Gone backwards with feeds

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

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

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

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

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

15/05/10 at OneTrueMedia.com

Cheeky Wee Monkey

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

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

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

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

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

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

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

Update from hospital

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

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

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

Roll Over/Hospital and New Blog Header

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

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

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

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