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

1 week old

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

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

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

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

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

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

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

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

Lewis nathan richard boyd

Best can do is a pic of a pic for now xx our beautiful little fighter x so proud of u sunshine xx

A fighter is born

Lewis nathan richard boyd was born 12th november at 17.33 by emergency section x done really well at birth and was stable from then x finally got to meet him at half 10pm hes so beautiful n we're extremely proud how well he's doin lets hope so much it continues as well and better xx goin to try and upload some pics if can remember how to do it by phone xx

This is it

Off to labour suite to have waters broken n start the drip x not sure how long now but every1 is sayin wont be long now x next update i guess will be sunshines arrival x wish him luck on the next stage of his journey xx

Quick update 2

Well didnt get my waters broken got 3rd prostin pessary instead x going bk up to delivery in the mornin to check again and see if they can break waters yet x had an uncomfy time n gettin regular more painful tightenings now just waitin for the doctor to come and write me up sleeping pills so i can sleep tonight x doesnt look like sunshine will make his very grand entrance till tomorrow x NICU still have a cot for him and are still all ready for him and found out will be delivering in theatre as the delivery rooms are too small to fit every1 xx

Quick update 2

Well didnt get my waters broken got 3rd prostin pessary instead x going bk up to delivery in the mornin to check again and see if they can break waters yet x had an uncomfy time n gettin regular more painful tightenings now just waitin for the doctor to come and write me up sleeping pills so i can sleep tonight x doesnt look like sunshine will make his very grand entrance till tomorrow x NICU still have a cot for him and are still all ready for him and found out will be delivering in theatre as the delivery rooms are too small to fit every1 xx

Quick update

Had 1st pessary last night and 2nd at 6.30 this mornin x was gettin tightenings from bout 4am and monitor at 6 was showing lots of them x not been in much pain its manageable but hardly slept last night and had 2 hours this afternoon then lost bit of water and plug x just waiting for delivery suite shouting me up now for assessment to decide whether to break water properly and start drip or to give another pessary x NICU keep ringing down to see how things are going they're waiting for sunshine and have a cot ready for him xx

38+4 it,s nearly Tuesday

can't believe i'm now counting down just a few days now, this day has always just seemed so far off, i kind of go from 'right let's just do this get this horrible journey on the road so we can get through it and bring our wee man home, but that changes in the space of seconds to the ultimate fear, 'omg i'm so not ready for this, let's just keep him in there, but i guess no matter how many days or months away it is, i'll NEVER be ready, i'm just trying to concentrate on seeing his beautiful face, though it won't be as clear as i'd like, wires/tubes etc i'm hoping that after the initial shocks i'll see him as though they aren't even there.

I just wish the fact he's been stable with 'good' LHR until now was an indication of he'll do, but no matter what and how good or bad he's been doing since diagnosis, no1 can ever tell us he'll be ok, i don't want to just sit and wait out each minute/hour/day and see what it brings, i just need to know, but it's just 1 of them things we can't know.

I know he'll be in the best possible hands i have all my faith and trust split between my Angels looking after their brother and the hospital at Yorkhill, i know they'll all do absolutely everything they can for Sunshine, and i know every1 is just holding out to hear he's doing ok and to finally see his beautiful face and finally learn his real name.

I guess i want to take this opportunity to thank a few people for everything as we approach the end of the very long and hard pregnancy journey, Leigh for 'sharing' the journey with me, keeping me laughing at her blondeness and getting me addicted to cafeworld on facebook lol, Rachel, Caroline, Lynley, Sarah and Gemma, who all, sadly have CDH angels, for letting me rant and cry and for helping me with information etc has helped me more than they'll know, also the people i've 'met' and email who's CDH babies have been treated in Yorkhill and are now all home and doing well, which has been a great comfort to know, they've all helped me gain so much trust in the hospital.

Our local SANDS group, where we've attented the meetings every month since we lost Nathan, their support is just amazing beyond words.

And to CHERUBS for the lovely parcel i received yesterday containing the amazing totebag and to every1 who donated items for this in honour or in memory of their cherubs.

My mum for everything but mostly for loving my babies as much as i do, all of them not just the 1 who's still here.

Last but not least my wonderful hubby, for everything, i know you're scared too, i love you so much xx

I'm sure i'll be back with more thanks when we approach the end of the hospital journey xx

Well i just realised today is the last day we can have together, the 3 of us with Sunshine still safely tucked up, hubby workin all weekend, his last night being sunday night and i'll have all my last minute bits to do on monday, ready for going in on tuesday, and monday night will be our last night together cuddling Sunshine in bed seeing as Rickys not allowed to stay at the hospital on tuesday night :(, hopefully we can go and do something together today just the 3 of us on our last day together.

I'm not sure i'll be updating again before Sunshine is here, but will do my best to update as often as i can and post a pic of the beautiful Sunshine.

Hayley xxx