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.