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