Monday, 29 October 2012

Oh my has it really been so long??

Wow I can't believe I haven't been on here in so long!!
Well our sunshine warrior will be a whole 3 years old in 2 weeks! What's journey it's been too! I was looking back at some baby photos the other night from when he was born and his time in NICU, I haven't looked through them in so long, I cried, I can't believe that was our little boy so very poorly, fighting so hard for his life, to look at him now it's just unbelievable! It feels like it was all a million years ago!
He keeps in fairly good health considering, though has been plagues with a few chest infections this year, 1 particularly bad 1 where he ended up in hospital and had abnormal breathing because of it, but they refused to X-ray! I'm just so glad we don't end up in hospital very often!
He's a proper little boy, running round just like any normal 2 year old even though they said he wouldn't, he does tire a little quicker than normal though, but at least the whole thing doesn't stop him!
He is still fed through his gtube, but he will try almost anything food wise now, not enough to count as intake still but his interest is just so great!
He's still enjoying nursery, going 3 sessions a week but due to start 5 sessions in December, he also attends an outdoor nursery 1 session a week and he absolutely loves that, just running around outdoors getting dirty, just like kids used to when I was little as you don't really see much of that nowadays!
I have also just recently discovered the 'blended diet' which interests me very much and is something we would love for Lewis to experience, normal food in his tummy, there is no medical reason he can't eat and swallow food safely and we are hoping 1 day he'll get over the aversions etc and eat just like us, so why not start him on proper normal food sooner, he'll just be getting it through his gtube instead of his mouth! I did buy and have read The complete tube feeding book by Eric aadhaar, what a great book and a great starting point, I have learnt so much by reading this, can't really say anymore on it just now as technically we haven't been giving the ok to start the blended food, but I do reckon we'll have to push as hard as we can to get all round agreement, beats me why though, I mean it is  just food after all :)
Oh and Lewis (and his little sister Kaylah) will have a new little brother joining us in February, a big surprise but a very welcome 1 :)

Thursday, 12 January 2012

New Year, not so new Lewis :s

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 :)

Tuesday, 6 December 2011

Updates




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.

Thursday, 24 November 2011

Fundo Loosening Op = Fail

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 :)

Wednesday, 9 November 2011


2 years :)

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 :)

Saturday, 22 October 2011

Wee update

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 :)
Sent from my iPhone

Thursday, 1 September 2011

Still tasting, advancing with lumps?

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
 

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