it must be night time ....

boy o boy, don't he just LOOOOOVE going to bed...

a hint of normality ...

ah, the weekend. the time of family. (and sports, and morning teas, and going out and forgetting yourself for a while)

NORMAL families do some or all of these things. NORMAL families are able to do some or all of these things. we are not a NORMAL family.

but we are on our way. after a little more than a year, we have taken our first decent family outing. with Harlow not being able to go ... anywhere really, on saturday we made it to lindale in paraparamumu and enjoyed ice creams in the sun. all six of us. after that we headed up the coast to levin and the adventure park.

for those of you who haven't been to either place, you should. there is something to be said for kapiti ice cream. they have flavours like lemon cheesecake and gingernut, very very good. and the adventure park? its a great place to let off steam, although they have taken down the flying fox...

so anyway, we made it there, we made it back again and it was great. a family outing, to somewhere other than the mall. (and we've only been to the mall a couple of times all together).

Harlow even managed to drink a bottle while sitting in a cafe in otaki!

one day, we may just end up being a NORMAL family...

the bash...

photo by Lisa Wong

the birthday bash. i really shouldn't call it a 'bash', it was too big to be called a 'bash'. you could call it an 'event', or a 'small national gathering' or something of that ilk.

just shows how many friends he has already. in for a life of "social butterfly"-ish-ness is our boy.

it was great really, there was over 120 attendees. just about everyone who has helped us with the wee snotmonster over the last 18 months was there, eating and drinking and making merry. we even had a bouncy castle so the children would leave the adults to their adult-type pursuits while learning how to launch themselves out the hall window to (hopefully) land in the bushes.

the party itself was great, everyone had enough to eat(!) and drink, there was talking all over the place .... and then there was the speech.

me. talking. in front of over 120 people. lucky i had the "pre speech beer(s)" handy. very lucky...

then it was all over.

now ... Harlow. he was great. he missed his afternoon sleep so as he could attend his party, and he handled it like the gentleman he will someday become. it also helped that he was passed around his many unofficial aunties etc who obligingly coo'd over him and kept his smiling and laughing until everyone had left. he burbled, he dribbled, he laughed during the awkward moments thus relieving those moments of their awkwardness. it was all good `:) champion...

everyone did leave eventually, loaded down with food. did i mention that we over catered? by about double? there was more than one family of 4 or more that went home with no need to cook that night... in the end we couldn't even give it away.

ah well ... it was worth it `:)

dawn of a new age...

a new age has arrived, an age where the squawking is louder, the teeth are bigger, the nappies ... well, we wont go there but i will say this, the nappies are nastier.

Harlow turned one this morning, at precisely 4.05am. was there a fuss? a fanfare? NO!! we were sleeping. but when we woke up ...

i have yet to make my mind up about the last year. was it the best year? or was it a year from hell? there is no easy answer here, but the one i'm going to posit is that it was both. he arrived amid fire and brimstone, eager to be off but finding he was not up to task. through the year he has worn both wings and horns; an angel one day, a demon in child skin the next; we never knew what he was going to be from moment to moment, or what would make him change.

to say he has irrevocably altered the lives of those around him is, simply put, an understatement. he has a non-verbal hand in everything we do, every decision we make. he has had a profound effect on both middle management and the workers. its a wonder that they haven't quit and moved elsewhere.

i don't know really how to describe it. in terms even i can understand, we have been through hell. the life of a prem baby is a hard one. on everyone. there is so much pain, fear and misery that at times it nearly overwhelms you. what used to be simple and easy is now like trying to balance an anvil on a the tip of a needle.

it's not all been this way. there are also moments of joy, of happiness, of love. these moments are the reasons you do this, the reasons you wade through all the crap. there doesn't need to be anything special about these moments, they just are. they create the balance.

Harlow my friend, happy birthday. for a year you have kept us on our toes. it doesn't matter what we have wanted, what happened is what you wanted, what you needed. but you know what? thats okay. for you, i would do it all again in a heartbeat. you have changed our lives, the way we live, the way we think, the way we are. you have made us better. so to you i say ... ... ... i have no idea what to say. there are many things i could, so many things i should, but i don't think i can. i don't know how.

so, this is where i'm going to leave it.

get your teeth into it...

its a nasty nasty business growing teeth. they sit in your gums all sharp and pointy, going up "here i am!" then down "haha, tricked you", then up again "for realz this time!" and down "you are so gullible..." before coming up and breaking through "so ... how YOU doin'?". i'm pretty glad i don't remember doing it myself.

Harlow has been cultivating the two middle lower teeth for some time now. he's been grumpy, moody, swearing a lot and is halfway through painting his room black. seriously, those teeth have been up and down more times than an old man on viagra and he has not liked it one bit.

finally however, those teeth have broken through. cut their way through. (anyone notice any similarities between birthing teeth or birthing an alien? both have to cut their way out... can't be good for you)

Harlow now has two teeth in his bottom jaw. they are no more than a smudge at the moment, but they are there.

only another 20 or so to go...

oh, and the peace has been shattered. he speaks!!! he has a diverse vocabulary of two words, "boo" and "da". i'm wondering which end of the vocal spectrum he will fall on, whether he will suffer from some kind of verbal diarrhea or whether he will be a mostly-mute. either way, he will have to fight Caiden and Cohen to get a word in. good luck there fella...

a deadly sin...

nom nom

gluttony is a sin. a deadly one. but not in this house, not when its Harlow doing the glutting.

we thought he would be tube fed for years! and what does he do? he starts eating. and not by the mouthful, by the jar!

two weeks ago yesterday he pulled out his NGT. with the eczema on his face, we could not put the tube back in, so we left it. for three days we left it. for three days he basically starved... and then there was a change. he started to eat, he started to hold his own. two weeks so far and still counting... both Justine and i are hoping that this will continue well into the night, so to speak.

he is like an old chevy v8. it takes a while to start, backfires a bit but eventually runs smoothly. same with his feeding. you have to convince him that he wants it and when you do, he hits high gear and wolfs it down. *kaboom* ... gone. well, sometimes. sometimes the chevy just doesn't start or get higher than first gear, but it is definitely getting better and better.

[ don't go anywhere ... feeding the cat ]

that is most triumphant.

have to hope it lasts. he will grow and get big, stomp on his brothers, earn a nobel peace prize... and it all started with a mouthful of pear and banana.

ok, so it is not that easy... but he is eating tho. and funnily enough, he seems to be drinking his milk better as well. whats up with that?

behind the facade...

who here has ever had a prem baby? anyone? how did the feeding go?

Harlow and the feeding genie have a passing acquaintance at best. as previously noted, he was doing okay, he had the tube out and was holding his own for 13 days. then we had the vomiting bug thing and that was the last time he fed properly. 23rd of august. its october now. and there is no end to this non-feeding nightmare tunnel.

admittedly, with him still getting over his bronchitis, his feeding will not be up to scratch, but he has learned to push the bottle out with his tongue and jam his mouth shut. if you replace the bottle with a dummy, everything is all smiles, replace the dummy with the bottle, he shows you his demon horns...

so, if anyone knows how we can get that little man feeding, we would really like to hear from you.

note: if anyone has a spare 30k, we would really like to send Harlow here : the Graz Clinic in austria. not only will this clinic get Harlow off of his tube, it will also be full of austrian girls... >:]

cough ... cough ... cough cough cough

respiratory issues. curse of the modern prem baby.

we were warned when Harlow came home that he may get respiratory issues over winter that would land him back in the hospital. well, winter has passed and he has not had any problems. yay! we thought, we are some kick ass parents! haha, as everyone who has ever been bitten by fate knows, fate is a young girl with a magnifying glass thinking about anthills.

for the last couple of days, Harlow has been coughing and coughing. his brothers have all just had or still have colds, so we thought Harlow had a cold also. the symptoms were the same, but there were differences. a temperature, green gunge in the corners of his eyes, both of which are not associated with having a cold.

last night it kinda got out of control, he was awake for hours, his feeding was not going well, he was hot! so hot! around lunchtime today Justine took him to the hospital. he was admitted pretty much straight away, he looked pretty bad.

turns out he has bronchitis! "that's not so bad" i hear you say... and normally you would be right, but with chronic lung disease it becomes a whole bigger deal.

---

that was yesterday. this morning he was a bit better, talking and the like, but as the day wore on, he started degrading again. slept most of the afternoon away, making little mewling noises.

this evening he perked up again after scoffing some pamol, he was very noisy after that.

and ... that is where we are at the moment. Justine is spending her second night at the hospital tonight, with my turn tomorrow night. the doctors think he could be there for a couple of more days...

---

he is back home now, he came out on tuesday after spending ten days in peads. he is still hacking up a lung, but that is expected to last for a few more weeks. he is essentially well again tho...

wow...

wow ... the world of wearable art.

each year, this contest is held in wellington and is a showcase of designer talent from around the globe. this year, Justine and I went along to see what the fuss was about.

i'm glad we did, it was pretty damn amazing. there is so much talent and so many different ideas out there that the show was kinda mind blowing.

the best part about it is that half the cost of the seats we were sitting in is donated directly to the neonatal trust here in new zealand. this is a good thing. the neonatal trust has helped us in the past and with the money that comes in from wow, they can continue to help families of prem babies.

it was a FANTASTIC performance, and we are definitely going again next year.

on a more local note, with Harlow being so prem and in hospital for so long, Caiden had an idea. He suggested to his teacher that Discovery School raise some money for the neonatal trust. well, the school council decided that this was a worthy charity and they raised the money with stalls. parents donated stuff to sell and then bought it back again, or bought other peoples stuff and ended up raising TWELVE HUNDRED DOLLARS!! that's my boy... that money will go to help other families who need it.

crap...

that's about all i can say really.

crap: the family has had a stomach bug that has had five of us puking all over the place.
crap: Harlow's feeding went all to pieces.

... and ...

crap: Harlow's tube was put back in.

it went like this...

monday. Grayson puked first, then Harlow, Cohen on the way to kindy (three times ~ thanks to Michelle for cleaning up that wee gift), then me(!!) followed by Caiden. i have to say, monday was not a good day. lots of washing .. lots of cleaning ... oh, the cleaning ...

tuesday was a better day. a non-puking tuesday.

the worst part of this is the effect it has had on Harlow's feeding. during the group-puke-fest, if we fed him too much he would puke it out. so we reduced his feeds to a much smaller amount. his 1000mls per day dropped down to about 600mls, a little shy of what he should be taking. tuesday was a little better with 800mls, but im guessing it will take a while to get him back to his 1000mls.

now, anyone who knows Harlow well knows what a "challenge" he is to feed. its hard. on a good day. well, tuesday was hard and then some. we did very well to get that 800mls into him.

but ... what can you do? the show must go on.

end of an era...

hello,

i haven't said hi for while, so i will say it now. hi. i have some news to tell you. i think its quite exciting.

i have made a change today and it's momentous!

eight days ago, i decided ENOUGH! NO MORE! i decided i was not going to use my tube anymore and since then it has been nothing more than a blip on my cheek.

for the last eight days i have been, what i like to call, a SUPERSTAR! every bottle i have had has been consumed the old fashioned way, suck'n'swallow. not a single one has been down that tube, not one. for a whole eight days. i have tried this before, but any longer than four days and i just conked out.

but wait, theres more! i have started eating solids. i mean, properly eating solids. Mum has given me some in the past but, meh, i took some, i left some... not the case now. tonight i ate two cubes of pumpkin. it wasn't what i requested, a hamburger, but its a start; everyone knows it takes time to train a parent.

i listened to Mum and Dad talking about pulling the tube out; should we? shouldn't we? haha, you should have heard them, they were like a couple of old women! but in the end, the decision was made and wasn't that a weird feeling. it was like having a foot long piece of snot pulled out of your nose.

i feel a little ... different now the tube has gone, it has been with me since i was born. baring a few days here and there, but whats a few days between friends? i only hope that i can keep it up. if i conk out again, back goes the tube. that would not be a good thing.

so, to immortalise this event, i commissioned a well known video artist to take a video of the tube coming out. here it is ...



dont i look the stunned mullet when it comes out? anyway, thats all the news i have at the moment, i will talk to you again when something else important happens.

cheers,

• Harlow.

something special ...

he laughs... >:]

and its one of the coolest sounds in the world.

we got the pox...

so, when you have four kids, it takes a while to get through the pox. we have had it in the house now for six weeks.

so, Caiden burst out in spots on the first day of the holidays. yep, thats exactly what he said. he was not impressed.

so, during the two weeks of the holidays, Cohen had a friend over ( we gave him chicken pox ) and i took the boys to see Grandpa up in hawkes bay. i guess as far as sick holidays go, it was not too bad.

so, school started and off Caiden went. alas, Cohen did not make it to kindy. for the next two weeks, both Cohen and Grayson sat and counted spots. turns out that Grayson's case was a pretty normal one, the kind of case you expect everyone to get. Cohen's on the other hand was pretty vicious. his spots had spots and they were everywhere. he still has some that have not gone away and its a month later.

so, then there is Harlow. i have decided that chicken pox is a nasty disease and should not be contracted by anyone younger than about three. with a three year old you can at least explain what is going on, with a baby of 8 months, its a little harder.

so, i thought that you could only get the pox once. turns out that's not quite true, this is Caiden's second round. some of you may remember his first round, he was four and spend nine nights in hospital with a combination of eczema and chicken pox eating up his skin. if that wasn't bad enough to stop him getting them again, i don't know what is.

so, if you think that is all, well, it's not. during this six week epic pox marathon, we have also had Cohen and Grayson with a virus, and Caiden with the same virus, vomiting, asthma and a chest infection. plus Harlow was in kenepuru hospital with ( suspected ) dehydration from vomiting and diarrhea.

so, throw in three or four nights of three or four hours sleep ... we have had enough of the pox.

O2 to NO2...

oxygen.

essential to all living organisms.. big ones, small ones, ones with rainbow hair. this includes little children. available in a bottle, can and cylinder. at a store near you.

we had our oxygen delivered in cylinders. four of them. full of life.

one at a time they would sit, silent, next to Harlow's cot. each night, when Harlow was put to bed, the cylinder would be connected to his nose through a tube, making sure that Harlow has enough oxygen to keep his energy levels up.

for the last two weeks or there abouts, the oxygen has been sitting on the floor, mute ... unconnected. Harlow's energy levels have been right up where they should be. without need of the added oxygen at night.

this is a good thing.

i'm not saying everything is fixed, he still tires incredible easily. when he pulls his tube out, he lasts about four days before crashing. we found this out last week when he pulled his tube out again.

ps: i'm eating vanilla ice cream and prenzels tipsy topping... >:]

milestones...

there comes a time in everyones life when people start to realise that you're growing up, gaining in mana... that time is now.

we have had two milestones within days of each other.

milestone number 1. he has rolled over. by himself, no help from anyone. he wondered what the hell was going on, "what did i just do?" he has done this twice and still hasn't figured out how it works. he lay there for a minute ( max ) and then started crying because he doesn't like being on his stomach!

milestone number 2. he has started food. yep, at four months of age (adjusted) he has started solids, pureed pear to be exact. it looks like some kind of orange runny goop in a jar, but he liked it. all half teaspoonful. it doesn't look like much, and its not much, but its all he gets for the initial days. of course, he ate it for a day, and has since decided he doesn't want it, but he HAS started. it is ok that he doesn't want it, it's early food days, but the end of the bottle is in sight!

ahh ... he is growing up, our wee boy...

tubelessness...

four days. four days is about as long as Harlow can last without a tube. how do we know this? he pulled it out!

last thursday, i went to get him out of his bed for his evening feed, somewhere about 6.30pm. i opened the door, he was in his cot doing what babies do and i went to pick him up. he looked a little different and i couldn't put my finger on it, it took me a good minute of looking at him to realise he no longer had his tube in. little toad had pulled it out.

it had been taped on.

ooooo that must have hurt...

so, Justine and i had a discussion and we decided to see how long he could go without the tube being put back. turns out it is four days.

he has done really really well over those four days, much better than we thought he would. he managed to meet his daily targets three out of the four days, the last day being the one where he crashed. three feeds in a row of 60mls, 90mls and then 10mls. 10mls!! thats nothing. at that point, Justine took him down to Kenepuru and had the tube put back in.

it had to go back in anyway today, he has vaccinations tomorrow he may find his energy levels are decreased somewhat.

--- a few days later ---

aren't those vaccinations are a right bugger! they have messed with him something fierce and he spent about two days crying. TWO DAYS! he is better again now, back to his normal (not) sleeping and (mostly) bottle feeding routines.

he almost pulled the tube out again yesterday. he has the tube taped to his face with a white fabric tape under which is some seaweed tape stuff that is supposed to be easier on his skin. it probably is, but it doesn't stick as well as the white tape. the end result is that the tape is almost constantly lifting from his skin in places. well ... the tape was coming off, we were just about to replace it, when ... he hooked a finger under it and started pulling it out!! had to grab his hand to stop him. he didn't like that much. Justine had to do the same thing just a few days prior as well.

--- another day in paradise ---

so, today, we went to get him when he woke up this afternoon, HE HAD PULLED IT OUT! AGAIN! thats twice in less than a week! AARRGGHH!!! so, tomorrow, as well as a skin prick test for allergies, he has to get the tube put back in. we may have to learn how to do this...

fight the good food fight...

the great food fight of 2010.

bigger than a david tua match or a david vs goliath; this should be an olympic sport! a battle of wills, a contest waged in the fiercest of conditions...

man ... vs baby.

i thought i would let you all know what the feeding situation is like over here in the Harlow home. it has been ... up and down. there are some days where Harlow shines. he manages his feeds with such finesse that you would think he had been born to do it. then there are days where he doesn't give a rats patootie and he will not even pretend to be interested. these are the days where it's hard.

for five days he shone with the fires of pride and accomplishment as he managed to complete the three day time feeds. for five days. Justine and i looked at each other and thought that the end of the tube may be just around the corner. wOOt!! that would be something.

of course, all good things come to an end. each night when he sleeps, Harlow has oxygen. one night, one of the taps was not turned on, and the oxygen did not flow. ever since then, the feeding has been substandard. for three days he took virtually nothing from his bottle. little toad. he is now starting to recover the ground that he has lost. we have turned the 10pm feed into a bottle feed and he is doing okay. this is all theory of course, we have no concrete evidence that it was the oxygen that caused him to lose ground.

needless to say, that damn oxygen bottle is checked twice and then twice again when he goes to bed.

i don't know if its related or not, but his sleeping routine has totally ... collapsed. he will sleep 45 minutes and then stay awake so long that he is too tired to feed anyway. then he will go down again ... for another 45 minutes and ping! again he is awake.

come on man, sleep a little!! you may as well get some practice in for your teenage years...

in a nutshell, that is most of the problems with Harlow wrapped up neatly in only a few paragraphs. if only the problems could be dealt with so easily.

all things will be well and all manner of things will be well ... with a little time.

the inner geek...

i'm a geek and i like statistics.

to that end, i put google analytics on the blog because i was interested in knowing who, if any, are reading it.

well, i got a surprise. i have readers!! w00t!!

its a curious thing, who is reading this and where they come from. needless to say, analytics does not in any way record any personal information. the most specific it gets is what city you are in. but it is interesting none the less.

for example there has been 806 unique visitors, who, between them have visited 3078 times. over the course of those visits, they viewed an average of 1.9 pages. good stuff!

but thats not all. they have come from 15 different countries including the cayman islands, egypt, jordan, brazil, austria, singapore, russia and hong kong. i mean, how does a tinpot blog like this end up being viewed in such exotic countries? and what do they think of Harlow's adventures?

needless to say, the most visiting countries are new zealand, australia, america and the uk.

but it gets stranger. there are hits from 10 different german cities on june 1st. 10 different cities. in germany. i don't get it. i could understand 1 city, maybe a google search returned the blog as a result and they had a nosy, but 10 different cities? on the same day? that stretches coincidence a little...

there are timing statistics as well. the most common duration someone is on the blog for is 0 to 10 seconds. to the tune of 80 percent of all visits are 10 seconds or less. ha ha >:]

what about where visitors come from? most common is a direct link, most probably from the emails i send out, but the next most common sources are ohbaby, facebook, twitter and google.

i know this is small fry in terms of blogs, but i find all this kind of stuff ... fascinating.

fascination...

fascination.

the kids are fascinated with Harlow. its a good thing really, it makes the sacrifices they have to make that much easier for them to bear. they love their little brother. it's a really good thing to see.

it doesn't matter if he is lying down with his nappy off, or lying in his bassinet playing with his toys, they will crowd round and watch him as if he is revealing the secrets to the universe.

he doesn't really know the secrets of the universe yet, he's at the stage when he smiles at the ceiling vent. yep ... the ceiling vent. he's fascinated. ( we're still waiting for his genius genes to kick in... )

the fame is spreading...

wOOt!! he has made it to the local paper!! the whitby newsbrief has run an article about Harlow's battle and the huge rallying of support from the community. it's a great article and it just shows that even in the big smoke, there are pockets of community spirit lying around that are keen to help, even if they don't know who you are.

so, i thought for those of you who don't get the whitby newsbrief, i would put it here so you can read it too. click on the image to read a larger version.

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.

a mum and her boy...

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.

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 ... )

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!

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.

oh come on...

how do you spell difficult? demanding? you spell it HARLOW. what about management nightmare? HARLOW. sleepy? happy? HARLOW. yes, i did say happy. in amongst all the problems, he is a very smiley fella.

homecare visited on tuesday. Harlow was not feeding so well, his intake had dropped over the last two weeks from well over 600 mls to less than 500 mls per day. you can try this yourselves if you like, just cut down your meals by 3/4 for a couple of weeks. thats every meal cut by 3/4. as a result of his lessening appetite, he was fitted with a nasal gastric tube. a tube that goes in through the nose and down into the stomach. when he has given up feeding from the bottle, we attach a syringe to the tube and POUR the milk into him.

at night we get to use a pump. on tuesday and wednesday night, i used the pump to feed him. i put the bottle on it, attach it to said NGT, hit the go button and watch as the milk is PUMPED into him. these are the lengths we are having to go to get him to drink his milk.

thats the feeding issues dealt with.

throw into the mix the fact that he doesn't have enough energy to go anywhere and that we have three other boys and you get parents who are not coping.

so, to give both Justine and I a break, Harlow has gone back to NICU. there is no other reason, its simply to give us a rest. while he is in there though, they are going to run some tests to see if his reflux has worsened and if that is responsible for the difficulties in his feeding.

there could be another reason for his feeding issues, he could be suffering from an oral aversion - a resistance to things being put in his mouth. if he was, you can hardly blame him. for the last five months he has had things put down his throat at all hours. at home there is iron, vitadol, vitamin e, 2x ranitidine, 2x 2 different diuretics, then 6x bottles on top of that.

so, this weekend we are going to reconnect with the other fellas; go out, eat ice cream, go to the park, all the stuff that we as parents are supposed to do but sadly never find the time.

threats blackmail and/or coercion...

he has to pick up his game!

he is being a lazy little bugger and has dropped his daily food intake down to reduced levels. nominally he is taking 150 mls per kilo. he was 4.3 kilo this morning and those of you with an abacus or two ( like @MrsLPikon - aged but nimble with a zimmer ) will come to the same conclusion as us, he needs to take 645 mls per day. with 4 hourly feeding, thats 6 feeds, or 107 mls per feed.

he is not taking that. he is a difficult little bugger to feed. he gets to the magic 40 ml mark and decides, "nup! thats enough!" and quits. he does carry on again, but you need to wake him up to do so.

its not often that he takes 100 mls, he's usually somewhere around 80 mls. that being said, there was one occasion where he took 140 mls, and outstanding effort, but that has only been once.

somehow we manage to get more down in to him but he has not met his quota for the day for a few couple of weeks now. today he will probably take 480 mls. and using that abacus again, you can see that 480 ml is less than 645 mls. by close to a third.

there is another compelling reason for him to feed properly. this has a direct impact on his energy levels. as in, he doesn't have enough. and if he doesnt have enough, then he is not going to cope with the kindy/ school run. three outings a day; morning, lunch and after school. he will go splat. hard.

the answer is probably going to be a feeding tube which makes feeding take longer. i imagine that we are going to have to feed him with a bottle so as he does not forget what to do and then top him up through the tube.

personally i think the tube is a great idea and would love one myself. imagine ... a world where you can eat all the vegetables you like AND have them by pass your taste buds. just blend em all up old person style and squirt them down the hose, straight to the stomach. done. bliss...

the status is quo...

good morning dear reader,

this is just a quick note to let you all know that things are ticking along at the harlow-house. we seem to be in a different kind of holding pattern now; a feed, sleep, feed, SQUAWK!, feed, snooze kinda thing. interrupted each evening by the "Hola!!" hour...

other than that, there is not much happening. its school holidays at present with the boys at home, the sun is shining ( intermittently ) and there is a large pile of stones on the driveway.

so, dear reader, don't give up, there is more to come when there is more happening.

cheers,
rich.

evil military geniuses...

Soldiers in the Ever Victorious Army of Exhaustion
who wages a war on two fronts? a war that is waged so skillfully, so subtlely the combatants never fully realise that they are IN a war?

who does that? exhaustion does that. exhaustion is a pervasive, subtle and skilled player in the games of intrigue and espionage. games involving more than two players.

i was prepared fora full on frontal attack by exhaustions shock troops and heavy artillary. i was not prepared for the flanking attack of light cavalry that came down out of the hills...

FRONT 1: the parents
you all know, you've all been there. the groggy three am feeds where the parents are more asleep than the child, the missed trains in the morning because you slapped the snooze button "once to many", the leashed tempers, the snide remarks that come from too little sleep and the accompanying perception changes that makes that mole hill just ... insurmountable. we are normal here, tensions are up due to lack of sleep. worry plays another big part, concern about the wee man and the energy expended in trying to feed him, they are all taking a toll.

FRONT 2: the child
this is the one i didnt know about. we have had four boys and this front did not figure in the first three. mind you, dear reader, we all know that Harlow is on the special side of things and so will figure in more dramas than your average bear. last night the battle reached a point where Harlow was being routed by the ever victorious army of exhaustion. he had been sleepy most of the day and we had to wake him up for about four feeds. he even missed his "Hola!!" hour where he cries just to remind us he's alive.

so last night he was taken to NICU and admitted again. i do not know how long he will be there this time; maybe he will come home today, maybe he will be there for a couple of days. who knows?

---

Update: it seems as though Harlow will be there for two nights, he will be back tomorrow (monday). also, it was 48 hours of sleepyness, not 4 feeds of sleepyness. got that wrong too.

---

Re-update: Harlow is coming home on tuesday. he is staying in another day so that he can have his shots and be monitored for the 24 hours afterwards.

the debrief...

we got our discharge papers in the post today, and they make for some interesting reading. there are things in there that we did not know about, which is probably a good thing. big words confuse me.

the issues:

THE PROBLEM LIST/ DIAGNOSES
1	extreme prematurity
2	respiratory distress syndrome
3	bronchopulmonary dysplasia ( chronic lung disease )
4	patent ductus arteriosus
5	intestinal perforation
6	IVH of feotus/ neonate ( brain bleed - can be bad, was not in Harlows case)
7	anaemia - prematurity
8	retinopathy of prematurity grade 2
9	breech delivery
10	oedema of newborn
11	scepticaemia - unspecified
12	jaundice - prematurity
13	necrotising enterocolitis - suspected
14	pulmonary hemorrhage ( bleeding in the lungs )
	( red = bad )

there are fourteen problems on this list. fourteen!!! how many issues can a baby have?

it then goes on to say that he required resuscitation at minute one, we did not know this. "initially poor resp with HR 90 - given 5x inflation breaths" good on those doctors... i had no idea that the actual delivery was THAT touch and go. blew me away when i read it.

then there is the treatments:

	EXAMINATIONS/ INVESTIGATIONS/ PROCEDURES
	1	SIMV/ assist control ( ventilator )
	2	NCPAP
	3	low flow oxygen
	4	arterial catheter/ umbilical
	5	umbilical venous catheter
	6	long line
	7	ultrasound - head
	8	blood culture
	9	gutherie test
	10	xray - chest
	11	ultrasound - heart
	12	peritoneal drain insertion
	13	phototherapy
	14	transfusion packed cells
		( red = bad )

i guess thats one treatment per ailment. although, we have to keep in mind that there are a few of those treatments that occurred more than once. ie, there were 8 blood transfusions and several ultrasounds of the heart and head. his blood now has more culture in it than the russian ballet or boston philharmonic!

i dont know about you, dear reader, but i don't like the thought of babies being used as pin cushions. i have no problem with needles per se, but in babies....

what i do know, is that the lower list is what helped my boy stay alive when assailed by the top list.

can't say it enough, rock on the NICU...

to whom the victory...

i want a show of hands. all those who thought that Harlow would be going back to the hospital please stand in front of the small portable guillotine. all those who thought he would stay at home, please queue by the gangplank to the cruise ship.

[ this could take a while, i know the readership for this blog has swelled to several thousand.... ]

so, while everyone is taking their places, i will regale you all with "what the doctor said".

with the most excellent feeding that occurred last night, and the massive 60g weight gain that resulted, the threat of Harlow going back into NICU was reduced from DEFCON4 down to about DEFCON1 status. the oxygen he has been taking has had a huge effect on him and he is able to complete feeds faster than a speeding oxymoron.

the debate now is about which bottles he should be using. do you know how many there are? many. many many. we have been through a few now, each with their own advantages and drawbacks. each time we try a different brand, we keep coming back to the hospital bottles. the latest candidate and the bottle used in the last feed is a NUK bottle. it was ok, he managed to finish the feed.

Aside: a small break was taken here to eat some whittakers dark caramel chocolate. and now, one with the story...

today has highlighted another issue however. travel and Harlow are not good friends. after the trip into the hospital Harlow crashed. he just slept. then the trip home made matters worse and he has been screaming since. i will not say that there is peace now, because as soon as i do, the NoiseAndPukeMonster will start screaming again.

this leaves Justine in an unenviable position of taking Harlow out three times a day next week. what's going to happen? will he end up back in NICU due to low energy levels? will be cope? will he start to sing and dance or will he crash?

tune in next week when we hear the doctors say...

d-day...

10:50pm this time. i'm late.

i have just fed the man, nay, the LEGEND!! Harlow has been taking about 55ml from me on a good day ever since he came home. guess what? he just took the FULL BOTTLE!! LEGEND!!

you see, dear reader, something changed today. the home care team came and visited and left us a tin of oxygen. we have been doling this out to Harlow since 1pm and it appears to be having an effect. a very positive effect. this is a good thing. you see... tomorrow is d-day.

whats d-day? for a start, it's not june 6th, 1944. it's tomorrow. and it's not in france, it's in wellington. and i bet the weather will be better too. d-day is when the home care team decides whether to send Harlow back to NICU - again! there has GOT to be something between him and those nurses for him to be wanting to go back over and over. and over.

he has not been feeding well over the last few days; he has been a right sleepy wee man, and when babies are asleep, they tend not to feed very well. we wake him up and he feeds some and then goes to sleep with the teat in his mouth and we have to force feed him the rest until he has had enough to keep him until his next sleepy-feed. this is what is called "a bad thing". what he should be doing is grabbing that bottle with both hands, shoving the teat in his mouth and sucking like his life depends on it. all voluntary like with no prompting from us.

so, this leads us to tomorrow. there will be a review on the amounts he has taken, how long to take said amount and with which attitude it was taken. we shall see what happens.

here's hoping he stays put. although ... those nurses ...

my thumbs are twiddling...

the time is 10.43pm.

i am sitting in a dark room typing on the laptop, the keyboard visible from the light of the screen, while i wait. with extreme patience. thats the way i roll...

the #NoiseAndPukeMonster has just been fed, he took 55 - 60ml when he is supposed to take 66ml minimum. just as well Justine is a better feeder than i am, and got more into him in the last few feeds than he really needed. if it were left up to me, he poor little bugger would starve ... fade away ... go ~poof~ when he disappeared ...

the next feed is not until 12:30am. after that, i go to bed and the morning shift starts and Justine is doing the 3:30am and 6.30am feeds. guess who got the short end of THAT stick?!? the good thing for Justine is that i tend to sleep/ snore through her feeds, so she can feed in bed and sleep in between. i'm staying down stairs so that she can sleep until her shift kicks in. i am not the quiet feeder.

i could turn the light on, he appears to be sleeping now. but if he woke i would have to sing and dance to keep him amused, and i'm just not that good.

no, i will keep ruining my eye sight as that is what fathers do when waiting to feed #NoiseAndPukeMonster's in the middle of the night.

i am father, hear me snore...

24...

jack bauer has rough days, about as rough as they get. but they are nothing on the last 24 hours in this household.

hear that? that is Harlow objecting to something. as to what he is objecting to, we have no idea! absolutely none. but he is objecting very loudly. he has been fed, winded to the best of Justine's ability (which is considerable) and still he will not settle. he has been like this for the last couple of hours.

this is not a patch on last night. from 2.00am until 5.30am he was a squawk monster. he was fed at 1.00am which took an hour and then for the next three and a half, there was a squawk, a cough, a squeek, a short wail every few minutes.

the feeding is not going well at all, he is supposed to have 85ml of milk each feed, and sometimes he has as little as 40ml. one feed he had 105ml, 90ml in one sitting and then 15ml in another because he would not settle. this afternoon he was fed at 12.30pm, 3.00pm, 5.30pm and 7.30pm, keeping strictly to his 4 hour feeding schedule. if he does not get this sorted, he will have to go back into NICU. again. we have a dietician coming on thursday to see what she can do about his intake, see if she can increase the calories while reducing what he has to imbibe (new word for the day). the less he has to imbibe, the less tired he will become, the more energy he has to grow.

i have no idea what will happen tonight, but im sure both Justine and i will be more tired tomorrow than we are today.

and then there were six...

he came home today. again.

actually, it was quite anti-climactic. there were no hordes of angels with trumpets this time, only a single low ranking cherub with a recorder. it was maybe 2:30 this afternoon, the garage door opened and the first thought i had was, "damn, Grayson has learned that the same button that closes the garage door OPENS the garage door". but no, Grayson was in bed.

the door opened and there was this quiet "hi honey" and i thought, "whats she doing here?" (i was not expecting her home until maybe 4pm or something). well, in walked Justine, toting his nibs in his capsule. w00t!!

so, he is home. sleeping in his bassinet. sleeping the sleep of the just.

now. now the hard work begins! ( this is a take 2 moment ).

i have the next two weeks off, helping out round the house, getting underfoot and generally bothering Justine as much as is inhumanly possible. my main job is to take the boys to school/ kindy (love that stuff) so as to save Harlow the "school run".

---

now, dear reader, i want you to step back a little and see exactly how far Harlow has come.

• born : november 19th, after 24 weeks, 6 days.
• due : march 5th
• 1st graduation : after 111 days on march 9th ( mum and dads anniversary has been recycled )
• 2nd graduation : after 117 days today

this is how he started life. 725 grams with brain issues, stomach issues, breathing issues, eating issues. he was so SMALL!! its a wonder that something that tiny and wee can have such a HUGE impact.

almost four months later and he still has us dancing to his tune, hopping when he says hop. he is a little bigger now, 3.4 kilos. almost five times his starting weight. the breathing thing has been conquered, the feeding thing is being conquered, the brain is good, the stomach is good and he looks so different!! he has filled out and has all the baby rolls that he is supposed to have, squawking like he should...

time is the biggest ally now. the longer he can be kept at a minimal energy expenditure setting, the better he will be.

a kick in the teeth...

so... Harlow has gone back into the hospital. he was with us for less than 24 hours. what a kick in the teeth.

as i have said before, we bought him home and he refused to feed properly. the feeds got down to 30 out of 100ml. Justine rang NICU and they said to bring him back in and they would check him out.

turns out his CRP levels are elevated (a sign of infection) and so they have placed him in isolation and have put in an IV line to administer antibiotics. as well as this, he is nil by mouth, being fed through another IV line delivering lipids. he had these way back when, but we thought that this was over with. he's a big fella now.

but wait ... there's more ... to add final insult to injury ... HE IS BACK ON CPAP! machine assisted breathing!

Justine is staying in the hospital tonight. Harlow is in nursery G which has a bed so Justine is camping out.

i guess this comes back to what we were told earlier on. the NICU baby is a backward and forward baby, some steps back, some steps forward. i didn't think there would be so many backward steps all at once!

beer and bollocks....

dads night. i felt old this time, Harlow's been there 112 days, the others dad's babies have been there 5, 4 and 4 days. one is a 27 weeker though, so they will be there for a while, but the others were expected to last only a week or two. ~sigh~

but there was beer.

and there were biscuits.

and nuts.

in fact, the main reason for going is probably to have the beer with guys in a similar position to yourself, without the wives worrying about that their husbands are saying.

two of the others were first time dads so during the discussions i gave them some advice.

advice: DO NOT FORGET YOURSELVES
a dad is for children to look to when the going gets tough, for wives to look to when entering uncharted waters. there is no one for fathers to look to for support. this kinda makes things difficult for a new dad. there is "who's a clever baby then?" for the child, there's "you did a great job!" for the mother, but whats a father get? "didn't your wife do well?". great. go celebrate your new child by buying them a power tool, a really big one; or a large flat panel tv (look what the baby fairy just gave me??). you will need something lest ye explode.

advice: take control when the wife is in hospital.
theres two scales to this, the small and the large. SMALL: your wife always gets the yellow milk and you can't stand it? get the blue!! she will discuss the fact you got the wrong one, but you will still have blue milk, so it's ok. thats on the small scale. there is a larger scale out there too... LARGE: imagine the following conversation and the implications thereof: "hello dear, we had ourselves one of those freak tidal wave things, it made it's way through the house and took out the pink wallpaper you like so much in the toilet. it was the oddest thing. it left all the rest of the wallpaper alone." large changes like this are a little bigger than yellow/ blue milk scenario and you should proceed with caution.

advice: take pictures.
your time in NICU is more of a journey. if you do not take pictures, you will forget just how far your child has come. in Harlow's case, i take my wedding ring off my finger and twirl that around for a while remembering how far up Harlow's arm it went. puts things back in perspective for me.

other than that, i guess a dads main job is to keep everything else as normal as possible. keep farting during the quiet moments, keep forgetting to pick up the one item (canestan) from the groceries list until it looks as though your partner is going to meltdown in a most spectacular way.

ps: i really DO need to get some canestan.

and there he goes...

well, he came, he saw, he refused to feed and he left again. that would have to be the shortest breakout in all of breakout history.

we bought him home, he lay in his bassinette, we went to bed. during the night he refused to take more than 50ml out of the bottle before he quit. this morning, it was 30ml and then he quit. so, he has gone back into NICU while a decision is made as to whether he has trouble feeding, or if he is a lazy bum.

so, we're back in a holding pattern. if he is going to be there for a while, i will have to go back to work and take more time off later, Justine will go back to spending afternoons in the hospital, the kids will go back to wanting mum home...

~sigh~

but! we will see what happens over the next few days...


update: he has been readmitted for a few days to see whether he can get his strength back. he was pretty tired...

thoughts on a homecoming...

well, it's done. Harlow is home.

it took about 4 hours to clear the neonatal ward today. it was very "officer and a gentleman" like; us with Harlow, walking through a 21 nurse salute, being cheered as we walk our way into a bright and promising future....

Justine was crying, the nurses were crying, the other mothers were crying, it's a wonder nobody drowned >:]

we were due to go about 12 pm but had to wait on a prescription which led into Harlow's feeding time which led into a period of "lunch settlement" and THEN we went home. after saying goodbye to some nurses in ward 4 north.

the trip home was uneventful, he slept all the way as we drove the streets lined four deep with adoring well wishers. Caiden was buzzing when he made it home and he had himself a cuddle. Cohen watched "the arrival" avidly and Grayson ended up patting Harlow on the head, the way he does when he is really excited. We will have to watch that.

now ... the hard work begins. sleepless nights, leashed tempers, jedi mind control on the children ( he is not a toy!! ), keeping the cat outside so she doesn't sleep on Harlow's head. and for me, the "what am i doing wrong/ what should i be doing" guessing game. i love that game.

it's worth it though. knowing he is home.

random stuff...

the star

the brothers

their last visit

soon...

ssshhh!!

patience grasshopper...

not long now...

107 days late...

only 107 days late. 107 days or 2568 hours or 154080 minutes. just imagine what you can accomplish in this time? you could watch "the mummy" over 1200 times! or complete 321 working days ( based on an 8 hour working day ). crap..

Harlow has been waiting 107 days for today. TODAY!! today, my friends, is the day that Harlow was supposed to be born. wow... just thinking about what the last 107 days SHOULD have been like and thinking about what the last 107 days have ACTUALLY been like, the differences are ... large.

the first being: Harlow OUTSIDE of Justine. actually, thats the only difference that matters.

its been quite the ride. theres been ups and downs ( more ups than down thankfully ); many trips into town; many badly cooked dinners. much stress. the list goes on.

Harlow has changed somewhat over the last 107 days, he has grown! from 725 grams to 3.1kg. thats huge! he has left all the breathing machines behind, left the incubator behind, the IV lines, the monitoring etc. all gone. he has OUTGROWN all that.

the next step is Harlow coming home. where he belongs. with his family.

so, i guess now, its waiting. waiting until he is bottle fed each feed, waiting until he gets the green light to come home. hopefully, not too long.

then its watching whats going to happen. first day of school, first girlfriend, first award ceremony, first nobel prize. watching him make a family of his own ( i realise im jumping forward a little here ) but its all in the pipeline.