May 26, 2010

adventures in tube land...

good morning dear reader...

as you know, Harlow came home recently and is being fed by bottle and by tube. it is not an ideal situation but with the energy levels that he has, there is really no other option. with four hourly feeding, the three feeds during the day are via a bottle and he does really well at these. mostly. the three feeds at night are with the tube. they're tubed so that he has enough energy to feed from the bottle during the day.

when his energy levels are where they are supposed to be, he can knock off 140mls - 150mls without working up a sweat. 20 minutes and she's all over, red rover. thats not to say that all day time feeds are a cinch, no no. there are still feeds where he will take 20mls and quit. or 10mls. or 40mls. whatever the amount, it's not nearly enough and the rest of the meal has to be delivered al-la-tube.

so ... things were going along ok, hop skip, hop skip, skippedy-skip, and then we hit a bump in the road. a bump ... more of a small hillock i should think. he pulled out his tube. ~poof~ just like that. one moment it's there, the next, ... its gone. yikes, but didn't he holler!! just imagining doing that and i have a tear. the result is, its kinda hard to feed him.

he had that tube out for 2 days. he was doing great there to start with, and we're thinking "hey, check this out, he may not need that tube forever after all." haha... yeah, right. about three feeds in he started going down hill again. you could see it, each successive feed getting less and less. the little bugger. it just shows tho, that he cannot do this unaided.

so, two days later, the home care team visited and the tube is back. just as well. today ( about three days later ~ you can't create genius like this overnight! ) has been ... difficult. he took 2/3 of a feed at 10am, 60mls at 2pm and then maybe 100mls at 6pm. he's been all over the place. if he hadn't the tube, he would be going hungry and not growing. all kinda important things really.

the tube is not natural, it is an intrusion and unwelcome, but ... it has a part to play in keeping him alive. keeping him alive is a good thing.

May 25, 2010

May 16, 2010

sleepless smiles...

sleepless smiles ... sleepless smiles ...

Harlow is the smiles part of this. he is a really really smiley guy. when you start talking to him, or when he starts noticing you talking to him, he smiles at you. his whole face lights up, his eyes crinkle and his smile gets all lopsided. it's one of the coolest things parenthood has to offer. his attention span is quite short tho, so you have to keep trying to get his attention, keep making yourself look as though you are a few sandwiches short of a picnic. i know i have mentioned this before, but i think it bears repeating. he smiles. a lot.

the other side of this is the sleepless side. with feeding happening around the clock there is no such thing as a solid nights sleep anymore. not for anyone. we have a plan tho, a plan to excise the 2am feed from our lives. there is some doubt over whether it will work or not as it involves increasing the size of the other feeds and his tummy is only so big. we're going to give it a shot however. anything to get rid of that damn feed.

thats ok tho, he is worth it.

he as a cold at the moment. his nose clogged up in the wee hours and he was frantic trying to breathe properly. i remember this happened with Cohen as well. thankfully this was not as bad as Cohen ( he ended up in hospital for a couple of nights when it happened to him ) and after maybe twenty minutes he was breathing clear again. one of the advantages of having oxygen at home.

the government has manned up and provided the carer for us. many thanks to Carole, Lorraine and Kevin for fighting that battle. her name is Jill and she gets smiles as well. lots of 'em. we are currently trying to work out a schedule for Jill that will allow Justine to do most of the school runs. it's harder than you think.

other than that things are ok. Harlow is in his big fella cot, but when he comes down stairs for play time, the other boys think he is great. i saw Cohen patting him on the head while Justine was holding him today.

May 11, 2010

a little bit batty...

its been nearly three weeks now since he went into the hospital. he went in there to see if anything could be done about his energy levels and no, there's nothing that can be done. it's a time thing.

he is all over the place. last friday night he did really well, he took 100ml from a bottle. w00t!! what a champ!! but wait, it gets better!! two hours later he took another 100ml from a bottle!! with the track record he has had, i would not have pegged him taking 200ml from a bottle for another three or four years.

that is only half the story however. looking at that feed in isolation, you would think, great! he's cured! alas, that is not so. the next THREE FEEDS were absolute bollocks. around the 20ml mark each time. once he has decided he has had enough, ~poof~ he is off to sleep.

i haven't been to see him for a while but i made it in on friday after the rugby ( go the 'canes!! ). he was wired! his eyes were open, staring at the bars of his cell, ah... cot. so, i got him up and gave him a cuddle and i had him laughing! trying to, anyway. it was so awesome!! turns out he is ticklish. quite ticklish. have to write that down.

at present there is no ETA for him to come home. there is a care support package in the wind that will allow us a much greater freedom in terms of getting the boys to kindy/ school. this needs to be in place before his nibs can even think of coming home. there will be a carer coming in three times a day at 8:30am, 11-11:30am and 3pm to allow Justine to take the boys while leaving Harlow at home. if you wonder why he has to stay at home, its because a simple trip to the school will knock him out for a day. two trips and he will sleep for twenty four hours.

he is also going to come home tube feeding. damn...

SERIOUS NOTE: Justine and i would like to give a special thank you to Carole and Helen for all the help that they have given us. they have been a pillar for Justine to lean on. they have also battled the hardest for the care package that is coming. thank you ladies, it is very much appreciated.

but its not all doom and gloom. he received a package from the states today. a bat!! its (almost) bigger than he is!! my friend Andrew from Alabama ( @keeponrunning ) has had a daughter Sam. she's a right little squawker from what i can gather. Harlow and Sam have exchanged gifts, a rugby ball for a bat. ( wonder if that makes them betrothed? never too early to start planning ... )

May 4, 2010

international fame...

everyone knows about twitter. well, let me put it this way; if you do NOT know about twitter, then you have been living a very sheltered life under a rock somewhere at the bottom of a big pile of rocks.

i like twitter and have been on twitter for a while now. my name is @thelongsilence, 'cause i really don't say much while i'm on there, but i enjoy the banter that goes back and forth, gets magnified, twisted and sometimes out of control.

twitter is social media at its best, the whole anonymous thing that allows you to be as obnoxious as you please with the biggest repercussion being that whomever you offend no longer chooses to follow what you have to say. it allows you to "reach out and touch someone" anywhere in the world.

obviously, i have discussed Harlow to some extent, some discussion being of a positive nature, some being not so positive; i have vented.

there is an ex-kiwi living in melbourne now, name of Joi Murugavell, who is also "of the twitteratti". she is a graphic designer and maintains a blog of "oodlies". her blog can be found at http://joidesign.posterous.com/. from what i can gather, her inspiration for oodlies comes from her life; things she sees, things she experiences. one of those things has been me venting about Harlow. to this end, Harlow has inspired two oodlies that i would like to share.

i think it's great that a) someone is listening to the crap that i put out there and b) it has affected someone enough for them to take it and run.

i like them >:]


ps: if you don't know already, its international star wars day : MAY THE FOURTH BE WITH YOU!

May 1, 2010

a call to arms!

i am raising the call!! there are people out there, 2 foot long or less who need our help. it is our duty as able bodied citizens to help in any way we can. they are depending on us.

it is true, i have been as neglectful as you. but with everything that we have been through, that will change! no longer will i be slothful! no longer will i be willfully blind to the needs of the 2-foot short.

- what is he babbling about?
- make sense boy!!

ok. the wellington neonatal trust. those selfless people who do so much for those parents whose 2-foot short offspring are causing them to live through such interesting times. they are the shoulder to lean on when there is no one else,the helping hand when all others are clenched in a fist,the open door when all you see are blank walls. they are there to help any family who is on a journey though the NICU. i think we qualify as one of those families.

they put on lunches every thursday with some fantastic ham and cheese quiche. [ excuse me, i hear you sniggering in the corner. you! yes you, real men DO eat quiche!! ]. they have helped us out in many ways, big and small, which have been immensely helpful. what do you say to generosity like that? thankyou comes to mind ( i was raised properly, after all ) but somehow it seems sadly lacking. not sure if i know of an appropriate way to say thankyou for this.

one thing i can do is to raise awareness of the trust and see if i can get people to dig deep and donate. there are a few ways to donate that are easy and fast so, theres really no excuse now, is there? [looks at himself too].  maybe the next time you go and buy a lift plus, a cup of coffee, a chocolate bar; maybe you will think again about what that money can do. i know its not much, but it all helps.