Colds :(

ugh so less than a week back home and me and Lewis have been hit with the cold, i don't get ill with things very often but when i do they hit me sooooo hard, really hoping Lewis hasn't been hit as bad as me with it cos i feel absolutely dreadful with it, his grumpiness suggests otherwise though, worry sooo much cos it's not like him to be grumpy or anything, he's always been so happy and content, anyway got some calpol n was reading the leaflet before i gave him any and apparently if he's on domperidone (which he is) then he can't have calpol without talking to doctor or pharmacist first, not what i wanted to read being it's sunday :s

hope some1 reads this today but any suggestions as to what he CAN have to help with his cold symptoms just to help him feeld that wee bit better, that agrees with meds he's on?

Apart from this he's been doing well, seems to have settled in nicely though me and Ricky still trying to work out a routine lol, he's been vomiting quite a bit and i have come to wonder if his milk formula has been upsetting his tummy as well, in hospital they used the ready made version of it and at home i was using the powder version, not sure whether it could be the carobel or gavison not mixing properly in it or something but it should'nt look curdled, and when i pull back on his NG tube it looks curdled there as well so it's sitting in his tummy like that, anyway decided that although it'l cost double, to buy the ready made version in the cartons, it mixes better with the carobel n gaviscon so will give it a few days and see if helps the vomiting a bit and runny poo.

Now onto the NG tube lol i'm learning slowly about it getting caught in everything, for example yesterday i lifted him out his bouncy chair thing only for the end of the tube to get caught in the side and pulled clean out oops, felt so bad cos i know he hates getting a new tube passed therefore screaming for the next 45 minutes, anyway i'l get there, just have to try and remember it's there lol

Nothing much else happening at the minute, he has an appointment back in the hospital on monday just a wee checkup and then has the diaphragm clinic in february, oh also the health visitor is going to arrange for us to have an open acces to our local hospital which is excellent and puts my mind at ease a bit knowing if i get worried about absolutely anything at all just to take him on in n he'll get seen straight away, not having to wait days on doctors appointments etc.
and on wednesday past he weighed in at 10lb 3oz

Oh and also would love some tips on medicines and the mixed oral and NG feeding thing for when i'm out, don't fancy takin like 6 bottles of meds out with me and then have to draw them up when i'm out etc etc is there another way? lol

Pics of Lewis on homecomin day

HOMEtime

well for the lack of updates it's been a hectic time specially last few days, nurses started mentioning home n said that 1st we'd have to learn to pass the NG tube 3 times each n i'd have to do rooming in for couple nights with lewis but basically that was the only thing stopping him going home, so saturday n sunday nights i stayed over with lewis, 1st night he slept from 9pm till 8am n next night 9pm till 7am. and we decided to leave his hands free hoping he'd pull out his tube a few times, a shame i know but small price to pay to get him home.

yesterday his consultant said he could go, tomorrow, so mad dash home for me to get things ready as we've been livin away for 9 weeks.

anyway to cut a long story very short SUNSHINE IS HOME on his 60th day :)

just a quick update as things bit hectic. gettin used to medicines n stuff blah blah he's home and i'm just over the moon
pics later xx

quick update and pics

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

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

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

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

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

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......

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

and then Santa visited

Happy 4 weeks old Chumba

Another chest drain

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

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

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

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

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

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

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

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

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