Pedaling for Preemies

Dear friends,

23 March 2011, Luka's first feed

It is very hard to believe that we are nearing the third anniversary of our lives with Luka, our favorite ex-prem.  For those not familiar with his story, you can poke around this blog to learn how we went from blissfully pregnant to emergency evacuated by air to welcome our first child into the world, 10 weeks early, on 22 March 2011.

This post however, is not to dwell on the past, but rather to talk about an event in the future.  To commemorate Luka's third year in our lives, Chris and I decided to attempt perhaps the only thing we could think of that would be harder than being in labor on an airplane - the 11th ABSA Cape Epic mountain bike stage race.  This 8-day torture fest occurs every year in March and traverses the mountains in and around Cape Town and the surrounding wine country.  The 2014 route will include nearly 750km of rugged off-road riding, where 1,200 riders, including Olympians, world cup winners, professionals - and weekend warriors like us, will test our endurance to the fullest.  For some, the prize money is a strong motivator, for others, like us, the mere honor of participating - and hope for being an "Epic Finisher" is glory enough.

Luka today - an avid biker

But why write about a cycling race on Luka's blog?  Because we decided to enter this race as a way to celebrate our life with Luka.  For months after his birth, the uncertainties of whether or not he would be 'normal', and healthy, plagued our minds, hearts and souls.  As time went on however, and we eased into the realization that we were one of the lucky ones - we started to understand just how fortunate and blessed we were.  In order to celebrate this blessing, and his first three years - we have decided to raise funds for premature babies in the wonderful country that we call home at the moment, Timor-Leste.  It is here, in Dili, that we went into labor in 2011, and here that we returned with our very small infant son later that year.  The Timorese have taken us in, loved us, cared for Luka, and been gracious in sharing their beautiful country with us.  This despite being the poorest nation in Asia, plagued by development challenges including some of the highest mortality rates for mothers and infants, lowest literacy rates, and extremely poor healthcare options.

While we were fortunate enough to access world-class neonatal care for our premature baby in Darwin, Australia - many, many people around the world are not that fortunate. According to an NGO dedicated to preterm births in Africa, an estimated 15 million babies are born too soon every year.  According to a recent report, premature birth kills 1 baby every 30 seconds!!  That is more than die of malaria, AIDS or diarrhea.  The worst part is that 75% of these deaths can be prevented without intensive care - through simple and inexpensive interventions like steroid injections (which I received prior to Luka's birth), proper hygiene, and warmth (the most valuable renewable energy source on the planet is a parent's skin-to-skin contact with a premature infant).  Yet scores of babies will die this year of preventable preterm births.

Of course, we do not anticipate that the two of us on our bicycles can make a difference in the world's premature birth statistics - however, we do believe we can make a small contribution to the situation for preemies born in Timor-Leste.  As such, we will be coordinating with healthcare professionals in Dili to seek opportunities to contribute to a low-tech intervention such as a 'Kangaroo Mothercare' room, or other similar intervention to assist parents of preemies to cope with, and adequately support their little miracles.

We are in the consultation process to find the most appropriate source to support, but with this letter, I am requesting those able to, please consider supporting our cause when the time comes.  You may choose to give a flat-fee, or an amount per kilometer (1c, 10c, $1?).  There will be no overhead, fee, or administration cost - just two very grateful parents, and one very boisterous ex-prem giving back to the world.  Every cent you choose to donate will go directly to benefiting these little angels.

Once we have our specific project finalized, I will share the information and procedure to donate with you. There is however absolutely NO expectation, NO obligation - just gratification for knowing that you may be able to touch the life of a very special person.

More soon, until then - yours sincerely

Susan, Chris and Luka

Due dates and other musings

So turns out there is a small, albeit vocal, following of this blog here in Dili (and yes, of course the family abroad are yelling out!) who implored me to keep writing.  While I realize the initial draw for most readers who were not somehow related to us, was perhaps something of the intrigue of the whole ordeal, and that - in all fairness, that has since pretty much worn off.  Which, after fourteen months, I have come to appreciate as a good thing.

Luka 22 March 2012,
Visalia CA

By way of a preface, I should point out that today, May 27th, is and was always supposed to be Luka's due date.  Of course, 'they' tell you that due dates are all a pile of smelly stuff, which in my enlightened state of pregnancy led me to respond to the big question with 'oh somewhere toward the end of May' - but secretly, every first-time pregnant woman hangs on to the notion of a due date like she last did for good weather on her wedding day even though 'they' tell you rain means good luck.

So, here we are, a whole two months and one week after we celebrated Luka's 1st birthday in the US with the extended US and South African families, and we have so much to be grateful for.  Chris and I recently reminisced about how much Luka has changed (matured if you will) in the past two months from this young man playing with his legos in grandma's house, to the toothy toddler rough-housing at today's bub club.

Luka, Dili 27 May, 2012

Of course, people point out what an amazing little creature he has become, and what a miracle the whole story is.  Which just reminded me once again over the past few days how incredibly, and indescribably fortunate we have been.  In thinking back to the dreadful day where we boarded a 70-minute flight to our future family, and measuring the difference between March 22 and May 27th, I am just blown away when I think of the whole thing one year ago.  I was not quite as able to take in the whole 'due date' anniversary last year as this day last year also coincides with the day that Luka was released from his second stint in the NICU, for his emergency surgery in Cape Town.

Consider that Timor-Leste, one of the poorest countries in Asia and where we currently live, is not the best place to be a child.  According to Save the Children, at least 54% of Timorese children under five have stunted growth due to malnutrition. In addition, it seems to me that most families I come across know first-hand the pain of losing a child(ren) at some point.  For most Timorese women, even the option of hospitalization is not always there, let alone one with the kind of care one would need for a premature birth.  My recent discussions and guidance to a colleague who's friend had a premature baby in the national hospital a few weeks ago and was being kept in a separate room in the hospital, away from the infant, with no instruction to touch, care for, or hold the small creature, alerted me to the breadth of support one needs in a situation such as the one we had.

Of course, I had a credit card and could access the internet to book a one-way ticket out of here.  I also had a US passport and health insurance to evacuate and get the care that my child seemingly deserved to give him the jump-start he needed.  As a result, I can't help but feel somewhat guilty when I bounce a healthy 11kg former preemie who more closely resemble 3-year old Timorese kids.  When I say 'guilty', I don't mean it in a melodramatic sort of way - but just that I can't imagine what I would have done without the caring instructions, guidance, support and encouragement I received from my midwives, pediatricians, nurses, lactation consultants and every other single person that guided us through that time in our life.

Today, we love watching Luka as he finally figures out this 'walking' thing, click his tongue, point to the light and hug our cat Gus.  I live for, and relish in his recent rediscovering of hugging and lap-sitting, especially at night, after his massage and bottle, when he decides he has had enough milk, hands me the bottle, sits up on my lap - throws his arms around my neck, and nuzzles his face, snuggling in secret  for a few seconds before pointing to his bed.

On his due date, all these many weeks after his actual birth date, I say a small prayer for all those who go into premature labor without the support network, care, encouragement and resources that I had at my disposal.  I also thank, once again, the doctors, midwives, nurses and administrators at the Royal Darwin Hospital in Australia, as well as my birth and antenatal coaches, and the staff and doctors at Vincent Palotti Hospital in Cape Town.  Luka is a product of his strong-willed parents, but he is also a testament to the difference world-class medical care make in our lives.

Grrrrrrrandpa!

On a recent visit to the Pub at the Brass Bell restaurant in Kalk Bay, Luka and his grandpa had all sorts of exciting things to discuss.

"...pst, Grandpa..."

Have you seen my mommy - I mean, what does a
boy have to do to get a drink over here?

"Seriously?  You mean she's not here right now?"

"Ah! that's funny, I know she never goes far from me!"

...20 minutes later...

Good feed - burp cloth = grandpa burping me over the
shucked oyster shells :)

First visit to an old family tradition

You know it is a good day in Cape Town when it starts with a visit to your very first winery, in this case local establishment  Cape Point Vineyards, followed by a drive across the spectacular national monument, Chapmans Peak Drive, to end up a an old family tradition for calamari - Chapmans Peak Hotel.

Having my nappy changed on
the tailgate of spoedvark ('speed pig')
daddy's 20-year old Toyota

In the morning, Luka oversaw a tasting for grandma and grandpa of the lovely lightly oaked Chardonnays, and Sauvignon Blancs with hints of local fynbos in the terroir accompanied by a fabulous cheese plate.  Of course Master Luka had his own requirements before we could depart, resulting in what we like to refer to as le tailegate change.

A late lunch was enjoyed at an institution that the Marx family has frequented for at least twenty years.  There might be better calamari somewhere in the world, but in all our travels, we have not found it yet - and definitely not with the combined ambiance and view to boot.   It seems only fitting that Luka should find himself camped out on the deck while we feast on their famous grilled calamari, Portuguese steak topped off with a Groote Post Old Man's Blend.

On the deck of Chapman's Peak Hotel

Where we live...

...sunsets look something like this...

...and sunrise after an all-night winter storm something like this...

how blessed we are (and that is not to mention the wonderful neighbors and friends we have in our hometown in Scarborough)

Along the road from Birthing Date to Due Date...

The family photographed near our house
May 2011

My 'Google Calendar' proudly announces 'DUE DATE' for today, May 27, 2011, just as I entered it all those months ago.  While we always anticipated this day with great excitement and joy to finally have our (back then still unknown) baby join our little family, little did we know that it would be a second homecoming.

That's right, in the spirit of auspicious dates*, Luka decided to give us a homecoming on his actual due date; only this time it was returning home from hospital where he had to undergo emergency surgery on Tuesday. After what seemed an eternal six weeks in a nursery in Australia, Chris and I both agree that the second time around in the neo-natal intensive care unit (NICU) was actually harder than those initial six weeks we spent in Darwin immediately following the birth.  Something about the optics of 'moving backwards', when we had just finally gotten comfortable with having Luka at home, away from the nursery in the first place.

Mom and Luka

The emotions of having another incubator assigned to us, hearing the friendly nurses introduce themselves "Hi, I am <such and such>, and I'll be taking care of Luka this evening...", the constant hand-washing, breast milk expressing, vitals, everything, was almost too much.  Yet, this time we were also thankful for the progress we have clearly made.  With one of the bigger babies in the nursery now, Chris and I were shocked at how tiny a four-day old prem in the corner was, only to realize he is 40g heavier than Luka was at birth.  Is it really possible that Luka was that tiny, fragile, skinny, jerky and pink?  How soon we forget, and how amazing the human race is at adapting when we have to. Looking at the tiny prem in the corner I was once again filled with empathy for the parents who lovingly, though cautiously, gaze and eventually cuddle their overwhelming little bundle.  Could I deal with that if I had to?  Then I snap back to reality and remember, but wait a minute, I have dealt with that...and I know that they too will be okay.  

There were many similarities between the NICU at the private Life Vincent Pallotti hospital just north of Cape Town, and the Special Care Nursery (SCN) at the Royal Darwin Hospital (RDH) in northern Australia.  Chief among them is the extraordinary people who work there.  I can't help but wonder about the true calling it takes to become a NICU nurse.  As mentioned in an earlier post, take anyone's most precious, most fragile possession, and choose to be the one to help them deal with it... just amazing.

Dad and Luka

There were, of course, also many differences between the public (state) hospital in a socio-economically challenged town in the Australian outback and an expensive, top-of-the-line private hospital in an affluent part of the metropolitan city of Cape Town.  From the emergency room entry we passed through in Darwin just over two months ago, flanked by the local population camping out on the sidewalks, inconspicuously taking swigs from bottles wrapped in brown paper, and less inconspicuously smoking under the 'no smoking' signs, to the 'camp like' lunches and dinners consisting of plastic mugs with pre-cooked instant oatmeal, white wonderbread and orange juice in foil-topped plastic cups ala coach class.  Compared to Cape Town with the comforter-clad beds, wicker furniture, white crockery and juice served in a glass with ice, along with the fact that you could actually turn off the lights in the room at night, and close the door (that it even had a door), connected by art-filled walls and overstuffed sofas for visitors and waiting patients.  Irrespective of the type of hospital environment though, perhaps of more importance is the fact that of the 22 weeks in 2011, we have now completed our seventh in hospital - or almost 1/3 of the year.  Not exactly the ratio we had in mind when planning a non-hospital delivery with a midwife only, but hey - what are plans for if not for breaking?

And so, our second stint in the NICU came to a ceremonious end when the most anticipated bowel movement of my life (and Luka's) finally occurred at 1800 last night, just in time for our pediatric surgeon, Professor Rob Brown, to witness during his rounds.  He agreed that with that performance, Luka and I could room in together (myself as a non-paying, non-eating, life-support only) boarder, and if all went well, we would be going home this morning.

Which brings me to perhaps one of the most telling lessons of the whole experience...the difference in a term and pre-term delivery.  Luka and I were assigned a bed opposite the NICU, sharing a large, comfortable room with en-suite facilities with a mom and baby girl delivered by C-section the day before.  The irony of spending my due-date night in a maternity ward 'rooming in' with Luka to 'establish' breastfeeding, after nearly ten weeks together, cannot be overstated.  For a few hours I had a window into what a "normal" delivery (in the temporal, not delivery method sense) is like.  Lying there in the dark of night, listening to the sweet, delicate whimpers of a newborn crying to communicate with her mother, echoed by the quiet cooing in a combination of Zulu and Afrikaans as a new mother cuddles, caresses and learns to independently care for her baby, brought back so many memories of the hours before we could hold Luka, and the weeks before I could independently care for him.  I recall how quiet Luka was for the first month of his life.  After his initial screams out of the womb, as with the majority of prems, we hardly ever heard him make a peep.  I empathize with this mother as she struggles to teach her infant to latch and feed, only to recall my two-hourly hand-expressing into tiny syringes, to be walked down the dull, institutional, artless walls of RDH to the Special Care Nursery, followed by the tens of liters of milk expressed by means of electric pump, while Luka matured and gained strength for nearly six weeks to get where this mother automatically found herself on Day 1 with her infant. 

Today, nearly ten weeks after we were blessed with a 1.777kg Luka, I am bouncing a 3.3kg ex-prem on my lap and am truly humbled and indescribably grateful to the opportunities awarded us by means of having had access to world-class medical care in both Australia and South Africa to enable Luka to progress as well as he has.  To all the nurses, the doctors, and other service-providers who have assisted us in some way or another, we cannot thank you enough.  For all the countless mothers and fathers of preemies, you too will find the strength and wisdom to get through, and to those unfortunate enough to birth premature babies every single day in places not equipped to deal with them, I pray that you too will some day experience the joy of holding a healthy, happy, hungry baby in your arms.

As for our own journey from birth date to due date, despite the trials and tribulations of the past ten weeks, and no doubt of the future, I can honestly say...I don't think I would have it any other way...there is something humbling, empowering, and oh so full of grace in caring for a tiny premature baby that is perhaps part and parcel to the calling of those who choose to dedicate their lives to them.  Truly God's most special, and dare I say, perfect creation.

Happy original Birthing Day Luka - you are the sunshine in our days and the stars in our sleepless nights.

Our little angel

*   You may recall that out of 365 days, our boy popped out ten weeks early on his father's birthday


** All photographs courtesy of Brenda Wardall, Hearts in a Shutter

First of many Foodie excursions

We returned to the US Consul General south of Cape Town yesterday to register Luka's 'birth abroad' and apply for his passport.  As these things go of course the registration of birth abroad has to be sent back to Melbourne, Australia - which is the Consulate that covers Darwin.  Once they approve it, they return it to Cape Town from where they can process his passport, all of this of course hopefully in time for me to attend my July graduation at Oxford (so if you know the US Consul General in Melbourne, now would be an excellent time to let me know ;)

After shuttling back and forth between the Consul General and a local pharmacy to have proper US-sized photos taken, and a few back and forths with DHL to determine the best address to send the eventual passport to, we decided to reward ourselves with lunch at one of our new favorite spots, Bistro Sixteen82 the modernist bistro-style restaurant at Steenberg Vineyards.  Enjoying delicacies such as my pink tartare (Norwegian salmon tartare served with chilis and lime), and a Garden salad followed by a delectable dessert, we were inspired by Luka's good behavior, albeit overwhelmed by the attention he attracts.

I admit that I do prefer to stay close to home with him still, but from time to time, when we're already out I figure venturing outside the house is probably good for me, and good training for us.