Remembering...

...where we were almost one year ago on Darwin, and how far we have come....

First portrait of our brave little soldier, approx 1 hr after
birth - 22 March, 2011

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

Luka's surgery: inguinal herniotomy

On Tuesday at 0400, Luka woke screaming inconsolably for the first time since his birth.  We tried everything to calm in, including the 5 S's of Happiest Baby on the Block fame, which seemed to help temporarily, allowing us a few more precious hours of sleep.  However, he awoke once again and was screaming terribly.  We figured this was indeed the next challenge in raising Luka, the 'colic' we have read are so prone in preemies.

To our horror, there was indeed a clear reason for his screaming - a bulging lump in his groin.  Having studied the essential guide for any parent of a preemie, we were at least partially prepared for the occasion insofar as we were pretty sure we knew what it was, and also, perhaps most importantly, that it would require what was indeed the most common surgery performed on preemies*.  So after calling the pediatrician and all that followed as explained here, we found ourselves once again in a NICU setting.

The little patient immediately after the operation. 

Of course, when your infant is in terrible pain, and you are rushing off to the hospital, one does not necessarily always stop to think and pack - and so, for the second time in ten weeks, we found ourselves under-packed for one of Luka's adventures.  Having reached the hospital and being passed on from our pediatrician, Dr. Carl Wicht, to the pediatric surgeon, Prof. Rob Brown, we knew we would be stuck over an hours' drive from home, at least overnight, but possibly longer - not a distance acceptable to us.  Unfortunately, Luka's surgery was an emergency, so there was little time to plan or adapt until after he came out of theater.  Prof. Brown explained that while a hernia is not necessarily an emergency, it is when the bowel is trapped in the connecting tube, causing a 'strangulated' hernia that requires immediate transport to the nearest emergency room.  After examining Luka, he informed us that his was indeed wedged in tight and would require immediate surgery to avoid permanent damage (read: removal of part of the bowel), then carefully sketched out the procedure for us on a pad and paper.  He immediately instructed his receptionist to book space in the OR, and started rescheduling his entire day to fit Luka's surgery in ASAP.

While waiting for an available operating room, we were booked into the nursery, Luka bathed and changed into a hospital t-shirt, and I administered a dose of caffeine done to assist the lungs in post-operating recovery (of course Chris and I were at this point still caffeine-less and almost demanded our own dose).  We were able to take Luka out to a waiting area with couches where we proceeded to wait for a few hours.  Eventually, the anesthesiologist Dr. Hanli van Dyk came out to the waiting area, introduced herself, pulled up a chair and proceeded to walk us through the entire process of putting our baby to sleep.   She explained that she would be using a general anesthetic, combined with a once-off regional anesthetic, which allows her to reduce the amount of general needed significantly (a good thing for someone born as prematurely as Luka).

Poor guy all swollen from the IV fluids...but so alert and happy
to see his daddy!

Once we got the green light that surgery would proceed, Luka was returned to the nursery where he had to board his incubator. The head nurse and a hospital porter then wheeled him to the operating room on the top floor, with Chris and I in tow.  At the operating ward, I was dressed in scrubs, shoe covers and a cap and followed the porter to a 'holding' area before surgery.  Here Luka was somewhat antsy, so I took him out of his incubator and soothed him. Dr. van Dyk came out and along with the porter pushed the incubator into a large operating room where Prof. Brown, two nurses and a young (presumably student) doctor was waiting.  I was able to hold Luka as Dr. van Dyk administered the gas, before laying him down on the bed, planting a big kiss on his forehead, and then being escorted all the way back out by Prof. Brown all the while explaining what he would be doing during the procedure.  At the door Chris and I went to get our much-needed coffee and a newspaper to try and occupy our minds for the hour we anticipated it would take.

Luka was not kind to the drips in his
arms I believe he went through five...

At roughly an hour and ten minutes Prof. Brown came out to explain that the bowel was so wedged in the sac that it was near impossible to pull it back through, he did manage, but it caused a minor tear in the bowel.  As such, it was not the 'uncomplicated' surgery we had hoped for (during which there was even talk of fixing a potential hernia on the right, should one exist), instead, now it would require an extended stay in hospital and nil per mouth (i.e, now milkies for our boy).  We followed the head nurse and porter back to the nursery with a now very distressed (read hungry) and groggy baby.

Kangaroo care - the only way to go!

The three days in hospital was not great, as we were once again thrown back into the lull of nursery-life, but at least we knew our departure there was rather imminent, unlike the newly arrived prems and their distressed parents.  Seeing Luka in pain, and discomfort the first two days was truly a challenge, but we knew he was being cared for well.  Probably the hardest thing for me was not being able to feed him for three days, since, despite the IV fluids, he was clearly hungry and smacking his lips for a feed - to try and mitigate this we had to revert to a dummy (pacifier), which our boy did not think was funny.

While he lay recovering, slightly sedated, and absolutely starving!  I managed to find a guesthouse nearby thanks to a recommendation from one of the nurses, while Chris ran to Woolies (JC Pennys) to get a packet of underwear and a clean t-shirt for each of us.

Luka being examined on Chris' chest by his pediatrician
Dr. Carl Wicht

For the next three days, we kangaroo cared Luka again for close to ten hours a day in the NICU while we waited for the pediatrician and surgeon to do the rounds to see whether we would be spending another night in hospital - from where we would quickly phone the guest house back to reserve our room for that night again.  Each day Luka was more wakeful, and clearly in less distress than the day before - but we were still waiting patiently for the all-changing bowel movement to manifest!  Imagine a a gaggle of nurses and two doting parents all rooting for the same thing - a big poo!  Well, it eventually happened on the second night, the 26th - which set the ball in motion for us to leave.

And so it were that we were once again released from hospital (after settling the bill of course!) on Luka's due date.  For some thoughts and ponderings on that, please see the next post, From Birth Date to Due Date.

For now, it is nearing sunset here in Scarborough on a gorgeous winters day on the southern point of Cape Town.  Luka is peacefully resting on my lap after his umpteenth feed for the day, and following two fabulous poos - we are closely monitoring him for pain and discomfort and administer Panadol-based seppositories as needed.

The backside of Table Mountain as we drive away
from the hospital this morning.

We are due back for a follow-up with the pediatrician, the surgeon, and at the same time his final ophthalmologic examination next week.  During the visit with the surgeon he may do an ultrasound on the right side of the groin to determine whether there is any need to mitigate that side in an elective surgery as well before it too becomes strangulated, risking another emergency surgery in the future.

Note: I can safely say infant surgery is one of the tougher things of the whole experience so far, but thanks to the amazing staff, we felt confident and calm most of the time.

* 3-5% of healthy, full-term babies can suffer from hernias, this number increases up to 30% for preemies.  Source

What's in a month...

In sifting through the multiple camera memory cards I have filled to the brim with our photo-chronicle of Luka's arrival and eight weeks with us thus far, I stumbled across a few ones taken by my mom with her video camera in the Special Care Nursery a month ago...I was amazed at how far we have come.  To see Luka back in the nursery with the tubes, much thinner than his current appearance was really telling of what he has been through.

Luka having an infant massage on 18 April

Luka's 'cares' on 14 April

Hanging out with dad on the 18th of April

Luka's First Graduation!

 

Luka's last 'cares' in the Special Care Nursery in his
big boy bed

To mix things up a bit, Chris took the morning shift, leaving Susan to run a few errands.  These included picking up a bag of stuff from Dili that a willing 'mule' carried on the flight this morning, and also getting a printer and scanner to facilitate the bureaucratic part of birthing a dual-citizen in a third country (more on that later).  Imagine the shock when Susan returned to the nursery only to find the isolette (like an incubator) gone!  Instead of the familiar box with holes for the hands and arms, there was a regular nursing cot (looks like a clear plastic baby bath).  After containing my excitement, the nurse informed us that not only did Luka shed his isolette, but that he would in fact graduate from the 'Special Car Nursery' (one step down from the NICU) to the 'General Nursery' today.

View of the General Nursery

Of course this meant that he is now able to regulate his own body temperature (a big requirement around here), and that he is not only stable enough, but also progressing well on other fronts.  Funny thing is that news such as this is met with mixed emotions from parents.  While we are clearly proud of him for excelling and exceeding all expectations for a 30-weeker, now one week old - it is also accompanied by some reservations such as 'is he ready?', 'will he receive the same level of care?' and other questions.  Our Preemie book talks about this, and ensures all parents of preemies, that yes, they are ready to move on, and yes, they will receive the care that they need, which is understandably slightly less than another infant who still battles to hold feeds down and cannot yet maintain his body temperature.

Our new digs.

As if this was not good enough news for one day, we also received his SBR (jaundice test) numbers, and they have gone down by themselves since the last test, without the use of lights.  This indicates that his liver is functioning well enough to be flushing the last of this out of his system through all of those healthy bowel movements we get to clean between feeds.

Luka actively sucking his thumb
during diaper change this morning

We are incredibly grateful for this progress, but acutely aware that it is still a long 4-6 weeks that await us with Luka bound to the hospital until he is closer to his due date (end of May).