new photos.

One of our close friends (Bethany) sent me these photos today that she had taken in January while visiting us in the the NICU at South Bend. I had never seen these photos, and though they brought lots of tears, I am so grateful to have more beautiful pictures of Olive.

I was chatting with another dear friend of mine from Seattle and she said something that meant so much to me...probably more than she realized. She said, "I would never wish the pain on you, and still wish there was something i could do to take it away...but you have come into you. You were always there... but Olive made you glow."

I carry you with me into the world,
into the smell of rain
and the words that dance between people;
and for me, it will always be this way,
walking in the light,
remembering being alive together.

-Brian Andreas

uncomforting statistics

I just finished reading the book, "An Exact Replica of a Figment of my Imagination" by Elizabeth McCracken. The writer shares her story about delivering her first son, stillborn in France. She writes about her pregnancy, birth, and thoughts after. I loved her writing.

In one of the chapters she is already pregnant with her second child after losing her first and is in the OB office for a check-up. She is asked if she would like to have an amniocentesis done to check for any genetic abnormalities...

"I mean," I said to Dr. Knoeller, "we figured we might as well. I guess. I don't know. What do you think?"  

Well, she said, the real question was if we had the amnio, and the results were normal, but it was one of the one in two hundred pregnancies that miscarried after the procedure, how would we feel?  

We were stunned into silence, because of course that was the question. Even if you rephrased it--as Edward pointed out, one in two hundred sounds worse than one half of one percent because with the former you visualize acual people--we weren't willing to risk it. Once you've been on the losing side of great odds, you never find statistics comforting again.

And how true that is. Odds for the worst case scenario almost make us twinge now, because over and over that is what happened for Olive.

All of these statistics were based on studies done in America. Olive was born in Thailand, and had her initial treatment there at a less than ideal NICU. So I'm sure some of these statistics aren't completely valid for our specific scenario.

1) What percentage of premature babies are born between 28-31 weeks? 10% (1)

2) What are the odds that a baby born at 28 weeks will survive? 96%. That means Olive was in the 4% of babies that die. (1)

3) What are the odds that after giving a pre-term baby surfactant that they will have a pulmonary hemorrhage? 1.47%. Yup...that 1.47% was Olive. (3)

4) What is the percentage of pre-term babies who have level four brain hemorrhages? "The incident of grade III or IV IVH (intraventricular hemorrhage) is only 2% of infants born AFTER 25 weeks."  (2) We were told that it  has been years since the NICU in Chiang Rai, Bangkok, or even in the States had seen a brain hemorrhage as severe as Olive's.

5) What are the odds that a baby will get meningitis two days before an international evacuation? Hard to find the answer to this one, but I'm guessing its probably in the very small rarely ever happens range.

6) What are the odds that a Thai opthamologist will stop in the middle of laser eye surgery due to a power outage and not go back and finish the job? Not sure, but I would guess and hope they are low.

7) What is the percentage that a shunt will break? 1.01% according to one study (5)

8) And are the odds that a child will contract an infection from a VP shunt? According to one study in 2006, I found that the risk is about 3.98% (4).

9) What are the odds that your baby will be buried on a plot that has already been sold to another individual, and that she will need to be dug up, and reburied? Yup, that's right. Unbelievable. Pretty sure the risk of that is low, but sweet little Olive can't even get a break after she dies. My parents are going to be there when this happens to make sure the young amish teenager who will be digging is gentle, careful, and respectful with her coffin. Neither Rusty or I wanted to be there...just makes me feel strange inside.


So all this to say, while some people rest in the comfort of statistics being on their side, I am now rather fearful of even those little eency weensy 1% risks that once felt reassuring. 

References:

(1) http://www.marchofdimes.com/professionals/14332_1157.asp

(2)http://books.google.com/booksid=pM1l6cQBT7oC&pg=PA203&lpg=PA203&dq=what+percentage+of+preemies+have+hydrocephalus&source=bl&ots=91KviDux00&sig=l0MyClZjCnWJS54q3psoht7ZVN0&hl=en&ei=AKL8S7Qikfgx1qOZ3wc&sa=X&oi=book_result&ct=result&resnum=5&ved=0CCcQ6AEwBA#v=onepage&q&f=false

(3) http://www.cps.ca/english/statements/FN/fn05-01.htm#risks

(4) http://www.bioline.org.br/pdf?mb06010

(5) http://www.springerlink.com/content/hl3760h335325001/

(6) http://www.nichd.nih.gov/womenshealth/research/pregbirth/preterm.cfm

the grotto.

Last week we went to a workshop on grief with Dr. White and Kathy at Notre Dame, and following the evening we walked to the grotto. We lit a candle for Olive, and Kathy lit a candle for her twin sister who passed away a little over a year ago. There was something so moving about seeing all the candles lit, and the symbols of all those prayers that had been offered up. And then it became even more beautiful when my eyes welled up with tears and the colors of all the flickering flames blurred together. Each flickering flame represented someone's story...someone's prayer for a loved one.

While lighting a candle in honor of Olive I was reminded at what a gift she was to us.

She was a gift, and we were entrusted with her for a little while.  Instead of letting anger take over in those moments when I feel like her time was too short, or that her life was full of too much suffering, I just want to remember that simple truth. She was a gift, and I had the privilege of caring for her for the time she was here on earth.

a rambling of thoughts.

i've been missing Thailand today.

missing the kids and staff at the Akha Youth Development Center.

my Thai teacher.

the nurses in Chiang Rai & Bangkok who cared for Olive.

i miss going to the market and buying fruits & veggies and freshly killed pig for dinner.

waking up to chickens crowing.

tucking in the littlest hostel kids and praying together before bed when they are crying and homesick.

bubble tea at the market in huisan prapbla.

studying thai...speaking thai.

i even miss the hostel kids faking being sick at 5:30 in the morning hollering "P Lynette!!!!!" at the top of their lungs at my front door until i stumbled out of bed to take their temperatures.

Doi Chang Coffee.

sad to be missing out on plowing and preparing the rice fields for planting

the night sky where the stars seem brighter than any other place on earth.

i miss hearing Gee whine about his back hurting because of how hard he worked driving the kids to school on the bus. :>)

pad makeua (friend eggplant with garlic and pork).

mobile Clinics.

i miss Yosu's giggle and blue sunglasses.

long tandem bike rides into town sweating bullets.

motorbike rides home during sunset.

lynchee season.

i miss being pregnant with Olive in Thailand and life before my world turned upside down.

i miss when life seemed simple.

when future decisions seemed clear cut.

i miss lying in bed at night when Olive would have her routine aerobics session as I was trying to fall asleep.

i miss waking up with her kicking me when I would roll onto my belly and accidentally squish her in my delirious slumber.

the truth is that life has become messy, confusing, and overwhelming.

though in having my heart gouged out I've gained a new understanding of the depth of my ability to love another human...a very small human with big eyes that seemed to know more than doctors gave her credit for.

my black and white world has become a shade of gray. 

simple answers are feeling less and less adequate... and I'm trying to just be ok with that.

trying to stay calm. trying to be okay with sitting in a place without clear answers and filled with tension.
trusting that this is part of the journey too. 

i have hope that I won't always be here, in this place.

but for now here i sit.

and i'm okay with that.

some of the time anyways.