Nanette Jo Cooke

Family

noreply@blogger.com (Joe Cooke) — Thu, 18 May 2006 15:14:00 +0000

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

noreply@blogger.com (Joe Cooke) — Wed, 17 May 2006 18:15:00 +0000

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

noreply@blogger.com (Joe Cooke) — Tue, 16 May 2006 15:32:00 +0000

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!

noreply@blogger.com (Joe Cooke) — Mon, 15 May 2006 17:15:00 +0000

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

noreply@blogger.com (Joe Cooke) — Mon, 15 May 2006 15:37:00 +0000

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

noreply@blogger.com (Joe Cooke) — Sat, 13 May 2006 13:16:00 +0000

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

noreply@blogger.com (Joe Cooke) — Fri, 12 May 2006 13:32:00 +0000

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

noreply@blogger.com (Joe Cooke) — Thu, 11 May 2006 20:13:00 +0000

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

noreply@blogger.com (Joe Cooke) — Wed, 10 May 2006 21:20:00 +0000

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

noreply@blogger.com (Joe Cooke) — Wed, 10 May 2006 14:27:00 +0000

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

noreply@blogger.com (Joe Cooke) — Mon, 08 May 2006 14:25:00 +0000

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

noreply@blogger.com (Joe Cooke) — Sat, 06 May 2006 15:37:00 +0000

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

noreply@blogger.com (Joe Cooke) — Sat, 06 May 2006 14:17:00 +0000

...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

noreply@blogger.com (Joe Cooke) — Sat, 06 May 2006 14:16:00 +0000

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

noreply@blogger.com (Joe Cooke) — Fri, 05 May 2006 06:21:00 +0000

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

noreply@blogger.com (Joe Cooke) — Thu, 04 May 2006 21:19:00 +0000

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

noreply@blogger.com (Joe Cooke) — Thu, 04 May 2006 19:39:00 +0000

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

noreply@blogger.com (Joe Cooke) — Thu, 04 May 2006 03:21:00 +0000

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

noreply@blogger.com (Joe Cooke) — Tue, 02 May 2006 16:38:00 +0000

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

noreply@blogger.com (Joe Cooke) — Sun, 30 Apr 2006 15:49:00 +0000

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

noreply@blogger.com (Joe Cooke) — Sat, 29 Apr 2006 21:41:00 +0000

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

noreply@blogger.com (Joe Cooke) — Sat, 29 Apr 2006 02:27:00 +0000

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

noreply@blogger.com (Joe Cooke) — Thu, 27 Apr 2006 14:28:00 +0000

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

noreply@blogger.com (Joe Cooke) — Tue, 25 Apr 2006 22:38:00 +0000

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

noreply@blogger.com (Joe Cooke) — Mon, 24 Apr 2006 06:21:00 +0000

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