Family

I just want everyone to know that I am fine now. Thank you for all the love and prayers, thanks to Dr. Kaminsky and Dr. Kirby for getting me started out right, and thanks to all my friends back in Portland, especailly Dr. Jay and the nurses and neonatolgists for taking such good care of me, and thanks to Gramma and Grampa Cooke and Gramma Josie and Papa and Aunt Angie and all the uncles and aunts and nephews and nieces and friends and relatives - wow, thanks to everyone!!! My mom and dad are really blessed! And now I have Katie and Carter to help take care of me, and mom is teaching me to drink milk (the right way) and dad holds me and stares at me and cuddles me and snuggles on the couch and pats me on the back to get me to burp and sometimes I just want to say "Aw, dad, we're all fine now," but all I can get out is "goo." That seems to make him happy enough.

Katie and Carter just ooooh and aaaahh over me. Katie can't wait to braid my hair. Carter wants to race me (hello? Carter, do you think you'll win?) I think they are the best brother and sister I could ever have picked for me. We're going to make a great threesome - we'll go on lots of adventures, get bee stings, make mud cakes and mud soup, and catch Daring Jumping Spiders (Carter's favorite) and put them in plastic salsa tubs (Katie says you have to poke holes in the top for them to get air - I know how it feels to not have enough air to breathe.)

But mostly right now I'm just going to catch up on some sleep in my new room. Mom and dad painted the walls bright pink, with yellow and white stripes on the lower part. My crib is super comfy and no one pokes me at night (except yesterday, I got a shot at the doctor's office, but I only cried for a few seconds.) I try to let mom and dad get as much sleep as they need, but I do get hungry. I cry as soft and sweet as I can to get them up. It's kind of funny to see them wander around sleepy-like in the middle of the night. It makes me giggle.

Know what? I'm just trying to say that I'm glad to be home. Life is a great adventure, isn't it?

Home

Ladybug One is in the house! She rolled in at about 8:00 on Tuesday night. It was still 81 degrees out, down from the record high of almost 94 at 5:00PM. Ouch. no wonder she looks grumpy!

She's settling in fine; loves her crib, loves her room, loves her brother and sister (and they were so excited that they flew around the house like barn swallows.)

She needs to eat a bit more, but she's sleeping a lot right now. She's going to see her pediatrician, Dr. Bolduc, at 2:30. Ah, the life of a star.

It sure is good to have our girls home. The family is finally completed. Now we can rest (ha ha - we went to bed at 11, got up at midnight for a feeding, alarm went off at two - that's when we thought we would have to feed her - alarm went off again at 4 for another feeding, finished that bottle at about five - she's a slow eater - and then I just said to heck with it and stayed up.)

Thank you God for family, friends, babies and coffee.

"And milk!" adds baby Nan.

Baby's First Bath

Once a month, whether she needs it or not...





Carter at 6 months old...any resemblance?

They definitely have the same hairstylist.







Carter at two months old - he wasn't quite a ladybug, but there is definitely a resemblance. Unfortunatly, I don't have any really young digital photos of Katie.

We must have purchased our digital camera around Halloween 2001.

News flash!

This just in...

Neonatologists, doctors, surgeons, residents, nurses and even the postal worker for the hospital all agree - Nanette should come home tomorrow!

Gramma and Grampa Cooke are mobilizing the offical Ladybug One tour bus for the homecoming event. Katie, Carter and dad are trying to figure out how to clean house. No word yet from Gramma Josie, but there is a rumor that she is doing cartwheels and handsprings. JoAnn remains calm, cool and collected.

Nanette will have to be in semi-isolation for her first couple of weeks at home, but knowing her, she'll be out and about before the month is over. She has two jobs to do in the next couple of weeks: eat and sleep. And cuddle. Three jobs. And poop and burp. I guess that's five jobs. Anyway, she's got it figured out. That's all that matters.

Letter from JoAnn

Dear Joe,

Doctor Baxter "DC'd" Nanette's monitor leads. She's totally wireless and tubeless!!! What does "DC" stand for, anyway? Discontinue?
Nanette ate all of her 3:30 feeding, and most of her 6:30 feed (drank 70 ml). If we can still get the total required volume in by 11pm, then we're good and can keep the feeding tube out. I carried her over to Silas' bedside for a photo.



Silas is getting an MRI tomrrow. Hopefully, he can get it without anesthesia. Otherwise, it's entubation (sp?) and he'll have to start trying to feed all over again. He's been nursing last night and today so Tanaya is beaming. They really appreciated the book. Albert started reading it already.

Joshua is not doing well. He had to have a blood transfusion last night. He isn't coping with the surgery very well. Becky is hanging on, but wearing thin.

Here are some photos off the digital camera. I'll send more in separate emails.

Hope you had a good drive home. I miss you already. I had a great Mother's Day and really enjoyed this weekend. Can't believe I might be coming home in a few days.

I love you!!!

Happy Meals

Nanette recently progressed from scheduled feedings to "feed on demand."

She still has the NG tube but she's getting a lot of her nourishment from a bottle, and she nursed the old-fashioned way for about an hour yesterday at one sitting.

Oh, happy meal!

The kids and I arrived late last night, but still in time to catch Nanette awake. I took Katie into the NICU and picked her up so that she could see into the crib. We slipped around the big recliner that takes up a good portion of the middle of the room and then we leaned over the crib and got our first good look at baby sister. Katie smiled and took a deep breath.

"Her tubes are gone," Katie said.

Nanette's eyes grew wide when she saw Katie and me, and she turned toward the picture of the kids that hangs on her crib close to her eye level. She studied that photo for a moment and then turned back toward Katie and made a little gurgling coo.

Katie giggled and clapped the heels of her hands together. When Nanette looks at you, you really can feel the force of love and life flowing. Her struggles have not made her weak, they have made her strong.

JoAnn gathered Nanette into her arms and they settled into the recliner to finish up the last half of a bottle, so I took Katie back out to the waiting room. Grams sat with Aunt Janie and Gordon and Josie. Carter ran up and down the hallway like a race car, stopping at each doorway to practice karate on the handles, flicking the levers down and letting them snap back up. I decided not to take him into the NICU, but when he realized that we were about to leave, he stopped suddenly and stood very still. He had a little teddy bear in his hands, his Happy Meal prize from the day. He squeezed it tight and stared into my eyes.

"Do you want to go back and see your sister?" I asked.

Carter nodded. He held that little bear tight, and I had to pry it out of his fingers to get him to wash his hands before he entered the sterile zone.

Now, the Happy Meal is perhaps one of the most brilliant of the McDonalds inventions. Carter begs for McDonalds not for the food, but for the toy that he gets in the Happy Meal. The saving grace is that Katie and Carter both prefer apple slices to fries. Of course, given the choice, they'd choose soda pop over milk, but they don't get the choice. (Carter, for some odd reason, developed a fondness for Mr. Pibb while staying at the Ronald McDonald House.) Anyway, the toys are regarded with awe, no matter what they are. This month, the marketing gurus at McD's have teamed up with the marketing gurus at Build Your Own Bear, and together they are giving out these teddy bears that are the size of chubby mice.

With his arms washed from fingertips to elbows, Carter grabbed his bear and we pushed through the double doors. We walked past Silus' cubicle and waved at Albert and Tanae, and then went down the hall to Nanette's room. When Carter saw his sister he reached out and touched her shaggy blond hair. He stroked her forehead and then, finally convinced that she was real, he turned to his mother.

"Can I give her this?" he asked.

JoAnn nodded.

Carter placed his little bear in her crib. His capacity for love always surprises me, even though it shouldn't. It's just that he spends his day putting bad guys in jail, destroying monsters, fighting Darth Vader with his "life saver" and doing battle with uncountable and unnamable space aliens, sea creatures and swamp tigers. And yet, when the battles are over and the earth has been saved, he comes back to a place of peace and love. That is the true nature of the warrior spirit. To protect and to serve.

Why do these youthful spirits always surprise me? Katie, pure love. Carter, pure energy. And Nanette, pure grace.

As Carter and I stood there, holding hands, Nanette blinked once and then went back to her bottle and fell asleep. Milk drunk, I think they call it. And that is truly a happy meal.

Life at home

I don't know what I'd do without the kids here.

I picked them up at Gramma Josie's yesterday afternoon and got them home by about five. They played outside, running around barefoot like we used to do when we were kids. Madeline brought a friend over to play and Jake showed up too. They ran around the house and swarmed over the swingset like ants. I can hear them from my office, and if I stand up and press my forehead against the window, I can almost see them down there. I set out a tray of vegies and ranch dip, and microwaved a couple of corn dogs that I found in the freezer, and then I got to work.

Some people think that writing is not work. Maybe there are writers who just sit down and the words flow out and the money flows in, but that's not me. I put my head down and my fingers on the keys and I work hard. I sent out three article queries while the kids played. When I'm working like that, time passes differently. Suddenly, the chaos outside subsided. My head came up. I heard the kids in the kitchen chatting, getting along well. Back to work.

At about seven these two little urchins show up at the door to my office (actually, I don't have a door, just an empty door jamb, but we all pretend there is a door there.) They stood in the doorway, holding hands. Carter's feet looked almost black with dirt. Dust streaked Katie's cheeks.

"We have a surprise for you," Carter said.

"Shhh," Katie said. "Don't tell him."

A surprise usually means a big mess somewhere, but writing had been going well, so I was prepared for anything. Although they caught me right in the middle of crafting a query to a business magazine, I pushed away from the desk and left the computer. It doesn't mind how long I ignore it. The kids do.

I had to close my eyes (which made it tricky going down the narrow stairway with Carter holding one hand and Katie holding the other.) They led me to the living room.

"Okay," Katie said. "Open your eyes."

I had no idea what to expect. My kids are creative, energetic and crafty.

It took me a moment to understand.

Over in the corner, in front of the chair where I do my journal writing in the morning, they had dragged the coffee table and set it with a candle (unlit, thank God) and two decorative baskets left over from the Easter we never celebrated. In the middle of the table, Katie had set a beautiful red silk napkin with an oriental design, along with a tall-stemmed glass of water and a plate of carrots, snow peas, celerey and ranch dip. Carter had added a few Doritos. They sat me down and Katie stood by, ready to refill my glass if needed. Carter, being the boy that he is, climbed on my back while I ate my dinner.

This is life at home without JoAnn. We get on. We do our best to fill in. We play our own roles and do our best to add in the large part that is missing. My heart breaks for all those others who have lost a loved one. I can't imagine what it would be like to be a single parent. I guess you adjust, but you never completely recover.

For JoAnn, and for Nanette, and for Carter and sweet Katie, I thank you, oh God.

The Star

Nanette got a private room today back in the Level 2 section (luck of the draw, really, but I like to think it's because she's famous.) Gramma Cooke held her this morning while JoAnn sat nearby. Nanette heard her mom talking, so she peeked over Gramma's shoulder and smiled at JoAnn. A real smile. The first smile.

I wish I had a picture of that, but we're having challenges with the computers at the RMH as well as our digital camera.

Nanette takes about 60-70mls by bottle now and Dr. Krishnaswami and the neonatologists are talking about releasing her next week. No wonder she's smiling. You can hear the joy in JoAnn's voice when she talks about the possibility of coming home.

(By the way, the IV in her heel came out. She's finally down to just her NG (nose tube) and the little stickies that monitor her heart rate and breathing.

At 8;27 tonight, Nanette celebrates her one-month birthday. Congratulations girl! (Your father aged at least ten years in the past month.)

Mom and dad did a little spot on KPTV channel 12 (Portland's FOX news affiliate.) Nanette was busy, so she couldn't make it. That's Drew Carney, local TV personality, hiding there behind the cameraman. You can just see Drew's arm and his hat as he shoves the microphone in my face.

Moving along

Nan took 15mls from a bottle at noon today before she
gave up. She took the other 75mls through her nose.
Momma keeps working with her on feeding, and they'll
get the hang of it soon. Nanijo has her own OTs
(occupational therapists) and LCs (lactation
consultants) helping her out too.

The IV in her head wasn't working efficiently so
they've removed it and poked one into her foot again.
She's on the last of her antibiotics, so if the heel
line falls out in before they take it out on Friday,
it'll just stay out.

Nanette's friend Silus moved to level 2, aka "feeders
and growers" a few days ago. He's working on the same
issues she is, trying to get enough milk through a
bottle so that he can go home and get on with his
life. Apparently, it's getting pretty crowded in the
feeders and growers section, but one baby moved out
this morning - heading for home sweet home.

If all goes well, Nanette takes the empty spot in
Level 2 this afternoon.

Good Day

Dad still harbors a bit of a chest cold, so he can't see his girl right now. Banished, outcast, unclean.

But, the news is good from up in NICU! Nanette's IJ worked its way loose so they took it out. She's up to 90mls per feeding through her NG tube (nasal gastric - spaghetti down her nose tube). In order to administer her antibiotics, they had to put an IV in the last remaining accessible vein - on her scalp just above her temple. Yuk. That doesn't stop JoAnn from holding her and feeding her though. Nanijo is keeping her food down, digesting it, and doing a bit of nursing on her own, but she still gags after taking in about 10ml. 30mls is about an ounce. Everything here is mls and grams.

In other news...

Brownie Troop #114 from Vancouver, Washington created a cookbook with proceeds benefiting the two local Ronald McDonald Houses. They are in the house this morning, ten little girls in denim aprons fixing breakfast and filling the air with the joy of youth. They invited a friend, Drew Carney, from Fox News (KPTV channel 12), so the kitchen is full of energy and life and vigor and most of Portland got to see us stagger out in our pajamas with cups dangling from our fingers like beggars looking for a cup of morning hobo coffee.

One foot out the door

Nanette takes a bottle now!  She gags a bit on the nipple but she drinks about 25ml a feeding right now.  She needs to get up to 70 to get out.  Her digestive system appears to be working finally (for some reason, people's intestines don't like to be anesthetized and shoved around - it takes them a while to get going again.)

 

She fussed a lot yesterday and last night, but her mother stayed with her all afternoon and evening.  The kids and I left at about 3PM.  Josie and Gordon left a bit earlier.  JoAnn spent the night alone in the room at Ronald McDonald House - alone for the first time since she moved there.  No Angie.  No Josie.  No Joe.

A song for my mother

I look upon a rainbow
I see stars are shining
I say good bye to a friend, the sun

I look upon a rainbow
I say to my mother
Is it close to seeing God soon?

I look upon a rainbow
I wish upon a star
And say good bye.

- by Katie Jo Cooke, age 6

NICU

...the skin just veils the soul
for I have seen
the face of love
the grace of God
the face of love

Jewel Kilcher



When we toured St. Mary's, maybe it was February or March, the nurse took us by the little neonatal intensive care unit there, just a tiny room by hospital standards, not much bigger than a living room.

"Hopefully, you won't need that," she said.

Of course, we did. And I'm glad it was there. Thank God for the all the great advances in neonatal intensive care. And I'm especially grateful to be in Portland right now. There is definitely some higher power at work here. When Dr. Kirby grabbed Nanette's little bed on the 11th of April and wheeled it at light speed toward the elevator, she called over her shoulder, "Where do you want to go, Portland, Seattle or Spokane?"

"Portland," I said. I didn't even have to think about it.

Dr. Kirby did her residence at OHSU, so she knew Portland. She knew that OHSU had a special team for neonatal transport, and she knew that Emanuel had the ECMO unit and specialists in CDH. There's never been any question that we ended up in exactly the right place. I think about that every time I drive here to put my family back together. Home is where JoAnn and Nanette are.

The kids and I rolled in at about one yesterday afternoon with Gordon hitching a ride. Gordon and Josie had some catching up to do, so JoAnn and I took the kids to Bullwinkles last night for dinner and games. Carter had such a good time playing video games that he didn't want to leave.

"We have to go home," JoAnn said.

Home. She means the Ronald McDonald House, but no one even questions that. Like I said, wherever JoAnn is, that's home to us. A house is just a box. It's the gift inside that counts.

JoAnn and I met here, in Portland, at the airport. We were both part of a small delegation sent to welcome a contingent of Japanese business people. That was back in the days when you could actually get into the terminal without a boarding pass. You could meet people right at the gate. Remember that? I arrived a bit early so I wandered into the lounge to kill some time. Jason Tanne sat there in a corner booth with this gorgeous woman. I pulled up a chair, but they rattled on to each other in Japanese. Jason smiled and nodded at me, but I'm ashamed to admit that I couldn't take my eyes off his companion. Long, blonde hair that shimmered in the dim light. Blue eyes like the sky. And when she spoke, even though I couldn't understand a single word, her voice enthralled me. If you ever get a chance, prod JoAnn to say something in Nihon-go. It still sends a warm wave up and down my spine when I hear her do that (not that I get much of a chance anymore - there's not a lot of call for it in Walla Walla.)

I worked at Lewis & Clark College in Portland, JoAnn worked for a high-tech firm in Vancouver. Our first apartment together on Hayden Island overlooked the Columbia River. In the winter, we watched the Christmas ships from our deck. In the summer, we watched the Ft. Vancouver fireworks explode right above our heads. On Sunday mornings we would ride our motorcycles to Starbucks on 23rd and we would sit outside and watch the people go by. We went to school here (a lot of school), we walked Hawthorne and Broadway, we bought our first home in Vancouver on Algona Drive, went to parks and plays and we got married on Mt. Hood at Timberline Lodge, out on the back patio with the mountain looming above us.

No wonder it feels like home here.

Katie was born in Portland, at Providence Medical Center over near the Hollywood district. When we toured Providence while JoAnn was pregnant with Katie, they mentioned the NICU at Emanuel. Carter was born here, at Emanuel. We toured Labor and Delivery back then, almost five years ago, and I still remember going past the NICU and thinking, "God, I hope I never have to go in there."

Last week, as I left the NICU, I had to slip through a tour group. Expectant mom's holding their tummies, the father's standing beside them, but always slightly behind too, with a supporting hand touching their wife.

"This is the Neonatal Intensive Care Unit," the nurse said.

I could see the moms to be and the dads to be staring blankly at me, trying not to think about this ragged man with the tired eyes that bowed his head as he ducked past, trying not to think the thought we all hold at that moment, when someone first shows you the NICU and says those words.

"Hopefully, you won't need that."

I could see it in their faces, the "God, I hope we never need that."

All I could think was, "If you ever do, you'll thank God it's here."

GI results

Nanette's upper GI showed a clear path from stomach to colon - no blockage. Yesterday she spent long periods awake and alert in her big bed. She's looking more and more like her mother every day, and she coos like a dove settling into a new nest. She'd rather suck on her mittens than her binky, and I think that all the nurses have fallen in love with her.

But, she's running a fever and her white blood cell count is up. After some additional tests, Dr. Jay and his people (there a whole cadre of them) have decided that Nanette's pic line needs to be replaced. The pic line is the peripheral catheter, in this case, the IJ that runs into her neck. It is probably getting infected. After much debate and several attempts, as of Friday night they had not been able to get a new line in. Nanette's been poked and prodded so much that her veins just wont open up for another line (it's about the size of a thin piece of cooked spaghetti.) Besides her morphine and antibiotics, this is the line that feeds her (by the way, she's at 5,725 grams now, which is about 14 pounds - although some of that is still fluid that needs to be eliminated.)

Infection and nutrition are going to be challenges for a while. If they can't get a pic line in, they may have to insert a Broviac line. The Broviac is a silicone rubber catheter that runs straight to the juglar vein and then to the heart. It lays under the skin and emerges from baby somewhere along the chest. That way the dressing on the wound is nowhere close to the entry point into the bloodstream. It is a surgical procedure to insert a Broviac. We're hoping they get a pic line in.

Upper GI

No official update yet, but the nurse on duty received a
call earlier from the resident surgeon, Dr. Lattin, who gave a
med order for Nanette and said that the upper
GI looked good and Nanette should resume feedings
tomorrow.

In other news, Nanette likes her big girl bed and loves being held by her momma!

More vomit

According to JoAnn, our baby is still throwing up her food. Apparently, there was something in her vomit that got Dr. Jay going, because he ordered an upper and lower GI.

I'll know more tomorrow when I check in, but if the vomit has green in it, it could be bilious, indicating an intestinal blockage. That's entirely possible, especially in a kid whose intestines never got settled in to the correct place. They start out in the chest cavitiy normally, but move into the abdomen at about 8-10 weeks gestation. After that, there are several points of attachment that secure the small intestines to the inside of the abdomen. In some babies, like Nanette, who don't have those anchor points, the bowel can get twisted up. That's what happened to our little friend Joshua. He lost two-thirds of his small intestines because of that, and now he has "short gut" syndrome, which means that he can't digest food very well.

I assume the Upper GI will be a barium drink (barium shows up white on an x-ray) although I don't think they can use barium if there is any blockage. The lower GI is the same, except it covers the colon and it might be done using floroscopy (the motion-picture version of x-ray.) Also, with the lower GI procedure, the barium goes in through the rectum. Not that poor little Nanette cares. She's been poked and prodded and x-rayed more than most adults.

Anyway, Nanette is on close watch again. Keep her in your prayers.

Dogwoods

Dear JoAnn,

Your cell battery must be dead. I miss hearing from you during the day, even if it is just a "no news" call. I'll give you an update from our end of the world.

The pink dogwoods are in bloom now. On the way home for lunch I walked under one over on Palouse that had a branch of white dogwood grafted to the trunk. The whole tree looked like a big peppermint candy. Everything turned green and pink and white between the time we went in to St. Mary's and today. On the walk to the bus in the morning the sun beats warm on our shoulders, but the shadows stay chilly until noon. If Grampa hadn't mowed and trimmed and neatened up around here, our yard would have looked like Jumanji. He certainly expresses his giftedness in the way he works outdoors.

I left the office window open last weekend - the upstairs gets hot now during the day. The wind blew all my loose papers around and now there is a fine layer of gritty dust on the desk. We had a brown dust storm day this week, maybe it was Tuesday. Wreaks havoc with my contacts.

I went over to the Walla Walla Suites last night to hear Raquel, but she was sick. The kids and I went for a walkabout instead. We hiked over to the little Japanese garden at Whitman and the kids skipped across the stream on the rocks for a while. I got them orange creme sodas at the Reid Center and I had one of those supergreen drinks. After baths we snuggled up and read comic books that I got over at North Star Comics next to Ze'Bagel. Did you know that Ze'Bagel is all closed up and the space is for lease?

We finally got the cards you sent. They arrived in the mail today. Isn't that ironic? But we really needed them. We miss you terribly. We'll hit the road early tomorrow, pick up Gordon in Milton-Freewater and then rumble on down the interstate. I can almost bet on a stop in Boardman and a stop in The Dalles. Hopefully we'll roll in at about noon.

We love you, miss you, need you, adore you...XOXOXOXOX!!!!

Throwing up

Nanette drank milk today. Her first feeding went well, but she threw up most of the next two feedings. That's not unexpected, considering what she's been through.

The surgeon continues to monitor her chest - she's still leaking a bit of residual stool and other gross stuff from one of the incisions. That will have to stop before Nanette gets to lose the two chest tubes (unless she yanks them out herself.) The good news is that there's no sign of new infection. No fever. Blood counts are fine. No fountains of green and yellow slime shooting from her body.

JoAnn took Nan's mittens off for a while today to hold her little hand, but as soon as Jo stepped away to let the doctors crowd around, Nanette grabbed her IV line (the one that is stitched into her neck) and held on till her fingers turned white. You never know what Nanette is going to do when she gets hold of something.

Even with the chest tubes still in, her morphine dose is down by half. JoAnn says Nanijo spent a lot of the day gazing at her mom.

That's what I'd be doing right now, if I was there.

(Love ya, Jo. Miss ya. See you Friday morning!)

par oneri

Latin for "equal to the burden."

Nanette has shed all repiratory assistance! The respiratory therapist pulled the vent tubes out on Sunday afternoon. They skipped CPAP and went straight to simple cannulas with no added oxygen. This morning even the cannulas are gone. She's still leaking a bit of gross stuff out of the original hole (the doctors call it "presenting") so she still has two chest tubes for drainage, but there's not much coming out of those.

What a trooper! Kids are so strong and resilient. Nanette reminds me of one of those action movie stars - they get shot and beat up and end up in the hospital and then bounce right up and rip out the IVs and tubes and wires so they can run out the front door and get back into the chase.

By the way, JoAnn ran into Audrey's mom, Rose. After surgery, Audrey moved upstairs to PICU (pediatric intensive care unit.) That's where the post-op cardiac equipment is. She's still in critical condition, but at least we know where she is and we're sending healing thoughts and prayers up that way too.

Privacy

The morning came on bright and sunny. JoAnn wandered into the dining hall with the kids in tow. They all looked rested and happy and well. I got them started on hot chocolate and corn flakes and then it was eight so I went up to see Nanette. She's stable and quiet. An unremarkable night. When I held her hand, she opened her eyes a bit and I think she winked at me. The on-call doctor listened to her tummy and her chest and prescribed a daily goal of "no changes - let's have a boring day." Sounds good to me.

I glanced over toward Ducky 3, where we met Rose and Derek and their little girl Audrey. Audrey left at 7 yesterday morning for major heart surgery. Rose said that normally the doctor would wait till Audrey was 3 or 4 months old before trying to fix the valves and holes in her heart, but her infant lungs were collapsing, forcing the surgery immediately. With JoAnn under the weather and because of my own exaustion, I didn't get to check back with Derek and Rose yesterday. But my heart lifted when I saw the wheels of an incubator peeking out from under the curtain at Ducky 3. I turned to the nurse and said, "It looks like Audrey is back."

The nurse glanced over her shoulder.

"Oh, no," she said. "That's a new baby. She won't be back here again."

What does that mean - 'she won't be back here again...'? Is there somewhere else that babies go after major surgery?

I couldn't ask. Partly because I know that the nurses have to follow the privacy laws. I know HIPPA; I was working in the health care field when the law passed. But as a freelance writer, I usually ask anyway. I'm curious. I want details. I am compelled to share, to inform. Maybe one of the reasons we feel so isolated nowadays is because we don't share enough. We don't share our stories. We don't share how we feel. We are a nation of private lives.

But maybe I didn't ask because I just didn't want to know.

Babies come and go in the NICU. That's the way it is. It's just a fractal of our lives out in the "real world." We are all here for a short time, like shadows, and life is a struggle. And in that struggle, we share a few moments of happiness. We meet friends, and then we travel again.

Audrey stays in my heart. She may be gone from the Ducky 3, but her spirit still infuses the NICU, just like the spirits of all the babies that have come before. It is a spiritual place.

Nanette rests. Silus improves. Ana struggles.

And Audrey?

She won't be back here again.

Portland

Saturday afternoon brought a cold, heavy rain that chased everyone inside. Water poured from the sides of the gutters and ran down Commercial street in a torrent that looked wide enough and deep enough for a white-water adventure. Carter took the gray day in stride - he loves experimenting with the Nintendo games. Katie snuggled down on the couch with JoAnn and watched the Wizard of Oz for a while, but dinner served up right when Dorothy melted the wicked witch of the west. We ate barbecue ribs and potatoes and cheesecake.

JoAnn paid the price for sitting up all Thursday night with Nan. She came down with something and spent the whole day yesterday (Saturday) in bed, mostly sleeping. She looked forward to taking the kids to Saturday Market, and to the park to play, and to read books and maybe watch a movie. Just to be a regular family again. She couldn't even get up to see Nanette - a combination of too tired and too sick. You have to be symptom free to get into the NICU. Unless you're a newborn on the brink of life.

Josie sat vigil with Nanette yesterday. I sat down on the other bed in our room and dozed off while JoAnn slept. Gordon watched the kids.

It sounds like an ordinary day when I write about it, but there's nothing ordinary here. We want our girls to come home. (Although I might have to buy a Nintendo in order to lure Carter back to Walla Walla.)

Nanette's vital signs and blood gases are "trending in the right direction." That means she's doing fine. (Comparatively speaking.) This latest surgery will keep our little girl here through Mother's Day at least. Maybe longer. There's always the chance of more complications. And Dr. Jay wants to see her monthly for the rest of the year, and then semi-annually and then annually after that.

I feel as if I have to end this post with something dramatic and pointed and wise, but I'm tired. I'm tired of being here. Tired of not being able to hold my baby. Tired of watching the clock from 7 to 8. Tired of the green band around my wrist. Tired of waiting, tired of worrying, tired of being torn between two towns so far apart. I'm tired of not sleeping well at night.

I know I'm whining. I know I'm blessed and I'm grateful. Grateful for JoAnn and Nanette and Katie and Carter and the grammas and grampas and aunts and uncles that love us and help us. Grateful for the hospitals and the doctors and the nurses and the Ronald McDonald House. Grateful for the e-mails and especially for the prayers that so vividly give Nanette strength and courage.

But I'm tired too. No shame in that. We're all tired. Tired and grateful.

Peaks and valleys

Life is full of peaks and valleys.

I let the kids sleep in this morning while I got the van loaded. I showered and put on a nice shirt and jeans and had a mocha. We ate pancakes and then rolled out of town at a leisurely pace.

I kept my phone turned on and clipped to the visor just above my head, but the gorge is full of dead zones. Some are long and expected, like the winding drive along the Columbia between Touchet and Umatilla. Some are shorter and you might never know, unless you missed a call at 11:34 that buzzed in as a voice mail several minutes later. I pulled over at Boardman and bought the kids milkshakes while I checked my phone.

1 missed call. 1 voice mail. JoAnn.

I don't remember all the words, they spilled out like marbles from a bag, but I remember the tone. JoAnn rarely chokes up. She's the most rock solid person I know. She's grounded, spiritual, trusting and confident. So when her voice cracked as she said "They're taking Nanette in for surgery..." my heart hit the front of my chest.

A tiny bit of Nanette's colon got stuck to her diaphragm. Maybe it caught in a stitch, or maybe it got pinched in between the two edges. Thoroscopic surgery is far less invasive than the traditional lateral cut along the lower edge of the diaphram, but it does leave the underside of the repair hidden from the surgeon's view. Over the past week, as Nanette grew stronger, weaning herself off her respirator and even pulling out her pic line, the tiny piece of colon pinched in the suture withered and died. A tiny hole appeared, not just in the colon, but in the diaphragm as well. Tiny, but enough.

As Nanette ate, her intestines filled with food and the friendly flora that helps us digest. This is part of the natural process of becoming a human being. But those bacteria that nestle quietly in the bowels are unwelcome in the rest of the body. As the hole opened between her bowels and her chest, fecal matter spilled into the space just below her left lung.

Thursday night, Nanette tossed and turned. JoAnn sat up with her, watching her through several small fevers. The morning shift came in and nurse Mary noticed a bit of greenish ooze from one of the surgical penetration points. She turned Nanette and found a pool of yellow fluid on the sheets and a lump on Nanette's back. Dr. Valerie Newman, the neonatologist on duty, prodded the lump with her finger and fecal matter and infection gushed out. Everything happened fast after that, and I got the frantic voice mail from JoAnn.

By the time I pulled onto Graham drive, surgery was done but Nanette was not yet back in the NICU. I parked at the Ronald McDonald House and towed the kids up the walk. In just a week, the azaleas had burst into fiery plumes of fuscia, and the trees glimmered light green against the taupe brick walls of Emanuel. Carter tugged at my arm, eager to see his mom, Katie's flip-flops slapped on the pavement. My shirt stuck to my back.

We met Josie and Gordon and JoAnn in the waiting room, and Gramma and Grampa Cooke joined us a few minutes later. The kids hugged momma and we took them potty and Carter jumped around till Gramma Cooke took him upstairs to the playroom on 3. Chaos mixed with waiting.

Dr. Sanjay Krishnaswami found us at about 3:30. He very patiently explained (at least twice) what had happened and how he had fixed it. They'd gone back in through the original thoroscopic entry points and had cleaned out the infection by scraping and flushing with saline. In order to keep the area drained, they'd installed two chest tubes. Nanette just got rid of her painful chest tube a few days ago, now she has two more. That first one was to evacuate excess air from her chest cavity. These two suck out any fluids and infection.

Dr. Jay made a small incision in Nanette's belly and separated the colon from the diaphragm. He pulled the injured loop of colon out of her body so he could work on it. The edges of the hole in the colon were ragged and dead, so that piece had to be cut away. He sewed the two fresh ends back together. I can't imagine how painstaking it must be to sew on something that can't be any larger than a piece of macaroni.

He also had to go back in and repair the hole in the diaphragm, and he mentioned that while he was working on the underside, he made a few additional stitches to shore up the original repair.

This all puts us clear back to last Friday, with Nanette back on a respirator (tube down her throat,) a catheter and foley bag to monitor urine output, tons of morphine to control pain and thrashing around, an IV in her neck, an NG tube to keep her stomach pumped, and chest tubes. Plus, now she has this infection and three different kinds of antibiotics, plus a bag of lactated ringers (it's not ringers lactate, like you hear in the movies, and by the way, no one ever says "stat.)

Also, Nanette is now getting an infusion of 68ccs of A negative (about the size of a kid's juice bag, but full of red blood.) It's almost funny to see all the stuff they're pouring into her. Almost.

There's no way that JoAnn and Nanette will be home for Mother's Day. We'll miss the balloon stampede and the flapjack breakfast. Carter likes the way the flames shoot out of the propane burners. Katie likes the colors and the way the balloons float up like giant bubbles.

Katie nestled into my lap after dinner. She's sharp enough to understand that Nanette is getting all the attention. It's bad enough to have a new baby - you know the kids are going to feel slighted. But now everything is about Nanette. And it's not just us. It's Gramma Josie and papa and Gramma and Grampa Cooke. Everything revolves around Nanette. I can tell Katie that she's important, but like I say, she's sharp. Actions speak louder than words. I don't know how to help her understand why mom doesn't come home. I don't know how to help her understand why I'm going to spend the night watching Nanette. There's no easy way to be a mom or a dad. But I know this; I have more love in my heart for these four people than ever, and it's doesn't divide evenly or parcel out or allocate - it's more like the parachutes that blow off a dandelion stem. It billows out, it makes more, it fills the spaces and nooks and crannies and increases and increases. Nanette makes me love Katie and Carter more. Parents know this. Love is not a word that goes with "or." Love is a word that goes with "and."

I forgot to tell JoAnn that Kelly Walsh died last night. I don't know why it struck me so hard, except that the day before, he swung his big Sweet Onion Sausage truck around in front of me and I waved at him and he smiled at me. The next day, he smiled at me from the front page of the UB, dead from a heart attack.

Peaks and valleys.

p.s. Our little friend Silus has a blood infection and an infection in his lungs. Joshua isn't eating enough, so he's going to have to go home with a tube into his stomach and an IV in his neck. Baby Audrey just arrived last Saturday from Labor & Delivery with a serious heart condition and her lungs are failing, so she'll be going in for major surgery tomorrow morning at 7AM. If you pray, and if you get a moment, please send a little whisper for these children too.

May God be with you in all things,

j

Superchick

Nanette improves daily. Yesterday she started drinking from a bottle every two hours. Just before each feeding, the nurses aspirate (suck) the remainder of the prior feeding in order to see if her digestion is working. Poor girl, no wonder she's in a hurry to get out of there.





She somehow removed her pic line. The report was that it "just fell out," but I think that Nanette pulled it out. The pic line ran from a blood vessel in her heel clear up to her heart so that she could receive nutrients directly into her blood stream from an IV drip.



It has to be all the prayers - it's extraordinary the way she keeps throwing off the interventions. She's healing at a miraculous pace!

We can't wait to get mom and Nanette home.

You've gotta love that hairdo!

According to Carter, "She's cuter than a baby chick!"


At last my love has come along
My lonely days are over
And life is like a song
Ohh yeah yeah
At last
The skies above are blue
My heart was wrapped up in clover
The night I looked at you

I found a dream, that I could speak to
A dream that I can call my own
I found a thrill to press my cheek to
A thrill that I have never known

Ohh yeah yeah

You smile, you smile
Oh and then the spell was cast
And here we are in heaven
For you are mine at last

I found a dream, that I could speak to
A dream that I can call my own
I found a thrill to press my cheek to
A thrill that I have never known

Ohh yeah yeah

You smile, you smile
Oh and then the spell was cast
And here we are in heaven
For you are mine at last

At last... at last

Skin

They call it Kangaroo Care. The concept is simple and ancient. Place the baby skin to skin on mom's chest, with baby's ear against mom's heart.

JoAnn has always had power in her skin. I remember the first time I held her hand, walking down Southwest Broadway a cool October evening with the lights of Portland towering above us and floating around us. I reached out and took her fingers in mine, and then our palms met, and I felt a flow of healing energy. I couldn't describe it at the time, but now, after these eleven and a half years, I know it. She's healed me in ways she doesn't even realize. Maybe that's fodder for some other post. Anyway, I think that Nanette has some of that same gift. She might even have more of it, if that's possible. We'll all have to wait and see.

If you could see energy flow, I'll bet the NICU was alive with it when the nurses placed Nanette's perfect skin against JoAnn's chest. Jo said that Nanette was fussy, and that the nurses were talking about putting Nan back on Morphine and maybe even the respirator if she couldn't get settled down.

She snuggled up to JoAnn, locked her dark eyes on her mom for while, and then drifted down into a deep, peaceful sleep. That's all she wanted. To see beauty, to feel skin against skin, to hear the beat of life, to be wrapped in love.

It seems so logical, and yet for a long time hospitals wouldn't allow it. A couple of doctors in Bogota, Columbia, back in 1983, struggling with a 70% morbidity rate on their premature babies and a horrific lack of funding said "what the heck, can't get any worse," and so they plopped the babies down with their moms and guess what? The morbidity rate dropped to 30%.

"Duh," as Katie would say.

JoAnn heals Nanette, and Nanette heals JoAnn. And Nanette becomes a Joey...

It's hard not being there. The kids and I rattle around like Keystone Cops in slow motion. Even Carter seems subdued (which means that you can actually keep up with him some of the time.) We went to visit the new fire station last night with his preschool class and the EMS tech pulled out a little black clamp and put it on Carter's finger. It displayed his heart rate and oxygen saturation.

Carter wasn't impressed. Nanette's heart rate and SATS are in color on a big screen.

There are some cool changes going on too. At one point on the way home from Portland I glanced back and saw Katie and Carter holding hands. This morning, Katie took the last of the corn flakes and Carter started crying. I poured him Cheerios and he calmed down, but when I stepped out of the room, Katie traded bowls with him.

Every morning the kids ask how long it is till Friday. That's the day we go back to Portland. Back to our JoAnn. Back to Nanette.

Compared to what she's been through, Nanette's challenges may seem minor, but she's still in level 3 intensive care. Level 2 is called "feeders and growers"; those are the babies getting ready to graduate. There is no level 1 - that would just be regular Labor and Delivery. Our little girl faces at least three big hurdles now - morphine withdrawal, breathing and eating.

A baby can develop a tolerance for morphine in just five days (doctors say that alcoholics have a "tolerance" for alcohol.) It can take up to 21 days to taper them off. Morphine withdrawal can cause agitation, sleep-wake abnormalities, feeding difficulties, weight loss and seizures.

Maybe when I get back to Portland I'll start a weekly 12-step meeting for all the NICU babies. We'll wheel them all into a seedy, smoky back room and make thick coffee and tell stories of strength, hope and inspiration. Crying is okay, but no cussing or foul language and no poopy diapers.

Fortunately, Nanette's breathing improves every day. She's off C-PAP now and hopefully she'll stay on just a bit of oxygen through her nose.

Feeding might be the biggest jump she has to make. Kids with CDH often end up with a bit of acid reflux. Tomorrow she'll get a feeding tube stuck down her nose so she can start on a dribble of colostrum (JoAnn dutifully froze it right from the start, so Nanette will have an ice cream habit like mine in addition to her morphine habit.) If she can keep the milk down for a day or two the next step is to get her sucking on a bottle and then, hopefully, she'll breast feed. And then, we're bringing her home.

But for now, the healing continues with skin.

Dear JoAnn

My love.

I know that you like to check this blog just like everyone else, so I'm posting this personal message here for everyone to see and read. I'm not ashamed or embarrassed in any way to share publicly how I feel about you (of course, I'm going to leave out some of the mushy stuff - watch your e-mail!)

It was great to see Nanette move to the butterfly section. With her chest tube out she's going to heal fast and I'll bet you'll be able to hold her in your arms tomorrow.

That last walk from the NICU to the Ronald McDonald House was tough. I felt as if I was leaving a safe place. I've been there so long, and yet it still feels like April 11th to me sometimes. I know every picture on the wall between the NICU and the elevator. I can hit the buttons without looking. The stain on the carpet in the elevator on the right happened a few nights ago (I think someone must have thrown up there.) We've seen the atrium go from barren to filled with Easter decorations to barren again and then to the job fair with all the high school kids chatting and bustling and then back to barren. We've heard our footsteps echo off those high walls and glass ceilings a thousand times, and a thousand times we've crossed that intersection where Graham meets Commercial and walked down that hill, across the oncology parking lot, past the azaleas still hibernating and across the pavers to the front door of the House. It's almost like a whole lifetime passed in these twelve days. I guess it is a lifetime for Nanette.

Katie and Carter and I stopped only twice, in The Dalles and then again in Umatilla. We got home at about six and then walked to the park to stretch our legs. The kids refused to get back in the van after driving for five hours, but Tabitha and Madaline volunteered to watch them while I went to the store.

I'd like to tell you that we're all fine, but I won't lie. We miss you. I tucked Carter in at about eight and then stuck my head in to check on Katie. She wasn't in her bed. I found her on the floor. She said she didn't want to be comfortable because she was mad at me. I got her in bed and she started crying. She missed you so bad she couldn't stop sobbing. I calmed her down and we went through The Amazing Body book for a while. I couldn't find a picture of the diaphragm, but Katie found it and pointed it out to me.

"Duh," she said. How can a six year old read a word like diaphragm? I can hardly spell it.

By the time I got her settled in, Carter was conked out.

I've been up doing nothing. I ate chips and ice cream for dinner (even though I bought carrot sticks and a pork loin at Albertsons.) Sorry about that. I know I promised to eat healthy. Why is it always more lonely to be home? Shouldn't home be the sanctuary? The safe place? Or, does the empty shell of home just accentuate the missing piece. I can't bring myself to turn down the covers on our bed, and looking in the nursery just makes my heart ache. I long to hear Nanette's little cry coming from that room. "Bah, bah, bah." It makes me smile just to think about it. She sounds like a litte lamb. I wonder if she'll really howl once her throat is better and her lungs are strong, or if she'll always just have that sweet bleating sound.

Ah, well. It will be a horrible week. I know that is a negative attitude, but I might as well face it. You are the heart of this family.

I'm really glad Josie is back in town. She'll be much help, and love and support continues to pour in from everywhere, like the way Dan and Tabitha helped with the lawn and the kids. But, still there is nothing that can replace having you here.

[here is where the gushy, mushy love stuff has been omitted]

We love you. We love Nanette. Our prayers are with you both. Be strong there, and we'll be strong here. The three of us make a good team. We somehow managed to make it through last Easter's tribulations with Grams. Besides, we have lots of chips and ice cream. (Um, actually, I think I ate most of the ice cream...)

It's almost tomorrow, so I better post this and get to bed.

May the day bring you blessings, love, peace and health

Joe, Katie and Carter

Setbacks

An exciting day for Nanette. She came off the respirator at about 1:30 this afternoon. In order to "extubate," she had to come off morphine. It was great to hear her voice. She's a strong girl with a lot of spunk, but she still carries a lot of pain from her surgery. The tube that helps remove excess air from her left chest cavity hurts too. She cried enough to get a tummy full of gas. All that pain set her back. Her heart rate jumped up to 200bpm and her respiratory rate topped 100. The respiratory therapist on duty switched her to a machine called CPAP - continuous positive airway pressure - the same machine used to treat sleep apnea. It blows oxygen in through the nose in order to keep the air passages open and clear, and the lungs full. With that and a dose of morphine, Nanette finally settled into a manageable state of agitation.

Gramma and Grampa Cooke brought the kids down this afternoon while all this was going on, so I spend the evening with Katie and Carter. JoAnn put them to bed while I walked up to see Nanette. I settled in next to her for a while, singing and holding her. The CPAP annoys her, but she's already learned how to cheat on it. She opens her lips just enough to let the extra air slip by. The nurse knows she's cheating, but as long as her SATS look good and her blood gas tests come back positive, they're cutting her some slack. She's a smart girl. Cunning at least.

Every once in a while she closes her mouth and the air pressure sets her off again. Singing seems to help. JoAnn sings "Hush little baby, don't say a word, Momma's gonna buy you a mocking bird..." JoAnn knows all the words and they're magical even though they don't all make sense to us adults. I get it all jumbled up, so I tried on of Katie's favorites.

Hush a bye
don't you cry
go to sleep my little baby.
When you wake
you will see
all the pretty little ponies.

Oaks and bays
Dapples and grays
Coach and six
of little ponies.

Nanette's heart rate came down on that one. Carter's song was always Alicia Keyes singing "I keep on falling, in and out, of love, with you..." Nanette just kind of shrugged that one off, so I stuck with Ponies. I sang soft and low, with my head down close to hers. Her breath tickled my eyes and she squeezed my hand. She doesn't smell like baby. More like astringent. She's got a new tube down into her stomach to remove bile, but her catheter is gone so she's wetting diapers again. Poor little girl. All she's every know is tubes and wires, tubes and wires. Tubes up her nose, tubes in her side, tubes in her arms, tubes in her mouth. Two wires on her chest monitor her heart and her breathing and there's a gold, heart-shaped electrode on her right side just above her hip that she likes to pick at with her little fingers.

We're hoping for improvement tomorrow. If her blood gases take a downturn, she'll have to go back on the respirator. That's bad because the tubes irritate her throat, and every day riding the vent increases the chance of infection or other complications.

Two steps forward, one step back.

Still better than the alternative.

That's all I have time for tonight. JoAnn is waiting for me to relieve her so that she can go up and join Nanette and Angie.

Miracles

Miracles happen every day here.

Nanette's right lung has filled its cavity. Her heart is moving back toward the center and her left lung is at about 75%, which is a miracle for this condition, especially so soon after surgery. The doctors are scratching their heads a bit.

But she's not the only happy story going on right now.

Ana arrived three months early. She weighed in at 710 grams - just over a pound and a half, which is about the size and weight of a carton of a dozen eggs. Doctors told her dad, Dustin, that Ana probably wouldn't make it through the first night. Here she is over two weeks later still beating the odds.

Joshua is finally feeding from a bottle, although he's only taking in about a teaspoon of milk so far.

Silas is off the ECMO circuit and his lungs are starting to work. He still has a long way to go, but he's making it.

In Nanette, we're still watching for signs of pulmonary hypertension, but since she made it through the first twenty-four hours without additional oxygen and since her blood gases are normal, it looks like she's mostly past that danger. She did come down with a bit of a fever today, and as the nurses wean her off the morphine, she's grimacing and gumming the respirator tube.

Even though she's doing better, she's still "riding the vent" as they say. The morphine suppresses the respiratory system, so she can't come off the ventilator until she's off the morphine. She's doing well though, breathing mostly on her own. The respirator is set on control assist, which means that it breathes with her to make sure that she gets enough oxygen.

We heard a code called over the PA today and it made me shudder. That's all they say, just "Code in room 3324." The night Nanette was born, we were in a code. Not code red, or code yellow. Just code.

There was a bit of a lull in the NICU over the past few days, but it's filling up again. Most of the cubicles are premature babies of all shapes and colors and sizes. One baby cried today, so soft and raspy that I thought there was a large bee loose in the unit. Later in the afternoon another baby wailed for a while, sounding like the call of a duck across a foggy lake. Those are good sounds, even though they're rare and they're not the big bellow of a full-term baby.

Other than me and Dr. Kirby, there are only two nurses who heard Nanette's little voice that one time, on April 11th at about 8:33PM. Five minutes after she emerged. She let out one gasping whimper before the pediatriction called a code. Even so, there's nothing like the first cry of a newborn baby. It fills you with hope.

The kids are coming down tomorrow to spend the night, and then on Sunday we'll head home. Angie re-arranged her flight schedule so that she can stay with Nanette and JoAnn till next Friday. Josie and I will probably bring the kids back here over next weekend to see sis and mom, and then Josie will stay with JoAnn while Katie and Carter and I head back to Walla Walla. Gramma Cooke will probably come back with us to help me wrangle the day-to-day routine. Sounds complicated. Most likely it will change ten times before next weekend ever gets here.

As much as I want to tuck the kids into their own beds, the thought of going home scares me. I hate to think about our family being apart any longer, but that's the way it will be for at least the next two weeks, maybe more.

If all goes well, they may be able to remove the respirator on Sunday and maybe we'll get to hear Nanette croon a bit. I'd like to hear that sweet sound once more before I go home.

Not a very exciting day, but that's a good day around here.

Surgery update

Merv, the hospital chaplain, came by at 11AM and led us in a little prayerful blessing to prepare Nanette for surgery today. JoAnn and I hovered over our little girl for a while after that. Nanette wrapped her fingers around Jo's right pinky while JoAnn rested her left hand like a feather on Nan's curly blond hair. I stood across from JoAnn and held my palm over Nanette's chest. Ever since that first full night, the Wednesday before last, when I just sat there in her presence, I've felt a distinct energy come from her. A healing energy. My intention today was to send her some healing.

I sent her a little message, just in my own mind to hers.

"I'll take your place if you want me to," I thought. "You can slip inside my head, and I'll slip into yours. You can sit here and wait. And then, when your body is repaired, we'll switch back."

I got a response. Maybe it was just my imagination, but it was a response nonetheless. It felt like it came from Nanette, strange as that sounds.

"No dad," she said. "You have your journey, and I have mine."

I felt her wisdom, and I remembered at the OMSI display that one of the wall plaques said that when a female fetus is about 28 weeks old, still in the womb, she has every ovum cell already formed in her body - over a million of them. Only about 400,000 survive till puberty, and maybe 500 or so actually turn into viable ovum. And, of course, only a few become children. When I read that the other day, it struck me that these cells might carry ancient wisdom, passed down from grandmother to mother. When JoAnn was born, Nanette already existed within her, waiting to be completed. The thought kind of freaked me out and I couldn't really get my arms around it, but it still haunts me.

Anyway, I told Nanette that I loved her, and she said "I love you too, dad," and then I had to pull my hand away. I wanted to tell JoAnn, but I couldn't say the words. They stopped up in my throat. I can only write them. Don't ever ask me to tell this part of the story, because I can't. It sounds nutty, but it felt real, and it felt spiritual and that's all that matters to me.

The nurse told us that the prior surgery was over, and that Nanette would probably go down at about 11:30, so we waited.



We're used to waiting. The anesthesiologist, Dr. Finley, showed up at about 1:30PM. Her slender fingers danced over all the pic lines and heparin locks as she made a final check of Nanette's connections. At 1:45PM the nurses pulled the power plugs out of the walls and Ladybug One wheeled off to surgery.

Waiting is what we do here. The sun came out and we waited outside. A nurse came by and gave us a quick update - Nanette's doing well, they've pushed her bowels back into her belly and they've started sewing up the hole. No patch needed.

Cousin Lamar and his wife Tracey, down in Medford, have a friend who's a nurse in the surgery suite, and she ran up and gave us an update too. Dr. Finley seems happy with the way Nanette is handling the surgery. All is going well.

The sun went behind the buildings and a cloud cover moved in, so we waited inside. I took a walk down the hall and got a mocha. The wall of windows outside the NICU bear the names of babies born at Emanuel, etched into the glass, along with some poems and quotes, like "in the moment that a baby is born, the world changes just a little bit." The opposite wall sports poster-sized pictures of grown up NICU graduates with little insets of them at birth, like Mike, 35 weeks, 2520 grams. He was the first ECMO baby, fifteen years ago. My kids glommed onto that one, and Carter kept insisting that every dark-haired teenage guy he saw was Mike. Walking up and down the hall fills me with hope and courage.

At about 4:15 we got a message that Nanette would be back up in ten minutes, but, as you may have guessed by now, hospital time is different than the time we use to plan our TV schedules and business meetings. We understand that, but still, we sat there staring at the empty bay where Ladybug One belonged, our eyes jumping every time someone walked by. Four-thirty turned to four-forty-five. Still no Nanette. At just about five, the air changed and I could feel my heart leap. Maybe it was the quiet squeak of the wheels, or the patter of a dozen feet, or just the way everyone out in the main part of Level 3 stopped to look, but somehow we knew she was back.

Ladybug One returned dragging a whole new array of tubes and contraptions.

Dr. Krishnaswami showed us pictures of Nanette's bowels and spleen before the procedure and then the empty left chest cavity with the sutured diaphragm after. The anesthesiologist, Dr. Finley, got her tucked in with her new meds and the nurses fussed with her respirator and IV lines for an hour and a half. For a 9 day old infant with a severe congenital challenge who just underwent major surgery, she's doing well.

We stayed till the seven o'clock shift change. Angie took off from Florida to be here with us, but she's right in the middle of her exams for her master's degree in nursing, so she's going to sit up with Nanette tonight and I guess they'll work together on finals. I'll get JoAnn tucked in for a good night's rest. God knows, she needs it. The next three or four days will be watching and waiting. Watching for breathing problems. Watching for problems with the bowels and spleen. Watching, watching watching.

And waiting.

Calm before the storm

Nanette woke up several times yesterday. Even under
sedation, her dark eyes search and question. It's
hard to watch her struggle against all the tubes and
wires and the effect of the drugs. She's
uncomfortable and she wants to be picked up and held.
You can see it in the way she furrows her little brow
and clenches her fingers and toes. Even though she
seemed a bit anxious yesterday, her vital stats stayed
relatively level, so the surgery looks like a go for
this afternoon.

I wish the kids could have stayed another day. Katie
helped me make breakfast yesterday morning - she mixed
up pancake batter (Carter's favorite) and I made
scrambled eggs (Katie's favorite.) After breakfast we
all went up and saw Nanette. On the way back to the
House, we ran into Josie and Angie have coffee so we
joined them for some hot chocolate and the the kids
and I went downtown. We parked near Morrison Street
and walked clear across town, from 4th Avenue to 11th
and then up to the Paramount where we found a
McDonalds. From there, we went back to 11th and
caught the trolley. A nice woman gave up her seat for
us and asked us where we were going.

"Where does this trolley go?" I asked.

"The Pearl District and then 23rd," she said.

"Then that's where we're going," I replied.

We got off at the Pearl District because that was the
end of Fareless Square (which isn't a square at all.)
We caught the return trolley and rode it all the way
to PSU and then the waterfront. The kids loved it.
What could be more fun on a sunny, warm afternoon than
to hang out in the shade of towering buildings amidst
all the students with their pierced lips and brows and
the college professors and the suits and the assorted
city characters, like the blind gentleman with his two
dogs and the guy with a red golf ball bag and a set of
clubs that got on near a church and got off down near
the concert hall and I expected him to say "just
playing through."

I like to imagine Nanette four years from now, joining
us on one of our "walkabouts," with strong legs and a
quirky sense of humor like Carter's, and with long
blond hair like Katie's, tied back with a piece of
blue ribbon that keeps falling out because her hair is
so fine. She picks it up and hands it to me and
stares at me with big blue eyes that she gets from me
and JoAnn.

We walked back along the river, dodging rollerbladers
and bicycles and joggers. Carter finally sat down in
the grass and fell backwards, refusing to go on.
Katie hung on my arm. But we roused Carter and
finally found the car right where we left it. The
kids collapsed into their seats. But even winding
down the inside of the parking structure was fun for
the them. They love the little things, like fountains
and dogs and sunshine and shade and the click of the
trolley wheels on the metal tracks.

Aunt Lee Anne and Uncle Eric met us at the House with
Gramma Cooke and we gave them the standard tour.
While I moved the booster seats from the van to Lee
Anne's Subaru, the kids put on a play: Dinosaur and
Unicorn. The synopsis is that a green dinosaur
marries a winged unicorn and they have a baby (a crazy
puff of multicolored fur that matches the unicorn's
mane.) They're great at improv, and there's a box of
wonderful costumes in the playroom here.

As Lee Anne backed up her car, with the kids and
gramma all loaded in the back seat, I could see Carter
with his head in his hands and his face scrunched
tight. Katie just stared out the window. We all
waved. They were small waves though, not big happy
ones.

Funny how life can change in a moment. We've been
living down here for a week. A short week. A long
week. Sharing a house with other families who live
now in this strange world, where kids have to visit,
where tubes and wire hooked up to a baby seem normal.
A world where you can't touch your baby sister. You
can only stand close, held up by your dad so you can
see over the edge of strange bed. Carter once asked
"Why does she have that?" and I thought maybe he was
pointing at Nanette's blue and white respirator tubes
but I couldn't quite tell, so I asked "Why does she
have what?" and he poked his finger toward a little
purple stuffed lizard that the nurses use to prop up
the respirator tubes.

He barely sees the medical interventions. They are
like the trees and bushes and tables and chairs and
toasters and school books of our old world. Carter
sees the purple lizard because it doesn't belong.
It's an anomaly, an artifact from the world outside.
There are a few of those around. Like the picture of
the ladybug above Nanette's head that identifies her
section. I see it every day as I walk in. The big
red bug with black spots and the number one.
Sometimes that's how I think of her - her super
identity.

Ladybug One.

Missing

Tuesday night Nanette turned a week old. We didn't
throw much of a party because all is quiet up in the
NICU. We have to keep her calm to keep her
stabilized. She has a lot of Carter's energy - she's
always been a squirmer. We used to love sitting on
the couch just watching her move around inside JoAnn.
But now, when she kicks and swings her arms and arches
her back, it pulls on the tubes and wires, especially
the respirator tube down her throat. She doesn't
understand why she's trapped there, why she's
uncomfortable. Her blood pressure goes up. Her
oxygen levels go down. Her blood gasses get out of
whack. So, we just watched the clock slip by the 8:27
mark and then slipped out. We had some special folks
waiting for us down at the house.

I drove up to Chehalis yesterday and brought the kids
down. The morning fog broke at about noon and the day
turned sunny and relatively warm (60ish.) Katie and
Carter romped in the play yard for a while and then
JoAnn and Gramma Josie and I took them to OMSI.
There's a wonderful exhibit there on fetal development
(of course, Carter was way more interested in the
exhibits on animation and cartoons.)

Angie stayed off-campus with Josie last night, so it
was just JoAnn and the kids and me. Carter fell
asleep during my "make-up-and-believe" bedtime story.
Katie stayed away all the way to the end but she
turned around and yawned and that was the last thing I
remember. I've missed the regular routine, and the
feel of my kids snuggling down into my arms for an
impromptu story (or two, or three.)

I've missed braiding Katie's hair and the way she
gladly wears them for me, even though they are usually
a bit awkward looking. One morning a few weeks ago
she let me put ten braids in - long, short, fat
skinny, and she wore them to school, sticking out all
over the place in no particular symmetry, just to
honor me.

I've missed the way Carter always escalates from a
whisper to a yell, and from calm to a blur, and the
way he picks up nuances, like the meaning of the word
"advance." In his Berenstain Bears A Book, angry ants
advance across all Arizona. One night a while back,
before all this, as we read four books (because he's
four years old) we discussed the meaning of the words,
and I told him that "advance" meant "to go forward."
About a week later we drove by a sign with big yellow
words and Carter asked me to read it to him. It said
"Ace Cash Advance" and he asked what that meant. I
told him that Ace was the name of the business, Cash
was money, and Advance was to get it before you earned
it.

He said, "I thought that advance meant 'to go
forward."

Like I said, he picks up nuances.

No telling what he learned at OMSI yesterday.

I can't wait to have Nanette join us in our little
evening rituals and routines. Surgery is still on for
Thursday, so far. That could change at anytime. Aunt
Lee Anne and Gramma Cooke will come down today to get
the kids and take them back to Chehalis. I hope that
Uncle Eric comes down too.

Oh yeah, Katie lost her other front tooth yesterday.
She was showing me how loose it was, wiggling it with
her finger. She took a step backwards and stumbled,
just a bit, but it was enough. Her little fingers
flicked away from her lips and as she caught her
balance, something small and white bounced on the
carpet at my feet. Her face lit up and her eyes got
wide and then she started laughing.

Life goes on like that. No matter what. Life goes on.

Ronald McDonald House

We've been blessed along this journey in many ways. When Gordon and I walked out of St. Mary's hospital at 11PM on the 11th of April with nothing but the clothes we wore, we just somehow knew that we'd land somewhere safe. Besides, nanette was all we thought about. Gordon drove all night and we hit the emergency room door here at Emanuel at about 3:00. Nanette came in about a half hour later in a little cigar-shaped space ship looking thing via ambulance to Walla Walla airport, fixed-wing plane to PDX and another ambulance to Emanuel.

(By the way, although Carter was about six months old the first time he flew to Florida with us, at four hours old, Nanette holds the record for youngest Cooke kid to ever rack up frequent flyer miles.)

While Nanette got tucked into the NICU, Gordon and I sat downstairs and drank Mocha Lattes in the Atrium. We came back up at about five or six that morning looking like hobos with no where to go. The nurses suggested the Ronald McDonald House. Of course, our first thought was cheeseburgers and fries (maybe we were a bit hungry.)

At eleven, we wandered down to the RMH. From the NICU, it takes about five minutes to walk (downhill.) The place is amazing. Laundry facilities, a huge dining room and full kitchen, a library, computer access, and rooms that rival the Marriott (at least from our weary point of view.) We got JoAnn and Angie moved in so they could have easy access to Nanette. Every evening a local group brings in dinner. We are cared for in every way. In return, we do a few chores, like take out the garbage, clean the kitchen, do the dishes.

There's only way to really understand how important all these little things are - and that's to have a sick baby. Crisis brings the minute details of life into stark relief - a place to sleep, a place to eat, someone to say 'hi', a place to clean up and a place to sneak away and cry sometimes.

We don't see our fellow travelers much, but when we do, we instantly know we are family. Maybe even closer than that. We work side by side in the kitchen, pitching in, mostly in silent harmony. No one has to say anything. We know we share a bond. It's place in our hearts that loves and hurts and worries and feels joy, all at the same time.

Every time I walk down that hill and into the doors of this house, I feel gratitude. Deep gratitude.

To anyone who reads this and who has ever donated time or talent or treasure to make this unique gift to the families of Emanuel's children, I humbly thank you. Know that what you have done has touched our lives and helped to ease our burdens.

Surgery postponed because of...

...pulmonory hypertension. A common companion to CDH. Nanette's heart has to work extra hard to pump blood through her lungs, so there's extra pressure building up. The resulting loss of efficiency droped her oxygen saturation levels (SATS) a bit, so the surgeon wants to wait a couple more days before he causes her more stress. But overall, she's doing fine. The new tentative date is Thursday, the 20th. He'll re-assess her that morning. It could be postponed again. Depends on Nanette.

Meanwhile, we're adjusting.

JoAnn is like a super-heroine, battling through her surgery to get here, trudging through hailstones (actually, I drove her through the storm,) sending healing energy to Nanette, and all the while keeping a better attitude and sense of faith than anyone else. We finally got her to see a doctor today. I was sitting next to her holding her hand and I could feel her arm throbbing. Her blood pressure was high (she'll kick me when she reads this, because it's like telling everyone that she has a wekaness for kryptonite.) Angie and the doctors are getting it under control - meanwhile, she's right back in there with Angie and Josie, watching, holding the vigil, praying. Four girls. They kicked me out.

I'll get even tomorrow. I'll go get Carter.

First Easter

Easter came and went like the rain - quiet,
relentless, broken by bits of sun and punctuated by
soft showers. Josie and Gordon spent the day with
Karen and Jerry and their kids in Banks. From
Chehalis, Gramma Cooke reported that Katie and her
cousin Kendall wore Easter dresses to church while
Carter stayed at Uncle Gary's house with Reid and
Connor and did "boy stuff."

JoAnn and I hung out with Nanette at LadyBug 1. Silus
is LadyBug 3. LadyBug 2 is empty, for now. The space
is big, but stuffed with ECMO machines and monitors
and chairs for us and Albert (Silus' dad), a few
nurses, and the occasional wandering resident. Silus'
mom would have been there too, but she came down with
a case of the flu a couple of days ago. It locked her
out of the NICU and put us all on notice about the
ramifications of getting sick.

Angie popped in and out during the day. Every now and
then we heard a baby cry somewhere in the distance.
We read books, distracted between paragraphs by the
soft ping of an alarm or a glance at the SATS that
made us do a double take.

SATS are the oxygen saturation numbers. A monitor
above Nanette's bed shows her heart rate, SATS and
respiratory rate. It hooks you in like a soap opera.
It's weird how those three wavy lines can engross the
eye and the mind and fuel the imagination. There's
too much time to ponder.

Time moves differently here. It shifts and dilates
like the dark iris of an eye. Some moments fly by
while the hours slip slowly, and days are measured by
the changes in staff, between 7 and 8 every morning
and evening.

At noon, a church group served ham slices and
scalloped potatoes and beans and corn on paper plates
up on floor three, near the pediatric unit. At five
we came back down to The House and volunteers from
Hands On Portland gave us another meal of turkey and
mashed potatoes with coconut cream pie and brownies
for desert. We waited for a hailstorm to pass by and
then went back up and spent a few more hours with
Nanette. JoAnn changed a diaper, took Nanette's
temperature, touched her gently like only a mommy can.
Sometimes Nan opens her baby-dark eyes for a groggy
moment and Angie and I jump up to catch a glimpse, or
maybe we do it hoping to be seen by her. But mostly,
Nanette sleeps.

This day was so quiet and peaceful, that a part of us
just wanted it to go on and on. Monday is surgery.
Scheduled for the afternoon. On the books for 2, but
the exact time depends on the patients before. Four
hours of surgery, at least an hour in intensive
recovery. We may see her at 7, or 9. We take
everything moment by moment. Time does move at a
different pace. You adjust or go crazy.

Monday will be waiting and hoping and resting and just
living in each moment, taking comfort by knowing that
we are in a place of miracles.

That reminds me, today, Becky's son Joshua drank two
teaspoons of milk from a bottle. Miracles don't come
in sizes. Moses parted the Red Sea. Jesus fed the
masses. A flower blooms. Joshua takes a nipple and
doesn't gag. What Moses did is impressive, but in our
little world here, what Joshua and Becky did, leaping
from setback to improvement, is relevant. That's the
real power of a miracle - the power to give hope.

Who knows what tomorrow will bring? All we know is
that right now we're okay. That's enough.

Healing

This is a tough passage to write...maybe even harder
to post.

Nanette had kind of a rough day. Her vital stats
weren't as good as they have been. In fact, I was on
edge today too. Maybe reality is settling in a bit.
But I couldn't let it show. JoAnn has enough to worry
about - the last thing she needs is a whimpering
husband. Dads have to be strong. Besides, we don't
have any good excuse to panic or cry or get emotional.

That's why dads don't sit down on the white tile floor
in Fred Meyer and cry while searching for an Easter
card for a little girl that might see "Happy Easter!"
but not "Happy Spring!" or have a crisis when a cold
wind sneaks down his back, whispering "you're not a
good father," while he walks down a sidewalk crowded
with strangers, trying not to think, but all the while
wondering about his new job back in Walla Walla, the
one where he's on commission and where they expect
great things of him, the one that's providing the
health benefits at a great rate, the benefits that are
hopefully paying most of the NICU bills, the bills
that are going to run about a million dollars a month.
Dads can't worry about stuff like that - they just
have to find a way to make it happen. And most of
all, they can't let that little voice of despair sneak
in under their collar and down their spine. Dads must
not get to the point where they stagger into the
hospital chapel and kneel down in front of the pulpit,
groping for some kind of light by staring at an open
bible that simply presents "This is the day which the
LORD hath made; we will rejoice and be glad in it."

Dads don't have any excuse to hurt or feel pain. Dads
are logical, calm, cool, collected. They are the base
of the pillar, the rock upon which the family is
built.

Dads have to be strong.

But I do cry, and I do doubt, and I do get the shakes
and I do have attacks of blind anxiety where my
stomach feels like it's stuffed with a lump of clover
honey the size of a baseball.

I hurt because I'm a dad and a husband, and that's the
most important thing to me. No matter what else
happens. I love my kids. I love my wife. I love
all the ups and downs that goes with 'em. Wouldn't
trade any of them for a mountain of gold or a moment
of fame.

Maybe that's what it meant. The passage from Psalm
118. God gave us this day. Right here right now.
This day, with Nanette and JoAnn and Josie and Gordon
and Angie and me and all the rest of the family and
friends and doctors and nurses and its perfect in its
own way. Rejoice and be glad.

Guess it's kind of stupid to philosophize on a web
log, but this is more than just an update for you,
it's a way for me to communicate - a way for me to
heal. Every pulse of pain that my family feels runs
through my body too; I hurt for Nanette, I hurt for
JoAnn, and for Eric and my mom and dad and Gordon and
Josie and Katie and Carter and all the babies up there
in NICU and the only way I can be strong is to write
about it.

So, that's a wrap. This day is over. Tomorrow is
Easter, and the sun will rise (but we probably wont
see it through the rain) and we'll go sit with Nanette
and stare for hours at those little lines playing
across the computer screens above her bed and we'll
take a break and have coffee and maybe laugh a bit
even though it makes JoAnn wince. And I'll glue on my
strong face with a bit of bravado and a lot of love
and then when the day is over, I'll come back here
after JoAnn and Angie are fast asleep and I'll let
myself heal a bit, if that's okay with you.

May peace be with you,
J.

A lovely note...

I just had to post this letter from my mom to a friend
- I love the way my mom writes, Maybe I get a bit of
my tendency to love prose from her...

Dear Marilyn, T. S. Eliot had it right: April is
the cruelest month. We have had a couple of family
crises this month already.

On about the first day of April, Eric -- Lee Anne's
husband - had a stroke that turned out to be very
slight (Thank you, Lord.) He has some verbal memory
impairment but only enough to cause him some
inconvenience from time to time, and he is improving
steadily.

Then Joe Jr's baby, Nanette, arrived on the 11th, a
gorgeous Rubens blond, (10 pounds, 2 ounces) but had
to be delivered Caesarian and after some trouble
getting her to breathe was immediately air transported
to Emanuel Children's Hospital in Portland where she
has been in the neo-natal intensive care unit awaiting
surgery on Monday for (I hope I get this right)
Congenital Diaphramatic Hernia, which means she has
had, since she was just a tadpole, a hole in her
diaphram which allowed a portion of her intestines to
bulge up into her chest cavity, impeding the
develoment of one lung and pushing her heart over into
the other lung. (Occurs once in about 4000 births, so
not awfully rare.)

[editors note: there is a corelation between the
under-deveoped lung capacity and the CDH, but it may
not be direct. In other words, according to Dr.
Krishnaswami, the lungs are under-developed, and there
is a hole in the diaphragm (as opposed to "because
there is a hole...")]

On Monday the surgeons plan to push her intestines
back down and close the hole in her diaphram. This
will be laser [editor's note: thoroscopic, rather than
laser] surgery of at least 4 hours and then she will
require careful monitoring for four days and hospital
care for at least a month.
Fortunately, she is large and strong as well as (her
nurses tell me) good-natured and easy going. Her
heart is strong, though not, at the moment, in the
right place.

Mom and Dad are staying at the Ronald MacDonald House
right next to the hospital though one or the other of
them can be found in a chair right next to her both
day and night. I can't begin to describe what a
blessing Ronald's home has been to our family and will
continue to play a large part in our lives for at
least another month. Emanuel Hospital is wonderful as
well and staffed with exceptional people.

Katie and Carter are presently here with us, though
they spend most of their time with Uncle Gary and Aunt
Penny and the cousins. They colored eggs last night
and will have their Easter Egg Hunt tomorrow over
there. Penny is also cooking Easter Dinner and Eric
and Lee Anne will join us. Joann's mom and Gordon and
her sister from Florida (a nurse) are spending the
weekend hanging out with Joe, Joann and Nanette Jo.

I know I don't have to entreat your prayers and loving
thoughts for Nanette and all of us who love her. I
also ask for thankful prayers for all the wonderful
medical workers who care for her and the staff and
volunteers at the Ronald Macdonald home. What a place!
It is an uplifting experience just to walk through
it.

This to explain why we've been out of touch lately. I
plan to write more personal note soon. Blieb wohl,
mein Kind. Sorry I don't know it in French.

Love, Marilene

Joshua and Becky

We made a couple of new friends yesterday - Joshua and
his mom Becky. Joshua had the same surgery that
Nanette will have and now he is camped out in the
less-intensive area of the NICU. Becky is staying
here at the Ronald McDonald House on the south side of
the hospital campus.

Unfortunately, little Joshua (who, by the way, is
adorable!) has been in the NICU (Neonatal Intensive
Care Unit) for two and a half months now. After his
surgery, a bit of his bowel became twisted and that
part died. It took another surgery to remove it, and
a couple more to get everything straightened out.
During all these procedures, the respirator tubes
triggered a gag reflex during a formative period, and
now he gags and vomits whenever he tries to take a
bottle or nipple. Poor guy can't eat. That's why he
is still there, hooked up to an IV of yellow nutrients
and a tube of white lipids. The intravenous Gatorade
and bacon fat diet. Yum.

Joshua's never been outside. Never known anything but
the little cubicle he shares with his mom in the NICU.
Never heard a car honk. Only the click of machines
and an occasional beep of a quiet alarm. And his
mom's voice. That's where he gets his strength.

NICU is quiet. The babies rarely cry. It remains
strangely silent there. Most are too sick. But not
Josh. He's a happy boy- likes to be talked to, likes
music and loves his mom.

Becky is a single mom, living alone in "the House,"
spending her days and probably some nights sitting in
a ten-by-ten cubicle with monitors, doctors, nurses
and an occasional visitor, like us. She heard about
Nanette and invited us to come back and meet Josh.
People are like that here.

NICU can be a scary place, but there's love there.
Lots of it. And healing, and life. And most
certainly, grace.