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

Oh to be a mother.

Our little man, photographed in the
Special Care Nursery by local photographer
Danielle Stahl, for all the mothers
as a mother's day surprise. 

Waking up this morning after a sleepless night with a newborn baby at our home in Cape Town, it took me a while to comprehend the reality that I was in fact now, a mother.  I have to be honest and say it is not something that I always assumed I would be.  Instead, my foray into the m-hood was the culmination of a most wonderful relationship and long marriage to a wonderful husband, one whom I finally realized I would love to have a child with.

Coming to terms with having a child, and your first at that, is an incredible journey, experience, and the emotions are overwhelming to say the least.  Coming to terms with having spent six weeks nursing a premature baby, only to realize that once you get home, he is still a 'newborn' developmentally, and that you really do not have a six-week head start on things, is also interesting.  But coming to terms with finally having that tiny little baby that once almost fit in your husbands' hand in your home half-way around the globe, is truly a blessing today.

On this day to honor mothers in the world, I would like to give my special wishes to every mother, grandmother, soon-to-be mother, want-to-be mother, mother who has lost a child, adoptive mother, stepmother, honorary mother, godmother, stand-in mother, and in particular, every mother who has to spend the day in a hospital with her child, today.

Mothers, and those who support mothers, assist mothers, encourage mothers and love mothers - I salute you!

The family right before we left the Special Care Nursery on
29 April, 2011.  (Photo: Danielle Stahl)

And the greatest of them all...Hope

There is a tunnel

at the end of a tunnel is a light

this much I know

this much I must believe

my vehicle is not a car

my vehicle is more powerful

my vehicle cannot run out of fuel

my vehicle is hope

At 16:30 today, someone turned the light on at the end of our tunnel.  While we hesitate to say that we can see it yet - we cautiously admit that we have been alerted that the light has at least been switched on.

Translation: there is a slight chance we may be moving to 'rooming-in' (Susan and Luka spending a few nights together in a hospital room for 24-hour breastfeeding and other monitoring) to ensure Luka continues to breastfeed and gain weight satisfactorily...and dare I say that someone actually used the coveted D-word with us today, aptly on South Africa's Freedom Day. 

More soon....  

Institutionalization

in·sti·tu·tion·al·izedin·sti·tu·tion·al·iz·ing

transitive verb

1

: to make into an institution : give character of an institutionto <institutionalized housing>; especially : to incorporate into a structured and often highly formalized system<institutionalized values>

Merriam-Webster

The Special Care Nursery is a melting pot of people and their personalities. Nurses, doctors, cleaners and patients come from Korea, China, Philippines, Australia, Indonesia, Korea, Germany, Timor-Leste, and of course the US and South Africa.  We are all different, and unique.  Yet, it is still an institution, and by virtue of spending extensive periods of time confined here, we too become institutionalized to a great extent. 

For those of us known as 'the parents,' who spend countless hours glued to semi-comfortable chairs in an overly-lit room with bad coffee and never-ending noise, we are focused on one thing, and one thing only - getting out.  I imagine that if you did a psych study of parents of preemies in a Special Care Nursery some of the reactions to the environment would not be that dissimilar to inmates in a prison.  Confined to a small, brightly-lit environment with 24-hour noise, no peace or privacy, and little or no access to what goes on outside, one inadvertently start to elicit traits of anti-social, slightly paranoid behavior.  We lose track of the days of the week, what goes on in the news, and other things that were so important a few weeks ago suddenly seem much more irrelevant. 

I have numerous friends who have been incarcerated for many, many years, including extensive time in solitary confinement and am in no way suggesting that spending six weeks in a hospital is the same - rather, what fascinates me is that psychology of confinement that appears after a while without freedom.  Like the famous Stanford Prison Experiment I too definitely notice certain characteristics among the parents, and in particular myself.  I find that instead of coming in later, and being more comfortable with Luka's progress to take more time to myself, I am spending considerably more time at the hospital than in the beginning, it is like this is the only place I feel at home now.  Our friends at Wikipedia explains that institutional syndrome as the deprivation of independence or responsibility.  This is certainly to a great extent a risk in a high care nursery, where one can become so reliant on the 'experts' around who are seemingly more comfortable and skilled at handling the babies, and in diagnosing any problems - as such, there is a nascent fear amongst parents about not having someone to 'tell me when I should feed him' when we eventually go home and take our precious little ones with us. 

Our location in the General Nursery

There is also the reality of growing comfortable with the 'space' you are allocated, making any change, move or adjustment almost traumatic.  Take for instance when your preemie is in an isolette, it is like being in 'solitary confinement' and all you want is 'out'.  Then, suddenly when they remove the isolette, you have a momentary panic when that 'known' confinement is removed, and you ask yourself: 'are we ready'.  Once out, you feel lost in the much larger space of the 'General Nursery' area where your baby seems vulnerable and fragile in the open cot.  Similarly, when you are confined to monitors, all you want is to be able to rid your baby and yourself of the endless wires, switches and beeps - then, when they are removed, you feel bare and uncertain.  My friends who were incarcerated talks about living in only one room in their homes, and having to divide a room into a smaller unit to feel comfortable and safe upon release.  

'High-five' after ditching the last monitor - careful optimism

And yet, it remains this belief that we will one day go home, without monitors and special beds, that bind parents together.  Every parent in the nursery believes that his/her child is somehow special, unique and 'ahead' of the curve.  Perhaps this is true for any parent, mine certainly think I am far smarter, beautiful and amazing than I could ever even try to live up to, but in the nursery we see it every day.  Fortunately the staff are carefully trained to be sensitive not only to our emotional attachment to space, monitors and other familiarities, but also to that sensibility of progress, that belief in betterment...that crucial notion of Hope. 

Day 33: aka Easter Sunday to the outside world

Easter Brunch in Darwin - 'Serjak-style' with a fabulous
Baked Breakfast Cheesecake in the park between feeds 

As Christians around the world celebrate Easter Sunday today, Chris and I are spending Day 33 in the Special Care Nursery on the 6th floor of the Royal Darwin Hospital, hardly aware of what month it is, let alone day of the week.  For some reason I got really antsy for the first time today, feeling as if I am ready and eager to get out of here.  Perhaps it was the twins' all-too familiar wailing that constantly sound through the nursery as they desperately call for someone to feed them, or the feeling of the all-too familiar recliner chair below my all-too tired backside, or the ever-invasive glow of fluorescent lighting in a place constantly plagued by people coming and going...

Luka's Easter Brunch - 'Gavage-style'

I have just about washed the skin off my hands for fear of spreading an infection I don't have, have worn the same 3 outfits for going on 5 weeks, and get excited at the prospect of finding parking close to the door, only to forget where we parked when leaving 10 hours later.  I watch the machine record a 'Brady' and know that I have been here too long when I argue to the head nurse that it was not a true Brady, that it was in fact caused by Luka's impending bowel movement.  I have sat here nursing, pumping, and generally flashed about half of Darwin, and don't even care anymore - seems my chest no longer belongs to myself.  On top of that,  I seemed to have acquired what is known as 'nipple trauma' to my right side due to Luka's early interest in breastfeeding.  Turns out the tiny size of his under-sized mouth and therefore inability to 'latch well' is likely to have inadvertently caused this - but as is my nature, we powered through.

Sleep tight little man, grow big and strong!

And then, I look down at little Luka cradling my finger in his tiny hand as he sleeps off his latest feed ... so peaceful and precious, and I realize - I would sit here for 33 more days, or 333 if that is what it takes...

Happy Easter everyone!