In Honor of Dex

When someone experiences a life-altering challenge or tragedy, it is not uncommon for them to seek solace in a personal cause. Some are lucky enough to find their inspiration quickly. For others, it may take much longer.

It was three years for me.

I have long searched for a project that spoke to my soul. I wanted something that would honor Dex's memory and give purpose to my grief. I needed a service project that would be as useful to others as it would be cathartic for our family. I preferred something kinda "different" and it had to be something within my skills and abilities.

When my sister's friend Emily showed us what their friend Arah had started, I knew immediately that I had found my answer. My heart told me that there was no turning back.

Micropreemie stillbirth diapers it would be.

I reached out to Utah Valley Regional Medical Center and the Now I Lay Me Down To Sleep Foundation of Salt Lake, sent them pictures of my plans and asked them if they could use these little diapers. They enthusiastically responded, "we want them YESTERDAY. And could you make us some micropreemie blankets and mats too?"

So this summer, we began another chapter in our healing. At Girls Camp, our Young Women cut and pinned 78 stillbirth micropreemie diapers for local hospitals and my friend Jennie helped me sew them up. My sisters and their families have rolled up their sleeves in Washington and New Mexico to make diapers. My friend Tracy is sewing with her family and YW in Canada. My youngest sister has researched where we can eventually requisition teeny little teddy bears. As a family, we trace, cut, iron, turn, and sew on vacations, weekends, and slow evenings. Kinley's friends have begun asking for diaper-making playdates. I've sewed and worked on this blog, deciding what exactly I want Teeny Tears to be.

Justin never raised an eyebrow when I suddenly transformed our formal sitting area into my sewing headquarters. Anyone who knows my husband understands what a profound declaration of approval that is. He has seen how this project has carried me through the autumn. I have long believed that the phrase "Time Heals All Wounds" is a load of garbage. Time heals absolutely nothing; it's what you do with the time that makes all the difference. When the autumn anxiety nipped at my heartstrings this year, I cranked up all of my "Dex Songs" and immersed myself in cutting, tracing, ironing, pinning, and sewing. I have felt so close to my son as I have worked on this very special birthday present for him. I've enjoyed a peace and stability that has eluded me for three Novembers. When my daughter Kinley gets hit by the November blues, she grabs a stack of diapers to work on; this effort been very healing for our entire family.

So, happy birthday to my darling Dex! Teeny Tears has been created in your memory and your honor. When a grieving family receives a T.T. diaper set or blanket for their little one, we want them to know that someone understands that their son or daughter was special, loved, and that they mattered. Because "a person's a person, no matter how small."

We introduce to you: Teeny Tears.

After More than Two Years

It is time. Crew and Dex have moved to our family blog.

That can be found here.

I may still update this blog from time to time, but they can always be found there.

Fireguy

We were still recovering from our most recent plague-of-endless-mucus when the new firehouse had their grand opening. Some great neighbors stopped by our home and brought fire hats for each of the children. Who knew what a hit the hats would be with Little Critter? I wouldn't let him wear it to bed that night; you would have thought I was plucking his toenails out one by one, the way he screamed and carried on.

Cute little fireguy, huh?

Afternoon Surprise!

I cried. I did.

I was sitting in the living room this afternoon, minding my own business, when Crew very casually did this right before my very eyes:

Then I fixed his pant legs...

Rank Has Its Privileges

While we watch and work for Crew's many developmental milestones, a very important one has creeped into playtime.

Tanner has long served as the "monster" of the house, the chaser that everyone runs away from. He has also been quick to foist the responsibility upon younger friends and cousins when they come to play.

Crew has officially graduated from sideline observer, very enthusiastically taking over all monster/ogre/dragon responsibilities.

Crew's New Year

I have many New Year's resolutions for our little beast, none of which he's really thrilled about.

We never gained traction with mealtime independence, but I'm ok with it. The independence was never really the issue. I just wanted him to eat and I was willing to give him 100% control if that's what it took. Justin thought I was just tired of feeding him. Not true at all. I was tired of trying to feed him and having him open his mouth invitingly wide just to smack the spoon across the kitchen as soon as it got in range of his little paw.

Heck, I'd spoon feed him every meal until he went to kindergarten if he'd just eat willingly. If he wants to feed himself oatmeal with his fingers, I'm totally up for that too. I'll do whatever he wants, as long as he happily and successfully gets nutrition down his throat. It seems his extended strike was probably because he didn't feel well. He's been sick for more than two weeks and is only now starting to sleep and eat respectably again. So he is back to eating and he now likes to spoon feed himself 4 or 5 bites per meal, which is big news.

He knows where his belly is now and I'm sure he was trying to say it tonight. It came out "bah" as he patted his belly. I also think he is trying to say "more", and it comes out "mah". He is starting to be more obedient to the word NO. He folds his arms when it's time for prayers. He pulls himself to standing at the couch. He is getting the hang of time-out; he gets plopped/trapped on the bottom step when he pitches fits.

He is attached to Kinley and Tanner at all times. He follows them everywhere, thinking he is so big. We don't keep a gate on the stairs because he can safely navigate them to go up and doesn't try to come down. He will sit at the top of the stairs and call for someone to rescue him.

He has never stood up in his crib, but we are going to lower the mattress down from the newborn setting hopefully this weekend because I think that day is coming. He has recently started sitting up in his crib every morning. For some reason he has always woken up and stayed on his belly, calling for us. So strange. But, now he sits up. He also sits up as soon as we put him in his crib at night or naptime. Like his brother and sister before him, he rocks himself to sleep. We have to put blankets on him after he falls asleep.

He waves "bye-bye" and "night-night". He can sign "more", "all done", "drink", and "cookie". Some of them aren't official ASL signs, we we know what he means. For example: banging his fists together means "more" or "eat". But... banging his fists together with his mouth open wide means "drink".

Our little blue engine is coming along, working his way up the mountain. We think he can, we think he can!

Update on Crew

Crew continues to make wonderful progress in all areas of development. He climbs the stairs a thousand times a day. He is pulling himself up to the side of the couch on occasion. He LOVES to have someone read books with him. He fights with light sabers, plays with toys, and is really into copying. He is a shameless tease. He has four animal sounds: cow, kitty, pig, and bear. They aren't real clear, but they are there. He now slaps his knees and hides his face at the appropriate times when we sing "Leo the Lion" and has started making the motions to "Popcorn Popping". He yells "Ma-maaaaaaa!" frequently. He is trying to imitate words. He twists his mouth around while he stares at my face. I have never seen anything cuter. He eats better than he did before, though he has regressed some in recent weeks. And we think he's losing weight, which stinks.

I had a really long conversation with PT Julie recently. Crew has a lot of flexibility in his feet and ankles. Too much, in fact. Way too much. He rolls his weak little feet in when he climbs and stands, stretching out those muscles looser than we want for future stability. So... foot braces, here we come. We don't expect he will need them forever, but we need to stabilize him while he strengthens his foot and ankle muscles so that he doesn't continue the habit of compensating by walking on the insides of his feet.

Today I pulled the Tough Love card on him. He has been playing Games of Manipulation with mealtime lately and I have grown weary of it. It's been an interesting day. Do you realize that Crew has never once held his own bottle or sippy cup? At this point he is capable, but unwilling. We have made a tiny bit of progress today, but he's super mad about it. He did manage to stick a fork into his mouth with pasta on it, and he fed himself a grand total of 3 bites of omelette with his fingers. We're in for a messy transition, but we are long overdue for mealtime independence.

We're very grateful for everything he has overcome and our longterm prognosis is so promising. Sometimes progress feels really slow and it gets overwhelming to have to fight so hard for every single milestone. Sometimes I just wish something would come easily for him. Cuteness doesn't count.

We have two therapists now. PT Julie comes twice per month and Cognitive Therapist Kathleen comes twice per month. He dearly loves them both, little grandmas that they are. It is hysterical to watch him show off his new skills when they arrive. He likes to let them know that he has been working hard in their absence. At one point, Julie had been away for a few weeks and hadn't yet seen him crawl independently. As soon as she arrived, Crew pranced circles around the livingroom repeatedly, smiling proudly at her, smacking her and yelling when she wasn't watching him closely enough. He knew exactly what she wanted to see and he performed with great flair.

Next year he will be enrolled in Special Ed preschool a few hours per week. I don't have much information on that yet. I'm not even sure whether it will start in September or November.

So that's the update on our little guy. He's doing well and we love him.

Pipsqueak Picasso

Crew is a tiny artiste. Hang on to this, folks. It will be worth big money some day!

Merry Christmas

I didn't take a lot of pictures of our official Christmas celebrations, but we had a marvelous Christmas. So happy, so peaceful, so perfect. This whole holiday season has been so good to us and for us.

We opened new pajamas, enjoyed a pizza picnic, and watched The Forgotten Carols on Christmas Eve. Kinley loved it as much as I did; Justin really liked it; Tanner tolerated it. After the play/movie, Kinley and I serenaded the men of the family with a multitude of Christmas carols. My little angel princess has a great voice!

To get to our bedroom, Kinley and Tanner have to pass right by the livingroom, so we shut them in their bedroom on Christmas Eve and gave Kinley a phone to sleep with. She was instructed to wait until 7:30 before calling my cell phone. Once she called us, we would turn on the tree lights and the Christmas music before they scurried down the stairs. As luck would have it, she and Tanner didn't wake up until almost 8! Justin, Crew, and I were already wide awake and waiting impatiently!

When what to his wondering eyes did appear? What is this Christmas magic?Someone told Santa about Crew's love of smarties.
"To infinity... and beyond!"
Kinley's favorite present was her brown stuffed horse. She named him "Mint".
Merry Christmas!
We love our beautiful children. They love us... and their glorious Christmas haul of gifts.

My wish-I-could-go-back-and-redo moment of the morning:
Giving Tanner his Buzz Light Year gun. It was the only thing he really wanted for Christmas, all he has talked about for a month. We knew that the success of Christmas morning was riding on that gun! We had, very fortunately, secretly purchased two when we were in Disneyland. I thought it would be funny to let Kinley open hers first and send Tanner into a tailspin. I almost did it, but chickened out at the last minute. Wouldn't that have been really mean/hilarious?

Candy Man

Justin took Kinley and Tanner to a BYU basketball game while I stayed home to wrap presents. The naughtiest boy I know stayed behind to relieve our tree of candycanes."Hmmm... this doesn't taste quite as delicious as I had hoped.""Whoa, dude, thanks for taking off the wrapper. I'm much obliged to you for the stogie. Peace out."

When Good Boys do Naughty Things

I had been whacked in the head with different toys four times in just a few minutes. He ignored my firm "NO" every time. I finally trapped him on the bottom stair in timeout. He was deeply offended.

The Screamer

Crew has become unbearably loud lately. He screams at us constantly, though I am his favorite victim by a (very) wide margin. Justin blames me because I tolerate it. I'm sure he's right because the mini-monster doesn't yell at people outside of our family. He's as sweet as sugar to the neighbors, gentle as a lamb (unless you are a baby smaller than him, of course).

Sigh...

I don't mean to put up with it, but I have compassion for his plight: It must be so difficult to have so many things to say and no words with which to say them. I can't count on his siblings either; Kinley and Tanner are bigger softies than I am, catering to our darling diva. Justin is more firm, but he's inhibited by the houseful of spineless enablers around him.

The Bitty Beast can dissolve my nerves instantly by screaming in just the right tone.

I scream back sometimes. "Stop yelling at me!" I yell. It's surprisingly ineffective.

Pee-Wee Potentate

I think Crew was an emperor in a former life. He has enslaved me as his official food taster; I guess you never know when someone is going to slip poison into your spaghetti. He is quite insistent.

Big and Tall

Critter pulled himself to standing by the couch this morning all by himself! He is stiff-legging the effort and we need to work on having him bend his knee to use his thigh muscles, but this is excellent progress!! My expectations of when we'll have him running laps around the house has been changed dramatically by the miracles of these last several weeks!

Conductor Crew

We take the kids to one choir performance and they think they are mini-maestros. Especially this one.

Crew Conducting @ Yahoo! Video

But let's be honest. Who can help themselves with the Hallelujah Chorus?

Ta Daaaaaaa!!!

When it clicks, it CLICKS.

6 weeks ago:
Crew couldn't crawl.

2 weeks ago:
He could crawl but couldn't quite get himself up onto an air mattress that had been placed on the floor.

Today:
My baby mountain goat climbed my entire staircase unassisted. Three times.

Will Climb for Stormtroopers

Yesterday I was on the phone with a friend when I turned around and found this:Crew really really wanted that stormtrooper!! We've been working on climbing skills recently and he navigated the bottom step all by his wee little self for the first time! Go, baby mountain goat!

Amped

Crew has a very electrifying personality. Of the static variety.

Apple Fest

This was one of the first moments when Crew was thinking about becoming an eater. He demanded that Aunt Mardie let him try his jaws at an apple, shocking us all. Don't worry; it was germ-free, peeled for his ease and convenience.

The Happy Eater

Peace and sanity reign at mealtime. At last. I love happy eaters and this is our very happy eater!
"Wanna see my A.B.C.* food?"
"I said MORE!"*A.B.C. = Already Been Chewed. Just in case you didn't have gross friends or siblings growing up.

"More Please!"

Meet our baby goat. He is signing "More!"

Ahh... he eats. Life is good. Life is very very good.

Eatin' Eatin'

Crew continues to progress with his feeding this week. I can't even explain the difference in the dynamic of our home. I put food on his tray and he doesn't fling it across the room in a fit of rebellion. He wakes up asking for food by signing "more" and reaching for the kitchen. He follows me around if I am eating something, demanding that I share. I'm not at all convinced that his hunger cues have magically activated to full capacity, but if he is only eating for the sake of social participation and his own amusement, that's enough for me!

Keep it up, little piranha! This just has to be enough for you to grow on!

Breaking News

We interrupt this blog for an earth-shattering announcement...

Crew. ate. a. peanut. butter. sandwich. for. breakfast.

Crew, Crew, Crew...

Crew has been a weird kid lately. We are in a transition period right now with a developing little personality and ever-changing feeding issues.

When he first became sick last week, eating was the first thing to go (as it always is). I had already been toying with the idea of backing off the pressure for increased calories in favor of increased happiness and texture. He had been resisting his meals with greater insistence with every meal. Every day felt like a step backward. Once we got the news that he had increased his weight to 17.5 pounds, I felt like I could breathe for a few weeks/months and change the focus.

So, I took my cues from him and completely removed all pressure to eat.

First, he totally starved himself. For several days. We were all miserable and I was ready to throw in the towel.

Then... he started eating snacks (with texture, no less!) that he saw the kids eating in the car. In Boise he ate loads and loads of stuffing. He tried to eat a whole apple out of Mardie's hand (not out of mine, of course, because I'm The Enemy where food is concerned). On the trip home he stuffed himself with Ritz Bits and mini fig newtons. This morning he made himself gag on his usual mush, but willingly fed himself Life cereal and cheesy crackers.

Feeding changes are always a blessing and a curse. I have prayed for months that he would return to successful self-feeding. That I wouldn't always feel that "this is the bite that is going to push him over the edge". I hate having to gauge his level of resistance between "he's just being ornery, but he'll eat it ok if I keep at him and turn the cartoon up loud enough" and "he really doesn't want to eat and he's going to make himself throw up just to get out of his highchair, setting our progress back for days/weeks." I have wished for the moment that he would reach for something in my hand because he wanted to eat it. I have always hated feeling like the rubber spoons are an extension of my arm. I hate having food pulled out of his mouth and thrown in my face. I hate knowing that he is hungry, but having him clamp is mouth shut because he has decided that eating is a fate worse than death and it's the one thing in his life that he can control. I hate feeling like I have to choose between what is best for him physically and what is best for him emotionally. Nothing like setting your child up for an eating disorder to make you feel like Mom Of The Year.

Crew has returned to self-feeding! Crew has decided that mealtime can be an enjoyable social event. He ate tiny bites of pizza last night, asking for "more" in sign language, repeatedly and enthusiastically.

I'm pleased. I consider this a step in the right direction. For now I have to let calories (and even well-balanced nutrition) take a back seat. Exploring textures and rebuilding his love for food has to be the priority right now. He's not eating enough to grow on, but hopefully his caloric intake will increase over time. For now, we'll take our small successes and be extremely grateful for what we have.

Fingers crossed that I don't screw it up by pushing him too fast or too far. It doesn't take much at all to derail his feeding success; it's a very delicate, very tense balancing act.

Eater

Oh, Crew... your newfound excitement for mealtime makes my heart SING!

Last week while we were praying for a resolution to our most recent kitchen impasse, I felt very strongly that the time had come to step down and give our little critter his life back. I knew it was the right thing to do for him but I never imagined that the change in our impossible eater would be so dramatic. He is handling textures that he has never been able to manage before. He is showing interest in food that I have never seen out of him. Ever. I refuse to suffer the anxiety of counting his calories, but his volume is increasing much more quickly than I anticipated. He is curious and ambitious, two culinary traits I would never have used to describe him.

It is such a feeling of euphoria to have him open his maw wide for a bit of cheesy quesadilla. I love the sound of him yelling at me to bring him more shredded chicken because his tray is empty. I tear up to see him happily banging his fists together to sign "more" for another muffin. There is peace in my heart and sanity in our home. Neither of us have cried at all during mealtime so far this week! Not once!

I pray it continues. Another little miracle out of our little miracle.

Neo Follow-Up #2

Last month we visited the neonatal follow-up clinic. Yesterday we went again, to visit with the specialists that we didn't see last time. There were only 4 children in the clinic yesterday (instead of the usual 12-15) and each specialist took took a a really long time with Crew, evaluating him very thoroughly. No complaints there. I'd say we got our money's worth, except that we don't actually pay for it:

The clinic bills our insurance.
Our insurance laughs.
Our insurance refuses to pay a single dime.
The clinic writes it off.

Rinse and repeat.

I suppose there is some governmental grant that comes into play somewhere in there and that our taxes pay for it. I suppose your taxes do too. Sorry about that. I guess we can consider Crew and his micropreemie buddies to be special earmarks. Preemie Pork, if you will.

Fatso
We reweighed/remeasured him. He has grown almost an inch in the last month, and his weight has increased from 16 pounds 10 ounces to 17 pounds 8 ounces!! I knew it wasn't my imagination! He looks fluffier and has started wearing 18-month outfits. He remains very underweight, but his height is almost kissing the 3rd percentile line for his adjusted age! Wowzers!

I'd like to thank the good people of Nestle for creating Benecalorie, and my NICU buddy Amy for telling me about it.

Psych Eval
Crew visited for a long time with the developmental psychologist, who declared him "a completely different kid" from the last time he saw him in 2009. We're getting a lot of that lately. Crew's a little miracle, to be sure, and he's dodged a heck of a lot of bullets in his short life. His medical history is so alarming that doctors always expect him to be in much worse condition. He looks pretty bad on paper and never ceases to surprise. The psychologist says that he is only "a little bit behind" cognitively and that most of that may be attributed to his motor delays. He can't yet physically perform more advanced evaluation activities, so he can't technically pass them.

The psychologist also assured me that Crew needs to be treated more like an almost-2-year old, instead of the 12-month old that he looks like and pretends to be. I'm a mollycoddler, it's true. He gets away with a lot because he is tiny and nonverbal. I usually give him the benefit of the doubt, assuming he must not understand what's being said to him. It couldn't possibly be that he's willfully ignoring/disobeying me, right?

November is Prematurity Awareness Month. Did you know that more newborns die of prematurity than any other cause? Did you know that the effects of an early birth can last a lifetime? There is a misconception out there that preemies "catch up by age 2". If you swing in my circles, you learn very quickly that it's not always the case. Not for micropreemies, anyway.

To learn more about the impact of prematurity or to join the campaign, visit the March of Dimes!

Grandma and Crew

This is my favorite picture of Crew with Justin's mother, Ann.

Duct Detectives

We recently had our ducts professionally cleaned. This was the treasure trove they found in the dark recesses of our vents. Silly Crew.

Birthday Boys

On behalf of our little critters (and myself, of course) thank you so much for your many generous expressions of love regarding our bittersweet birthday celebration and angelversary. We had a very nice, mellow day honoring our miracle boys!

I woke up at 2:15 a.m. and couldn't sleep any longer, so I climbed out of bed to look through our memory box of pictures, listen to my Dex songs, read every single word I have ever written about my angel, and have myself a good cry. It was lovely, actually. The process cut through the numbness and denial, which was just what I needed/wanted. It set the tone for a peaceful, content, cheerful day.

I wasn't sure whether I should publicly post the picture of the two of them together in Crew's isolette, but it's one of my favorite pictures and it's one I always linger on when I stroll down memory lane. I have no misgivings or regrets about sharing it, but I've taken it down tonight to return him to relative privacy. Just because. They have the same nose, same profile (they are identical twins, after all). It reminds me just how close we were to having them both in our home and how different life could have, would have been. It also reminds me of just how close we came to losing both of them, and how different life could have, would have been.

In Celebration
We pulled Kinley out of school early to drive down to the cemetery. It was cold and blustery, but Kinley and Tanner would have stayed there all night, given the option. They just love Dex's cemetery and it has clearly been too long since our last visit.
We sang songs to Dex and released two balloons (for his second birthday). Tanner thought releasing balloons was pretty redundant, because Dex still has the ones we sent to Heaven last year.


Crew yelled and smacked Dex's stone a few times, saying "Happy Birthday" in the best way he knows how.

We came home for a riotous birthday celebration for our little guy!


Crew enjoyed playing with his presents and taking exactly 4 tiny bites of his first donut before crumbling it to use as kitchen cannon fodder.

We planned on watching Toy Story 3, but I was way too tired to keep my eyes open, so we're watching it tonight instead. Extenda-celebration!

HAPPY BIRTHDAY TO MY SWEET BOYS!!!

I LOVE YOU!

Happy Birthday To My Favorite Twins

Can it be? Two whole years?
I can't believe it's so.
It feels like it was yesterday,
And a million years ago.

I don't know how to feel inside,
I'm not sure what to say.
I can't decide: "rejoice or grieve?"
I guess both will do today.

Happy Birthday, Dex and Crew!