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Friday, December 10, 2010

The 20th Hour

I feel God calling me to lead my family to be technology free from 7:00-8:00 each night.  I've felt bits and pieces of this calling for some time, but it wasn't until a few days ago it really started to take shape.  I read an article in an old parenting magazine about getting a good night's sleep.  One of the tips was to eliminate screen time one hour before bed.  (Our kids go to bed at 8:00.)  I thought turning off the television would give Ellie some much-needed mommy and daddy time, too.

Today, my mother-in-law mentioned a book she'd seen on the news: The Family Dinner.  I've heard of this book, but I've never given it much attention.  I figured I got the gist of it, and that was good enough.  As she talked about the book, I pulled up the website (the embedded link in the title) and scoped it out.  I decided to request it from the library and read it, just for good measure.

While I waited, I became painfully aware that I'm researching family improvement on one of my digital appendages: my laptop.  (My cell phone would be my other digital appendage.)  How many nights do I sit here on my laptop while Ellie plays, deceiving myself that I'm involved because I'm present?  The same is true for my hubby and the television.  We seem to feel incomplete if we eliminate this extra level of distraction.  Who am I kidding?  I feel incomplete if I don't have both the television and laptop going.  Is this some twisted need to multitask?  I feel bored to the point of pain if I'm driving without holding a phone conversation.

Yet I can be perfectly content, sans phone, sans computer, sans television, if the situation calls for it: camping, nature walking, cloud watching...  So maybe I've come to associate being in my house or car with something negative or some need for noise or distraction.  Maybe I need to reframe my picture of being home so that that situation calls for going without digital noise.

I watched the movie Eat Pray Love, and the art-of-doing-nothing scene (what Italy's all about) really spoke to me.  (Somehow the book just didn't convey the importance of it as clearly to me.)  I thought about Italian children, what they're doing while everyone else is doing nothing.  I pictured them playing in the yard, making up games, going on adventures, playing chase.  These are the sorts of things I used to do while my parents sat in the driveway or backyard with friends and neighbors doing nothing.

Where has this attitude of doing nothing gone?  Why can't I just open the back door and let Ellie roam while I fold laundry or read a book or meditate?  I've done it before.  She roamed the far reaches of our backyard for an hour.  She'd never been given that much freedom before, and she opened up to it!  Then I let her play with finger paints on the back patio, all by herself.  I was just on the other side of the screen, and it was a relaxing afternoon for us both.

Of course, this has nothing to do with the 20th hour, at least not directly, but it does speak to our attitude.  It is important that we let go of that need to always be connected to the outside world and the need to constantly bombard our brains so that we don't have to think of something to do or - well - think.  So we have the 20th hour.  We'll have to - gasp - find something to do together as - another gasp - a family!

Well, the big one is now awake and trying to come through the ceiling, so I'll have to let those thoughts fall where they may.

To the 20th hour!

Monday, December 6, 2010

Mikey Update 12/6/10

Mikey went in for surgery at 7:30 am.  The surgeon started his part at 9:00.  He was on bypass at 9:30 and off at 10:00.  He was done at 10:30.  The surgery went very well without complications or surprises.  The respirator he was on was in his nose instead of his mouth this time.  It looks a lot less intimidating that way.  Mikey had a harder time coming off the vent this time, but the anesthesiologist told us he'd really loaded him up on drugs, so I'm sure that slowed him down.  He got off the vent at 5:30, which was only a couple of hours longer than last time.  He also had a harder time getting off oxygen this time, but not too much harder.

That evening, Mikey was doing great on just Tylenol and the equivalent of Ibuprofen, which is amazing.  Last time he needed Morphine around the clock to get through the first day and night.  As the night went on, however, we observed the anesthesiologist's magic wearing off.  Then he had a coughing fit, poor thing.  We gave him morphine, which should have knocked him out, and it barely made a difference.  We doubled the morphine and put him on a sedative.  He barely slept 30-60 minutes at a time before waking up crying in pain.  That first night was far harder than last time.

At rounds, we decided to give him water to see if he might be ready to start eating.  We waited through the night because he was in so much pain.  We finally got a little sleep in the wee hours Thursday morning, so we started water mid morning, which he took with no ill effect.  Over the course of the morning, he had six ounces of water and 4.5 ounces of breast milk.  We cut him off because we didn't want him to get sick.  Since he'd been so long without something to suck on (he won't take a pacifier), he was happy to suck on an empty bottle until he fell asleep cuddling the bottle.

I finally got to hold him Thursday afternoon.  He was down to just his chest tube and oxygen (and all the standard monitors).  That evening, he smiled a little while I played with him, and I discovered he'd cut a tooth that morning, which probably explained some of his discomfort (he doesn't handle teething well).  That night, we knew we'd have to give him some formula.  I was heartbroken because I'd only wanted him to have my liquid gold for the first couple of days, and I didn't even have enough to make it one day.

That night we had a scare.  We saw milky fluid coming from his chest tube, which, as we saw during rounds, turned into thick, yellowish white gunk without a hint of red.  Everyone knew he had chylothorax, a really scary complication where, to oversimplify it, fat deposits build up in the chest cavity and keep the lungs from expanding.  Here's a really scary story about the potential effects of this complication (most cases aren't this bad, though): http://www.llli.org/llleaderweb/LV/LVAprMay03p27.html.  Thankfully, Mikey's respiration was good, so we knew it wasn't that bad, though the chest tube helps to drain some of it.  They started the breathing treatments and sent the fluid off for testing.  I got right to praying that he didn't have it.  Even though there supposedly can be other explanations for milk fluid (none of which anyone could name for me), there is not explanation for the amount we saw during rounds.  Much to everyone's surprise, the test came back negative.  The doctor and nurse practitioner at rounds Friday morning saw the notes and freaked out (their eyes bugged out of their heads...kinda funny in retrospect).  Thankfully I was there to tell them the test was negative.  Nobody would - or could? - give me any other reason for what we saw, and nobody was even willing to talk about it.  I know that God healed him, and if anyone thinks differently, keep it to yourself.

At that point, his respirations had been great. He was receiving the breathing treatments (air forced into his lungs) originally to prevent complications from the scary complication, but which also serve to evict mucus from his airways since he was unwilling to cough.  They made his sats go from great to awesome.

Thursday night, I tickled him, and he laughed and smiled while I played full-body peekaboo with the privacy curtain.  He even blew Nonni (Ellen) a kiss.  Friday morning, I realized he now has a whole collection of animals from the hospital. He got a Beanie Baby chipmunk from Phoenix Children's Hospital when he had his testing on the 19th, a Starbucks lamb from Mended Little Hearts (the support organization for families of heart kids), a St. Jude bear from the Child Life (activity program at St. Joe's) and a Beanie Baby owl from the nurse when she found out he loves owls. Later, he would receive a Beanie Baby snowman from another mom in the unit.  Sheesh.

Friday afternoon he ate some baby food.  He got too tired, though, and had to get back in bed.  His poor little head just completely fell over in the high chair.  We planned on pushing him around in a car later, and we got our wish.  Even though he was tired and uncomfortable, he had a good time.  He inspired everyone as he rolled around the floor over and over.  We had to take a break so he could have his chest tube removed Friday late afternoon.  I was excited, since that's the point at which he turned around last time.  After it was out, he took a short nap.  Then... he sat up by himself! He played and clapped and pointed and talked. Then... he pulled himself up! Then he tried to climb over the crib rail! You wouldn't know he'd just had any surgery, let alone open-heart surgery, if it weren't for the incision! Well, and the leads and the oxygen line and the pulse/ox and the BP cuff...

Mikey's saturation was still dropping while he slept, so weaning his oxygen was a slow process.  Last time it took two or three tries to wean his oxygen.  It took three or four this time.  He just wouldn't take deep breaths consistently, not that I can blame him.

Saturday morning, Mikey was a new boy.  He was dancing to the cheesy 60s infomercial music that the Elmo microwave put out.  (We were able to borrow toys from Child Life.)  I tried to get him down for a nap, but he just looked at me, so I blew him a kiss, and he blew me a silent kiss back.  It was so sweet.

Saturday afternoon, we gave Mikey some cereal.  He had cheerios for the first time, and Honey Nut at that.  He loved them.  He ate some, but mostly he licked them and took itty bitty mouse bites out of them.  He's such a weirdo.  Later, I gave him grapes, which he proceeded to mash between his hands.  I thought he was clapping.  Silly me.  Our nurse on Saturday and Sunday said she loves to wean oxygen.  Sure enough, she had him off oxygen Saturday afternoon.  He did great Saturday night, and Sunday morning we were told, in no uncertain terms, that he would be going home.  There had been some concern about the fact that he wasn't eating enough, but he starting eating a little more, and they figured he'd pick up his pace at home (and he has...he just ate over half a banana at one time!).  They were also concerned about his lack of movement down below, if you catch my drift.  That, took, fixed itself, resulting in a surprise baby shower (literally) a few minutes ago.  I don't think he appreciated the added level of effort involved in receiving a shower over a bath.

Saturday afternoon, evening, night and Sunday morning, we must have done a thousand laps in a little red card we borrowed from Child Life.  He made everyone smile.  He inspired everyone, even the doctors.  He wouldn't get out of the car except to eat, so I had to call in reinforcements so I could pack our room.

We've been home for exactly 24 hours, and Mikey's doing great.  You wouldn't know he had surgery if it weren't for the incision.  Other than insisting on sleeping in my bed last night, that is.  Daddy got the couch.

Oh, and Mikey's first order of business when we got home?  To go around the room and kiss all the stuffed animals.

Thursday, December 2, 2010

Mikey Update 12/2/10

The surgery yesterday went great.  There were no surprises, and it was over incredibly quickly.  Mikey was taken off the ventilator at 5:30 last night.  He's been doing great since, though pain has really taken over.  He's on a number of medications to try to control the pain and help him sleep, but he's not getting much rest.  If he could just rest, he'd heal a little more and feel better.  Still, he's doing very well.  We will get the catheter out today.  I doubt the chest tube's coming out today.  We will try to get him moving today, which will help him drain and help get the chest tube out.  He successfully drank a bottle of water and he's on his second.  Hopefully he won't reject it, if you catch my drift.  If this goes well, and so far it's going very well, he'll get breastmilk in an hour or so.

Sunday, November 21, 2010

Mikey Update 11/21/10

Mikey's tests went well on Friday.  His hearing is fine.  It looks like he has reflux, which is weird because his upper GI in March showed no evidence of reflux, nor did either of his barium swallows.  The doctor took biopsies, and we may get the results before Thanksgiving.  We don't know when we'll get the MRI results.  His surgery is still on for 8am on 12/1.

In other news, Mikey sat up on his own for the first time last Sunday (11/14).  He also pulled himself up for the first time today (11/21).  He technically did it Friday, but Mike's not counting it because he used Mike's leg, too, and somehow that's easier.

Mikey's language is developing rapidly.  We never have bananas in the house, though he's eaten them in baby food, but at the grocery store, he pointed to the bananas and said, "abananana."  That blew my mind.  He is signing "please," "mommy" and "daddy" now in addition to "more" and "milk."  He regularly says "Annie," "Ellie (A-yay)," "Mama," "Dada (DaaNaa)," "no," "up," "balloon (oon)" and "owl."

Mikey is officially eating solids.  We still give him some baby food, and we will continue to grind some foods, but he eats pieces of various fruits and some lunch meat (besides all the made-for-toddler foods).  Oh, and he loves shortbread cookies.  He licks at the sprinkles until his mouth and hands are green.  He should enjoy our Christmas cookies!

Sunday, November 7, 2010

Mikey Update 11/7/10

I know this is long overdue.  I was hoping to have more information, but information is slow in coming.  Here are the highlights.

Mikey has a chromosome 6 duplication.  Two genes are affected.  The geneticist has no idea what this implies.  This variation could be causing all, some or none of his medical problems.  She's leaning toward some long-named syndrome that basically means parts of his body didn't receive enough blood while he was developing.  We're still waiting on more test results, but we'll be lucky to get them before Christmas.

The neurologist is convinced there is some syndrome there, but she doesn't know what.  Mikey's having an MRI on 11/19 to see if we can see anything.  He's also having a hearing test because she thinks he might have slightly less hearing in his left ear.  He will also have his endoscopy that day - while he's already under - to see if we can see a physical reason he a) has trouble digesting formula and b) isn't gaining enough weight.

His heart surgery (hole repair) is scheduled for 12/1.  (For those of you who heard it was 12/8, it was; we moved it farther away from Christmas.)  His poor weight gain could be due to the hole.  Additionally, we just found out his heart has, in the last two months, become ever-so-slightly enlarged.  This is not cause for concern right now, since his lungs aren't affected.  The finding does support our decision to operate.

In other news, Mikey had a great birthday.  Much of our family was missing, but our friends rallied and filled out the celebration.  Our one-year-old little man still looks like a baby but acts so much older than his year.  He brings us new joys and laughs every day.  If it weren't for all the running around to doctors and therapies and whatnot, we wouldn't know he had any challenges.  He's happy and smarter than smart.  He smiles and laughs all the time.  He's very much into putting things into other things, taking them out, putting them in, taking them out, putting them in...  He's eating a greater variety of baby foods every day.  Today he even ate freeze-dried apples!  I hope he'll be eating "real" food very soon.  He loves to stand holding on to things.  He walks holding our hands.  He signs "more" and imitates all of us, including Ellie.  Last week he said "bummer" and "boom" after me.  He and Ellie go back and forth in the car saying "no" and make each other laugh.  Mikey's favorite things are books, dogs and birds - all birds, and both he and Ellie love owls.  It's so neat that they have a common interest.

It does seem as if Mikey matured overnight.  Of course, I've had that thought a lot lately, so maybe he did!  Whatever the case, our little boy is entering the toddler realm, an exciting prospect!

Saturday, October 9, 2010

Family Field Trip: Boyce Thompson Arboretum

We took a family field trip to Boyce Thompson Arboretum, about an hour east of Phoenix.  We got to hear a live concert, chase butterflies and lizards, and hike through beauty only God could create.  Here is a photo diary of our visit.

The moment we walked in, we were greeted by a hungry butterfly

As I stood on the bridge looking down this now-dry rivulet, I felt the spirit of its living days flowing past me like a ghost

I didn't find the sign for these trees, but they were huge, white, and oh, so cool

These little lizards were all over the place - this one was flipping his tail from side to side, probably telling the preschooler to back off...

This tree, especially this knot, spoke to me...it said, "'O' is for 'Owl'"

Note the knotty "elbow" up at the right - love it!

These saguaros had to be 12 feet tall - we wondered how old they must be

Standing on a suspension bridge over Queen Creek (so that's where the city name comes from!)

I fell in love with all the paths of footprints in the creek

A little hideaway...

View from the top

The suspension bridge is that tiny thing in the middle of the picture

I named this one "Ginger Rock"

Ellie: "Does the rock have ketchup on it?"

I'm pretty sure this one speaks for itself

The depth perception is lost in 2D, but I took this because it made me think of Calvary


Furry century plant?

Even the drive home was fantastical

Thursday, October 7, 2010

Thankful Thursday

First real experience with rain

Three generations playing together

First jalapenos... and hopes for future farming

Homegrown abundance

Successful ventures of creativity

Mistakes made marvelous

Learning a new skill

Gifts from young artists