Hi all!

What an exciting Saturday! Mom and Dad arrived early, as they didn’t have to go to work. I’ve been spending time inside an oxygen box, but that came off the minute my parents arrived, as overall my stats are relatively stable. After Dad did the usual changing of nappies, Mom feed me for a while on the boob. After about ten minutes of this, the cruel adults decided to try me on a bottle for a while. Yes, I know this is part of prepping me for getting me home, but hey, at the risk of me going hungry? No way José! I did try protest, but before long I was in Dad’s lap, being bottle fed, well more, precisely, I did some bottle dribbling. Dad has incredible patience and tried for the better part of half an hour to bottle feed me, to no avail.

Dr Hay was on duty today, so she spent most of her time with my Mom and Dad during my feeding, at which point they popped the question to her: could I go outside for a while? It was a brilliant early spring day with a strong sun and warm ambient temperature. She agreed immediately, and Mom and Dad sprang into action. My monitoring equipment was rapidly detached and my drip was temporarily clamped shut and uncoupled. To not get a chill my Mom put me in a beautiful fleece gown, and we were off.

I was carried next door to the Labour Ward staff room where there was a sliding door onto a balcony. The nurses there were ecstatic to see me and my folks. Mom and Dad had come to get to know these nurses quite well while I was in utero (in the womb, not the Nirvana album!), as a weekly scan was done to check my resistive index in the labour ward, leading up to my arrival. Greeting and cheers went about the staff room as many of these nurses had not yet met me. All I could do was eye out the sliding door to the ‘outside’ that I had heard so much of. Finally, the niceties were over and off we headed to the balcony.

Wow, what a blast! The first thing that struck me was the smell of pollen, which was completely foreign to me. The draft between the buildings sent wafts of pollen from nearby trees and garden flowers across the expanse of the balcony and were caught in an eddy at the door. They gushed into my nostrils, trying to invade me, but little did these micro-cells know that I relished their intrusion! Their tiny little stamens tickled my throat and made me giggle inside.

Next I felt, for the first time, uninhibited sunlight on my pale skin. Vitamin D rich rays drummed onto my face and chest, and I just lay in my Mom’s arms absorbing this awe-inspiring natural healer. My skin pulsated with energy as for the first time I felt raw un-artificial photosynthesis take place throughout my little body. I could now understand what all the fuss was about being outside.

Next the sounds struck me! For too long all I would hear is the beeping of monitoring equipment and their shrill warning sirens. Today was different. Birds! I’d heard Mom and Dad talk about these wonderful creatures, and I even have a fluffy facsimile of one in my crib, but never in my wildest dreams had I imagined the sounds they could make! It seems they too like nice weather. They were bouncing around, chirping and calling each other. They flew overhead commenting to each other on all they saw below them – the trees, the flowers, other birds, a scrap of food, a worm! There were too many different birds chirping and chatting to count how many types, but my Dad called out a few of their names – Loerie, Bulbul, Mynah, Starling, the inevitable feral pigeon, sparrows, I forget the rest!

Next I picked up the distinct sound of rustling. All around Morningside Medi-Clinic are majestic trees, and in the morning breeze they gently bowed to Mother Nature, their leaves swishing about. Those leaves that had undergone abscission were scurrying around on the ground, darting in and out of flowerbeds, waltzing with some litter, getting trapped under a car’s wheel or sneaking into someone’s bags. Their sounds fascinating me, as I’d never heard anything more wonderful.

Mom and Dad took me further onto the balcony, and started to uncover me. My eyes, initially traumatised by the bright light, suddenly noticed blue above me. As far as I could squint to the left, then the right, then the top and then down, all I could see was blue, with intermittent wafts of white candyfloss. I guess this is Sky! Awesome to meet you too! And those wafts must be Sky’s friends The Cloud Gang.

As we got closer to the edge of the balcony I could make out city noise. Cars on the road, braking and accelerating, a wonderfully loud bike (I can’t wait to join Dad on his bike), a plane in the distance, people talking aimlessly on the pavement below, and not about using medical terms, people cheering on a game at the Sports Café across the road interspersed with music. What an experience.

Suddenly it dawned on me that my Mom and Dad had devised a cunning plan to break me out! Edging closer to the balcony’s extremities, my folks spotted scaffolding left by some unsuspecting workers. My Dad tossed me over to my Mom and then he grappled over the edge. Seconds latter he was constructing a catapult from the scaffolding which my folks would use to hurl me from the top off the balcony, to the adjacent car park, which also served at the helipad. There, a whirlybird, piloted by my godfather, Marc, with Sharon, my godmother navigating, would whisk me away to freedom. My folks would then stealth-like make their escape through the hospital wards, to meet up with us later. As I started dreaming about what would happen next, I was rudely brought back to earth by the fluttering of pigeon that my Mom and Dad had disturbed. Oh well, nothing like a bit of imagination to keep my optimism alive.

My Mom and Dad took turns to carry me about the balcony. Unfortunately, all too soon my walkabout was over, and I had to go back inside. I bode my farewells to my newly acquired sights and sounds, and promised to be back soon.

Back in my crib, I mulled over in my mind the breathtaking experience I’d just undergone. My caregivers plugged my monitoring equipment back in, and I was re-dripped, but non of that mattered to me, as all I could think of was the great ‘Outside’. Everyone was so excited about my sojourn; my fellow inmates whispering to me to give them titbits of the outside world, and my Mom and Dad, Dr Hay, and my caregivers astonished at resilience at being off the oxygen for so long, and handling my little trip so well.

Before long, things had settled down again, and Mom and Dad headed off home, for a deeply needed afternoon snooze. I too could feel my eyelids getting heavy, so I decided to settle in to snooze as well, and dream of the ‘Outside’.

Saturday evening my Mom and Dad visited for my evening visit again. Their strategy this time was to have Dad feed me on the bottle before I was put on the boob or tube fed. After the usual cares, my Dad sat me up in my crib and started feeding me. I must say, the big ogre can be quite gentle, but also firm. Before long I was drinking, and dribbling a lot, from the bottle. It was exhausting, but my folks and the nurses were willing me on with such enthusiasm that I could not let them down, so I kept going.

Pretty soon I could feel my eyelids getting really heavy again, and I started nodding off. You see, it not that I don’t want to drink from the bottle, but that it exhausts me so much. Bear in mind, for little people like me, having a meal is the equivalent to an adult running a few kilometres. And with my pulmonary pressures, mucous, and the AVM in my head, this is exasperated. As I drifted off to sleep I could hear my Mom and Dad leaving, really excited at my new feat. What an awesome day its been.

This morning, Sunday, my Mom and Dad arrived, as usual, in time for my mid morning feed. Mom and Dad did my cares, and Dad took to feeding me again. As usual, he propped me up on the crib, and his strong hands held onto the back of my head and with the other hand gently coaxed the teat into my mouth. He expertly placed a firm finger under my chin and pushed up gently, and viola, I could drink! Huge excitement around the unit again. In the midst of all of this my Opa and Oma arrived and were ecstatic at seeing my feeding off a bottle. Oma was especially surprised with my Dad’s skill at feeding me! (I secretly believe that Dad was just as surprised!) After lots of coaxing, comforting words, occasional winding I managed to drink a total of 27ml from the bottle. I know to you adults out there this doesn’t seem like much, but for my size, and everything that is afflicting me, it’s a huge conquest.

Opa and Oma stayed a while longer, and watched me being tube feed the remainder of my feed. All agreed that baby steps is what’s needed, and that there should not be too much pressure on me to perform too much too soon. After they left, Mom and Dad spent some more time with me, playing and chatting, and eventually they decided to leave too (finally), as all I wanted to do was have an afternoon snooze.

On the medical front, Dr Hay made contact with a neurosurgeon in Cape Town to explore alternative options for me. After much discussion and consideration, he agreed that the most appropriate way forward for me was the current route – grow bigger, and then, by means of further radio-intervention surgery, have the fistulas in my head coiled. On the growing bigger front, I’ve now tipped the scales at 4kgs! Celebrations all around, as I’m finally over my birth weight.

Mom and Dad dutifully came to visit me this evening again; but it was a relatively short visit, as all round we are all quite exhausted after the exciting weekend. I tried my best to suck off Mom’s boob, but to no avail. After about half an hour of enticing and sweet-talking I broke the news to my Mom that this was going no where this evening. Some really awesome clothes arrived for me from Aunty Gillian in Minnesota, so Mom and Dad decided to turn the evening into a photo-op (see below). In addition my cousin Ryan sent me a football mascot from Iowa State where he studies, called Cy. Again Dad hauled out the camera and created a really cool photo-op. Once he’d photographed me enough, he photographed Cy. Go figure, but the evidence is below!

That’s if for this evening. Again thank you very much for all the wonderful wishes that you keep sending to me, my Mom and Dad. Although the three of us don’t always get the chance to respond to every message, we get truly enthused by your wonderful thoughts and wishes, and for all the positive energy that you keep sending our way.




Figure 1 In my gown, ready to go outside

Figure 2 A quick stop & chat in the staff room

Figure 3 Outside in Dad’s arms

Figure 4 Outside in Mom’s arms

Figure 5 Peek-a-boo

Figure 6 Getting some rays

Figure 7 Space Invader Shatzi disciplining my mobile

Figure 8 Shatzi, in my crib, longing for me to come home and chill here with her

Figure 9 I really love this top from my Aunty Gillian

Figure 10 Here’s me looking up to my Dad, as his little wingman!

Figure 11 Here’s me with my new friend Cy – thanks Ryan, for introducing us

Figure 12 Up close and personal with Iowa State’s Cy

Figure 13 The suspect scaffolding

Figure 14 The helipad, obstructed by a mislaid vehicle

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6 Comments on Out and About

  1. Oliver says:

    Hey Jarrod
    Wow, you look so good in the sunlight. Now things are really looking up. So nice to hear that you are feeding well and that you have surpassed your birth weight.

    Glad you like the US paraphernalia. Ryan will be so pleased to see Cy spreading his wings around the world. By the way, Cy is short for ‘Cyclone’ as that is the Iowa State mascot. Cy is actually a cardinal so you definitely got your fill of birds in one day.

    We’re thinking of you, your parents and Oma and Opa constantly.

    Lots of love
    Oliver, Gillian, Ryan, Kirsten.

  2. Bronwyn says:

    Good Morning, precious little boy!! This is really awesome news, and I am sure it will do you the world of good to get some nice fresh air and sun on your cheeks. Congrats on tipping the scales, that is also awesome, a true sign that things can only get better from here.

    Keep it up little champ!!!! You are a true super star!!

    Love you all
    Bronwyn, Gary, Brannon, Rhianne

  3. Claudi says:

    Hi guys,

    What a great idea to take him outside. I hope that it would be the first of many visits to the balcony. He looks very cute in the photos in his new outfits. Mom and Dad looks great too! Thanks for writing this blog, it is so nice to always be up to date with all the news.

    Hang in there,
    Love Claudi 🙂

  4. Lisle says:

    Finally!!!!! I have a nickname for you!! Don’t think your folks will like it, But I LOVE it. For this Blog insert you are officially “Goose”. “Goose” was the name of Mavericks wingman -the hero of the movie AND SUPERCOOL JUST LIKE YOU!

    Glad to hear the “fat fairy” was good to you, and that you are getting “Phatter” by the day. Also, delighted you got to go outside – way better than an oxygen box!! Loved your photo shoot!!!! In your first pic you look like a wee Boxer, its so cute. I can happily say (and you will not hear me say this to anybody else) but the camera makes you look 500grams heavier 🙂 🙂 🙂 yay!

    Sadly, I will not be able to follow your blog for the next few weeks (which makes me very very miserable), but I am praying that first update I read when I am back (from holiday) is that you are out of Hospital.
    Y O U C A N D O U I T G O O S E!
    Please send our Love to Maverick and Charlie

  5. Gillian says:

    I agree with Lisle – Although I didn’t think of it when I picked up the little one-sie – I just thought it was cute but the nick name “Goose” is so cool. So Goose it is unless Mum and Dad object. Now all you need is some aviator sunglasses 🙂 – Tom Cruise has nothing on you kid !


  6. Tanya says:

    Hey little Jarrod, I think ‘Goose’ suites you. Your mommy and daddy definitely are having fun showing you the blue skies. And the real birdies in the sky are a lot of fun. Maybe one day you will join them for a flip through the clouds. You must have sweet dreams tonight and keep growing stronger (so that you can visit the birdies again!). I love that I have finally got to meet you. I can’t wait to see you running towards your mommy and daddy’s arms when you are older. Keep well little fighter pilot.

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