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.