems to be working as since they've started that couple days ago, NO vomits :)

anyway onto the pics :)

 

 

Sicky Baby

so today has been Lewis's worst day for spewing up his feeds, he spewed them all except 1, so i now have a months worth of washing just from the 1 day, he was still on feeds of 75mils every 3 hours and they thickened it a bit more and put gaviscon in it as well as his reflux meds, but he spewed that 1 up as well, so now they've put him back to 50mils every 2 hours, at 1 of his feeds this morning he sucked 40 mils from a bottle which is his personal best, it's double what he normally sucks, just a shame he keeps spewing up. not sure what the plan is now other than just doin the 50 mils every 2 hours
he's doin great apart from that which is excellent, just waiting to get moved upstairs now not sure when that'l be though hopefully soon in the next couple weeks would be good, then i may ask for a transfer to the hospital 2 minutes drive from our house and we can go home :) now that he's off the oxygen etc and it's just his feeds to work on.
he's getting over his infection now and the antibiotics are getting stopped tomorrow and smelly can finally have his very 1st bath at nearly 6 weeks old lol think he'll hate it though he hates getting top n tailed.

Look how far he's came from the night he was born

to Yesterday

all in just over 5 weeks he's amazing

And Another Step Forward

Guess who is OFF the blender, and guess who is NOT on the low flow, yep Lewis is oxygen free :), they took the blender off this morning and so far hasn't needed the low flow as he's done well without it and his sats are still sitting at 100%
he's also now on feeds of 75mils every 3 hours, but has been sick a lot of times so we're just worrying about the reflux and i do know it's a small price to pay and we pretty much knew he wouldn't avoid it but his nurse said it looks a lot to us but to them it isn't so i guess that's good and just hope it doesn't get any worse. sooooo proud of him, more than words can say.

1 step forward 2 back

but not all bad...

Lewis took really unwell the other night, was absolutely red hot, crying his eyes out, his heartrate was shooting away up and his resp thing was alarming (scary stuff) but his nurse said it was just wind, i knew it wasn't no wind, so anyway 18 effin hours later we were told he might have a wee bug or something, so they started him on antibiotics for now till they collect his samples and bloods and get them off the lab..anyway long story short, he has an infection, just so mad that 18 hours of precious time got wasted when he could have been started on antibiotics n things then, but cos of 1 nurse sayin it was wind he waitid them 18 hours while it really took hold. but yesterday and today he's looking much brighter and is more alert and more like his usual nosy self, still on the antibiotics though and last night and today pulled out his canula, if it's not canulas it's nasal prongs and NG tube, he's a little monkey.

The blender is now at a flow of 2.5 with 21% oxygen and were told when it got to a flow of 2 he could go onto the low flow, so it goes down in increments of .5 which means.... 1 more turn down on it and it'l be at 2 yippee.

He's on feeds every 2 hours of 50mils, they're changing it maybe tomorrow to every 3 hours with probably about 75 mils, but last night and today he has had LOTS of reflux, i must have brought back about 10 babygrows that are dirty just from last night cos of it, not sure what the deal will be with that at the minute.
I've also started doing his tube feeds now which is good cos it's somethin else i can do for him, inbetween trying him on the bottle etc, and good news is hopefully he can have a proper bath soon, he smells of that awful smelling carobel 'milk' stuff he gets.

that's about it for now lol.

good few days

on friday the doctor spoke with ricky and sia Lewis is doing really well and just has to grow and get a bit stronger and he'll be off upstairs to another ward, which means he'll be close to getting home, he also said they fluid isn't building back up again so they won't be doing anymore xrays for it unless they feel they need to, he was weighed again on friday and was 3.84kg. they also changed his feeds to getting 24 mils of milk all at once every hour, before he was getting it over the whole hour on a drip. dont think the 24 mils was enough though as he was wakening up and getting grumpy and looking for his feed just before the hour was up. he was quite a bit sick on saturday though he's on meds for the reflux.
On sunday night they gave him his last hourly feed of 24 mils at 8pm and then at 10pm he was getting 50 mils every 2 hours.

On Monday guess who got out of the incubator and into a proper big cot and guess who got his 1st try with a bottle feed, though he only took 10 mils it's more to get him used to it at the minute and get him used to sucking and swallowing, though sometimes he forgot to do both at the same time and was either choking on it or spitting it out, he was also weighed again and is 3.95kg, at least he's gaining weight quite steadily. Also had been quite a bit sick on monday as well. Tried him again with the bottle later on and he took 16 mils, done much better that time, no spit outs, he's on carobel which is fat free milk and also they put a thickener in it and he doesn't like the taste of it, don't blame him though it doesn't smell very nice either, he just kept looking at me as if i was giving him something poisonous. but then went to giveing me the biggest smiles ever, so cute.

Theres 3 bed bays in the NICU ward and Lewis was in the 3rd which is the one farthest away from the door, they say the closer they get to the door, the closer they are to getting home,Lewis was moved out of the end room on monday and into.....the 1st room which is a 4 bed bay, so only 4 babies in there and as it's the first room theres barely any machines etc so it's much quieter in there woohoo so pleased.

 and update for today, the flow on the blender had been turned down twice during the night and is not at 3.5 litres and at 30% oxygen, when he gets to 2 litres he can go on the low flow woohoo. the flow was turned down again to 3 litres but after the biggest paddy i've ever seen him take it was turned back up to 3.5, poor wee man was soooooo hot and was sweaty, his heart rate was going away up and his resp thing kept alarming, not sure what was wrong with him but nurse said wind, to me it wasn't wind though, she gave him some paracetomol and he settled down.
today i've done his tube feeds a few times, then tonight they give me the pack to read telling me how to do it and have to get it signed off to say i've been observed etc, don't know why bother giving me that to read telling me how to do it when they've let me do it all day lol
anyway that's all for now thought i'd better do an update, finding the time is hard, it's good that ronald mcdonald has wifi but don't get much time to get on my laptop at all, we're only here at night to sleep we spend all day at the hospital.

Soooooooo proud of Lewis and how far he's come in nearly 5 weeks, he's done better than any1 expected of him, he's just a wee star.

Guess who is......

wearin clothes, yep Lewis, we got to dress him this afternoon

and then Santa visited

Happy 4 weeks old Chumba

Another chest drain

Yesterday (sunday) when we went in the mornin were told lewis had a routine chest xray before we got there, which is nothin unusual but about half 4 the doctor came in and asked could she do the chest drain just now (sounded like she thot we knew he needed it done again, which we didnt) and could we give her about 15 minutes till she done it, so he had his chest drained again, 1st time was friday n this time she said it was nearly double the fluid than friday, wishin they wud just fit a proper chest drain now, can't bear the thot of them stickin a needle in him everytime n takin the fluid out that way, it reminds me of the amnio n that was really really horrible x startin to feel a lack of communication to be honest x anyway roll on xmas even tho we'll be spendin it in ronald mcdonald i can't wait to see lewis on xmas eve in his cute elf outfit and on xmas day in his equally cute santa outfit x

Update

yesterday the nurse noticed Lewis was workin a little harder at breathin, after previous concerns about too much fluid in his chest, though wasn't considered a problem at the time, they decided to drain some fluid out yesterday, he wasn't sufferin through it or anythin but was thought it was the reason he was workin harder to breathe, they never 'fitted' a chest drain but just put a wee line out and once finished drainin the fluid they took the line out. Pleased to say his breathin seems much better now, they'l keep an eye on the fluid and if it builds back up again they'll look at fittin a proper chest drain, so hopefully the fluid won't build up again. They put him ona  type of fat free milk yesterday as well as the fat could cause the fluid build up as well, he was only on half what he was gettin but now up to 16 mils an hour on it and he was on 22 mils an hour before they changed it, so nearly back to what it was. he's still doin well on the blender so hopefully he won't go back to Cpap. Got him a cute Elf outfit for xmas eve and a santa outfit for xmas day can't wait to see him wearin them. roll on next week to see if he's gettin in a proper big cot so i can dress him in his clothes :)

Lewis was weighed again today, he was last weighed on Monday after extubation and he was still weighin his birth weight of 3.5kg (7lb8oz), they said they expect them to lose 10 percent of their birth weight but..today Lewis weighs 3.5kg (about 7lb 11 and half oz)
he is a wee chumba :)

Guess who's OFF cpap

Went in this mornin to no cpap, lewis is now on what they call the blender, it does pretty much the same as the Cpap but with only 2 wee prongs up his nose for the flow, so no special cpap hat or cpap squashed on his nose, he once again looks like a different baby can now see his whole face at once includin his head it's great to finally be cake to see all of him and his gases have came back even better than they did when he was on Cpap so that indicates he prefers the blender. Way to go chumba i couldn't be more proud of both my boys hopefully next week he'll get a proper big cot am so chuffed it means we can buy him cot toys for xmas. I'm off home for the day tomorrow to sort out nathans place for xmas and to buy lewis some clothes now he can wear them yay so daddy is gettin his boy all to himself tomorrow x he's 3 weeks old today and has just done amazing in this short time, hopefully he'll be home before we know it

My Very First Cuddle

today at 4pm for about 40 minutes :) and then ricky got a hold after me, bittersweet though remembering the last baby we held, Nathan xx and lewis pulled out his canula in his hand that was only put in today to replace a line in his arm as his infection levels up, then he pulled the NG tube out his mouth x he's coping well on the Cpap and they took away the ventilator today, they left it by him for 24 hours just incase they had to put him back on it, so glad to see it go

Mummys clever boy

well this evening extubation time finally came round, think the pictures will say it all,

Lewis in his last picture on the ventilator :)

A very quick snapshot with NOTHING on his face, the nurse managed to take the pic quickly inbetween them takin ventilator off and putting the CPAP on

 and Lewis on his CPAP, doing ALL his own breathing :)

Lewis with his very first dummy he got earlier, he loved it, has such a great suck on him, hopefully can only be a good thing for when he starts gettin his milk orally, he sounded and looked like maggie simpson, was so funny

2nd try at extubation

Lewis is to get steroids over the weekend to open everything up and they will try again to extubate him on monday, hope the steroids do the job and he gets off this vent, it cant do anything for him now really as its on minimum so he really isnt gettin anythin from it, he does fine breathin himself until he throws a tantrum n everythin closes up then he cant breathe so he panics even more so if the steroids work everythin will be opened up so once he takes a tantrum he'll still can breathe n then wont panic either n once he calms down he'l be ok n he'll realise that x we went n registered him yesterday so now he's officially Lewis Nathan Richard Boyd x

Not getting off the ventilator today

They just tried takin lewis off the ventilator but he wasn't coping too well and was struggling a bit and his sats were going a bit mad so they've just kicked us out while they put him back on it, was so hopin he'd get it off today so i can get a cuddle but i guess he's just not ready, not sure when they'll try again just see how he goes x

Update

Lewis has gone from 1 mil of milk an hour up to 7mils an hour, theyv been puttin it up by 1mil every 6 hours but tonight hes been pukey so theyv put him down to 6mils an hour n added a thickener to his milk, good news is this mornin they took him off the oscillator n bk onto the conventional ventilator so now just need to get him off that onto cpap so mummy can have a cuddle, he's been copin well bein back on that ventilator which is good, theyv been lowerin his morphine as well and he's much more alert and awake now which is good till can see him cryin its horrible n i hate it, just want to pick him up n cuddle him x

Still stable

Our sunshine warrior is still stable and doin well, night before last they stopped his parylitic n last night he was twitchin his fingers n tryin to move his head, for an hour and a half he went between half openin his eyes n fully openin them, so amazin to see him lookin at me, n he was squeezin his wee hand against ma finger loads, just great to see some life about him rather than bein flat with bein on parylitic x today he's still doin well, was sound asleep the whole time we were just there, just poppin bk over in a minute, daisy had to get to the parlour lol, he's on 1mil of milk an hour thru his ng tube and they're turnin his morphine down a touch today, hopin to be off the oscillator bk onto normal vent today as well but not sure if that's goin ahead as they've turned his pressure on the vent bk up a notch, but least it's still comin down as it goes from them turnin it down a couple, gettin a bad blood gas, n them turnin it bk up 1 so it's still gettin lower, slowly x we know how quick things could change but for now just tryin to 'enjoy' the fact he's doin well and is still stable, so proud of him he's doin so well, but ..so close but yet so far xx

A non blurry pic

1 week old

Can't believe my chunky monkey is 1 week old already it's gone so fast, he's came so far in his 1 week but still a long way to go, he's staying stable which is good and this evening they stopped his parylitic so hopefully by tomorrow he'll have his wee eyes open for us, we haven't seen them yet and hopefully he'll tolerate it well enough that he doesn't have to go back on it, they've also started weanin the oscillator they turned it down a couple but then had to put it bk up 1 so still lower than it was which is good and hopefully he'll be back on the normal ventilator soon.

Changes

Well after my update last night we went back up to see Lewis, his blood gases had been comin back not so good and he was on a blood transfusion, while we were there it was decided they were goin to change the type of ventilator he's on so he's now on the oscillator. Which makes him vibrate, not very nice to see but if he likes thats 1 better then itl do him good, its hard seein so many changes happenin in 1 night when up till repair day we've been used to everythin bein stable n him just stayin the way he was, they have said hes doin everythin expected of him as a CDH baby so all that is normal for him, but still hard for us as his parents when things change, we don't want changes we want constant stability though we know its impossible, he's just the most beautiful wee thing ever

Lewis post op

Lewis came back from theatre after a very long 5 hours, they found part of his liver was UP and he has got a left lung though its very small as expected anyway, they thought at 1st it didnt look so bad and was quite a bit of diaphragm at the front but as they looked further back there was hardly any diaphragm at the back but they managed to repair the hole usin what muscle they had from the diaphragm and some from tummy muscle, they said his tummy is a bit tighter than they would like so keeping am extra eye on it overnight especially and once his body starts floodin the area with extra fluid and things as part of the normal healing process theres the risk his tummy will be way too tight and they,ll have to take him back to theatre to release the tension, poor wee man looks different now obviously his chest has sunk and his tummy has filled, the way it should be, but got used to seeing big chest n tiny tummy, so proud of him getting this far and getting through the operation even though the next 48 hours are most critical, he has just amazed us every single day and hope so much he continues to amaze us further he's just an amazing wee guy, our sunshine warrior

Lewis is in theatre

They came for him at 11 this morning and left with him at 11.15am hes been gone 2 hours now, cant wait to see my beautiful warrior again just terrified of whats ahead x was so hard when they wheeled him away from me, last time they wheeled my boy away from me was the last time i ever seen his beautiful wee face rip nathan, i love my boys so much.

Surgery goin ahead

For tomorrow (tuesday) morning, so scary just dont know what to say x i got to help with some of his case earlier, wiped his eyes n round the thing on his mouth for his ventilator, also got to check his pee bag and his nappy for poo, no poo in it but had some on his bum which i got to clean and put a clean nappy under him, over the moon i got to change a dirty bum :) got to take his socks off n touch n hold his big feet and took his mitt off n held his big hand, really needed this today with tomorrow looming over, just not lookin forward to the rollercoaster ahead at all and keep sayin it but just hope he gets through it and really amazes us with recovery n gets stable as quick as he did when he was born x love my little big man so much xx

Surgery set

For tuesday providin lewis stays stable etc till then which am sure he will, then guess after tuesday the rollercoaster really begins unless he decides to amaze us all again which i so hope he will x am still waiti to be discharged but hopefully can go today just lookin forward to bein with Ricky again missed his so much been in here a week tmoro n hes only stayed 1 night which was the night lewis was born x not much else to report at the minute main thing is our sunshine warrior is back to stable and stayin there xx

Not a great day all round more for me though, his nurse turned down his ventilator a touch this mornin but his blood gases showed he didnt like it so she put it bk up, since then his gases are comin bk not so good, well 1st i didnt even understand what it meant but when i went back up i walked in to find him bein hand bagged n suctioned, didnt know what this meant either and obviously panicked and there was talk of changin his ventilator as well, before this though the surgeon had been lookin for me about doin his repair tomorro but now will probably leave it till monday dependin if he stays stable till then x had a nice chat with his night nurse and she explained a few things which has made me feel a bit better and she also gave me his hat that was put on him at birth, once again left cuddlin bits of material just want to hold my beautiful wee boy
This post is from last night but been havin trouble sendin it from ma phone x

Still stable

Lewis had a stable 1st n 2nd night and been stable inbetween x and doin great peein out almost exact what theyre puttin in x just hate this sittin waitin about till like 12 everyday before allowed to go over and see him x good news is we got a room at the ronald mcdonald house Ricky stayed there last night and when i'm discharged i can go there too x bad news is poor Ricky has a cold so we decided was best for him not to go see lewis as dont want to risk anythin, just means that since he was born Rickys only seen him once for half an hour n has to get by on pics im takin such a shame but for the best x anyway thats nearly 12 now so am off to see my little warrior as we found out his lewis means warrior how appropriate lol x

Lewis nathan richard boyd

Best can do is a pic of a pic for now xx our beautiful little fighter x so proud of u sunshine xx

A fighter is born

Lewis nathan richard boyd was born 12th november at 17.33 by emergency section x done really well at birth and was stable from then x finally got to meet him at half 10pm hes so beautiful n we're extremely proud how well he's doin lets hope so much it continues as well and better xx goin to try and upload some pics if can remember how to do it by phone xx

This is it

Off to labour suite to have waters broken n start the drip x not sure how long now but every1 is sayin wont be long now x next update i guess will be sunshines arrival x wish him luck on the next stage of his journey xx

Quick update 2

Well didnt get my waters broken got 3rd prostin pessary instead x going bk up to delivery in the mornin to check again and see if they can break waters yet x had an uncomfy time n gettin regular more painful tightenings now just waitin for the doctor to come and write me up sleeping pills so i can sleep tonight x doesnt look like sunshine will make his very grand entrance till tomorrow x NICU still have a cot for him and are still all ready for him and found out will be delivering in theatre as the delivery rooms are too small to fit every1 xx

Quick update 2

Well didnt get my waters broken got 3rd prostin pessary instead x going bk up to delivery in the mornin to check again and see if they can break waters yet x had an uncomfy time n gettin regular more painful tightenings now just waitin for the doctor to come and write me up sleeping pills so i can sleep tonight x doesnt look like sunshine will make his very grand entrance till tomorrow x NICU still have a cot for him and are still all ready for him and found out will be delivering in theatre as the delivery rooms are too small to fit every1 xx

Quick update

Had 1st pessary last night and 2nd at 6.30 this mornin x was gettin tightenings from bout 4am and monitor at 6 was showing lots of them x not been in much pain its manageable but hardly slept last night and had 2 hours this afternoon then lost bit of water and plug x just waiting for delivery suite shouting me up now for assessment to decide whether to break water properly and start drip or to give another pessary x NICU keep ringing down to see how things are going they're waiting for sunshine and have a cot ready for him xx

38+4 it,s nearly Tuesday

can't believe i'm now counting down just a few days now, this day has always just seemed so far off, i kind of go from 'right let's just do this get this horrible journey on the road so we can get through it and bring our wee man home, but that changes in the space of seconds to the ultimate fear, 'omg i'm so not ready for this, let's just keep him in there, but i guess no matter how many days or months away it is, i'll NEVER be ready, i'm just trying to concentrate on seeing his beautiful face, though it won't be as clear as i'd like, wires/tubes etc i'm hoping that after the initial shocks i'll see him as though they aren't even there.

I just wish the fact he's been stable with 'good' LHR until now was an indication of he'll do, but no matter what and how good or bad he's been doing since diagnosis, no1 can ever tell us he'll be ok, i don't want to just sit and wait out each minute/hour/day and see what it brings, i just need to know, but it's just 1 of them things we can't know.

I know he'll be in the best possible hands i have all my faith and trust split between my Angels looking after their brother and the hospital at Yorkhill, i know they'll all do absolutely everything they can for Sunshine, and i know every1 is just holding out to hear he's doing ok and to finally see his beautiful face and finally learn his real name.

I guess i want to take this opportunity to thank a few people for everything as we approach the end of the very long and hard pregnancy journey, Leigh for 'sharing' the journey with me, keeping me laughing at her blondeness and getting me addicted to cafeworld on facebook lol, Rachel, Caroline, Lynley, Sarah and Gemma, who all, sadly have CDH angels, for letting me rant and cry and for helping me with information etc has helped me more than they'll know, also the people i've 'met' and email who's CDH babies have been treated in Yorkhill and are now all home and doing well, which has been a great comfort to know, they've all helped me gain so much trust in the hospital.

Our local SANDS group, where we've attented the meetings every month since we lost Nathan, their support is just amazing beyond words.

And to CHERUBS for the lovely parcel i received yesterday containing the amazing totebag and to every1 who donated items for this in honour or in memory of their cherubs.

My mum for everything but mostly for loving my babies as much as i do, all of them not just the 1 who's still here.

Last but not least my wonderful hubby, for everything, i know you're scared too, i love you so much xx

I'm sure i'll be back with more thanks when we approach the end of the hospital journey xx

Well i just realised today is the last day we can have together, the 3 of us with Sunshine still safely tucked up, hubby workin all weekend, his last night being sunday night and i'll have all my last minute bits to do on monday, ready for going in on tuesday, and monday night will be our last night together cuddling Sunshine in bed seeing as Rickys not allowed to stay at the hospital on tuesday night :(, hopefully we can go and do something together today just the 3 of us on our last day together.

I'm not sure i'll be updating again before Sunshine is here, but will do my best to update as often as i can and post a pic of the beautiful Sunshine.

Hayley xxx