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.