Our Little Sunshine's CDH Journey

New Year, not so new Lewis :s

2012-01-12T00:44:00.000Z

I wanted to try and update the blogs at the beginning of each month at least, but i have been so busy and just don't seem to get the time! so anyway it's after midnight and here i am doing a quick update before bed!

Lewis has gone back to being Lewis, not much of an interest in food again at the moment, so yeh the CDH rollercoaster is still going on here, 10 steps forward, 50 back, but we just have to keep on working at it and hopeing next time he goes through his interest phase, it'll stick!
Lewis had a great xmas, spoilt rotten as usual, didn't even bother when he was told to say goodbye to the xmas tree a few days later as santa was coming for it while he slept cos he needed it back.
His speech is even more amazing now, i can understand most of what hes saying and he's onto stringing some 3 words together!
We took delivery of a backpack today for his feeds, so he can now be pumpfed at his 3 feeds through the day, we're working at finding a rate he'll tolerate though as he's only tolerating 43 mils per hour through the night at that's when he's sleeping and relaxed, started him a bit higher today but nope didn't like it so had to turn it down, hopefully an increase of 1 or 2 mils at a time will work, fingers crossed! he was good at keeping the backpack on although a few times kept coming to me and saying 'pump off' like he does when he wakes in the mornings, but some quick distractions soon fixed that :)
I sort of felt that going to pump feeds through the day was something we always tried to avoid as that way seemed like he would be on continuos feeds due to his lack of toleration of amounts so feels like we've gone backwards a few steps too but a the same time i was rather excited about it but only because he always protests getting his feeds throuhg the day, we have to practically hold him down on the sofa while he screams and kicks, and then feed goes everywhere and it's really just not a nice experience for him to associate with feeding, perhaps giving him more fear about anything that fills his belly up!
He is also getting a little more 'clingy' to me, like he won't let daddy put him to bed etc and if he's taking him downstairs he looks at me with sad eyes crying saying mummy lol so cute and maybe like once a day he'll give me a cuddle when i ask for 1 and a kiss and says love you, and maybe couple times a day he'll sit beside me and lay his head on me or put his arms wound me without being asked, waited over 2 years for any kind of affection willingly without prompting from him and it was really worth the wait :)
Just realised it's now 12th January, 2 years ago today we brought our beautiful sunshine warrior home after only being told the day before, 'how about home tomorrow' omg really :) and here he is, still faced with many CDH related challenges, but still battling on like the warrior he is :)

Updates

2011-12-06T22:02:00.000Z

Having always thought i would give the blog until Lewis turned 2 and then turn it private, i have decided just to leave it open, no idea if any1 still reads it or not, but i do know from the visitor thing that people are coming across it by googling CDH related things which are obvious to the fact they are pregnant with a CDH baby and the thing is showing they're reading posts i've written regarding the things they're googling, so i 'hope' that the blog is helping some people out there and i'd to shut off 1 of just a few places people can get get what they are looking for, i only wish there were more answers to questions i was looking forward to while pregnant with Lewis. However i am yet to decide whether to just leave this 1 as it is and not write in it again, perhaps starting a new private 1, like i have for Kaylah, or just keep writing in here to keep his life journey in 1 place, but at the same time trying to decide if he will actually appreciate his journey 'out there' i'm sure when he knows it's helped people he won't mind, but still, it's his life, not mine! decisions, maybe just for now i'll leave it, i know either way i need something for me and i've had this blog for so long now, started writing it when we got his diagnosis at 17+ weeks pregnant!
I think for now i'll leave it and have a good think and decide after christmas :) that wasn't entirely my plan to write about that in this update, i was going to just say about how busy life is now with a toddler and a new baby, just barely get the time to update these, so was planning to update both Lewis's and Kaylah's blogs once a month, even if it's just some pics!

Anyway enough waffling, none of that probably doesn't make any sense lol
Lewis had his 2year check with the health visitor today, absolutely no concerns with him, so much for being told he'd always be a bit behind developmentally, well he's not, he's brighter :), so much for not being able to run around with the other kids, he can :) and i bet he'll say so much for not playing for scotland too :) Health visitor said he passed with flying colours and she also said she's never had 1 do everything she asked so quickly :) he makes me 1 heck of a proud mummy every single day, he's also had a HUGE growth spurt in the past 2 months, he's so tall now and can reach our door handles n open the doors eek, he counts very well, mostly coming downstairs lol, he's also now walking up the stairs instead of crawling up them, another eeek lol, his eating? omg he is doing just fab, he joins in our meal time every time now, he'll ask for food now, he'll ask for juice as well, though we struggle with knowing what to give him because he doesnt get the chew thing and so he chokes on things as he tries to swallow! we have a wee net feeder thing and he quite likes that for now, so it's a bit safer for him to eat from!
we have our christmas tree up now and he just loves the trees, so much so we had to put a wee 1 in his room! he stole away with a wee light up 1 we got for his brothers grave but had to pinch that back to take to Nathan today and we can't find another 1 so he's just got a plain tree till we got some wee lights for him, he lay in his bed for over 2 hours the other night just saying oooohhhh tree lol, so cute.

Fundo Loosening Op = Fail

2011-11-24T23:15:00.000Z

So we had a call from the hospital, again short notice to take Lewis in for his op to loosen his fundo! apparently the delay was because they were trying to get hold of a special pair of scissors they needed for the op, at the cost of £550 a pair which are single use, oops.
So we took him in for 2pm on sunday just past (20th November) booked him in and that was that, no idea why we had to go in then as he wasn't booked into theatre till 12.38pm the next day! so lots of hanging around, and poor Rucky was working the saturday night and he was staying in with Lewis so was knackered, Lewis wasn't for settling at night, but Ricky managed to get him to sleep about half 8, only for a nurse to come clattering around at his cot an hour later and wake him up! and that was him up till 3.30am!
He was to fast from 6am but Ricky said nurse came in and despite him telling her he was on his pump feed till 6am she took the pump away at 3am! so next morning, cue a very tired very hungry Lewis, i sent Ricky homw with Kaylah so he could get some sleep as he was staying in with him that night too, no need to say 12.38pm came and went without a peep, then at half 2 some1 came and told me was a delay in theatre....yeh i'd already figured that out! anyway they finally came for him at 3.30pm and i took him in and held him till he fell asleep with the gas, i hate doing that it's awful, so full of life kicking and screaming 1 minute and the next...nothing :(
He came back a couple hours later, Consultant came in for a chat.....the op failed, he couldn't remove the stitch! apparently it was just too close into a fold in his oesophagus and would have been unsafe to try and remove incase the oesophagus got damaged! to top it off, he changed Lewis's mini button while he was in as it was due changing (even though i was supposed to get to do it) and obviously cos he'd been fasting for so long, his stomach was empty and so they couldn't aspirate anything to be sure the button was placed correctly, so back to the ward Lewis came with the note, not to use his feeding tube!! great so how the hell do we feed him!! we don't, they put him on a fluids drip, i wasn't happy!! consultant had said we'll bring him back in january and try again for the stitch removal, this time though instead of going in the same way as this time, down his throat to get it from above, go in through his gastrostomy and try and get it from the bottom, if that failed then would have to open him up again, which he was really trying to avoid, having been opened in the same place twice already, last time for the fundo and actually extending his repair scar and nicking his spleen during the fundo due to everything being so stuck together etc was just a risk he didnt want to take if not absolutely necessary, which i totally agree with! off to xray the next morning for contrast study and to check tube placement etc

They used a syringe to put the contrast liquid into his mouth, forcing him into swallowing it, consultant was very pleased and surprised by the results, it showed the liquid went striaght through to his stomach very very quickly, not what we were expecting with a tight fundo, not what he was expecting either and it was him who done the endoscopy in august and discovered it to be too tight! soooo this means it's loosened itself off! wish we'd done the contrast before he went to theatre!! and thinking back to the few days before went into hospital, he has had a reduction of the coughing/choking/gagging and bringing up a LOT of sticky horrible mucous! meaning it's obviously been able to run right through into his stomach with the loosening! just before that reduction though he went through a week or so of being really bad when we were doing his feeds, screaming the place down and writhing around in pain! that has stopped as well and he's actually tolerating his feeds better than ever!! soooo i do think it was the too tight fundo causing the problems all along, we'll see how it goes though.
Got home on tuesday, and tuesday night in his own bed he must have been sooo knackered, he slept right through without even moving and till about 10.30 next morning!

He's doing just great, i just felt awful that he'd gone throught the whole fasting thing and then the theatre stuff, getting put to sleep etc for nothing, just wish we could have done the contrast study first but then i guess consultant hadn't expected it to change! none of us did, but oh well it's done now i guess and he's forgot all about it!
He's doing amazing the past couple weeks, he wants everything to try and eat, he's also taking a bottle with some juice in it, running round with it for couple hours and lucky if there's a mil or 2 out of it, till today, a whole 3oz of juice!! he's biting into things and taking the bites into his mouth, if they're too large for him (like bigger than a rice crispie) he spits it out, if it's the same size or smaller, he's SWALLOWING yay, he ate some rice crispies off Ricky the other day, started off just putting 1 in his mouth and he swallowed it, so then moved onto 2, then 3 etc, but got to about 5 and he started choking on them, cue a whack on the back poor wee thing but out flying came a few rice crispies! he does the same with crisps, gets a bowl and asks for crisps in it, hula hoops arehis favourite, he'll stick it on his finger and lick away at it for the next hour or so until it's quite soft and then he's taking a bit in his mouth, bigger than he can handle and chokes on it! i hate all this choking, i really just wish that now he has this fabulous massive interest in food he would let us start at the bottom with baby foods and 'wean' him and then give him solids, just like you do when learning a baby, cos basically as far as eating goes he is just at that stage! but nope he won't have that, will only take finger foods, continues to bite off more than he can chew and then chokes on it in the panic trying to eject it from his mouth, all well and good thinking just give him smaller pieces, oh no he won't have that, he'll have the things as they come out the packets else he'll throw a wobbler and not have them at all, so just have to supervise closely! he is doing sooo amazingly well though we're absolutely delighted with his progress :) and now he can ask for what he wants i think maybe makes it easier for him, he can say he wants crisps in his bowl, or some juice! he's just great, talking in short sentences too and coming out with new words all the time! he is a stubborn wee man who definitely knows his own mind :)

2011-11-09T21:29:00.000Z

2 years :)

2011-11-09T21:22:00.000Z

This time 2 years ago i was spending the last night at home with our baby safely tucked up in my belly, for we didn't know which path our journey would take us, 2 years ago tomorrow we checked into hospital ready to begin induction, 2 days later after showing no signs of wanting to come out of there i had my waters broken and hooked up to the drip to bring on contractions, 2 hours after that begin and after him getting into distress and his heartrate dropping i was rushed to theatre for an emergency section, then they whisked him away, 5 and a half hours passed before they would let us into the adjoining sick kids to see him, while they hooked him up to his life support. convinced he wouldnt make it past xmas, xmas came and went and he fought on and after the longest 2 months ever we brought home our wee miracle ray of sunshine Lewis. The past 2 years has gone so fast but i am so lucky to have him, he is just the best wee boy ever, nothing gets in his way, he's a typical proper wee boy, into cars and trucks and all things boyish, loves a bit of rough and tumble, much to my horror, he's into toy story at the moment and anything to do with cars and animals especially cats and puppies! he has self taught some makaton signing and coming on a treat with his speech. Still 100% tube fed and loving nursery, he has made big improvements since starting nursery with the sensory issues he has with food, not gagging and retracting so quickly from it, but willing to touch and lick most things now.
We had his nursery review on monday and they are so pleased with his progress, said he's such a lovely wee boy, and couldnt believe just how clever he is, not sure where he gets his brains from but he seems to have a real lot of them :)
Finally got his appointment for hospital too, he was supposed to go in and get a wee op to loosen his fundo off as its too tight, consultant wanted him in within 6 weeks, but that 6 weeks ran out 6 weeks ago!! the appointment is just because his consultant wants to see him at the clinic and discuss the wee op etc just want to get it over for him now and we just worry that then it'll end up too loose and the reflux will start again :(
He's still not much fussed for Kaylah but we know he loves her really :)
We're taking him to the sealife centre for his birthday on saturday as he also likes fish and things, we have our own in a big tank at home and he loves them.
so proud of the toddler he has become, even if his terrible two's are quite terrible at times but i wouldn't have him any other way, he's here and he's happy and if he's happy then i'm happy :)

Wee update

2011-10-22T21:59:00.001+01:00

Just wanted to announce the birth of our beautiful baby, Lewis is the proud big brother to Kaylah Ashleigh Rose, born on 29th September, she's 3 weeks old now (that has gone soooo quick) and is absolutely beautiful n so happy and content, Lewis is much fussed for her but she gets cuddles and kisses :)

As for Lewis, well he's doing good, terrible two's have hit :s he is such a rough, boisterous child lol, he loves cars in any shape or form and has quite the collection going on :) I can't believe he'll be TWO years old in just 3 weeks time, that has gone sooooo fast as well and like last year the approach to his birthday brings a whole range of emotions and thoughts, such as 'what if' and it's just soooo not worth even thinking about that but still it's there! But he is here and larger than life and doing fab :) and he's as stubborn and defiant now as he was then, but I love his stubborn, defiant streak as I believe that's partly the reason he made it :) our sunshine warrior :)

His speech is coming on a fair bit lately, he is a tad behind but they say it's because he doesn't eat and hasn't all this time so he hasn't been using the facial muscles while eating that babies later need for their speech, but he's getting there, still loving nursery :) and has a wee 'thing' about his wellies lol I guess it's an unwritten law when it comes to wellies, kids just HAVE to wear them all the time and they become the favourite choice of footwear lol
Speaking of eating, Lewis is going great in that department, still not taking anything enough to count as calories but he will taste moste things and is getting a bit brave and letting solid things such as a wee bit of crisp go right in his mouth without him holding it, though it does come straight back out!, his dietician wants us to introduce a '3 mealtimes a day' but we've tried that before, he gets his food 'playtimes' bug if we want him to actually taste things we find he does great if we don't give him a plate of his own (he won't touch that) but we let him come freely to our plates and we'll feed him teeny bits, he comes back and forth regularly until its finished, just have to give him teeny bits else his tongue will automatically eject whatever is in there lol xx so proud of him :)
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Still tasting, advancing with lumps?

2011-09-01T19:41:00.000+01:00

Just been sat for the last half an hour with Lewis and a packet of haribo Jelly sweets, I've been holding a sweet to him and he's stood there biting On it, he's never 'bitten' into anything food wise so this is fab n he's kept doing it cos they're just jelly n bits aren't breaking off into his mouth, so I thought I'd step it up a little n held a Kelly baby for him to bite into, bits break off these easier n he was fine with biting a bit off n then spitting it out so we kept practicing the biting a bit off into his mouth then him spitting it out straight away, at least there was a wee bit going loose in his mouth for a second....after a while he didn't spit the bit out straight away, he kept it at the front of his mouth and kept the control of it for a couple of seconds before spitting it, but then he kept picking it back up and putting it back in, keeping it at the front and keeping in control, no gagging or anything.....what a huge step, learning control :) so proud of him xx he's still interested in food n willing to lick and have a teeny weeny taste of mOst things, but the amounts he'll take are soooooo small there's barely anything there, that's why thd jelly baby head thing is such a big deal, it's the biggest bit of something he's ever had in his mouth and HE kept control :) keep it up my beautiful boy, mummy loves you soooo much xx

Lumps :)

2011-08-26T20:13:00.001+01:00

Is proud and very happy to say that at 21 and a half months old, Lewis has had his very 1st lumpy food!! He was helping me eat a muller rice! I just stuck to giving him bits with no rice in and he kept coming back for more, just opening enough to get teeny weeny wee bits, then I gave him about half a grain of rice n he ate it :) so then I gave him a bigger bit of rice n he ate that fine too, so then gave him a grain with teeny bit of the 'saucy' stuff but I kind of shoved a teeny bit more in and he started gagging and choking :( but after he recovered he came back for more but refused to open wide enough to let more than a teeny weeny wee bit in again :s but still he had a couple grains of rice = lumps woohoo :)

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He ASKED for food :)

2011-08-17T22:02:00.001+01:00

So today while I was in the kitchen making dinner, Lewis came in, went to his highchair n pushed it to the middle of the floor, then he goes to the fridge and points at it, so I opened it and he points to the little yoghurts, so I took 1 out and sat it on the worktop, then he points to the cutlery, so I sat a spoon next to the yoghurt so then he goes over to his highchair and stands beside it with his arms up for me to lift him! I put him in the chair, gave him the yoghurt and he started eating it!! With the spoon, but then discovered he could get more by using his fingers! He ate about quarter of the little pot then got bored and started making a mess with it, he managed to rub it in his hair too lol, Ricky was in the bath so inhad to just go plonk him in there with him lol so proud of Lewis, ok I know I said he 'asked' for food when he never used his voice but he asked in his own way, 1st time ever and he actually asked for food and he actually wanted it to eat and not play with or anything :)

Hospital visit 16th August

2011-08-17T21:50:00.001+01:00

Lewis had his endoscopy and tube change yesterday, results of the endoscopy are that yes his fundo is too tight!! At last, a year since he had the fundo done and we thought something wasn't right not long after, finally have an answer!! Only thing is now his consultant wants him back in within 6 weeks to have a little operation so he can loosen it off a little, Only thing there is my section date for bumpyroo is 6 weeks tomorrow and this operation requires a couple nights stay! So not ideal being so heavy pregnant but we'll work something out! Ricky had to take him up for 7.30 yesterday morning as he was 1st on the list for the theatre, he went down just after 9am He started realising something was going on an was clinging to daddy :( daddy held him while he was put to sleep, I done it last time and never again, it's not nice x I had to stay home for lewis's new supplies coming cos of the hospital switching pump and feed suppliers, and for training on the new pump! His new tube is the 'mini button' much more discreet than the peg and means no more popper vests to keep it from dangling loose and getting caught on everything, just trying to get used to having to attach the feeding set on and off whenever we need to feed him and he's not keen on me fiddling round with it but hopefully he'll get used to it cos it's hard to attach the set when he's wriggling away and trying to kick or push me off! Quite paranoid of the button coming out as I've not had training to put it back in yet! Oh and the new feeding pump is fab, a little more modern and a little less 'manual' consultant wanted Lewis to stay in last night, but after a little bit of treated like we were stupid n being patronised I was determined he'd be coming home, he didn't have any surgery, was just 2 little procedures n we were told we couldn't take him out the ward, yeh you try containing a hyper 21 month old to a tiny room and cot, while I massively pregnant try n sleep in a tiny camp bed when it was totally unnecessary for him to stay! Consultant said it was cos he wanted a night feed on the pump observed as there had been some problems with the buttons, but told him I was willing to have him on the pump for just a few hours n then get up n down the rest of the night to bolus feed, he was happy with that n so that's what I did, still got more sleep than I would have in hospital and had my own bed!

Hospital tomorrow

2011-08-15T18:00:00.001+01:00

Not long after I wrote that post this morning I got a call from the hospital saying there had been a theatre cancellation in the morning and we can have it for Lewis! So he's to be at hospital for 7.30 in the morning and is in for a morning slot, he'll have a camera down his throat to look at everything on the way down and to check if his fundoplication is a bit tight, if it is they'll loosen it a little. Lewis will also be saying bye bye to the Peg Gtube while he's in theatre and saying hello to the more discreet mic-key button it he may get the mini button but I've told Ricky to ask if he can have the mini button as people keep saying it's a bit better, Ricky has to take him in the morning as I gave to wait home to take delivery of lewis's new feeding pump and new feeds (our dieticians has changed suppliers, so we need to get whole new kit of new suppliers things, pump, giving sets, feeds etc) not only do I have to wait for that but also some1 from the new suppliers coming to do the pump training with me, even though the dietician showed me the new pump we'd be getting and how to work it and it's pretty much the same way it works to the 1 we're used to, but nevermind, n we can't reschedule as it was a nightmare arranging the both as it was, in-between my hospital appointments, lewis's and nursery, so decided it better for Ricky to go with Lewis and that way u don't have to take Lewis into theatre and hold him while he goes under, I did it the last time and it was just horrible and so upsetting, reminding me so much of the last baby I held that was so still, our wee Nathan :( so then as soon as I've done all that I'll have to get Ricky to leave Lewis to come and get me, he's staying in for the night so hopefully I'll be allowed to stay with him.

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Day to remember :) 11th August 2011 he swallows :)

2011-08-15T11:12:00.000+01:00

Lewis is getting on great at the nursery, he loves it, and most of the time when i pick him up they say 'he tasted something today' or last week he was helping make angel delight and she said he had his paws in it before they could it to the fridge lol that's my boy, anyway, it never goes beyond tasting. BUT on the 11th at home, he ATE half a wee yoghurt, he actually really ate it, swallowed it and everything, the pot was empty, he squeezed every last drop, so he ate and swallowed half of it and the other half was all over his face, his highchair and his hair lol, i have a video i'll have to put it on somewhere so i can put it on here but haven't time just now as need to go get ready to pick Lewis up from nursery. i was soooooo proud of him, we were really hoping this was him turning a corner but sad to say he hasn't done it again, just makes a mess with everything but not actually eating, still though we KNOW he can :)

He's such a proper little boy and his speech is just great, he's running around like mad and he's just nuts, to think we were told he'd never play football or run around with the other kids, pfffft try telling Lewis that :) hopefully once his wee sister is here he may pick up a thing or 2 about eating from her, talking of which i have my section date :) princess bumpyroo will be here on the 29th September, the day after my birthday, best birthday present ever, the gift of our 2nd sunshine miracle baby :) have to run now will update with that video and some pics soon.

Swallow and empty study

2011-07-19T12:18:00.000+01:00

Lewis had both these done on the 11th, was a quick visit to xray for them and as he was so well behaved they didn't take long at all. Ricky had to take him into thd xray room while u sat in the waiting room (couldn't go in cos of bumpyroo)I sent him in with questions to ask about etc and to watch the screen and see what was happening to the barium, bug typical man, came out and didn't have a clue, didn't ask anything either SJ we have not a tiny clue how it went and will have to wait till we get an appointment through to go and chat about it, who knows when that will be. We're also still waiting for the appointment through for Lewis to go get the camera down his throat and to have his Gtube changed!

Now he's so great on his feet he has started concentrating more on his speech and has a massive range of proper words now, so all round hex catching up in everything brilliantly :) he's such a character and I know I keep saying that but he is, he's just a lovely, lively, smiley, giggly wee boy.

Not sure if I mentioned before about his getting a referral to nursery from speech and language? She told us it was like 6 month waiting list and this particular nursery was so hard to get Into, hence needing referrals to get unto. Well I think they must have jumped the queue for Lewis cos after about 2 weeks from the referral going in we had a letter offering him 3 sessions a week, I don't think I'm ready to let him go yet but I know he'll love it and the main hopes with him going are that he may be more encouraged to eat when he sees other kids doing it regular. He has his induction On the 26thAnd he'll go Monday's, Tuesday's and Thursday's, 9am till 11.30am, it means we have a massive hassle of changing his whole feeding schEdule as I feed him at 11am and 4pm cos he sleeps after his feeds if we feed him after 4 he's late to his bed at night which means the pump is late going on and with him needing to get earlier starts for nursery he would end up falling short on his feed/calories, maybe nursery could be a bit flexible on his session times, I'll ask when we're in for induction.

Positive Hospital Visit

2011-06-24T22:59:00.000+01:00

So Lewis had the clinic today, we seen a different consultant, he was FAB, gave us a decent answer to the question we've been asking for nearly a year regarding the mucous Lewis keeps bringing up, didn't fob us off like they always do and after a chat about that and various other issues he has booked Lewis in for 4 small procedures, 1st will be a contrast/swallow study to see how big his stomach is and how much he can handle in it, 2nd will be an 'empty' study to see how quickly his stomach is emptying it as he suffers constipation a LOT and so they have concerns there may be a blockage, 3rd he is having a camera put down into his throat to have a look at his airways and throat and to have a look at that side of the fundoplication as they think it may be a little on the tight side and if it is then they'll have a little wiggle at it to try and loosen it slightly, 4th while he is asleep having the camera procedure they are going to remove his Gtube and replace it with either the mic-key button or the new mini button which they are using more and more, we were hoping he'd have his tube changed today but agreed it best for Lewis to have it done while they have him asleep anyway, so hopefully this will all be in about 3 or 4 weeks time and he should only be in for the day, think i may see how we go about having this man be Lewis's new consultant lol i am so pleased that at last someone has finally listened to our concerns and seemed concerned over it himself and took it upon himself to do what needs to be done for Lewis.
They also seemed a bit concerned about the 'dent' on Lewis's side, where they removed muscle for his repair operation as it seems to be quite deep now so off we went to medical illustration to have photographs of it taking so they can keep an eye on it.
They are pleased with how he's growing and with his weight gain, according to their scales he is now 1 stone 12, but not sure how accurate they are as we always go by the scales at the health visitors and he gets weighed naked there and today he had nappy, jeans and tshirt on but am sure he's not far off it anyway. Oh and as for the feeding we are now at 60 mils twice a day :)
He is not just walking around now, he's running, and also walking outside with his reins on cos am scared of him falling lol, he likes to just walk everywhere it's so good to see, oh and to my absolute horror he can get ALL the way up our stairs, silly daddy left the stair gate open earlier and he was gone just 2 seconds and i found him half way up the stairs, i was horrified BUT on the plus side i don;t have to struggle carrying him and a big bump up the stairs now, so at bedtime when i said time for bed he took himself to the stairs, with me right behind him obviously he got all the way up without any help, he is a little monkey.
I've been really struggling for various reasons lately but Lewis sure was sent to keep me going my little sunshine warrior hero <3

Update

2011-06-16T12:49:00.000+01:00

Lewis is doing great, he has become an expert at walking very quickly due to all his practice, all he done was walk up and down and round and round the living room all day long for a few days, he is great on his feet now and wants to be on them all the time, so we bought him a wee harness so we can keep a hold of him and prevent any bad falls or anything, he doesn't mind being on them, for now lol he does hate being held onto though or holding his hand. So now he's mastered walking he's moved onto his speech which is coming on loads so we're hoping by the time the makaton board eventually comes he won't really need it he does have quite a lot of words but as he was concentrating on the walking he wasn't really using them very often, but now is. He really is our ray of sunshine, he was certainly sent to make us smile, he's just such a good wee boy very sociable and happy. Few things this week about SALT really peed me off but i won't go into that for now as really don't want to rant on here, all i'll say is he's my son and i know what's best for him and i do everything i can for him and no1 will make me feel otherwise and when it comes to decisions about him, then i'll be the 1 making them thanks very much. Just wishing at the moment they would all just go away and leave us be, SALT isn't (in my opinion) doing what she was sent to us to do, but instead poking into other areas that aren't hers to poke into, so wish people would either do their own job or bugger off and leave us be!!
We've been stuck on the feeding at the moment well till now i'm just about to push the last of his bolus witha n extra 5 mils in this 1 taking him to 55mil boluses, he's doing so fab with this, a huge improvement from taking only 30 mils, we've tried this so many times but failed but this time seems to be his time and he's readt this time, so here's hoping we reach our 100 mils goal in a couple months :) and also he is now putting a dummy all the way into his mouth but still not sucking it, just keeps it between his teeth, he gags on it eventually but still it's something. So proud of him for all he has come through and all he has achieved in his 19 months.

HE WALKS!!!!!!! :)

2011-05-28T13:05:00.002+01:00

yesterday at 18 months and 2 weeks and 1 day old Lewis walked, proper walked across the kitchen, then we had him walking up and down the hall, which is fairly long for a small person walking, he wouldn't walk off just by himself unless we encouraged him or set him off, till last night he was sat on his little toy rocking chair and just stood up and walked off lol, i was soooooo excited for him his wee face he was sooo pleased with himself and it's sooo weird having this tiny wee boy walking round....yes i said boy and not baby :( my baby is no longer a baby, he is officially a TODDLER :) (still not eating though)

But on the feeding front, i have started trying again to up his bolus amount in order to reduce his night pump amount, it will be a very long process, when we started he was on 30 mils 3 times a day, he wouldn't tolerate anymore, always made him sick and made him cry cos it was so uncomfortable, so to cut the long story short i cut out 1 of his boluses during the day so he now only gets 2 feeds a day at 12pm and 5pm, with the larger gap inbetween he seems to tolerate more, we started off small just a couple mils at a time increase, anyway in the space of a couple of weeks he is now up to 50mils at both his boluses, haven't been able to reduce the night pump as yet as his increases aren't big enough as he was suppose to get 100 mils through the day before but would only take the 30 mils at a time so was just 90, but now he's on the 100 a day, so are where we're supposed to be at, but taking 50 mils at a time is huge for him, but we are having to feed him very slowly till he gets used to it, once we're able to speed it up a little to a normal pace then we can think about upping it a couple of mils again and then can obviously reduce the pump at night accordingly :) small steps and all that, he's doing great :) still has the mucous problem though, was going to bring it back up again at his next appointment, whenever that is, he's due back next month but as yet no letter so think i'll have to get chasing it up.

Oh and speaking of Night pump.....for the 1st time, Lewis managed to disconnect his pump from his Gtube last night, and wasn't till 5am when he woke up crying and i went through.....OMG the cot was covered in his feed, Lewis was covered in his feed, it was ALL i could smell and it's horrible, so had to get him up, strip him clean him down and pop him in our bed, luckily Ricky was working last night or don't know where i'd have put him lol, then i had to strip the cot, clean the cot and then the mattress, it was soaked through 1 big patch, so had to get a towel and put it on it then lean on it so i could soak up as much as it would, then scrub it, it's drying out now so just hope it doesn't smell else we'll have to buy a new 1 so will see how it goes. Anyway, Lewis hates not being in his own bed, he slept till 5.30am so he had about 15 minutes in our bed, then he just kept moaning A LOT but i couldn't give him what he wanted cos was no mattress or anything in his cot lol, so listened to him moaning and crying from half 5 till Ricky got in at 9, even the cartoon channel didn't distract him, all he wanted was his own bed...grateful for that i suppose, i guess a lot of kids cry to get OUT of their cot not to get IN it lol.

We also have some other good news from yesterday i'd just like to share, we had our big anomaly scan (we had a pre anomaly 3 weeks ago) and we are having a perfect, HEALTHY little girl we are just over the moon at the fact bumpyroo is healthy, this is our 5th pregnancy and no healthy babies and only have our CDH'er Lewis with us, we were told all looked well 3 weeks ago but i didn't believe it as it was with a new consultant i didn't know, but this time i was switched to another new consultant, she is THE best there as she trained with the fetal medicine unit at the other hospital, we spent sooo much time in that unit both when pregnant with Nathan and having his HLHS confirmed etc and all through our pregnancy with Lewis so there was no doubt in my mind when she said bumpyroo was healthy, so glad we seen her now as i think if it had been the other new 1 i had last time i still wouldn't have believed it :) so there Nathan and Lewis will be the proud big brothers to a beautiful little sister :)

STEPS!!!

2011-05-25T11:59:00.001+01:00

He did it he took 2 steps the other day! He was soooo chuffed with himself, maybe my over excited reaction egged him on because he did it again, and yesterday he walked the length of our sofa over to the chair which is next to it, walking alongside so he grab on if he needed to but he didn't :) so proud of him, he just doesn't quite get the fact he could walk across the living room if he wanted to, he still lacks enough confidence to go completely solo but he won't be long now :) his speech is also coming on and he can say certain things in the right context, we're still going with the mackaton signing with him and are now recording every episode of 'something special' he loves it and there's lots of signing on it too :)

He CRAWLS :)

2011-05-17T21:19:00.002+01:00

Yes he did, he really crawled :) yesterday when his daddy nipped out, he was just sitting on the floor then leaned forward onto his hands which he's done loads, but went over onto his hands and knees, which he's also done as that's the position he gets into to sit up from lying down, i seen him out the corner of my eye, i seen his knees moving so i turned to watch and he crawled about a foot then turned and sat on his bum :) needless to say i was VERY excited and he loved my excitement so proceeded to do it again while laughing, and then i was doing it with him to encourage him to move a bit further and he did, he crawled the length of our living room :)

Funny thing is the physio lady was out in the morning and she said he probably wouldn't crawl now as he's found his bum shuffling to get him around and will be walking very soon so would probably never crawl as wouldn't need to, well i bet he heard her and just had to be his little defiant self :) at 18 months old our warrior crawled, we're just so proud of him and he couldn't wait to show daddy when he got back in :)

we had the SALT back out also yesterday, after being AWOL since october, never really touched upon his 'non eating' just asked what he will eat etc which is nothing, told her about his frustration at not being able to communicate as he has a very lot to say but can't and so gets frustrated easy, she's going to draw him up his very own personalised Makaton board so we can learn to sign with him, he knows a few already but she's going to draw us up words that are personal for him, she said normally it would be food words but as that doesn't apply to Lewis it won't be any good, so i'm looking forward to being able to communicate more clearly with Lewis and hopefully ease his frustrations, well some of them anyway.

He is showing much more interst in food, still won't touch or eat anything but is straight to us if we have something, trying to put his face in it to smell it and want's to just poke at it, but not hold it or touch it properly and won't taste it, just shouts NOOO and shakes his head if you ask him if he wants a bit.

Still in amazement at the difference his physio boots have made and the Physio women was really impressed with his progress, she says he probably won't need a 2nd pair of special boots but rather just some special insoles for normal shoes. He keeps giving me heart failures with his shenanigans though, he can climb up onto his little rocking chair thing and onto the top of his toybox at the windowsill AND get himself back down, which is his new trick lately and i keep thinking he's going to fall. He can climb onto his little ride on car by himself, found that out when he appeared from the side of the sofa sitting on it and then scooted across the floor on it with a big cheesy grin and we're like how the heck did he get on that lol, and now pulls himself up on his walker and walks along with it, he came all the way to the kitchen from the living room all by himself today and he is cruising like a trooper around EVERYTHING :) he still lacks some confidence but won't be long till he's walking around being me all by himself :)

Sitting from Lying (17.04.2011)

2011-04-17T22:12:00.001+01:00

his trick of today (seem to have new tricks everyday lately) :)

Make an on-line slideshow at www.OneTrueMedia.com

Pics

2011-04-17T21:48:00.009+01:00

1st pic is when he 1st pulled himself up to sitting and then standing in the cot, look how chuffed he is lol

2nd is when he 1st pulled himself up on the radiator to look out the window

3rd earlier today, Lewis is definitely trying to crawl :)

4th he pulled himself up on the hall radiator

and the other 2 are just some cute extras :)

Slow Down Lewis :)

2011-04-11T23:16:00.003+01:00

i am absolutely AMAZED at the huge difference these boots have made in such a short space of time, in the space of just a week, Lewis has been 'cruising' around the playpen and pulling himself up on it, giving him the confidence to pull himself up on anything and everything, his favourite is to pull himself up on the radiator in the living room and stand looking out the window, watching the kids outside playing, he is itching so bad to get out there with them :)
when he has the boots on they are helping his balance so much, you can see the difference when he has them off and can actually see how weak and soft his feet are, he's practicing at trying to let go of the play pen when he's standing up holding onto it, and i caught him today working out if he should take the 2 steps towards the tv even though he had nothing to hold onto, i knew he'd fall straight into the tv unit so had to discourage him trying that, he's just not quite THAT balanced yet, but 1 thing is for sure, he won't be long till i turn round and he's toddling behind me not holding onto anything.
so yeh what a week, i just get so excited for him, people may think it's mad as like 1 friend pointed out that 'normal' parents would be syaing oh so whats the big deal, my baby could do that at way younger than Lewis, but so what, Lewis is unique, he is STILL kicking CDH butt at 17 months old, such a long everyday battle but 1 he is determined to beat :)
oh the newest thing is now he can sit up from lying down if he has something to pull himself up on, like the cot bars, yay his tummy muscles are getting stronger :) funny when i put him to bed lying down, next thing i peek in he's sitting up, or even standing up! in his cot lol and i THINK he's actually trying to crawl, he's doing what he should have been doing like a year ago, he will now go onto his tummy and push up his hands and he wriggles his legs, which i think is down to his tummy muscles getting stronger and being able to cope with his weight on it a little more, he'll only do this for a couple of minutes but hey he has always absolutely hated being on his tummy, so yet another HUGE thing for him.

As for the eating...he likes to 'feed' me, he was giving me imaginary food the other day lol so when i gave him so real food, yep he was feeding me...and you could see he had his thinking cap on, thinking about every movement he made from pickin off a bit of the cheese to putting it in my mouth, so he deffo knows what to do with it, so we played a game, bit for mummy, bit for Lewis, excpet he NEVER goes past just 'pretending' he's eating it, he'll quickly touch his lips with it, then pulls it away and you can see him 'chewing' but still it's something and it shows he know exactly what to do, we don;t push him to eat anymore, we go with the thinking that maybe once he's a wee bit older and can understand a wee bit about food etc, plus the more you try to push him the more he 'runs' away from it, so i guess it's true what they say, he'll do it when HE wants and learns how to not when we want him to, the main thing is he is happy and loved and doesn't want for anything and that's the main thing for us :)
I will post some pics tomorrow of Lewis being a show off :)

New Boots and a scary announcement

2011-04-01T21:41:00.002+01:00

Well we picked up Lewis's special boots from the physio on Wednesday, they are so tiny and cute, also so very stiff, but that's the idea, specially ordered in through physio as they're much stiffer than any you could buy in the shops.

We're still weaning him into them and today was his '3 hours' in them, increasing an hour everyday. He's doing well in them and we can see a difference when he's stood up now his feet are properly supported.

Haven't really mentioned anything about his reflux for a while as we've been trying to figure out what's going on...he had the fundoplication in July 2010, which made a big difference and stopped the reflux completely for 2 months, then he started getting past it every couple of days, then it was couple of times a day and when he had his last consultant appointment in December all his reflux meds were stopped, then it started......he hasn't had a full nights sleep from about a week since the meds were stopped, we put it down to teething and he has had 4 big teeth pop through in the past month, but no sign of anymore for now, but still restless and crying on and off all night, he's still bringing up really really sticky bubble mucous at least 3 times a day, choking on it because it's so sticky and bubbly, then panicking trying to fight it and it ends up going down the wrong way, it's just aawful and can get really scary :(, his nappies are absolutely vile, as is his breath, sometimes he brings up his feed within a minute or 2 of getting it, sometimes he brings up the water we give him through his tube, so we're suspecting reflux again but more of a silent type as opposed to how it was before his fundo when it was milk fountains every single feed, he never seemed in any pain from it then, but now he does and he cries everytime he sees a syringe :( after he's been fed he just lies there like he's so full and looks like he's feeling really sick and uncomfortable but he only gets 30mils at 12pm, 3pm and 6pm as that's all he'll tolerate, he's on the feeding pump from 9pm till 9am, we're at 41 mils an hour as that's his toleration when relaxed and asleep, so he doesn't get very much 30 mils is nothing really and every 3 hours, it's like he's still on newborn feeds.

ok so the announcement......Lewis is going to be a big brother...again but better news so far this time, we're just 13 weeks and will have our anomaly slightly earlier in about 4 weeks time, absolutely terrified for that wondering what the problem will be this time, our 5th pregnancy and so far only have 1 survivor, Lewis xx but trying to just enjoy the next 4 weeks knowing that at this precise moment we don't know if anything's wrong, plus i picked up a beautiful wee heartbeat on the doppler 2 nights ago, so we have bonding on the agenda for the next 4 weeks :) have had a few scans so far and my plan of care is excellent and i'm under the best of doctors who listen to me and do all they can to 'help' xx

Some recent pics

2011-03-20T21:59:00.007Z

Just thought i'd share some recent piccies of Lewis :) the last 1 is of 4 special CDH 'babies' together at a meet i organised in February, it was a great day, so good to see all these amazing warriors together and hear their stories and i found it amazing just how very different each story was, but same amazing ending :)

FINALLY back online with proper net :)

2011-03-14T17:30:00.002Z

So a month and a half after moving our internet has finally been transferred, Never again will i try and transfer with Sky, it has been a total nightmare!

Lewis is just coming on so much since physio were involved with him, his left side is loosening up nicely, enough for him to finally get onto his own knees, physio said his left side was so tight it was stopping the full range of movement he needed to be able to bring his his legs round to do things like get onto his knees and get onto his feet, so it's nice to start seeing the results of the physio and stretches we've had to do with him at home. He has actually got onto his own feet a couple of days ago, but was a real effort getting his leg round to do so, but he done it once so YAY for physio.

He was fitted for his special boots, and we go pick them up at the end of the month, these will help give his feet the stability they need to be able to walk, will also help keep his feet straight and not turned in.

All i can say is YAY for physio and YAY for Lewis kicking CDH nad CDH related problems butts.

He's such a wee character, he is just so funny and such a good wee boy, we're so lucky, he's deffo been worth our very long wait to have a wee 1 here with us.

we now have a physiotherapist

2011-02-07T12:49:00.001Z

And about time too! I think it's quite ridiculous that he's been home from NICU for a year now and that's him just been referred to have physio come out! Anyway it went ok, she was really nice and really knew her job, she pointed out what we already knew, he is really weak around the diaphragm and tummy area due to hos surgeries, and also she asked if he had a lot of lines in his feet when in NICU (which he did) she said she could tell that he had as his feet are weak etc cos of how his feet are and the way they sit etc he's going to get fitted for special boots on 1st march n then we should pick them up a couple weeks later.
We've got some exercises to do with him which will help hime stretch his tight left leg and also his hips are a little splayed so the exercises should help bring those in a bit, we've to not encourage him on his feet till he gets his special shoes as we don't want to make his feet worse, good job he's happy shufflin round on his bum and doesn't complain. She's also goin to the get the speech and language (who went awol in october) to come back out.

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Inspired by my Sunshine Warrior :)

2011-01-26T18:06:00.003Z

Ok so today i done something TOTALLY out of character.....i registered for the women's 10k in May eeeeeekkkkkkkk what was i thinkin lol, but hey i can do this, i'm raising money in honour of the sunshine in my life, my beautiful brave wee boy, so i'm doing this for him.
Wish me luck :) here's the link http://www.mycharitypage.com/Haylz81/ if any1 wants to donate, all money goes to CHERUBS UK

Lewis is doing FAB, he's almost pulling himself up now, the physiotherapist is FINALLY coming out on monday, just to do with his foot and his hips are slightly splayed, can't believe they've not came out till now, he's 14 months old, should have been seeing these people since he came home from NICU, his weight gain is also still climbing nicely and brave wee soldier has 2 back teeth popped through and has never even so much as grumbled, think he takes after his mummy with his high pain threshold lol.

We're moving house YAY (on friday lol) much nicer house (it's brand spanking new yay) and a much much much nicer street, can't wait :)

New Year, new improved weight gain?

2011-01-07T14:37:00.003Z

Happy New Year!! i know it's a week in and so i'm a week late but been so busy xx
took Lewis for his 12 and 13 month injections this morning, but turns out he got another 1 too so that's him all jagged till he's 3 and a bit, he handled it like a man, unlike mummy! his daddy normally takes him but because of work i had to take him.
He also got weighed while he was there, since he was discharged from NICU he has followed the exact same line on his chart, that was after dropping low on it because of the feeding problems etc, well the past couple months he's been climbing up slowly, and today he's climbed again, he has gained an enormous (for him) 1lb 1oz in just 2 weeks, with the reflux and everything before he was lucky to gain that in a month! and he is now on the 50th percentile, i haven't seen that percentile since he was born, before it all started going downhill! so proud of him, as any CDH'ers will know this is HUGE for him, he is a little fatty as his height is a bit short (just like mummy and daddy) lol

Nothing much else to update on really, just had to share his brilliant miraculous weight gain lol oh also meant to mention that our chromosome reults came back saying we both have 'normal' chromos *sigh* obviously didn't want it be something, but didn't want it to be nothing either, no reason for having 4 pregnancies in a row ALL with problems, with 3 tiny lives lost and 1 little miracle who made it through his problems but robbed of his health, where's the fairness?

****i'm organising a CDH meet up in scotland (stirling) on the 12th february if any1 can make it, email me ****

Diaphragm Clinic Update

2010-12-20T21:25:00.002Z

When Lewis was discharged from NICU in January, we were told he'd go to the diaphragm clinic every month to start with, then it would go to 3 monthly, then 6 monthy then hopefully yearly, so he was discharged in January, we went to the diaphragm clinic in February.....and haven't been since....till now, so to say it's long overdue is an understatement, always been worried incase his lungs weren't quite growing as they should etc.......
so Friday he had Diaphragm clinic, got there to be told he didn't have an appointment....OMG yes he does and we're not going till he's had it!!!! we got seen lol, first visit was to the weighing and measuring area, pleased to say that since following the same percentile all year, he has now climbed up to the next one and his height is on par with his weight, so he's perfectly proportioned, he's underweight for his age but at least he's on the charts as a LOT of these babies aren't even on it, plus he's a wee shortarse like his parents :)

Next was Physiotherapist and Speech and Language Therapist (SALT), SALT is very happy with him apart from not eating but that's such a common thing for these babies so it's nothing out the ordinary for a diaphragm baby and they know that, she's going to get in touch with the SALT from where we live, as she seems to have went AWOL on us???
Physio also noticed what we have, he's flat on his right foot which is fine, but his left foot he ALWAYS goes on tiptoes, so she's referred us to physio where we live (which we should have been referred to when he was 1st discharged from NICU cos of the delay in things for him given that he was hooked up to life support so long! also another few wee exercises she gave us to do with him as he won't go on or near his tummy at all we need to learn him how to sit up from lying a different way etc, she's pleased with him every other way though and SALT is happy with his 'speech' and vocal sounds.

Next visit was to Xray, he was sooo good, didn't kick up a fuss when the sand bag was put on his legs to hold them down or when i had to hold his arms and head, he just lay there, it was over in seconds, not once did he complain about being dressed and undressed for every area, such a good wee boy. I will write about the Xray results in a second.

Next was in to see his consultant, he's happy with the shape of his chest and though it's a bit messed up it's only as much as he'd expect, the big dent he has is due to there being muscle missing as that's what they used to repair his diaphragm, we've to stop his final reflux medicine, well to wean it down first lol, i told him about Lewis still refluxing past his fundo 2 months after he had the operation, he says that's fine as it's only very small amounts, he said it's like a safety feature, he has to be able to get past it if he's ill and needing to be sick etc so of course he can still reflux through it but it is only a tiny amount and certainly not on the scale it was, that was BAD, then he brought the xray up on the screen so i went for a peek,

well it looks absolutely fantastic, both his lungs were squashed during the pregnancy and underdeveloped, no1 thought he even had a left lung, until he had his repair when they found the left lung was just a bud, so barely anything of it at all......so in a year, this wee bud has grown sooo much, the right lung is bigger than left still but it's not far off it....they'll continue to grow for another couple of years and if it continues to grow at the rate it has been then it will be close to normal, he said it won't ever be normal but it'll be soo close it won't matter :) the best news ever, they're so pleased with him, he's to go back in 6 months and he'll have his Gtube taking out and replaced with the more discreet Mic-key button (and a friend has found some fab wee covers for these) HERE xx Also he said the diaphragm repair is holding up well so no obvious signs of imminent reherniation, though he says that's not to say it won't happen :s

So that's the update, 1st time we've seen his lungs in sooooo long and they're doing fab, he's doin fab he truly truly truly is our MIRACLE sunshine warrior :)

MERRY XMAS xxxx

December Update

2010-12-10T11:29:00.007Z

So i'm not getting to update the blog as often as i should, but there's not so much happening in order to update so often, which is a good thing, no news is definitely good news as far as CDH goes.
well Lewis is now finally on the move, he's bum shuffling and can get wherever he wants to go, over to his toys to tip every single 1 out on the floorm, the chaos lol but it's great it's just the best thing ever to see him doing this, so funny seeing him 'bumming' along the floor xx
At least he has found a way of getting around, lack of upper body strength due to the surgeries means he struggles holding his weight on his arms, and also it's uncomfy for him lying on his tummy with a big old feeding tube poking out of it, plus i guess with his tummy being all misshaped can't be too comfy either. round the time he 'should' have been learning to get around he was in having another major operation so that set him back. better late than never though.

Finally the runs have stopped, like the day before we got his feed changed to try and stop it lol, he is now on Frebini which has a higher calorie content than the infatrini, so it means the volume has been cut a lot, which is great just what i wanted since he started throwing up past his nissen fundo, so back to the cycle of being fed, gagging, choking, bringing up feed, aspirating into his lungs, so coughing mucous up from his lungs trying to clear them ugh, hope so much he will be able to cope with the lesser volume of the new feed, therefore no throwing up past the nissen fundo, therefore no aspiration, wouldn't be called a rollercoaster if things ran smoothly though.
Talking of the new feed we had our 1st delivery of it this morning, not 1 spare bottle, they clearly don't take into account for spills etc or the fact that these bottle never have exactly 200 mils in them, so means what we end up short with come the end of the month i'll have to make up with his old feed which luckily i have some left, but that won't last forever either, we had this discussion when we 1st started getting his old feed delivered and after getting onto the dietician about it changed it so we'd have some spare, so here we go again!! stupid extra stresses we don't need and shouldn't have to worry about.

He has an appointment at Yorkhill on the 17th, for....wait for it..... the CDH clinic woohoo effin finally, the aftercare is bad, he hasn't been to the CDH clinic since february, 1 month after getting home from NICU, terrible. We're fortunate he keeps good general health though, he definitely has my immune system, both Ben and Ricky have been sick in the last couple months and neither me or Lewis has had anything lol, Lewis has had his Flu jabs this year but isn't to get the RSV 1 which i'm gutted about as we all know what RSV can do to these babies with delicate lungs, hell i know what it can do to a healthy baby after meeting a mum when we Lewis was in.
So as he's not getting the RSV then i'm not taking him anywhere we don't HAVE to go, missed the health visitor clinic this week, just not risking it, i should really invest in a set of home baby scales so we can keep an eye on his weight for the dietician.

So that's about it for now, we're making this xmas like Lewis's 1st xmas seeing as he was in NICU last xmas, so it'll be Lewis's 2nd 1st xmas this year lol and he's going to be very very spoiled :)

FEW BIRTHDAY PICS :)

2010-11-18T21:43:00.000Z

Happy 1st Birthday Sunshine....Dear Lewis

2010-11-13T09:47:00.003Z

we celebrated Lewis's 1st birthday, it was emotional and stressful lol just can't believe our baby is 1, well i say baby he's not so much that anymore either, Mr Independent is our Lewis xx

To my beautiful, amazing Sunshine Warrior, Lewis
my gawd i just love you so so so so much, i look back on everything you've been through this past year and my heart just bursts with pride everytime i look at you, you are my reason for getting up in the morning, your constant beautiful big smiles just make my life worthwhile. You are our massive ray of sunshine, shining through our darkest days, our little miracle. I believe with everything that's happened to us, you weren't supposed to make it either, but despite ALL your odds YOU DID, YOU KICKED CDH BUTT. that in itself is truly amazing.
Watching you this morning sitting playing with your new toys chattering away as if you're having a full blown conversation with them, dancing and singing to the musical ones, you ARE here and you ARE OURS and you ARE HERE TO STAY, i don't think i've ever believed that you've been here to stay, no1 knows what the future holds we know the risks of everything, that's what makes you special, and everything you've been through is what makes you who you are. you're such a stickler for your routine, the routine you've been in since NICU still stands today, through your own choice, you just won't have it any other way.
You won't be held and comforted when you get upset, because you got used to dealing with it by yourself because we couldn't lift you and hold you. You like and need your own space and bed when you're tired, because you got used to putting yourself off to sleep because again we couldn't lift you and rock you. You're so independent i don't feel like i do anything for you, it breaks my heart, But you're very happy, always have been, always smiling through everything.
I have no idea how we got through our pregnancy with you knowing how very poorly you were and knowing the battle that lay ahead for know, nothing could predict your survival, no1 knew how you would do till each day came, we didn't think you'd see your 1st xmas last year never mind your very 1st birthday this year. BUT YOU DID IT, you fought the battle and won :)
mummy and daddy love you soooooooooooooooooooooooooooooooooo much wee man

This was our song through the time i carried you

I can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"

Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on

'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith

And this was your song when you were born

You got wires, going in
You got wires, coming out of your skin
You got tears, making tracks
I got tears, that are scared of the facts

Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes

You got wires, going in
You got wires, coming out of your skin
There's dry blood, on your wrist
Your dry blood on my fingertip

Running, down corridoors through, automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own
Looking at you now, you would never know

I see it in your eyes, I see it in your eyes
You'll be alright
I see it in your eyes, I see it in your eyes
You'll be alright

Alright

Running, down corridors through, automatic doors
Got to get to you, got to see this through
I see hope is here, in a plastic box
I've seen christmas lights, reflect in your eyes
down corridors, through automatic doors
Got to get to you, got to see this through
First night of your life, curled up on your own
Looking at you now, you would never know. ((((((so true))))))

he's EATING (well of a sort but still)

2010-11-04T20:13:00.004Z

we're going through another 'eating' phase, it started with choclate buttons, he was taking little bites of them and actually chewing and swallowing, NO gagging or choking on it in his mouth, he won't be fed and he's not putting everything into his mouth just select things, gave him a chocolate digestive the other day (just 1 of many things we just give him to 'play' with) but he decided he was going to bite pieces of it then spit them out, so even though technically he wasn't eating it we just say he was 'eating' it, this is huge.
still not eating likes of dinner when it's put to him, i usually just give him some of what we have to sit with but he NEVER puts it near his mouth and still isn't, but again today i gave him a plain biscuit and yep again he was biting pieces off it and then spitting them out, it's a start. let's just hope he keeps it up this time and nothing sets him back :)

It's his 1st birthday a week tomorrow OMG i can't believe it, our little sunshine will be a whole year old, this time last year i was sitting counting down the days to going in for induction, dreading it with every bone in my body, wishing i could just keep him safe inside me forever, terrified of losing him, not knowing what each day would bring and even knowing that he could be doing well 1 minute but doing really bad the next, terrified to start the rollercoaster ride, but look at him now, he's a wee superhero, an amazing fighter :) we couldn't be any more proud if we tried, yes he's behind with weight due to him having severe reflux for 8 months, behind with some other wee things but he's soooo bright and clever, he's defo been here before, he now has 6 teeth with i'd say another 4 on the way but he just takes it all in his stride, after everything he's been through a wee thing like teething isn't bothering him.

His vocabulary is amazing too he has soooo many words and can put a few together, just love him so much.

a wee update on the last post where i mentioned about the ectopic thing, well in the end it turned into a full blown rupture at home, i recognised the signs n got Ricky to ring in and tell them i was coming in, they said if i was still in pain in half an hour to go in, but i knew the score, told Ricky no tell them i'm coming NOW, so off we went, this is pain like no other, i'd go childbirth/c-sections any day to this. rushed to theatre where i'd lost a litre of blood into my abdomen and another litre during the operation, also sad to say i lost my left tube. then was told afterwards i would have been dead within half an hour if i hadn't gone in, so am very lucky to have recognised the signs and not listened to them saying come in half an hour.
we have an appointment with our consultant on the 11th so i'm hoping once i present him with ALL the facts he'll agree to push for genetic testing, not just cos of the ectopic, but because we've had 4 pregnancies in a row all have something wrong, 3 losses out of this. Also other reasons like family history with the heart problems, not my place to say too much but i've had 2 nieces born into heaven this year, both with severe problems, so there's a link, we just need answers.

Spongebob's Biggest Fan

2010-10-14T19:52:00.006+01:00

Lewis LOVE LOVE LOVE LOVES spongebob squarepants :)

pics to go with below post

2010-10-13T21:18:00.009+01:00

Here's the update, good and bad

2010-10-13T20:13:00.002+01:00

so a lot has happened in the last month, mainly for me but about that later....
well on the last update i mentioned the mucousy choking and said no reflux with it so not too concerned, well i should have known the mucousy stuff was to do with his reflux, cos yup he's been refluxing, not after every feed but at 1 sometimes 2 out of his 3 daily boluses, we thought it was to do with that he was getting too much milk at his feeds, so i had to consult with the dietician about changing his feeding regime, not much we can do with it because there's a certain amount of calories we HAVE to give him and he's not good at all with large volumes, so he's now on the pump for 10 hours at night, subject to change as he's still having refluxes, guess it's the wrap coming a bit loose who knows, only a month to wait for his checkups at hospital, but will be mentioning it to his doctor when we take him in, he's got what we think is a touch of eczema and still has the runs, now tho they're back to how the were just after his fundo and smell so vile.

He's also teething like mad at the minute but so far only 1 more tooth has popped the surface so that's him now got 5 teeth, 1 of his top teeth is looking like it's gettin ground down the corner with him grinding his teeth but i have no idea how to stop that.

He's still not eating a thing either, i came across a forum for tube fed babies and they all seem to swear by this 'Graz method' it's a feeding clinic in Austria, but VERY expensive :( but with a high success of weaning these tube fed babies off their tubes in a few weeks, i am liking the sound of it but will have to do my research 1st, the cheapest option is to do the method via email, apparently it's just as successful, so if any this will be the option we choose, but will have to see about raising the funds, but obviously i will research it A LOT 1st.

So that's about it to be honest nothing much has been happening with Lewis, he's coming on so much and doing everything he should be except eating lol and growing a LOT, it's now 1 month till his birthday, i just can't believe it at all, this time last year sitting absolutely terrified that time was getting closer and not knowing what lay ahead and no just look at him, he's amazing he really really is, my wee rock this past couple weeks, which leads me to the bad news,

i'm not going into too much detail as it's Lewis's blog etc but it's what they call 'pregnancy of unknown location' static bloods say it's there but it's not surviving and it's not letting go either, and they can't locate it on scans, it's not been causing problems but needs to be removed :( had an injection of methextrate on monday which breaks down cells, so just waiting on things to happen now and hopefully it'll all be over soon and i won't need a 2nd injection, so i had been told last week baby would already have passed, but then told on monday that as the bloods are static it's still there, so i guess when the levels start falling we'll know it's really gone, so that's 3 wee angels for us now :(

Will Update Later

2010-10-12T11:38:00.003+01:00

Have decided to reopen the blog to the public, i was looking through the feed thing and discovered people used to come across my blog by googling for various CDH things and google would direct them to certain posts of mine relating to what they were looking for, so i'm glad my blog 'helps' people.

i know we're well overdue an update but lots of things been going on here lately so i promise i'll update later today and add some recent pics of our gorgeous Sunshine Warrior.

Hayley xx

highs and lows

2010-09-09T11:26:00.004+01:00

well last wednesday (1st) Lewis was back at yorkhill for his post op check supposedly with his consultant, who we seen for like 2 minutes!!! no1 is concerned that Lewis STILL has the runs, which he's had since his operation, his consultant took 1 look at him said oh he looks great, we'll schedule him to come back to the diaphragm clinic in November!!!
So i'm not happy but what can i do, he's been the diaphragm clininc only once already which was in february, the month after he was discharged from NICU and we haven't seen his lungs or had his chest listened to or his diaphragm checked out since, not impressed.
Oh and he passed his hearing screening today, i knew he would though :)

He's still not eating either, in fact i think the situation is getting worse, he only has to touch some foods and he's gagging and retching at them nevermind if it actually touches his lips, this is so frustrating, he's just not interested in food, he WILL put anything in his mouth as long as it's not food. I'm just at a loss with this now, i have no idea what to do or try next and SALT is no use either, so what now?

Lewis has been gaining weight recently, yesterday was the latest weigh in, he has put on 5oz in one week, how fab, that's the most weight he's ever gained in a week, sometimes didn't even gain that in a month, but can feel the difference in him now he feels so heavy and solid, though he still isn't on par with his height and age but he's doing fab, apart from the past week or so his mucousy choking episodes are back though he's not refluxing so we're not concerned about the nissen, but again no1 seems concerned sooooo........

Can't believe Lewis will be 1 in two months time, that's so scary, where has the past year gone and look how far he's came :)

2 top teeth :)

2010-08-30T11:52:00.002+01:00

just a quick update
well the other top tooth made an appearance the day after the 1st one and he has now discovered how to grind his teeth eeewwwww i hate it it's horrible and i have no idea how to make him stop it :s
he's still not eating either, can't believe he was doing so well just after he got out of hospital as well then went right back to not wanting anything near him, SALT women said on thursday that she doesn't have anymore suggestions, can these people really be sooo rubbish? i mean they've only ever gave us 1 suggestion, and just repeated it every month when they've came out and now say they don't have anymore suggestions, wtf? there HAS to be more? ah well back to google for me :s she doesn't agree with giving him lots of different flavours, but health visitor seems to be in a bit of a disagreemenbt with her, SALT wants us to only give lewis baby rice and porridge, he doesn't like either has never shown an interest in it, my opinion is he needs to experience lots of different flavours (and hope he discovers somethin he likes) and also lots of different textures, who knows, she did say we could be looking at him going to school and seeing other kids eat before he does, yeh she's very optimistic...NOT, so looks like i'm on my own again with this.

well the feeding pump is going great, what a difference, he's only tolerating 65 mils an hour over 8 hours and has breakfast, lunch and dinner times (to play with food seeing as he won't eat it) at the same times as us then we do his bolus feeds, we would like him to be on more throught the night so we can reduce the amounts he gets at his bolus feeds during the day and hopefully he can get hungry and experience that and learn that food stops the hunger, well we live in hope something will work and i figured the best place to start would be to have him getting hungry.

so that's about it for now, he has his post op checkup on wednesday and hoping we can persuade them to do his CDH checks while we're there as they haven't been done since february!!! just be nice to see how his lungs are doing.

Feeding Pump Bliss

2010-08-24T08:26:00.003+01:00

well on Friday morning i took delivery of a nice shiny feeding pump and a box of giving sets :) then in the afternoon i had a visit from a man who trained me on using it, i will just say WHAT A HUGE DIFFERENCE this is making, had my 1st whole night sleep in forever and it's better for Lewis as well as before, with his tummy still tender he was waking up during the night as we fed him and he was crying etc but now as it goes in slowly over 8 hours he barely knows and so he's back to the way he was before his fundo, sleeping right through, we started off on friday night with 30 mils an hour then night night up to 40 then next 50 etc, last night he was on 60 mils an hour, therefore reducing the amount he needs through the day, so now he'd down to just 3 milk feeds through the day at proper meal times, breakfast, lunch and dinner, introducing him to the world of 'normal' feeding times, we'll slowly get up to so much through the night i'm not sure what the target is, so that he'll actually feel hungry through the day, which we hope may help in the learning to eat process, so he will eventually learn eating satisfies hunger, i'm so glad i pushed for this, it was all my idea just has taking some time to actually get it to happen and glad every1 is on side and agrees with my plan, let's just hope it works :)

Yesterday Lewis's top left tooth made a little appearance through the gum and i think in the next couple of days the 1 beside it will be through as well, if it isn't already this morning, i'll have a look when he gets up, i'm sure he has a couple coming on the bottom beside his front ones as well, but to be fair he's taking it all in his stride, it's not bothering him at all, a friend said this is because in comparison to everything he's been through already this is nothing, so true.

He wanted his bed earlier last night so bathed him a bit earlier and put him to bed and he's still sleeping now at 8.30am so had 13 hours so far, lazy bones :)

We were away meeting some fab SANDS ladies on saturday and the above picture is Lewis table licking lol so funny, weird how he'll lick and chew on everything except food!!

Back to Not Eating

2010-08-16T08:35:00.003+01:00

so before Lewis was born i heard the phrase 'CDH is a rollercoaster' a lot, well isn't that just a huge understatement, just wish things could be easy for once, afer his wee spell of eating everything, we thought that would be it, surely now he knows he can enjoy it he won't look back, WRONG!! he got my cold, he only got it mild but it was enough to put him off his food....he stopped eating and hasn't eaten since, he's not interested whatseover, back to going mad everytime you dare put somethin near him.
He's a bit more back to his old self now, so he's getting there slowly but surely
before we left the hospital we were told the community nurses would be out 2 days later, but nope they never came and that was nearly 3 weeks ago now, he also never gained any weight in a month, but we put that down to he was still being sick then he was in for his operation and he probably had put on weight but with all that he'd lost it again,
at the minute he's still quite uncomfy when he gets a lot of milk put down his tube, so we're sort of been bordering going back on 3 hourly feeds, but managing to JUST get by without doing that for now.

we're off on saturday morning to go meet some lovely ladies i met through SANDS just after losing Nathan, and we pick our new shiny car up on thursday can't wait :)

good stuff and bad stuff

2010-08-06T13:17:00.001+01:00

well the good news is Lewis got home on the 28th July the bad is he's still been showing discomfort etc, he's miserable all the time and still has the runs poor wee thing, so he's being bothered by the top (teeth) middle (tummy) and bottom, he just moans all the time and randomly screams here and there, all through the night as well, just want to take him back and tell them to undo everything they done so i can have my happy smiley little boy back, hate seeing him upset and miserable all the time xx
we also have other good news on the Lewis front, since a week ago today he has been eating, and seems he just wants everything in sight, even though he's not eating very much he really goes for it when he does, and he's now decided he does like the little yoghurts after all and can devour half of 1 of the little pots, all this off a spoon as well, so suddenly and out the blue, he used to just go nuts whenever a spoon went near him or whenever food went near him, so thinking it was just a 1 off all week but he's eaten somethin everyday for a week, he's only taking like a teaspoon all in then he's knackered but it is hard work for him having to use muscles he's never really used before, so hopefully with some more practice every day he'll get better and start eating more.

Even more proud of him he's been through so much, he's just my little hero :0)

Feelin better today

2010-07-24T14:39:00.002+01:00

lewis is much better today compared to yesterday, he's had the continuous morphine stopped but is still connected to it incase he needs a wee boost, they're stoppin his epidural tomoro as well, and today they've started givin him stuff through his new tube into his tummy just startin off with dioralite and i think tomoro they're startin to give him milk then we'll try and get his feeds built back up to what they were, got a wee smile off him last night which is the 1st since before his op and daddy got him a spongebob balloon from the wee shop seein as he's spongebobs biggest fan i don't know how he's managin without his daily fix lol xx slightly more smiles off him today which is great to see, he's still in some pain and specially when he tries to cough etc, can't wait for him to be over this and back home such a brave wee man xx

Lewis had his fundo yesterday

2010-07-23T14:18:00.002+01:00

Ok so i put the blog off public view but have put it bk on while lewis is in hospital, we came in on wednesday afternoon and lewis went to theatre on thursday mornin, i took him in and stayed with him till he was put to sleep, that was sooooo hard, he was so full of life 1 minute n the next minute there was nothin, broke my heart that did reminded me of holdin nathan, so still :(
So he was away from us about 5 hours his consultant filmed his operation, he was pleased with how it went though they had to open him up as keyhole wasn't possible as his insides were just too stuck together, he managed to unstick everythin from his tummy but tore his spleen in the process but managed to stop the bleedin quickly, everythin will just stick bk together again, he was happy with how the fundo went but as he had to open his repair scar they couldn't give him the mickey button feedin tube so he's just got the peg
He had to go to high dependency unit after his op and was in a lot of pain when we got there, he was screamin so bad and his heart rate hit a very scary 220 it was just awful and heart breakin, he never cries he's always so happy, he had an epidural placed after his op so they had to give him a top up of that am upped his morphine and that settled him. As he was in high dependency i wasn't able to stay over with him so reluctantly i had to go home for the night.
When we got bk in this mornin lewis was looking much better, though i won't be happy until i get some of his usual smiles out of him, he got moved from high dependency to a normal ward this mornin, still on morphine and will have the epidural in till sunday then it has to come out and may have his morphine turned down a notch tomorrow
Thats pretty much it for just now he just has to rest and heal and we hav to get used to the new feedin tube and also the fact his scar from before is now longer as they had to open up his old repair scar and extend it a bit. He'll probably be in for another week and we have to work on buildin his feeds up as at the moment he's only gettin a little water every few hours. Will post a couple of pics xx the 1 in the shirt and tie was him on wednesday before we left for hospital, it was a rumour goin round the nurses about the cute smiley baby in the shirt and tie so they were all coming to see him when we arrived lol the other picture is lewis today xx

Lazy bones

2010-07-10T10:23:00.000+01:00

it's 10.10am and my gorgeous lazy bones is still asleep, normally we're up at 8 so he's slept an extra 2 hours, he was awake briefly while i was doing his feed lol he's allowed though he seems to have got a touch of his daddy's cold, it's not as bad as we first thought yesterday but it's still there, i'm feeling it myself, i just hope his doesn't develop and he can get rid of it soon, don't need this hanging over him in the run up to his fundo.

oooooohhhh Lewis has a new word for the last couple days it's....hiya :), he's got a great range of vocabulary for his age :)

the S+L women was here again on wednesday, she was supposed to do some observations of Lewis of the way he is around food etc, but nope never done it, was here like 15 minutes and left, she's lovely though, but i just don't feel like we're getting enough help with this therapy thing but i don't like to complain, so have decided to just wait it out till the end of the month till Lewis gets his Gtube and when he's recovered etc we're going to try and come up with a plan of action, whether that involves S+L or not i don't know, will just have to wait and see if it actually becomes of any help to us or not.

it's been agonising for us to decide whether or not to go ahead with the fundo, the acid in his reflux is well controlled with medicines so he's not in any discomfort, he's ALWAYS happy and smily, so there's no obvious signs that he NEEDS to have the fundo done BUT we know he's aspirating badly, which is dangerous, so on that basis this is why he needs the fundo, all the side effects from it though are what scare me, it could make him miserable and suffer in various ways and we don't want it for that reason, but ultimately it boils down to the aspiration, knowing just how serious that is in that it could be fatal, so Lewis will have his fundo on the 22nd july, to any1 reading this i'd be grateful if you caould send lewis lots of good vibes for a quick recovery and minimum side effects from it :s

while we're there, once he gets his Gtube and we get to speak with the dietician i'm going to see if we can get a feeding pump for the night time, i'd like to try and give him most of his daily calories throughout the night, so that he can be free during the day to actually feel a hunger and gives him the chance to 'eat' just hope they agree, at the moment he's fed every 4 hours, he's getting packed full every 4 hours, he doesn't know what hunger is, never has

Tummy Time

2010-07-06T16:30:00.001+01:00

yay looks like we've had a wee breakthrough, he's currently lying asleep.....on his tummy, on the floor, he can roll over and back again, has been for months now but he hates the pressure on his tummy so he hates being on his tummy, so he won't just lie there on it, so this is huge, i presume it's to do with the fact that his tummy is all odd shaped due to his prgans being put back in and nothing's in the exact right place making it weird shaped, so it really must be uncomfy for him to be on it, he was quite happy lying there for a while watching kerrang before he fell asleep lol
Nothing much else to update on really, still happy getting his teeth brushed, happy and confident sitting up by himself for a while now, still being a typical CDH eater, S+L women due back out tomorrow so i'm setting myself up to be disappointed again when she leaves, ah well. 15 days till we go back in Yorkhill, meaning 16 days till Lewis's fundo operation and till he gets his Gtube, glad to know they got him a bed in the NICU stepdown ward where he was just before he got home for the 1st time, familiar territory for an unknown length stay.

Oh and Lewis now has his own Facebook page if any1 wants to add him, Lewis Boyd, or search SunshineWarriorLewis@gmail.com

Ps i've added a video below this post, Lewis all excited and licking his tray lol

05/07/2010

2010-07-06T16:25:00.001+01:00

Make photo slide shows at www.OneTrueMedia.com

hospital confirmation

2010-07-02T19:25:00.000+01:00

got the letter confirming Lewis's hospital stay, and 'pleased' to say he'll be having his stay back in 3b, which is like the NICU stepdown ward. he was in there just before he came home, last stay he had in May we were in ward 4, i didn't like that much, hopefully this time it means we'll get a wee room rather than a pull down bed in the shared ward where you're not allowed to shut the curtains round the bed and have to listen to the other parents staying over snoring all night, not sure how long he'll be in it just depends on whether they can do his operation by keyhole but to be honest i think we and them will be surprised if they can do it by keyhole.
The mor i think about this fundo the more i'm unsure, like really really unsure, but Ricky says it's best for Lewis, the hospital says it's best for Lewis, in fact every1 says it's best for Lewis, every1 except me, but guess i'll just have to be quiet, hopefully we'll get to see his consultant beforehand and i can express my fears to him (i have a lot of concerns regarding the fundo), i am however looking forward to getting the Gtube, my baby will look even more beautiful without the nasty tube stuck to his face all the time, and it also means that no1 will ever know there's anything wrong with him and the stares and ignorant whispers can stop, would rather people just ask but they won't, i mean it's worse if we're out and we're feeding him, people stare, how would they like it if i sat and stared at them while they were getting their dinner.

mum, dadda, babba

2010-06-26T19:38:00.000+01:00

can't believe i forgot to blog about this and can't even remember if i blogged about Lewis saying mum, anyway, couple months at least he's been shouting mum, it started off as mumumum then got more clear as mum, usually only when he got himself upset which was rarely ever, but then started saying it more and more, i must check the archives to see if i've blogged about it, if not i can't believe it lol
Since Thursday he's been saying dadda, and babba and even was repeating me, i'd say dadda, he'd say dadda, i'd say babba he'd say babba, sometimes he sounds like he's saying abaddad 'a bad dad' which is so weird because when Ricky teases him either him or i will say aww you've got 'a bad dad' maybe just coincidence but usually when people meet him they always say, he's been here before, and the comments about how advanced he is, which is just a miracle in itself coinsidering his 2 month bad start to life, we were always told he'd be delayed, but he certainly is not.
He's our sunshine warrior Lewis, a little part of me and Ricky, also a little part of Nathan and Rainbow, i'm so proud of them all xxx

Operation Date and Dentist

2010-06-25T17:45:00.000+01:00

firstly, had a call from Lewis's consultant's secretary this afternoon with a date for the fundo and he'll be having his Gtube fitted at the same time, so we've to take him in for 2pm on the 21st July and he'll go to theatre the morning the 22nd, mixture of feelings for me at the minute but mostly i guess i'm scared, i can't bear the thought of them wheeling him away from me again, or even going into theatre with him and staying with him till he's 'out' and it's less than a month away :( really hope they'll be able to do it keyhole, but when we were there in May the consultant said it's common for them not to be able to do it keyhole because he's been operated on there before things can be really stuck together inside so should be prepared for having to open him back up, just really hope so much they can do it keyhole, it'll be less stress for him and a quicker recovery.

On the plus side of it all i'm 'looking forward' to him finally being able to get rid of the NG tube, it'll be so weird seeing him for the 1st time in 8 months with a completely clear face, am just feeling abit 'phobic' of this feeding tube through his tummy, what if he pulls at it or it falls out or something, ugh gives me the willies thinking about it, will be so much better for him finally having the feeding tube out of his nose and throat, it must be so horrible having that there, i can only omagine, but i did ask Ricky months ago to let me pass a tube on him and i'd feed him thickened coffee through it so he could tell me what it's like but he refused lol.

Anyway as for the dentist, Lewis had his 1st visit to the dentist today, he was his usual smiling away, oh by the way, it took me 2 hours to go round our local supermarket today because of Lewis smiling and waving at every1 so of course they all just had to stop me, anyway dentist isn't too worried about his teeth at the moment as he isn't taking anything official orally, but like me bit worried about the reflux but we'll just wait and see what happens after the fundo operation.

we're so lucky to have him here with us. i really can't say it enough, he's just brought so much 'sunshine' back into our lives, he really is such a great baby, he just makes it all so worth it, even all the washing and ironing lol just wish he could have it a bit easier, or better still i wish i could go right back and go through it all for him xxx

good weight gain

2010-06-23T21:23:00.000+01:00

we had Lewis weighed today, 1st time in a month, he has gained 1lb 6oz in that time which as most of you will know is HUGE for a CDH'er, it's also pushed him up to the next percentile yay, health visitor is very happy with him, commenting on how advanced he is as well which is great as we thought it was just us who thought that lol,
so the only downfall with the weight gain is that hes halfway into the next KG which means he needs his calories intake upped quite a bit, which is bad news because he won't tolerate so much and so we're going to end up with the mega bad reflux again, therefore weight loss, argh i've found my own way of controlling his reflux with the way he gets his feeds etc, just don't know what i'm going to do now, he's already on as much as he can tolerate and without going back to THREE HOURLY feeds i can't see another way at the minute, wish the date for his nissen fundo would hurry up and come through we've been waiting nearly 2 months :s

toothy peg number 2

2010-06-18T17:24:00.000+01:00

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

2010-06-16T22:11:00.001+01:00

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

2010-06-12T17:50:00.001+01:00

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 :)

2010-06-04T14:46:00.001+01:00

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

2010-06-03T10:45:00.000+01:00

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

2010-06-01T15:21:00.000+01:00

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

2010-05-23T12:08:00.003+01:00

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

2010-05-15T13:06:00.001+01:00

Cheeky Wee Monkey

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2010-05-13T12:43:00.003+01:00

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2010-05-13T12:43:00.001+01:00

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2010-05-13T12:42:00.001+01:00

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

2010-05-13T11:35:00.000+01:00

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

2010-05-08T10:24:00.000+01:00

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

2010-05-04T10:30:00.000+01:00

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

2010-04-24T16:12:00.000+01:00

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

2010-04-04T11:21:00.001+01:00

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

2010-04-01T19:42:00.000+01:00

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

2010-03-23T02:35:00.002Z

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

2010-03-11T12:57:00.003Z

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

2010-02-20T18:17:00.000Z

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

2010-02-10T16:44:00.000Z

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

2010-02-01T19:47:00.000Z

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 :(

2010-01-17T09:31:00.000Z

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

2010-01-16T10:33:00.000Z

HOMEtime

2010-01-12T18:28:00.000Z

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

2009-12-30T23:20:00.001Z

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

2009-12-25T23:56:00.000Z

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

2009-12-20T21:48:00.001Z

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

2009-12-19T17:57:00.000Z

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

2009-12-18T22:54:00.000Z

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

2009-12-15T22:44:00.000Z

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......

2009-12-10T17:19:00.002Z

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

and then Santa visited

Happy 4 weeks old Chumba

Another chest drain

2009-12-07T11:58:00.000Z

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

2009-12-05T17:49:00.001Z

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

2009-12-03T17:13:00.000Z

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

2009-12-01T21:54:00.000Z

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

2009-11-30T22:43:00.000Z

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

2009-11-28T08:47:00.000Z

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

2009-11-25T11:05:00.000Z

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

2009-11-23T18:48:00.000Z

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

2009-11-21T12:56:00.000Z

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

2009-11-20T09:01:00.000Z

1 week old

2009-11-19T21:13:00.000Z

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

2009-11-18T07:39:00.000Z

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

2009-11-17T19:57:00.001Z

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

2009-11-17T13:25:00.001Z

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

2009-11-16T19:31:00.000Z

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

2009-11-16T06:34:00.000Z

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

2009-11-15T07:52:00.000Z

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

2009-11-14T11:46:00.001Z

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

Our Little Sunshine's CDH Journey

New Year, not so new Lewis :s

Updates

Fundo Loosening Op = Fail

2 years :)

Wee update

Still tasting, advancing with lumps?

Lumps :)

He ASKED for food :)

Hospital visit 16th August

Hospital tomorrow

Day to remember :) 11th August 2011 he swallows :)

Swallow and empty study

Positive Hospital Visit

Update

HE WALKS!!!!!!! :)

STEPS!!!

He CRAWLS :)

Sitting from Lying (17.04.2011)

Pics

Slow Down Lewis :)

New Boots and a scary announcement

Some recent pics

FINALLY back online with proper net :)

we now have a physiotherapist

Inspired by my Sunshine Warrior :)

New Year, new improved weight gain?

Diaphragm Clinic Update

December Update

FEW BIRTHDAY PICS :)

Happy 1st Birthday Sunshine....Dear Lewis

he's EATING (well of a sort but still)

Spongebob's Biggest Fan

pics to go with below post

Here's the update, good and bad

Will Update Later

highs and lows

2 top teeth :)

Feeding Pump Bliss

Back to Not Eating

good stuff and bad stuff

Feelin better today

Lewis had his fundo yesterday

Lazy bones

Tummy Time

05/07/2010

hospital confirmation

mum, dadda, babba

Operation Date and Dentist

good weight gain

toothy peg number 2

What a Year

Speech and Language at last

Suprise tooth :)

my favourite ever scan picture

first ever weight loss

Gone backwards with feeds

15/05/10 at OneTrueMedia.com

12/05/10 (1)

12/05/10 (2)

12/05/10 (3)

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

Update from hospital

Roll Over/Hospital and New Blog Header

can't seem to find the time

last public update

Closing the Blog

Save The Cherubs

CDH affects ababy every 10 minutes. Over 600,000 babies since 2000 - killing300,000. Please help us raise awareness and save the cherubs! http://www.savethecherubs.org

feeds and general update

1st visit to the Diaphragm Clinic

Refusing feeds

update

Colds :(

Pics of Lewis on homecomin day

HOMEtime

quick update and pics

Happy 1st Xmas Lewis, and good news

Sicky Baby

And Another Step Forward

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