the difficult and troublesome art of thinking...

While I'm thinking about it, I need to thank the staff at the NICU for their efforts at brightening up a Christmas that was already difficult enough. Walking into the nurseries to see Harlow dressed in his first shirt (with presents all over it), lying on a bed with teddy bears, snowmen and Christmas flowers, that was pretty damn cool. Seeing the staff in wings, antlers, a Christmas tree(!!) ... Your efforts have been noted.

Not to mention the fact that the entire family got to see Harlow as well, all at once. That probably will not happen again.

So, to all of you who made the food on the trolley, funded and distributed the presents, decorated the wards, those who had to work on Christmas day...

Harlow thanks you.

We thank you.

>:]

the twelve days of christmas... [ neonatal style ]

On the twelfth day of Christmas, Harlow gave to me ...
    twelve lights a-flashing
    eleven monitors beeping
    ten weeks more growing
    nine mls a-drinking
    eight mothers expressing
    seven people visiting
    six "desats" an hour
    five hundred grams
    four squawking roomies
    three heart monitor pads
    two angel wings
    and a pair of booties on a christmas tree

Please note: the above song has been limited to the final verse due to length and a lack of will to type that much.  Also, the five hundred grams is now much weight he has put on since birth.

And now for something completely different...

On Christmas day, I sat down to Christmas lunch and tried to make a sandwich out of two slices of bread and an entire ham. It did not work (*sad*), but I had options. Harlow does not enjoy the same options available to those on the "outside", but of those he is able to enjoy, he is making great inroads. He is now taking seventeen mls of milk every two hours, a huge improvement over even a week ago. His consumption of TPM (Nasa trail mix) has dropped to about 1ml per hour and with only a little more milk, his long line will be removed. Sign of him being a big boy...

He has also had an eye test. Grumpy little ass that he is, he did not like it and let it be known. A common problem with really pre term babies is that the receptors on the retina do not develop properly. If left untreated, this will have a negative impact on his vision as he gets older. The scan picked up something odd (we don't know what, we were unable to decipher the notes in his folder) but he will have another scan in a week to see if the abnormality is still there. Fortunately, this kind of problem is easily fixed with lasers and stuff, so, this should not be a problem for long.

This leaves the final hurdle. (Final = poetic licence, there are still many hurdles to go.)

He has heart issues in the form of a PDA, or patent ductus arteriosis. Blood travels different paths depending on whether a baby is still in-utero or not. Out of the womb, blood travels from the heart to the lungs via the pulmonary artery before coming back to the heart and then on to the body through the aorta and back again. The lungs oxygenate the blood ready for use by the body.

While in the womb, there is no need to use the lungs to oxygenate the blood as the blood from the placenta is already oxygenated. Therefore, there is a short circuit, the ductus arteriosis valve. Blood headed to the lungs is diverted to the body by the valve between the pulmonary artery and the aorta. When a baby is born, the valve closes and the lungs start oxygenating the blood.

Harlow's valve has not closed yet. The short circuit is still open. He has had three courses of medicine to close it and still it is open. Stubborn. Like his mother. The alternative to medicine is surgery, a titanium clip across the valve to close it. The consultants are still optimistic that it will close.

So, in a nutshell, that is life in the neonatal ward.
>:]

Cheers,

• Rich.

PS: I have not forgotten about the kilo cake...

the buddha finger...

There is something magic about a kilo.  One thousand grams.  One thousandth of a tonne.  A litre of water is a kilo, two blocks of butter is a kilo, four bars of chocolate is a kilo, and now our boy.  With trumpets sounding, the angels singing in heaven, Harlow has crossed the kilo barrier and is sitting comfortable at 1.014 kg.

I know, I know, your right.  Four bars of chocolate is not a kilo!  Not since Cadbury decided to short change everyone.

This is of course a temporary title, one good pee and he could be back languishing in three digit grams again.  But he is there, he made it.

Now, according to the "Nurses of the NICU", there is a wee ritual that happens when a really prem baby crosses this most magical of milestones - the "kilo cake".  We, the parents, are required to provide said "Nurses of the NICU" a cake to say thank you for looking after Harlow and making sure he has had this milestone to cross.

No problem.

I will even bake it myself!

My son, buddha in training...

two weeks since my last confession…

Hi y’all…

I know, I know, I’ve been a bit slack on the update front, it has been two weeks since my last confession…

Things have been fairly stable here at the Harlowdome. There have been a few events worthy of note, cuddles, food, no food, no iv, iv, etc. I have listed them below.

True, I should be recounting events from both of the last two weeks, but those of you who know me will realise that there is no hope at all of this happening. I have trouble remembering yesterday, let alone fourteen days ago. I have had to pillage Justine’s memory for the events of the last week. Justine remembers everything, she’s good like that.

So, let’s get started.

The week started well with:

• A cuddle for Dad
• The IV drip out
• No antibiotics
• Nearly no insulin
• 3ml feeds every 2 hours.

I mean, with all this, what could go wrong??

[jinx]

A few days later:

• A cuddle for Mum
• No food with a bonus of green “gunge” in the stomach
• The IV drip back in
• Two antibiotics
• Chronic lung disease
• Physio (to battle the chronic lung disease. This is also on the list of “enjoyable activities”)
• Both eyes open, looking around. (I have this on film!)

We were told when all this began that there would be weeks where it seems as through everything is against Harlow and he would be stepping back more than stepping forwards, it appears that this is one of those weeks. Overall it sounds as if it is gone to hell in a hand basket, but the nurses assure us that he is doing ok and that it is just part of being prem.

One discovery that may not startle you overly much is that he has attitude. No, let me rephrase that. He has Attitude. (He gets it from his mother). Between the handling that he is getting during “cares” (nappy change, temperature, blood gases, repositioning) and the handling from the nurses, he has started to holler and shout and then hold his breath. He will flap his limbs as well like he is trying to take off. The only handling he really likes is the cuddles. He will lie on you for hours, relaxed, virtually asleep. We have been told by more than one nurse that he is most relaxed when he is having a kangaroo moment.

Events being scheduled:

• Stomach x-ray
• Chest x-ray
• Brain scan
• Dye test to see if the stomach hole has healed (oral iodine with time lapse x-rays to monitor progress through the body)

He is putting on weight well in spite of not being on milk. He is currently 980 grams. Seems the “kilo cake” is not too far away. w00t!! >:]

That’s about it.

Cheers,

• Rich.

dodging bullets...

Who here remembers Sledgehammer? The crazy cop from the '80s. "Trust me, I know what I'm doing". Well, I do. One scene in particular. Sledge is standing in the street, arms akimbo, in a duel. He is facing a man with a 44 magnum who is intent on putting Sledge into the ground. There's a loud bang as the man fires, and then silence. The smoke clears, a bird sounds. Sledge is still standing there, he hasn't blinked or moved in anyway, but now there is a shiny bullet caught between his teeth.

He dodged the bullet.

That's kind of how I feel right now.

The problem with kangaroo cuddles is that if the person is sick when giving the cuddle, there is a high chance that whatever infection/ virus he has will be passed on to the child. I had a cuddle on Sunday and spend Monday "under the weather" at home. There was a virus through our family with Cohen puking and Justine feeling not so well. I thought it had missed me, but it was merely playing with my head and waiting an extra day.

With this taken into consideration, I should never have had the cuddle. Had I been thinking, I would never have had the cuddle.

Infection is one of the biggest killers of premature babies.

Its been a hard few days, wondering whether I had killed Harlow or not.

He has been fine though. There are a few indicators to suggest whether he is ill. Bradycardia episodes, respiratory issues, discolouration, elevated CRP levels. He has none of those, and after three days, if he had caught whatever it was I had, he would be showing some signs at least. This being said, the vigil continues. He will be monitored closely for the next few days as well.

I breathe again.

give me some skin...

I have to admit, kangaroo cuddles are cool. Damn cool.

I had mine today, and I kid you not, it was awesome. From 15:10 this afternoon for an hour, I had Harlow on my chest, snoring his asses off. (He takes after Justine!)

Had to go through the same drama as Justine to get him out of the incubator. Short tubes on the left (oxygen, pulse, breathing stuff), long tubes on the right (insulin, lipids, food, IV and antibiotics) so I was on the left side of the Harlow House. Even so, the drip was too short to remain connected while Harlow was out, so they disconnected that one.

I stripped off my t-shirt and donned the sexy white gown (ooo!) and sat on the comfy chair. I bared my breast to the nurse, Anna today, and Harlow was placed upon me. Once again, it made me realise just how ... small he is. He was shuffled and moved all around until Anna thought he was comfortable (losing me a pound of chest hair in the process - rubber gloves tend to grip, really really well) and then we were left to it.

There was some nail biting, edge of your seat tension while the breathing tubes kept coming off. Its pretty hard for Harlow to breathe without those. Then the CPAP kept losing its seal around his nose, the air going in his nose kept coming out his mouth when he opened his mouth, both reducing his oxygen saturation which is not a good thing. And he wriggled!

Eventually tho, we had the breathing thing sorted, the wriggling sorted and all was good with the world. It was good. And warm. And I almost fell asleep.

Awesome >:]

Oh, and he had his first feed (post perforation) today.

something about kangaroos...

In a sought after first, Justine, mother of Harlow, had a kangaroo cuddle today.  After two weeks of "hug isolation", the much hoped for, highly anticipated hug occurred, this afternoon, at 1620 hours.  Yes, you heard it here first.  Mother Justine got to have a kangaroo cuddle with son Harlow.

There were several hurdles that had to be navigated: antibiotics not quite dispensed, a needy new arrival to the ward, logistics of exactly how the hug was to occur ( organisation of cords and cables ), but once all the problems were solved, the hug was on.

Easing into the chair, Mother Justine experienced a moment of panic when several alarms started blaring, all at once, in a painful shriek.  But then, maternal instincts and technical savvy kicked in and the hug went ahead smoothly.

In fact, the hug was so smooth, Harlow was so relaxed, it was over an hour before he was placed back in his Harlow House.  The nurse, Emma, reported that it was one of the best kangaroo hugs in the history of the Neonatal unit. [WARNING: post may contain some exaggeration].

Of course, during this hug event, Father Richard ( bless you my child ) was watching, quietly, from the sidelines.

Tomorrow, another hug event may occur, depending on times, work availability etc, this time with Father Richard ( bless you my child ) instead of Mother Justine.  With Harlow being so little, hugs are limited to one a day.  More than that and he will be too tired.

milestones and achievements...

he has opened one eye.  cracked his eyelids, took a quick peek and then closed it again.  or so i have been told. i had to be told, because i was not there!!!  huh!!!

thats pretty damn cool tho.  probably got a huge fright at seeing some hovering blurs, one of them shrieking and crying "he's opened his eye!!".

wish i had been there...

and he had another brain scan today, with positive results.  the bleed has not grown in size and the doctors are now discounting it until 36 weeks.  sounds as if it was a bit of a non-event >:]

a good day!!

not the nine o'clock news...

Hi y’all,

It has been a few days now and there has been stuff happening.  Not heaps of stuff, just … stuff.  Firstly though, Harlow is doing ok.  All systems green, all readings are normal…

Much to the relief of the children, Justine came home on Thursday.  “Phew,” they said, “real food!”.  All I can say is … “Phew, real food!”.  When Justine came home, she said “Phew, real food!”.  (I believe Justine is the only one with any right to say that, the food at the hospital was mostly “Chefs Choice” (when it arrived) which left her guessing what it actually was.)  The kids are loving her being home, it’s as back to normal as it can be for the meantime.  There is a huge amount of travel in and out  but with Justine being home at night, nothing is impossible.

Now, before I go any further, all kudos to those children of ours, Caiden, Cohen and Grayson. With all that’s been happening, they have been right little troopers.  Caiden has a fair grasp of what has been happening and for all that, he hasn’t let it affect him too much.  So, I’m considering bestowing the title of “minions” on them and setting them loose on the world.  Not entirely sure if the world would survive…  Could be apocalyptic…  You have been warned…  Go my pretties…

Events over the week.

• As you know, last Monday was a bit tough.  A stomach perforation and a bleed to the brain.  The bleed, no one can do anything about, but the perforation led to an operation where two penrose  drains were placed in his sides.  Well, the drains work.  They have been spewing yellow crap all week and are still going, although the levels of yellow crap have reduced.  No one needs high levels of yellow crap.
• He has had two bradycardia episodes over the last couple of days.  This is when, for some reason, the heart rate drops to below 100 beats per minute.  There is no know reason for this, it just happens in preterm babies and it is not considered dangerous.  [ Wikipedia entry ]
• On top of all that he has had two transfusions of red blood cells.  The 11ml transfusions have been to replace what has been used for blood tests etc.  He goes through a fair number of tests to make sure that all his gears are … gearing(?) right.

• He is still on the ventilator and will be for a few more days.  After the surgery, he was to have 10 days on the ventilator, this is almost up.  There are three days to go.
• His CRP levels have dropped by two thirds.  This is used as an indicator of any infections he might have.  His reading was 24 and is now 8.  When it gets to 3 the antibiotics can stop.  All good news >:]
• There are more issues with his fetal duct.  It appeared to be closing quite well when he had an ultrasound a few days ago but has now opened up again.  Dr Petal has indicated there is more blood flowing through it anyway.  I have included a diagram of exactly what/ where the fetal duct is and what role it plays for those who don’t know.  I include myself in that number.  This is also not very serious, he will be in another course of “magic duct closing medicine” so it should close up soon.  
• The blue light has been taken away as his jaundice has disappeared.

Oh, and of course, I have changed his nappy.  Yep, and you want to know what?  It contained the “perfect poo”.  It was empty.  I can deal with empty.  His kidneys work too, while I was changing him, he tried to pee on me.  I am not happy about this and I will be having stern words if it happens again.  Note: Justine has just told me that he had not poo’ed at all, that is not a good sign.  She is waiting for the poo.  (She can have the poo).

Well, that’s about all I can think of.  It’s probably enough, there is only so much ramble a person can absorb at any one time.

Cheers,

• Rich.

that feeling...

you know the feeling you have when your walking around the supermarket, you know you want something, but for the life of you, you don't know what it is?  you feel like your missing something.  this feeling gnaws at your vitals, drives you crazy and will not go away, no matter what you do.

that feeling has gone. i've had it for four weeks and it has disappeared.

Justine came home today, much to the boys relief.  they know that things will now be organised, on time and under budget. as well as being edible.

theres sadness here as well tho', Harlow is still in his bed at the hospital. its hard leaving him and not being there, but there are benefits to everything: there is no hospital food at home. none.

i guess you could say that the hard road starts now, the trips into town, the juggling of home life, work life and children life and now, Harlow life. for the next few weeks, all will be good.  i'm home for another week and Lisa is here for some time after that. not really sure what is going to happen once she returns to Raetihi, but that's a problem for another day.

go the fifth!

today was a better day, there was no backward slide, Harlow was doing everything he should.

he did have an ultrasound today, checking out the fetal valve on his heart. with 4 doses of whatever drug it is that closes the valve, it is almost closed. could be as long as a week until completely closed tho'.

the guy who did the ultrasound was damn clever, you could see the walls between the chambers, the valves opening and closing, the blood flow between the chambers and in and out of the heart etc.

clever.

there are some non-facebook pictures here : Harlow

I've got the fourth day blues...

Hi y’all,

Day 4 dawned this morning, full of promise and magic … then 0530 struck. The doctors noticed something wrong with my tummy. It was an odd colour and distended. I didn’t do anything! Promise! Seems something bad happened overnight and I got a perforated stomach. That’s a hole in my stomach lining. I was breathing ok, ( by myself too!! ), but somehow the air that was supposed to go to my lungs was diverted to my tummy and it started to swell. Not sure what happened then, but a small hole appeared and air started leaking into my body.

Mum and Dad came in, signed some papers and then I had an operation. Two penrose drains were placed into my sides that allowed the air to escape and my tummy to go back to its normal size and man, I feel so much better! Thanks Dr Pringle! I was so good and I didn’t even get any lollies. I will have to collect those later on. Of course, this means I’m back on the ventilator and have stopped having any of Mums milk. Don’t worry though, it’s only for ten days and then I will be back on track. You watch.

That’s not it tho. I tell you, when I have a bad day, I go all out.

Not long after the tummy problems, I had a brain scan. You see, it’s pretty common for us really wee ones to get a brain bleed and I have one. It is just a small one, and before you lose it, it may mean nothing. It’s a grade one bleed on a scale of one to four. ( Four is pretty drastic, my doctors would be coming to talk to you. ) Mine is only a grade one, with no guarantees of anything bad at all. Good huh? They will not know if I will have any issues from this for a while, they need to scan my brain again at 36 weeks to see if there is any damage and if so, where it is. They can guess what kind of man I will be by knowing that.

So…

Here I sit, well, lie actually, under the blue light, just chillin’, wondering what the weather is like outside…

Cheers,

• Harlow Eli

PS: I am my father’s son, there are some lovely nurses here >:] (don’t tell Mum!!)

Funny thing happened on the way to the office today...

Hi y’all,

So, it’s not quite another week, but there is some news that just won’t wait.

Over the course of history, it has always been the women who have been impatient, wanting everything yesterday, demanding things be completed faster than humanly possible, etc. Today, it was my boy. That’s boy #4. Harlow. He couldn’t wait for his allotted 40 weeks to be up, he had to come now. Today. At 4.05am this morning. No… not March the 5th as was expected by all, November the 19th. 15 weeks, or 107 days, early

The plot unfolds… [please note: this is from a man perspective, actual events may vary]

1. Phone call at 2:30am from Justine saying she was having contractions again.
2. Text at 3:08am from Justine letting me know she was back in the delivery suite.
3. Phone call at 3:45am (ish) from a midwife saying that I might want to come in, Justine is very upset.
4. Arrived at the delivery suite at 4:20am, to find I was 15 minutes late.

Bugger.

Using complex mathematics, a nuclear time piece and some frozen peas, that puts him at 24 weeks, 6 days. A little bit early.

Note: The delivery was a standard delivery, not the c-section which Justine had been told she would have. Also, when she had to push, she pushed once. Only once, and he was out. Ass backwards. With no fluids. Justine is one tough chick.

From there, he went to NICU for his grease and oil check where I got to hold his hand a bit. After Justine had some breakfast, we went back to NICU and Justine held his hand for a while. He has hoses/ lines/ cables/ strapping etc on him going every which way and is connected to some very impressive looking gadgetry. Beeping here, whooshing there, flashing and graphing everywhere…

His stats are good, there were several comments on how stable he is. His oxygen saturation is great, he is pink (a good sign apparently), his limbs are flailing uncontrollably (another good sign) and is just lying there, looking like a small pug dog with wet fur plastered to his head.

There’s a long road ahead, some big battles to be fought, but with a little luck, he will be right as rain.
Here’s hoping.

Cheers,

• Rich.

PS: I spelt his name wrong. Its Eli, not Ely. Me, his father, spelling his name wrong. –sigh–

The Baby News: Bulletin #3 - where we hear the doctors say ...

Hi y’all,

Welcome dear reader, to this, the third chapter of the baby bulletin. Today we reached a milestone. A turning point, you could say. Today … [drumroll] … we reached 24 weeks!! A monumental event in the life of the wee lad, a cause for celebration, dancing in the streets, random midnight trysting… no no, scratch that one, not allowed that one.

This means that he is now granted a 50/50 fighting chance of making it and each day that he stays put means the percentage goes up and up. The higher the better I say.

Tuesday was a busy day. A scan in the morning and a meeting with the Neonatal doctors in the afternoon. The scan was about what we thought it would be, the amount of fluid around the baby has reduced dramatically. We were warned that this would be the case, and they were not wrong. The heartbeat is still strong, and what fluid there is, is doing what it should, so for the mean time, he can watch tv a bit longer.

The meeting with the neonates doctors was a bit of an eye opener. Admittedly, when doctors talk about things that can happen, they have to state worst case, just in case it happens (they have some big asses egos reputations to cover maintain). The things that a baby can go through/ have happen when born at 24 weeks sounded all too much like a litany of despair. The list of things that can go wrong makes for some heart wrenching reading. It can affect all parts of them, from digestion to motor control to thought processes to just about every damn thing under the sun.

At the end of all that, they said that some of the more serious conditions (extreme cerebral palsy!!) are fairly rare and rarer still the longer he stays put. Thanks doctors.

I tell you what, the stuff that little Harlow Ely has put us through, he had better be the best behaved boy on the planet.

Once again, thanks to those who continue to help, ( I suspect ) at no small cost to themselves. Those that visit, those that transport the boys to and from school, those that call and keep Justine’s mind occupied on other things. She is learning to knit!! I know!!

And with that, dear reader, I am going to go. The hour is late, the eyelids are drooping… any longer and I will start to snore. You don’t want that.

Cheers,

• Rich.

Welcome to : a whole new ball game.

Ok y’all,

So, It’s been a week, lots can happen in a week. The biggest news is that the hospital has waded into the battle and given Justine steroids to help speed up the formation/ growth of the baby’s lungs. Fantastic news! It’s almost as if they have declared that the wee man is now worth fighting for. All kudos to Jeremy Tui for making that call. No longer do we fight alone…

I guess, not having been through this before, I’ve not really thought about how far along a baby has to be, to be considered a person.

Now?

I have an opinion.

That being said, here’s hoping the steroids do not have any side effects. If Justine starts to shave her face, I am going to have to “reconsider” a bunch of stuff.

As of Monday, the wee man was 530 grams. One pound, 1.6 ounces. ( is mixing imperial and metric legal? ) Small… like a banty rooster, giving it all he has. ( It may have been that he crossed the magic half kilo that helped make the decision for steroids. )

As usual, the support from friends and family is unprecedented. I really don’t know what to say. [ Flashback to Wayne’s World: We’re not worthy! We’re not worthy! ]

Thanks to everyone who has visited Justine, you all know her, you know how much she enjoys sitting on her ass… I think know that those are the moments she enjoys the most. She cried when the boys visited the other night.

Anyway, enough delightful and witty banter, I have vacuuming to do.

Cheers,

• Rich.

PS: just so you all know, we had pizza the other night. Mmmmm… pizza.
PPS: No beer tho >:[

developments, circumstances and general "whats the haps"....

Hi y’all…

This is an email to let you all know what’s happening. As you all are aware, Justine is 21 weeks and has been bed bound with some bleeding and such. This changed on Wednesday night, Thursday morning. She had a pretty large bleed, we called the ambulance and presto changeo, she is now in hospital and not allowed to come home. Not until the bleeding has stopped anyway. Scary stuff.

Just before you all have kittens, she is fine, the wee fella is fine also. According to the 58231 scans that we have had, he is growing, kicking, watching tv, just like he should be. The blood is mostly Justine’s, which although is not good, she can at least get transfusions if required.

The boys are finding it difficult, stuck at home with only me for conversation. I tell you, as far as “Mr Mom” skills go, I’m no Justine. They will cope tho, once they get used to pizza and beer. No wonder they miss their mum…

All that being said, it has not been too hard, mostly due to the help that Justine’s friends and family have provided/ are still providing. I would list them, but there are limits on how big an email I’m allowed to send. So, I will simply state the obvious : Thank you.

So, there you go. If you want to talk to her, she is in “Ward 4 North”, bed 20. In the new part of the hospital. Go up the orange lift to level 4, turn right, then left, then ask at the desk. Her mobile is : 021 2679039.

If I’ve missed anyone, call me a dork and forward it on…

Cheers,

• Rich.