April 23, 2010

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.

April 14, 2010

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...

April 9, 2010

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.


April 4, 2010

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.