Saturday, 26 June 2010

mum, dadda, babba

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

Friday, 25 June 2010

Operation Date and Dentist

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

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

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

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

Wednesday, 23 June 2010

good weight gain

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

Friday, 18 June 2010

toothy peg number 2

Lewis has another tooth, exactly 1 weeks after the 1st broke through, the 2nd broke through this morning, again it hasn't bothered him, a little grumpy on and off during the night but he never actually woke up, was just having little whinges in his sleep, sucha  brave wee man, i know how sore it was when my wisdom teeth came through xx

we're still on 4 hourly feeds but he's tolerating this rather well, with his break half way through, we tried increasing him again to get him to 5 hourly but he wasn't tolerating that, but he done  better with it this time than last time, remember we ended up back to square 1 on 3 hourlies lol, so hopefully before long we'll get there.

He's still enjoying sitting in his high chair or his bumbo seat for meal times, playing around with food, sometimes but rarely he'll try and eat it, mostly just plays in it and then rubs it all over his face (pics at the end lol)  but this is more than he used to do so it's progress at his own pace, he doesn't like things that are pureed to be very very smooth, he prefers things that are not lumpy, but gritty if that makes sense, them's the things he's more likely to put near his mouth but he still prefers the finger foods, like biscuits etc pity we can't make meals into biscuits lol, but still no calories by mouth but hopefully like everything else we'll get there in the end even though i know we're in for a tough few years at least lol
do these kids ever grow out of the feeding problems/aversions?

anyway here's some pics :)
this is him EATING

Wednesday, 16 June 2010

What a Year

It'll be a year on the 29th June since i started this blog, meaning it's been a year since we found out our 'dream number 3' had CDH,
it all started on the 10th june 2009, blood test results came back high risk for downs syndrome, not a problem we can handle that, the worry was waiting for the heart scan to see if baby had the same heart problems that Nathan had, the worry of downs syndrome with the link of heart problems,
12th june we had the heart scan, can still hear the consultant clear as day as if it was yesterday, he 'thinks' he can see the 4 chambers, what a relief, then bang the BUT, i can still feel my heart stop when that BUT came, what now, then the brief explanation of the stomach being in the chest, the heart bein squashed and pushed to the side, the lungs etc etc, the only thing going through my mind was that we were going to lose this baby too, it was already a hard pregnancy to this point, after losing 2 already, but now, how the heck would we ever get through the next few months knowing only that it's 50-50.

I wish we could have seen into the future, seen just a year ahead, seen our beautiful wee boy with his very happy nature, smiling and laughing away at us, breathing all by himself, sailing through his intensive care days, we know how lucky he is to have made it through this horrible defect, we know how lucky we are that we got to bring our 3rd baby home, he's such a joy honestly no bother at all, never cries or complains about anything, yes it's been 1 hell of a long hard road but it's been worth every step, still is hard with the whole oral aversions, mega bad reflux, etc but we'll get there, he's thriving and looks such a wee chunky monkey, legs like tree trunks, i just can't believe how far we've came, everything we've been through in the last year have no idea how we done it had to i guess and having an amazing sands friend (leigh) there every step, listening to me, terrified Lewis wouldnt make it, sharing my cravings lol getting me through every day, keeping me laughing etc etc well that helped xx

don't know what else to say really, it's quite hard thinking about all that again, just so thankful to our angels for helping their brother come home
What a year!!!

Saturday, 12 June 2010

Speech and Language at last

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

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

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

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

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

Friday, 4 June 2010

Suprise tooth :)

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

Thursday, 3 June 2010

my favourite ever scan picture

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

Tuesday, 1 June 2010

first ever weight loss

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

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