and so it all ends ...

welcome dear reader, to this the last post in the story that is Harlow.

i don't know how many of you there are, or how often you read the scribbles i write, but now, it is coming to a close. i thank you for reading this, for commenting, for the support you have given us since he was born. i may not have replied (im terrible at that), but please know, the comments were read and appreciated.

Harlow is now two years old. he has beaten everything that has been thrown at him and has come out the other side laughing. all because he will not take no for an answer. if he wants something, he will dig in his toes until he gets it and this goes for everything. he never sits still ... he opens every draw, and then proceeds to pull everything out in case there is something at the bottom he hasn't seen ... he laughs ... he smiles ... and he makes everyone around him happier. most of the time ~:)

he has been classified as mostly normal, glasses and minimal cerebral palsy aside. this is simply awesome. it was not what was being thought two years ago.

i don't really know how to proceed from this point, i'm at a loss as to what to say, so i will leave you with some photos. they say more than i ever could.

thank you.

rich.

a little too tired to eat dinner ....

5 easy bullet points ...

mornin' y'all ...

first off let me apologise for not saying hi earlier. when Harlow got signed off, he became "just another boy" and this became "just another blog" about "just another boy" ... i kinda figured there are a million blogs about a million boys, so i would give it a rest for a while. well, a while has gone past and i now realise that there is a bit more to talk about after all.

so ... here goes.

1/. crawling.

it had to happen, as it happens to all children. they become mobile. in january he started to crawl and has not stopped since. he crawls everywhere, pulls himself up where ever he can, nothing is safe anymore. you should have seen how pleased he was with himself after crawling up all 16 stairs! grinning like a loon he was. he will pull himself up on anything and everything and he can also climb. i got a phone call at work the other day, it was Justine, laughing so hard she was having difficulty talking, asking if it was ok to take a photo of Harlow with his head stuck down the loo and his feet in the air before going to rescue him. heh, go for it `:)

once again, the high water mark in our house rises.

2/. Jill.

for a year we had the pleasure of a carer for Harlow. Jill would come in three days a week and look after Harlow for the morning so that Justine could do the school runs and get out of the house for a while, stave off the cabin fever. well, in may, Jill had completed her tour of duty and we have sadly said goodbye to her. she came in, looked after Harlow (you should have seen him welcome her in, he loves her), lent the boys books to read, made the best damn pikelets this side of anywhere ... she is welcome here any time she chooses. we are poorer for her not being here.

3/. glasses.

yeah ... glasses. Harlow has to have them. apparently he is extremely long sighted, a plus 10, with an eye that points in more than it should. heh, it its funny to see him with them on, they last for about 5 seconds before he starts to pull them off and chew them. we tried the glasses for a while but with him refusing to wear them, we've been told to hang fire for a few months. it will be interesting when we put them on again, to see what he does.

4/. hospital visit

last weekend was interesting, we had sickness though the family the previous week and Harlow had been sick. he was full of snot and congested, rattling when he breathed. sunday afternoon (the 12th) Justine realised he was sicker than he appeared and took him to wellington a&e. he was admitted and spent two nights sick in the hospital. he was also refusing both solids and liquids so, you guessed it ... back in went the NGT. bugger!

i tell you, it was very quiet at home for those two days.

he came home on the tuesday, looking so much better (and leaving the NGT behind). he had had two doses of strong IV antibiotics which must have kicked whatever it was that he had. he has continued to get better since then but is still a little rattly. he also slimmed down a bit, but that may have something to do with hospital food `:)

5/. cerebral palsy.

with all the bullet dodging that Harlow has done, we feel pretty lucky to have such a normal boy. but ... not too normal it turns out. he had a paediatric visit today and it was confirmed that he has a mild case of cerebral palsy caused by his extreme prematurity. if you don't know what it is, there is a good explanation here. his case is mild, he seems to be affected in the left leg only. we just have to keep reminding ourselves, it could be much much worse. still ... it was pretty hard to hear.

with this news, we also received a walking frame and a pair of gnarly shoes, both aimed at helping him stretch the tendons in the affected leg and get him interested in walking. he can use the frame really well, but unless he chooses to, he will not. he's stubborn that way... a matriarchal trait.

and there you have it, almost five months development in five (mostly) easy bullet points.

today ...

shout it out loud!!

yeah .. im lookin' at you

hello dear reader,

it would appear that our wee boy is growing up! he has outgrown his tubes, he has outgrown his wires, his beeps and burps ... well, wishful thinking there i guess, he is my boy after all.

over the last month, the oxygen bottles have been returned, the apnoea monitor has gone back and the feeding pump has gone to feeding pump heaven. he no longer needs these things, these things that once kept him alive. he is no longer on the endangered species list.

woo and hoo `:)

there has been one more change over the last month, our social worker Lorraine has also moved on to other children, children who need her more than Harlow does now. this is a vote of confidence from Lorraine, its only when the babies complete all 7 exams that they are considered qualified to roam around without minders/ keepers/ those who give guidance.

[ actually, if you could hear him right now, you would swear that he was a normal, if slightly grumpy child. he is currently howling at the indignity of having to go to bed. ]

even the food thing is mostly a non-issue now, he eats with gusto! mostly! the last hurdle is him drinking out of a cup, he tends to gargle a bit, then look surprised while it dribbles down his chin...

so, dear reader, it looks like all is going well, all systems green, all orifices are being used in the correct manner.

HE IS NORMAL!!!! WHO KNEW!!!!

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...