Reliving the Preemie Experience

In the last year I have been volunteering my time to speak with parents who are going through similar NICU stays.  Parents of gravely ill babies born way too early.  It has been rewarding and even sometimes really hard. 

More than six years after the premature birth of my boys, my very healthy and happy children, I can still be pulled back into the nightmare, the horror that is prematurity.

The families that I have worked with were wonderful.  They've all had that perfect mix of fight and fright.  Never too optimistic, never too down.  You have to be that way with the prospect of a prolonged NICU stay. It has been a great experience, and I really enjoy working with them, but they are essentially strangers, it is easier somehow.

In the last 30+ days I have been too close to prematurity again.

34 days ago, a friend, a former NICU friend, gave birth to her son, prematurely. In a country that admits to being 15 years behind the US in their neonatal medicine.  At 26 weeks.  I know 26 weeks so intimately. Her son, was only 1 pound 7 ounces.  Even more Micro than my Micros He has already had a brain bleed and NEC,  however on the positive side, he is sprinting, and his lungs seem to be doing so much better than my 26 weekers.  Everyday she posts an update on Facebook.  Everyday I hold my breath as I read it.  I know so well how quickly something can change.  NEC -- That scares me so much.  We escaped its wrath, but each time I read that they are increasing his feeds, or that his belly is a little distended, I cringe.  She is so positive, and strong, and guardedly optimistic.  In the first few days I would scream at the computer at all of her other friends congratulations, and positivity.  Only someone who has been through all the ups and downs can know how painful congratulations can be.

Just last week another preemie was born to a friend of the family.  27/6. Preeclampsia.  It all comes back so strongly. Every up and down. Every milestone.  First skin to skin. First feed. This boy is doing really well.  So far no major issues.  I am holding my breath, can you tell?

As much as I want to know what is happening with these babies, it is hard. I am trying to follow "casually". Maybe it is a protective wall. I worry about these friends.  Every day.  My heart aches for them. Every day. Their babies get stronger. Every day.

and maybe I do too.

Deja Vu all over again

....and in a bad way.

Friends of ours from our NICU days have been on the road to having another baby. They decided on a surrogate in hopes of not having another premature baby.

Yesterday, I got a call from Todd. Their baby girl was born at 26 weeks, 6 days. She weighs less than 1000 grams. (That's around 2 pounds)

This news has floored me. I felt like someone punched me in the gut. At the same time I feel my chest tightening and all the air in my lungs is being squeezed out of me with a force so strong I cannot even begin to describe it.

I can't imagine Todd and Nina, back at the NICU, back for another long, long stay, with another medically fragile baby. My heart is aching for them.

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My heart, its been aching for many people lately. There seems to be a terrible amount of sadness in my circle of friends right now. Death, baby loss, marriages crumbled, children suffering, and now this.

All of this heartache, a painful reminder to appreciate everyday, even the toughest of the tough.

Life lived fully

This past weekend I went to the memorial service for my friend that passed away a few weeks ago. It was a lovely event with more than a hundred people in attendance. There were people from all aspects of Albert's life. Friends he met in the 7th grade, friends from high school, friends from college, friends from after college, friends from poker, friends from sea kayaking, friends from polo, friends from a social group, friends from a charity he volunteered with.

We had a number of speakers who told stories. We had a 3 hour paddle. (to scatter some of his ashes in the Bay) We had a long, laughter filled dinner. We had ice cream. All things Albert would have loved doing with us.

For me there were a couple of things said that day that struck me. Hit me hard, made me stop and think.

Albert's brother Tom said that he asked Albert shortly after his initial diagnosis if there was anything he wanted to do with his remaining time. Albert's response was no, he'd pretty much done everything he wanted.

How many of us can say the same thing? How many of us in 45 years have lived their lives fully, with no regrets, so that if we found out tomorrow we were dying, we would just be content to live our our remaining days just like we had before we were diagnosed?

Albert had his life set up so he had the means to live the way he wanted, to go and do some of the things that most of us can only dream about. But I think each of us can find small ways to live like there is no tomorrow. Now I'm not suggesting some list of things to do before you die, but making conscious decisions to take the long way home, or to eat that steak if it's what you really want, or to say screw the housework, I'm going to sit and play with my kids. It's those choices that might make tomorrow a little harder, or cause you to have to work out a little extra, but really, isn't it worth it to live your life fully and end it, whenever, without regrets?

My Friend

I've seriously been a slacker with my blog, and I have a lot of things to say. We just returned from a lovely vacation with the family and I've got lots of funny stories that I'd better get written down before I forget them.

(In fact, excuse me while I write a few notes to myself. first real time out. nannies house. more bike ride please. pa-pa-chute. failure to sleep. climbing in and out of cribs.)

I've come out of my quiet spot, to write a few words about my friend. Our friend.

I've mentioned my obscure sport, kayak polo, well it's how I met my friend Albert. He was living here at the time and when Scott and I started playing the game, Albert was one of the first people to welcome in to the group of crazies that make up kayak polo in the US.

Albert's personality was bigger than he was. (and he was of above average height) He always had a smile on his face, a story on his tongue, and warmth in his heart. He was the guy, the guy who knew everyone. The guy who had more friends, and people to see, than anyone else I have ever known. His heart was so big I'm shocked it fit inside his chest.

Albert had many physical talents. In addition to kayaking, he played handball, hockey, lacrosse, tennis, and he taught himself to play the piano a few years ago. Everything he did, he did with a passion, an did it to a very high level.

Albert moved to San Francisco a few years ago, but he visited us often. Many times when he was in town, he stayed with us. Before we had kids, we had our piano in the "music room". This was also known as Albert's room. He was the only one that played our piano regularly. (I've mentioned that I'm a slacker) He'd sit down and plunk away. Sometimes we'd have a few people over and we'd be sitting around talking, and laughing, and the next thing you know, Albert would be playing the piano. He wasn't the greatest, but he worked hard at it, and he was passionate.

In 2004 I competed in the Canoe Polo World Championships in Japan as a member of the US Women's team. Albert was on the Men's team. I was in Japan for four weeks, three of them spent with Albert. The teams would share meals together, bus rides, sightseeing adventures, walks to practice, we basically lived together, the two teams. Some of my fondest memories of Albert come from this time. Albert was great helping me train. He'd sometimes call just to find out how training was going.

While in Japan, Albert was a bit of a celebrity. He resembled famous a sumo wrestler, named Waka-no-hana, and everywhere we'd go, people would giggle, point, and stare. Albert also loved to eat, and the Japanese appreciate a good eater. The people who ran the ryokans we stayed in loved that Albert would take third and fourth helpings.

One of the boys favorite songs is, "Leaving on a Jet Plane" and it reminds me of Albert. One day we were making the walk from the pitch back to our ryokan, ans Albert started to sing. "I'm leaving on a jet plane, don't know when I'll be back again..." He got lost in the words, and the group of us tried to remember them, and then, we struggled to figure out who sang the song! Many times since his illness was revealed, as I've sat singing this to the boys, with John Denver's help, I've thought of Albert and this moment in Japan.

We were able to visit Albert in December. He was in good spirits, looking thin, but his personality was the same. He was up beat, and he was confident he was going to beat the cancer. He was diagnosed with Stage IV Non-Small Cell Lung Cancer (many tumors, largest golf ball size) Brain Metastasis (about 2 dozen tumors larges golf ball size)Bone Metastasis and Spleen Metastasis. He was given, at best 4-7 months to live. A few months into treatment, he had doctors shaking their heads as the tumors in his lungs and brain had all but disappeared. It looked like this long shot might just come in.

In July things turned again, his cancers began progressing again, and on August 20, 2008, he finally succumbed to his cancer.

My heart is heavy for the loss of our dear friend. The world is a little less bright without Albert's smile to brighten things up, and a little quieter, with out his laugh.

Sadness renders me silent

A friend of ours is sick. We've known about it for a while now. Almost nine months. It makes me sad almost every day.

It's hard for me to fathom how someone so full of life, so vibrant a human being, so loved by everyone he knows, could be suffering so.

We had a moment, a fraction of time where it seemed like he was going to beat the beast that is cancer. His tumors were shrinking, he was feeling better. As suddenly as his diagnosis, and remarkable improvement, he has taken a turn for the worse.

I want to blog about it, but I don't want to eulogize him. I want to do something, but what?
I pull up his blog everyday and worry that today will be the day, the day that through all of my optimism, and hope, the worst will be there in black and white.

Sixty Years

My Mom met her best friend when she was 18. They worked together at Bullock's Department Store. It was 1948. A tough time for Japanese Americans in the U.S. Only a few short years before, Japanese Americans were being held in Internment Camps around the country. In 1948 Japanese Americans were trying to put their lives back together.

In many ways it was a natural for my Mom to become friends with Jeannie. My Mom was as she puts it, "an orphan", Jeannie's father died in camp when she was only 13. They both suffered the loss of a parent. They were both strong enough to pick them selves up, and help their families survive some very tough times. My Mom took care of her four brothers, Jeannie helped her Mom run a boarding house and cared for her younger brother. They were strong, independent young women, in the 1940's. It was a no-brainer that they'd be friends.

Yesterday, I went with my Mother to bury her best friend.

They'd been friends for Sixty years.

I cried for my "Auntie" Jeannie like she was my own mother. Well, because she could be. My Mom is lucky, she has her health. Auntie Jeannie suffered from Lupus, Arthritis, and in the last few years, multiple failings of major organs. In the last year, she lost her ability to walk, and care for herself, but she never lost her strength.

I will always remember her bustling around the kitchen in her Muʻumuʻu's. Making some glorious feast. I remember spending hours in her house with her kids, playing games, eating, listening to my Mom and her talk. If any of you have had My Chinese Chicken Salad, well, you can thank Auntie Jeannie, it's her recipe. It's a recipe my Mom made for me 10,000 times, and I now make it and I hope my boys will equate fond memories of childhood to the smell of vinegar and pepper, two of the more prominent ingredients in the dressing, just like I do.

I will always remember her laugh. It was loud and full of joy. I will always remember her kindness, she always asked about me, and the about the boys. Even near the end, during my Mom's last visit, after looking at pictures and hearing stories, she asked my Mom to tell me how cute they were, and how happy she was for me. Even as her body was failing her, she was reaching out to others.

Almost 300 people came to pay their last respects to this woman. My Mom and I were just two of many. The loss of Auntie Jeannie, has me thinking, has me pondering. How long do I have left with my own Mother? Will my sons remember her? She was an old Mom, like I am now. Will my son's loose a parent before they are 40? Before they have a family of their own? Will I live to see my grandchildren graduate? marry? will I see great grandchildren?

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So you, those people I've known for more than twenty or twenty-five years, remember this, we've got a long way to go to sixty, I'm looking forward to the next forty years.

The many faces of bravery

My mother in law was here for a few days catching up with the boys, (post on that coming up) we were talking, and she called Scott and Me brave. That got me thinking, a lot. In some ways I guess we have been brave. The last few years have been difficult to say the least, but I never would have used the word brave to describe us.

Brave--As defined by the Merriam-Webster online dictionary is: having or showing courage.

Hmm, okay, I guess we have shown a bit of courage, we have endured a lot. Five months in the NICU, five months of pure torture wondering everyday if the boys would ever be well enough to come home. But through of all of that, we came home with the prize. We have two healthy toddlers providing us with endless hours of joy.

I'm reminded that there are so many others that are not as lucky. There are the grieving Mom's I know only through their blogs. I'm not sure why I am drawn to their sorrow, but I am. Maybe it helps to remind me, on those tough days that I have to be thankful for two healthy boys, that life could be so different. Endure the whining, or the emerging tantrums, endure the battles at mealtimes, because we could have been forced to endure the worst tragedy a parent could experience. A simple twist of fate and one or both boys could have slipped through our fingers, never to take up residence in our home, always lingering in our hearts.

During our recent trip to the River, we spent some time with our friends Katherine and Paul and their two children, Naomi and Ian. Katherine and Paul had three children, another boy Richard born between Naomi and Ian. Born, brought home, and then suddenly taken ill. He lived for five weeks. His parents sat vigil at his bedside, and cared for their daughter too young to really understand all the commotion in their otherwise idyllic home. After losing their infant son to a virus that attacked his heart and kidneys, watching him get weaker and weaker, and ultimately leave this world, they had to go home without their son. They had to mourn and parent. I cannot imagine. I cannot fathom.

They got out of bed each day, loved their daughter, with a giant hole in their hearts. Over time the hole is getting smaller, the wound not quite as raw. They were able to talk about Richard without losing it. They talked about how it is still hard. How when all the families are together, there's someone missing. The talked about how the emptiness is still present. What I marvel at is while experiencing the ultimate in grief, Katherine and Paul still managed to raise a vibrant, happy little girl. And they went on to have another child. I think I would have been paralyzed by fear. Fear that it could happen again. Knowing that, I wouldn't have it in me to go through it again. (Sometimes I think of another child, but the NICU looms over me like a cartoon anvil, ready to fall on my head.)

Yes, surviving the NICU, did require bravery.

Surviving the loss of your child, requires bravery I cannot even begin to touch.

It's good to remember

I just finished crying my eyes out. One of the bloggers I read regularly posted a link to this blog.

It really hits me hard when I read about other 26 weekers, other preemies, or other troubles with multiples.

I can't even imagine what this poor Mom is going through. Her twin son died after 3 weeks in the NICU, he had a Grade IV IVH (Interventricular Hemorrhage) on one side of his brain and a Grade III on the other, after a pneumothorax, (Evan had a pneumothorax, and a grade II bleed) they made the painful decision to take him off the ventilator, he died in their arms. Now just a few short months later their baby girl died too. How do you get out of bed after loss like that?

Life in the NICU is such a roller coaster, such a long, long ride. I don't think you ever really get over it, but all the Nurses told us, we'd forget a lot. We have, much of the hard stuff, the really hard stuff, has faded, the memories not so sharp and clear. They are still there, I was reminded over Christmas when Mary was relating her experience visiting the boys in the hospital. Sitting there watching them, willing them to breathe, waiting for them to breathe. (her point was that look at what miracles they are now, signing like crazy, running around, playing in the snow, how amazing they are!) I had almost forgotten about the hours and hours we spent doing just that. Almost. I had almost forgotten the bad stuff and then I go and read a blog like that.

In a way I don't think it is a good thing to completely forget. When I'm pulling my hair out, when my babies are screaming, when I'm exhausted, frustrated and finished...it's really good to remember.
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