Thursday, December 25, 2008

Merry Christmas!

At the end of a hard year - much harder than we'd anticipated, in many ways - we weren't really feeling the Christmas spirit. Going into the summer solstice didn't really help with that either. But we finally got our act together, unpacked the Christmas tree, opened the box of lights and ornaments, put on some holiday music, and settled in to read How the Grinch stole Christmas.

Christmas tree 2008 How the Grinch stole Christmas

On Christmas eve, we put a collection of gifts from family and friends under the tree, turned on the lights, and it looked quite cheery after all.
Christmas morning

Not a white Christmas
Christmas day was quite laid back and relaxed, a chance for us to catch our breaths a little. One thing it was not: a white Christmas. It was bright and warm and very sunny, a typical Aussie Christmas.

We hope all our readers had a pleasant and very merry Christmas: best wishes for the holidays and the New Year ahead.

Ollie in Santa hat

Monday, December 01, 2008

Looking back, part 2: Grandparents visit

Grandparents(October – November, 2007)

We want to take a moment once again to look back and acknowledge some special visitors we've had since Oliver's birth.

Less than a week after we brought Oliver home from the hospital, Oliver's grandparents, his Thamma and his Dadu, arrived from India. It was such a difficult time (they could tell you some stories!) that those early weeks at home have become a bit of a blur for us. Having Shami's parents here was a tremendous help, and in fact we're not sure we would have survived without them.

Feeding time A nap with Thamma
Notice how the lovely sari Ollie's Thamma is wearing on the left miraculously turns into a special heirloom blanket, complete with an embroidered "OA" for Oliver Akash! Thank you Thamma!

Meghan and Maini
Although we were mostly housebound and too exhausted to do much of anything beyond what was absolutely necessary, we did manage to get out a few times to show them some of Sydney's sights, including a couple of walks along the coast and a stop at Bondi beach. Ollie even dipped his toes into the Tasman sea for the first time, but he was not impressed.

At Bondi beach

It was not just their help with meals, cleaning and caring for Oliver we are grateful for, but their boundless love and emotional support. We are so glad they were able to come and meet their first grandchild early on, even if the circumstances were far from the happy ones we'd envisioned.

Three generations Meghan and Maini

All dressed up: three generations of Chatterjee men. And Oliver with his mum and Thamma too.

Sunday, November 23, 2008

Ku-ring-gai Chase National Park

We took advantage of good weather and a little extra energy over the weekend to drive to Ku-ring-gai Chase National Park. This park dates back to 1894, the second oldest in Australia, and the Sydney metropolitan area has expanded right up to its edge - it was only an hour's drive for us. We drove through the park all the way to West Head, where we enjoyed gorgeous sweeping views of the Hawkesbury river meeting the ocean.

Meghan, Oliver, and Barrenjoey Head Shami, Oliver, and Lion Island

You can see Barrenjoey Head, with its lighthouse, behind Meghan, and Lion Island behind Shami. The entire area is a nature preserve and has recently been designated a National Heritage area.

Oliver and Shami Goanna at Ku-ring-gai Chase

Alas, we didn't have much time to spend here before we had to drive back, but we did run into a goanna, an Australian monitor lizard. It was big! And don't miss the forked tongue in the (very short) video clip below.

Thursday, November 06, 2008


After Meghan donated money and sent in her absentee ballot, there wasn't much else for us to do about the US elections besides obsessively following the twists and turns of the campaign. On November 5th (late night 4th in the US), we all watched with an overwhelming sense of relief as the results came in. Here's Oliver congratulating President-Elect Obama as he gives his victory speech!

Congratulations to the President-Elect!

Throughout the election campaign, the news coverage was dominated by trivia like flag pins, tire gauges, and wardrobes, but did you know that the candidates had actual positions on policy issues such as disability? As this post on the blog Crooked Timber says,
Disability policy never swings an election. And why should it? Unless you yourself have a disability, or unless you know someone with a disability, or unless you’re concerned about things like employment or health care, or unless you might get sick or injured someday, or unless you’re planning on aging, disability policy is irrelevant to you.

Well, it turns out that Senator Obama had some really comprehensive and smart disability policies. On the other hand, Senator McCain merely wanted to cut costs, so his policy could be summarized, more or less, as "Don't become disabled." (Again, if you're interested, this post is worth reading.) I guess we'll see how President Obama's plans survive the ongoing economic crisis.

Friday, October 31, 2008

Happy Halloween!

Ahoy there, matey! Oliver wears a patch on his right eye for a couple of hours every day to strengthen his weaker left eye. Inspired by what we call his "pirate time", Meghan dressed Ollie up as a pirate for Halloween. Avast! Shiver me timbers! Happy Halloween to all of our readers.

Avast! Shiver me timbers! Ahoy, matey!

Monday, October 20, 2008

Homecoming Day

Today has been another day filled with memories. One year ago today, Shami and I walked out of the hospital with Oliver. We buckled him into his car capsule, and we brought our baby boy home.

Last day at the NICU Getting in the car
Driving home Finally at home

We were scared, we were hopeful, we were sad, we were relieved. For the first time, there were no doctors or nurses telling us what to do, and we had our own private space. For the very first time since his birth, almost six weeks earlier, Shami, Oliver and I finally felt like a family.

Finally at home Out for a stroll

It has been a long year, filled with moments of joy, sadness, and painful realities. While many of our optimistic hopes for Oliver haven't materialized, he has nevertheless come a long way. Some of his accomplishments may seem small and insignificant, but to us they are things to celebrate. Oliver has recently begun to move his arms with intention, and he is becoming more tolerant of his mouth being touched. He now knows many of his toys by name, and will turn his head to them when we say their names. Most importantly, Oliver is a much happier baby than before. Although he still suffers and cries too much, the months of unrelenting thrashing and crying have eased up. We appreciate each moment when Oliver is happy and engaged with his surroundings, and we are grateful for every smile he gives us.

Homecoming anniversary
Oliver sitting on the deck with a few gifts and some of his favorite friends, waiting for his dad to come back from work.

Homecoming anniversary Homecoming anniversary gifts
What a smile! Oliver and Dad opening some Homecoming Day gifts.

Friday, October 10, 2008

Looking back: early days, early visitors

(September 2007) Oliver was in the hospital for 40 days, during which time Shami and I spent almost all our time by his side. He was 6 days old when they allowed me to have my first "cuddle" with him. With all the padding, pillows and blankets they insisted on, not to mention all the wires and tubes we had to accommodate, it was hardly a real cuddle. Still, he was in my arms for the very first time, and that was special.

First cuddle First cuddle

At first we were rarely allowed to hold him, and the nurses discouraged us from stroking or stimulating him. But we touched him as much as possible. A hand on his head, chest, arm or foot, just to let him feel our presence next to him. Shami liked to give Oliver a finger to grasp, and would sit for hours that way. If you look closely at the two photos below, you can see that Ollie is nestled in ice packs. The doctors chilled him for the first 72 hours of his life to help reduce secondary brain damage.

Oliver and Shami at the NICU Holding on

With our families half a world away, Shami and I were on our own until my sister called my cousin Sue and alerted her to the crisis. Living locally in Sydney, she was our first visitor, and helped us tremendously through the initial days. She brought us edible and iron-rich food (I was very anemic) while we were still in the hospital, and lent a shoulder to cry on. She has been a wonderful support for us this past year. She has visited us several times with her delicious and always-welcome roasted veggie casserole!

Sue at the NICU Laura Beth at the NICU

Laura Beth and Bryan were the other local first-responders. Laura Beth came to the hospital several times, with gifts of food, magazines, and always a sympathetic ear. We are forever grateful.

When Oliver was 8 days old my sister Caitlin arrived for a week-long visit, traveling all the way from Ithaca, NY. We had planned the visit months in advance, and I had so looked forward to sharing the joys of our new baby with her. Although it was not the happy visit we had envisioned, her loving presence during the early days of our crisis was a tremendous help. She was with us through an extremely difficult week. Among other things, I leaned on her when I was discharged from the hospital, and when we got the upsetting results from Oliver's first MRI. Having her there, as a sister and as a doctor, was a incredible comfort to me. The time for goodbye came far too soon.

Aunt Caitlin at the NICU Aunt Caitlin's first cuddle

From the very beginning Caitlin wanted to hold Oliver, but the NICU rules do not allow anyone but the parents to handle their babies. They were pretty strict about this. But the day before she left, during a crib change, a sympathetic nurse let her hold Ollie while he was temporarily off his monitors. We are so glad she got a cuddle!

Oliver and Meghan at the NICU Tubes and airplanes

Wednesday, October 01, 2008

Thank you

Oliver and Snowball
Shami and I are extremely touched by the incredibly thoughtful and sincere responses to our previous post. I know that every one of us has our own unique set of challenges and difficult situations that we must face. We appreciate your concern and caring for ours. By reaching out to us, each of you has helped to uplift our spirits. Thank you.

Thursday, September 11, 2008

One year

A few days after Oliver's birth, while I was sitting by his side in the Neonatal Intensive Care Unit, a nurse paused to ask me how I was doing. I think my numb look and tear filled eyes answered her question. She told me that the level of stress on a parent with a baby in intensive care is greater than that on a soldier heading into combat. I can't say if this is true or not, but what we were grappling with was so much more complicated. There simply are no words powerful enough to capture the depth of grief, confusion, and emotional turbulence that Shami and I went through, and continue to go through every day, even one year after the birth of our little boy. Oliver's first birthday brings back memories we wish we could erase from our minds forever, but the consequences of that day will never allow us to forget. Some of you know quite a bit about what happened, and what we are going through. Others know very little. Perhaps more as therapy for myself than for any other reason, I thought I would write down a little bit of our story. Feel no obligation to read on.

We were thrilled when we found out I was pregnant. I had waited for a very long time to start this new chapter in my life. My pregnancy was healthy, and we were filled with hope and anticipation. I exercised, ate well, and read all the books. We were going to do this right! Shami and I were booked into the Birth Centre of the Royal Prince Alfred Hospital, the major teaching hospital in Sydney. It was perfect for us – I wanted to have a laid back, quiet and natural childbirth, yet we were comforted that should anything go wrong we would be well taken care of at this major hospital. 

Three days after my due date I finally went into labor. We were beyond excited – this was it! We labored at home through the night, and arrived at the Birth Centre at 4:30 in the morning. When my water broke at 8:30 am there was meconium in the amniotic fluid and we moved to the Labor Ward to be monitored more closely. We were reassured that this was not uncommon, happening about 20% of the time, and that we should not worry. So we settled into the new room, and I was fitted with a continuous heart-rate monitor. I was disappointed that the baby would have to be checked by a doctor before I could hold him, but I understood that was what needed to happen. The excitement didn't subside because I knew I would still have my baby boy very soon. Shami was an incredible and tireless support, and I anticipated the rush of emotions I would feel when I finally held my baby in my arms. I was so eager to meet him, the prize at the end, and it kept me going through a long and hard labor. How I looked forward to cuddling and nursing my baby. How I looked forward to telling our family and friends all about our new little boy. How I looked forward to bringing him home, rocking him to sleep, playing with him, watching him grow, learn and explore the world. I dreamed about his future as I looked forward to our new life together as a family.

Our little boy was born on September 11th, 2007, at 12:30 in the afternoon. A fitting day, I suppose, for how things ended up.  After two and a quarter hours of pushing, an episiotomy and a third degree tear, our baby finally came. The joy ended. In an instant our world turned upside down. Our happiness, our dreams, and our future were torn from us. Things went so terribly wrong.

Our baby lay there, quiet, limp, and motionless. The midwives were stunned. Then the whirlwind started. They clipped the cord. He was not  breathing. His heart was not beating. A resident was standing by to deal with meconium, he was not expecting to revive a dead baby. Soon there must have been a dozen people surrounding the crash cart.  I looked through an acrid and prickly fog at a scene I did not understand. There was a swarm of frantic doctors saying unpleasant things in unpleasant tones. I remember the clock on the crash cart, counting the seconds up and up... nothing... nothing...  It took them 6 minutes to get his tiny heart beating, and each second was an eternity. We do not know for how much longer than that our little boy had been without oxygen. Our precious baby, who was just was trying to be born, had the cruelest entry into this world. He was a strong 4.02 kilos (8.8 lbs), and a fighter. But he used up all his reserves until his head and his heart just could not keep up. 

Our poor, helpless little baby. He scored a mercy 1 on his Apgar, for color, and had a horrifying blood pH of 6.9. Shami held onto his little toe as they revived him, and I asked that he stay with him as they carted him off to the NICU – one of the best, we were told. Luckily, that was just down the hall from where he was born. I could not accompany them, and wouldn't see them again for many hours. I lay in shock in a pool of blood where I had given birth to him. On top of everything I had a placenta that would not detach. After many failed attempts to deliver it I was finally wheeled to surgery to have it removed manually. It had been a healthy placenta. We were later told that the sudden switch of the euphoric mothering hormones to stress hormones could wreak havoc like this. So after a completely drug-free labor and delivery, I was given an epidural. Actually two, as the first one did not work. I lay there bleeding, waiting several hours through two epidurals and the procedure, not knowing what was going on with my baby. I had massive blood loss and became extremely weak and anemic. But I don't think there is any suffering that can compare with the absolute despair of knowing that your newborn baby was fighting to stay alive with unknown brain damage. 

Hours later I was wheeled into the NICU on my recovery bed to get a glimpse of my son before being taken to my room. It was a horrifying sight. He was covered in medical paraphernalia. He was intubated, with a machine breathing for him. There were IV drips, brain monitors (to detect seizures) and many other wires, tubes and devices covering his cold little body. And he was indeed cold, as they were chilling his core temperature down for three days in an effort to reduce secondary brain damage. He lay there on ice packs, eyes closed, just existing. I don't know how I existed. I am amazed one can endure such excruciating grief and not just crumble away and die.

The emotions swirling inside us were intense, scary and confusing, yet we had to function and be caregivers from day one. Oliver needed us to be there for him. We had no space to deal with our loss. Staying in the hospital's maternity ward with all the healthy mothers and babies was a cruel punishment for us. For ten days we were surrounded by proud fathers and beaming mothers who were resting and being pampered. The women glowed in the happiness of new motherhood. We did not belong in their world. In a daze Shami would help me hobble past all the new parents learning to bathe their perfect babies, past all the cheerful visitors smiling, laughing, and celebrating. On our way down to the NICU we would walk past breast feeding classes as I clutched in my shaky hand the colostrum or milk I had expressed drop by drop into syringes. It was to be frozen and tube fed to our baby when they thought he might be strong enough to tolerate it. But worse than staying there amongst the happy new families was being discharged: leaving Oliver in the NICU, driving home with an empty car seat, and stepping into our apartment without our baby was unbearable. I wished the grief would kill me.

Oliver stayed in the hospital for forty days. The beeps, smells, and sadness of the place are burned deep into our psyche. Shami and I spent almost all our time there. He would stay late, I would go in early, and much like this entire year, we survived only because we did not have a choice. On October 20th, 2007, Oliver was discharged, and we brought our injured little boy home. 

Today, September 11, 2008, Oliver is one year old. He is a precious little boy, and he looks very much like his dad. He has an impish grin, and treats us to little laughs every now and then. He has lovely long lashes and gorgeous dark eyes, and when he smiles he reveals the cutest little dimple that warms our hearts. Even with all his discomfort and limitations, Oliver is able to find some time to be happy. He loves to go for walks outside, he enjoys his music, and his own sneezes delight him (ours, not so much!) He is a sweet natured boy at heart, in spite of all the obstacles he has to deal with.

The consequences of his injury, however, are severe and far reaching. An MRI at one week of age showed signs of significant hypoxia resulting in "profound and acute" damage to his brain, mostly the basal ganglia. This was confirmed by a second MRI at three months. At seven months a neurologist officially diagnosed cerebral palsy, predicting that it would likely develop into a mixture of spastic and athetoid CP. He could not say for sure, but he indicated his concern that Oliver's cognition would be significantly impaired as well. We see a brightness in his eyes and an engagement with his world that makes us hope otherwise. No doctor will venture to make any positive predictions about Oliver's future. Everything is a game of "wait and see." So, although the present is beyond difficult, the future remains an unknown and even scarier place.

At one year of age Oliver's challenges are already great. He cannot roll over, sit on his own, use his arms, or grab a toy. He has never been able to feed by mouth, and receives all his food through a tube surgically inserted into his stomach. He continues to have a weak and uncoordinated swallow, and we don't know if he will ever be able to eat, drink, or talk. On top of this he suffers from terrible reflux, causing frequent vomits and extreme distress both day and night. At any moment he can go red in the face as his stomach spasms and churns, until he cannot hold down his food any longer. Trying to get (and keep) enough food in him is an unrelenting battle, and affects so many aspects of his life and progress. His breathing can be labored, and more serious medical intervention may be required if we find that he is aspirating fluid into his lungs. Every bad turn feels like the end of the world all over again.

Even a year on we have not had the time or space to mourn the child he should have been, or the life we should have had. Some days are better than others, but they are always a challenge to get through. We can still smile and laugh, and occasionally people even comment on how well I am doing. But there is a constant underlying awareness of our situation that has seeped into every cell of my body and has altered the way I view everything. Powerful emotions still overcome me and tears still flow freely, especially at night. But I weep with no resolution. I am told that for the rest of our lives we will not only live with chronic sorrow, but continue to jump between such feelings as anxiety, jealousy, denial, guilt, fear, anger, depression, joy and gut-wrenching grief. I know that in time I will learn to cope better with our situation, and perhaps I will adjust to our own version of normal. I understand that the unrelenting work and challenges will be rewarded with accomplishments, maybe big, maybe small. But he shouldn't have to struggle so hard for every little thing. We love Oliver. He is a super baby, and will be a super child and adult. He already makes us proud to be his parents. Yet, as we see those around us enjoying the path of life we long to be on, there remains an ever-present sadness for what we have lost, what we never had, and what will never be.

In writing this essay there is so much I have glossed over, and even more that I have not mentioned at all. I see how inadequate words can be. But perhaps it will help you understand why we have not posted too much to our blog, or been more in touch with all of you since Oliver's birth. We want to thank those of you who have reached out to us this past year. This sad turn of events has been an isolating experience and your caring words and big and small acts of kindness, from near and far, have meant a great deal to us. It has deepened even further our gratitude for having such loving and supportive families who, although living half a world away in North America and India, are there for us no matter what.

So here we are on Oliver's first birthday. It marks the end of a very hard year, one we have survived only because we had no choice. Perhaps the next year will be easier, but it's likely to be twice as hard. For now, there is no way to tell.

Tuesday, August 26, 2008

Cockatoo attack!

About a year ago, when we were getting close to harvesting our kumquats, we woke to find the entire tree had been ravaged by cockatoos. Dozens of kumquats were scattered on the deck, each with a big hole though it. We wouldn't have minded so much if they had been hungry birds, but they just pecked at them and discarded them!

As I was sitting with Oliver today, I glanced outside to find some cockatoos helping themselves to our kumquats once again. I jumped up to shoo them away, but took a moment to snap a few pictures and a little video first. Then I picked as many ripe kumquats as I could, but many of them still need more time on the tree.

Cockatoo attack! The culprit escapes

It is hard to be too angry though, as the cockatoos are awfully cute!

Sunday, July 20, 2008

Our Ithaca visit

Our trip to Ithaca worked out to be much harder than we had ever imagined. Oliver fell sick with a high fever, and none of us got a moment's rest for the entire 28 hour journey. We breathed an exhausted sigh of relief when we finally landed in Ithaca.

Arriving in Ithaca Meeting the cousins

Left: Weary travelers -- how good it felt to be met at the Ithaca Airport by my parents, and my sister Caitlin, who was behind the camera.
Right: Oliver was quite sick and feverish for the first several days in Ithaca, but his cousins still enjoyed getting to know him. Meghan and Oliver with Shannon, Mariah and Kieran.

When he was feeling better, Oliver had quite a nice time playing with his grandparents.
Oliver with grandparents

Oliver and Devon Cousins at play

Left: Oliver enjoyed attention from his cousin Devon.
Right: Ian and Wei, my brother and sister-in-law, came down from Canada with Molly and Eamonn. Here are Eamonn and Molly making a rocket ship with Mariah.

Family group
A family photo. Unfortunately Shami was in Boston at a meeting. We'll photoshop him in at a later date! You can also see Oliver's newest cousin, Eliza, being camera shy and hiding inside her mom's belly. Eliza Madigan Kennedy was born on July 1, 2008, nearly two weeks overdue.

New baby! On the couch

Left: Shami, Oliver Jeanine, Sean and Eliza
Right: Caitlin, Shannon, baby Eliza, Kieran, Meghan, Oliver, Barbara.

Four cousins
Suddenly Oliver doesn't look so small any more!

Ma, Da, Alex, Oliver
My good friend Alex came to visit from Boston. It was good to see her.

We thought that the trip back couldn't be much worse than the trip to Ithaca, but we were very, very wrong. Not only did Oliver have another high fever, but he picked up a gastro bug as well. We got lucky and were upgraded to Business class thanks to the Pope (long story), but Oliver cried and thrashed the whole way. We actually had concerned flight attendants asking us if we needed to divert to Honolulu or Nadi. We made it to Sydney, but spent our first night back at the Emergency room...


Sigh... we missed our family in Ithaca. But we did learn that pure exhaustion is a sure-fire cure for jet lag!