Our Miracle Boys

In Honor of Dex

2011-11-10T06:11:00.000-08:00

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

2011-02-15T06:44:00.000-08:00

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

2011-01-24T06:43:00.001-08:00

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!

2011-01-24T06:43:00.000-08:00

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

2011-01-19T06:42:00.000-08:00

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

2011-01-18T06:42:00.000-08:00

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

2011-01-12T06:41:00.000-08:00

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

2011-01-06T06:41:00.000-08:00

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

Merry Christmas

2010-12-27T06:39:00.001-08:00

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

2010-12-27T06:39:00.000-08:00

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

2010-12-26T06:38:00.000-08:00

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

2010-12-20T06:40:00.000-08:00

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

2010-12-17T06:37:00.001-08:00

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

2010-12-17T06:37:00.000-08:00

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

2010-12-13T06:37:00.000-08:00

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!!!

2010-12-11T06:36:00.001-08:00

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

2010-12-11T06:36:00.000-08:00

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

2010-12-09T06:35:00.001-08:00

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

Apple Fest

2010-12-09T06:35:00.000-08:00

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

2010-12-09T06:34:00.000-08:00

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!"

2010-12-08T06:33:00.000-08:00

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

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

Eatin' Eatin'

2010-12-04T06:33:00.000-08:00

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

2010-11-29T06:31:00.000-08:00

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

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

Crew, Crew, Crew...

2010-11-28T06:31:00.000-08:00

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

2010-11-20T06:32:00.000-08:00

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

2010-11-20T06:30:00.000-08:00

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

2010-11-16T07:22:00.000-08:00

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

Duct Detectives

2010-11-16T07:21:00.000-08:00

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

2010-11-11T07:21:00.000-08:00

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

2010-11-10T03:59:00.001-08:00

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!

Call Me Crazy

2010-11-07T03:58:00.000-08:00

Sigh...

I've got the grouchies.

Did you stop reading right there? I wouldn't blame you. I'm tired of hearing my own thoughts, so it's ok if you are too.

The timing of our trip to Disneyland was not accidental; I was dearly hoping that the euphoria of our happy respite would eclipse the seemingly unavoidable blues of the season. T'was not to be. Maybe it's hormones. Maybe it's Crew's most recent hunger strike. Maybe it's all the junk I've been eating. Maybe it's because I need a haircut very badly, so I feel fat and ugly. Maybe it's bitterness that Justin is choosing to channel his grief into miles on the treadmill while I help myself to another 4 servings of pasta. Maybe it's others that I care about struggling with their own tragedies around me. Maybe it's everything.

I feel so full of conflicting emotions. How can one person feel so mercifully blessed and so totally gypped all at the same time?

I think I'm doing a lot better than I was this time last year. Justin disagrees.

Would you believe I actually put Crew in time-out last night for the first time ever? Actually, at one point all three of the children were in time-out at the same time. I think that says more about my state of mind than their behavior.

I swore during breakfast this morning when oatmeal was tossed in my face for the fourth time. One of my finer moments.

I really thought that this year would be so much easier. A few weeks ago I was a little alarmed at how stable I was feeling, wondering what kind of deadbeat mom-of-an-angel I am that I can be so practical, confident and upbeat about our situation during this time of year. Ack! I'm no longer practical! I'm no longer confident! And I am definitely not upbeat!

Last year the anxiety didn't dampen and peace didn't come until late late late Birthday Eve. Mostly because I didn't seek peace until then. Seeking peace when I feel this way means opening my heart to feeling the loss deeply enough to drive me to the Savior's feet. It means willingly setting aside my protective anxiety to make room for the more honest pain and sorrow. It's only through that openness of heart that I can get to the other side, to find peace, love, and joy. But I'm not a masochist, so that first step is really hard. I do denial/bitter/angry so much better...

I just don't know if I can pull it together in time. I know from experience that it's worth it. But...

November

2010-11-03T03:58:00.000-07:00

Dex is always on my mind, even when I'm not talking or writing about him. My thoughts surrounding him are usually upbeat and positive, but this is the time of year when I acknowledge to myself the truth: that I constantly keep myself intensely busy in order to stay ahead of my sorrow.

In a strange way, I have been looking forward to this for a while. The raw vulnerability of this tender time of year takes me back to the peace and the pain of the day our world changed forever. In the melodic words of Lady Antebellum, "Yes, I'd rather hurt than feel nothing at all." I spend so much time in a place of acceptance regarding our situation that at times I wonder if I'm really ok or if I've just told myself that so many thousands of times that I am ignoring the possibility that I'm not ok. That I'm not at all ok. I don't even know if that makes sense to anyone else.

I'm publicly confessing that I get a little envious whenever I find out that someone has completed their earthly journey and has returned Home in peace. It feels unfair that they get to be with my Dex and I can't. Patience is a virtue, but not one that I possess in particular abundance. I want to be brave and patient, if only because Dex thinks I'm silly when I'm petty about the current arrangement. I'm a people-pleaser and I want to please Dex with my ability to endure to the end cheerfully. I don't much fear death anymore; I only fear dying unworthily, my life's mission incomplete. I now know without any question that death is just the doorway to the next adventure. (And I do so love a grand adventure!)

The weeks after Dex died were the most spiritual and edifying of my entire life, without question. The spirit was my faithful companion, comforting me when it was all just too much bear. I felt insulated and protected by it, strengthened and enlightened. It made me feel safe and oh, so loved. I felt love and compassion for everyone around me. Several months later, I remember going through a period of time when I absolutely dreaded feeling the spirit. I didn't like being in church because I felt the spirit when we were singing hymns. I had come to associate the feelings of the Holy Ghost with my vast, complicated array of emotions over losing Dex. Those emotions were a mixed bag, I can tell you. "It was the best of times, it was the worst of times". Even when the emotions weren't always necessarily negative, sometimes they were just too. much. It was several months before I felt stable enough to fully open my heart to the most innocent Relief Society lesson or sacrament meeting talk without fear of bubbling over and making a public spectacle, exhausting myself in the process.

Last November was a really rough time. I had this day. And this day. And this day. And this day. And, of course, this day. I'm hoping this anniversary is better. It can't be much worse, right? Right? At least this year I think I know a little better what to expect.

Battling Brothers

2010-11-03T03:57:00.000-07:00

Master Tanner has taken on a new padowan. Crew is a rising star at the Jedi Training Academy.

Battle @ Yahoo! Video

In this webisode, Yoda destroys Darth Vader!

Battle 2 @ Yahoo! Video

Crew's Staycation

2010-11-02T03:57:00.000-07:00

So what was Crew doing while his family was whooping it up in California and he was home with Grandma?

Perfecting this!

Crew Crawling @ Yahoo! Video

Ta Daaaaaaa!!!

I called it 4 months ago when I predicted to Justin: "Crew is waiting to crawl until we leave for Disneyland. He'll crawl for Grandma just to spite me." I was only off by about 12 hours. He took his first significant 24-inch journey-of-knees while we were packing, the night before we left. By the time we returned almost a week later, he was dashing around the house like a crawling champion!

By all reports, Crew and Grandma had a lovely staycation together! Grandma claims he was an absolute angel and I'm pretty sure they are bonded for life. She picked up on all of his subtle little nuances that make him so... Crew-like andI know how much he appreciated all of the wonderful one-on-one time she gave him. He didn't pull many naughty shenanigans while the cats were away; he ate for her, slept for her, flirted with her shamelessly. Thank you so much for taking care of our little prince so well, making our vacation possible!

Our house was cleaner than we left it and she met us at the door with homemade banana muffins. If you're looking to rent a grandmother, I can give you her contact information...

Boys Will Be Boys

2010-10-23T03:56:00.000-07:00

Crew babbles constantly, but makes only two intentional, specific, spontaneous, meaningful sounds that we can pick out. He has been making car rumbling noises, as so many little boys do. The other sound? Well, he's been playing with his siblings a lot and I almost wet my pants when I realized what his new sound was: light saber sound effects. I kid you not.

Just CRAWL, Why Dont'cha???

2010-10-13T03:56:00.000-07:00

Crew shuffle-wiggle-crawled this morning. He even moved his legs. Right, left, right, left.

Then he was done.

And I wiped away a proud little tear.

It was a beautiful sight to behold.

Widdle Water Wiggler

2010-10-13T03:54:00.000-07:00

This little critter loves his bath! He soaks the entire bathroom with his splashing antics every time.Blowing bubbles.
Silly little fishy.

Critter Eats

2010-10-12T03:54:00.000-07:00

Critter now eats RICE. Critter eats rice with tiny bites of Apricot Chicken and lots of sauce. Critter eats it very well, very quickly, and screams for more.

Gardner Village

2010-10-11T03:53:00.000-07:00

We braved the rain last week with friends to visit the witches at Gardner Village.Toddler friends, all born within a few months of each other.
And a good time was had by all the crazies.
I wonder if these witches have any vampire friends...

P-P-P-P-P-Progress

2010-10-09T03:53:00.000-07:00

Crew is experiencing success in the nonsensical nightmare that we call mealtime.

This week he branched out successfully to four new textures! Well, they aren't exactly "new", but this week he handled them like a pro!

1. Quaker oatmeal. He ate half a package without puking!

2. Bread. Piece, by little piece, he ate an entire slice of wheat bread this weekend. My friend Melissa and I have long envied the mothers of sandwich eaters. Perhaps there is a PBJ somewhere in my future after all.

3. Pumpkin pancake. He ate almost one whole pancake. No puking, no gagging.

4. Minced spaghetti. He slurped down a good-sized bowl of spaghetti without attitude and most importantly, without "incident".

Tomorrow we attempt apricot chicken. In other news, this kid is going to be crawling any day now. He's sooooooooooo close.

Widdle Fishie

2010-10-07T03:52:00.000-07:00

Why does The Little Prince take so many baths?

a. He generally has food down his neck, in his hair, and coming out of his left ear.

b. He frequently has a funky fragrance that needs freshening

c. To keep him contained and less destructive (out of toilets, garbage cans, cupboards, away from stairs and the underneath of beds)

d. He loves it.

e. So I can see him blow bubbles

f. It's good for his physical therapy because he can't tuck and roll if the water is deep enough. He's more inclined to attempt crawling (or swimming).

g. His nekkid bum is too adorable to keep covered all the time.

h. All of the above.

Comprehensive Eval

2010-10-05T03:52:00.000-07:00

Today Crew had his comprehensive yearly evaluation with Early Intervention. It was done by our PT, which was convenient because she knows Crew extremely well. That came in particularly handy when he refused to do things that she knows darn well he can do: She asked him to put blocks in a jar. He picked up the block, dropped it half way, stared her right in the eye and quickly withdrew the block to toss it across the room. Repeatedly. He is willfully naughty and as sassy as a non-speaker can be!

His adjusted age is 20 months. After the 90-second age-equivalency quick observation by our neurologist last week, there were no surprises this morning. Well, no bad surprises, anyway!

Gross Motor
8-month development. We knew that. Once he is crawling he'll be at 12 months. After that is walking!

Language
10-month development. He's not making any "words" that we can distinguish and he should be making at least a few. It may very well be that we're just not realizing that he's being intentional and specific with some of his babbling.

Self-Help Skills
14 months

Fine Motor
16 months

Cognition
17 months

Social and Emotional
24 months!! If you've ever had the opportunity to bond with my shameless flirt, you won't be surprised. He's always been advanced in that area. The NICU nurses were always amused and bewildered at how much he loved attention and eye contact even at 2 pounds. He has mastered the one-eyebrow lift combined with a half-smirk; he's a dreadful tease. He has absolutely no stranger anxiety anymore; I was actually quite concerned about this, but all camps say that this is completely fine, when taken in context with the rest of his personality and development.

Overall, I'm very very pleased. He continues to qualify for services, big surprise. We'll keep our physical therapist and add a play-skills/speech teacher. His progress is slow, but it is consistent. He is becoming more curious and adventuresome, which will only increase the speed of his development. His months of languid contentment are over and it's really exciting.

Onward and upward!

Never Naysay Normal

2010-10-01T03:51:00.000-07:00

Today I took a trip to the Neonatal Follow Up Clinic for our annual fear-fest. I was dreading our appointment with the neurosurgeon after our last visit. I was dreading the entire experience, actually. I never look forward to spending long hours in a waiting room bursting at the seams with intact twins and triplets.

Today was full of pleasant surprises!

#1. There was only one set of twins and they were 4-year-old fraternal twin girls (not sucker-punch identical boys). We happily, quite painlessly visited for a while.

#2. I met Diego in person!! I couldn't believe it! We've stalked each other's blogs for so long that it seemed very natural to meet Veronica and Diego face-to-face in the waiting room of the follow-up clinic!

#3. I met Grayson! UVRMC people know Grayson because he was the one everyone always referred to during Crew's treatment because they had similar bowel issues. He was Crew's ostomy predecessor. I had seen the name Grayson written on the intake sheet. I looked around the room for the age I suspected he might be now. I picked out a little blondie and went out on a scrawny little limb to ask if this was Grayson, the Grayson. It was! What a small world!

#4. Dr. B. (the neurosurgeon) was far less gloomy this year! She was actually very nearly optimistic for once! She didn't once utter the words "Cerebral Palsy". In fact, she was extraordinarily pleased with his progress.

It has been about 9 months since our last visit and he has progressed about 6 months developmentally. I was discouraged by that, but she was thrilled. She mellowed out and started telling me about the babies she really worries about and all the ways in which he differs. She went so far as to say, "Normal is not off the table."

According to her brief analysis, his gross motor skills are around 8 months. Everything else is between 11 and 14 months. She said that the fact that his "everything else" is ahead of his gross motor skills and that his global development continues to progress steadily (albeit very very slowly), are all very encouraging signs. She emphasized that he is still very young, of course, but that he is showing very positive cognitive signs, even if they are delayed. She is most concerned about his gross motor skills, but she's not even panicked in that department. I told her that my private goal is to have him walking by the time he is 4 and she agreed that is probably a reasonable goal and a sensible expectation. She doesn't anticipate that he'll be any kind of great athlete, but conceded that she could be dead wrong about that.

#5. Our private opthamologist took over the follow-up clinic, so we saw him this morning. Crew is officially discharged from preemie eye concerns. No more follow-ups for his peepers!

#6. We met with the nutritionist. That was was good and bad. It was "Good job, mom. Keep it up." So the good news is that I am seemingly doing all the right things. The bad news is that it's not working and he's still not willingly eating enough to grow. They submitted a request to hopefully have a feeding therapy clinic with the legendary OT Annie in November or December sometime. She also mentioned that it's really normal for these micros to have very poor hunger cues and to be very active physically. That's my Crew!

All in all, it was a really positive day! Then I visited with an old friend who kept Kinley and Tanner entertained all morning. Happy Friday!

I was telling some friends the other day how managing Crew's affairs is an exercise in mental balance. I have so many "specialists" offering their opinions regarding his treatment and prognosis. "Why aren't you worried about this?!! Why are you so worried about this?!! Calm down! Get busy! Relax and give him time! Why aren't you enrolled in this rehab facility? You're doing great! You're not doing enough! You're doing too much!" I spend so much time defending Crew's right to take his time and just be his awesome Crew-self, that sometimes it backfires. For example, we missed the fact that he hasn't grown in 9 months because I was so busy being proud of him for progressing to swallowing without puking and eating solids twice a day. Oops. It's not a perfect plan, but neither is anything else. All I can do is follow my heart, shove the specialists aside when they can't agree, take their advice with a grain of salt, sort through our options carefully, and do the best that I can.

Oh, and change stinky diapers. Right now.

Jeepers Creepers and the Bye-Bye Bottle

2010-09-24T03:51:00.000-07:00

Creeping and Crawling Progress
He is trying! He is trying so hard! He really really wants to crawl. Every time Crew wants to go somewhere: he gets right up on his hands and knees, walks his hands forward, realizes his legs aren't following, then lays down and rolls where he wants to go. That is such huge change! In fact, a few times he has tried to jump forward on his hands and knees, attempting to launch himself. We are getting so close. So close!! He plays on hands and knees all the time now (a rather shocking development). His core and arm strength has improved so much that he can comfortably be up on his knees and balance himself with one arm while he reaches with his other arm. These are really significant improvements.

He is a stubborn little guy and everything always has to be his idea (probably something to do with the y-chromosome in this family). At last he has started to catch the vision! No more tears of rage, no more flinging extensions, no more ghastly meltdowns, no more cheater-cheater pumpkin eater. Last night he allowed Kinley to walk his hands while I manipulated his legs for him. He was paying very careful attention and didn't resist. I hope to have a grand announcement in the very near future!

He's also starting to pull himself up onto high knees when he feels sufficiently motivated. His equipment of choice is the open dishwasher to grab a steak knife.

Bottle? I Don't Need No Stinkin' Bottle!
My children have a history of drinking from bottles long past the age of social acceptability. With Kinley, it was DeAnna who finally mentioned that at 18 months, it was probably time to introduce her to a sippy cup. With Tanner, I knew better but I didn't care. It was less messy, much easier, and he liked it. Phooey on societal norms.

With Crew I had resigned myself to being on the bottle indefinitely. His eating and drinking issues are complicated enough that I have had zero interest in making life more difficult for him. He's not a big embracer of change, if you hadn't noticed. Crew, however, has weighed in on the matter with a different opinion. Suddenly, he much prefers a sippy cup (without an insert) or an open cup. I hold them for him, but he drinks more volume and much faster from these vehicles and he is no longer disastrously messy about it. He can now handle the dramatically increased flow. He drank 4 ounces of chocolate pediasure last night in about 90 seconds from a sippy cup. He even goes so far as to try to drink out of the sippy cup by himself on occasion.

Big changes for our big boy!

The Breakfast Beast

2010-09-15T03:50:00.000-07:00

You would think that after all this time feeding the wiggly worm, my aim would be a little better.

Naughty Never Looked So Nice

2010-09-13T03:49:00.000-07:00

Update Operation Fatness

2010-09-11T03:49:00.000-07:00

Well, Operation Fatness has been through many phases. We keep having to shake things up when something we are doing stops working. Right now I think we are taking a little rest in a stable place. We have found something that works for him and works for me:

Crew has two foods that he loves.

1. Yogurt.

2. A concoction I came up with. It is a blended mixture of 1 can peaches with heavy syrup, 2 bananas, 4 ounces of heavy cream. Blended up it makes 3.5 cups of smoothie mix. That is 152 delicious calories per half cup.

These represent his base foods. You would be surprised what you can hide in these foods.

Some examples of what I can hide in half a cup of yogurt or half a cup of smoothie:
1/4 cup ricotta cheese
2 tbs ricotta cheese and 2 tbs multigrain cereal
1/4 cup oatmeal, 2 tbs cream
half an avocado
bananas
2-4 tbs of "anything else".

"Anything Else"
I keep a separate container of "anything else" and these are generally pureed meats and veggies. He used to happily eat smashed peas for breakfast; now he refuses anything with even the faintest green tint (little toddler-to-be). Right now there is a pureed bucket of chicken mixed with steamed broccoli and butter sitting in my fridge. In the past I've had chicken with spinach and carrot juice; scrambled eggs with cheese and butter; green beans with rice. I've had lots of things.

I'll usually try the stuff I know he doesn't love first. Sometimes he'll give it a good effort for several bites. Once he resists with gusto, I switch it up and give him what he loves. Because I no longer insist that he eat the meats and veggies straight up, he is actually much more willing to try them once in a while. He has stopped being so concerned about what may be coming. He has become more relaxed about eating again. He doesn't immediately smack my hand away and purse his lips if I come at him with a spoon.

Little Boys Cannot Live on Yogurt Alone

He only thinks he is winning. If you think I'm letting him survive on a diet of fruit and fat, you've grossly underestimated my obsessive personality. I keep a few tbs of the dismissed "anything else" in a separate bowl. I'll put a little of it on the spoon and then slather it in yogurt or smoothie. If he won't eat his veggies and meats straight, I'll sneak them in under his favorite foods. I actually have this weird feeling that he knows exactly what I'm doing but has decided to turn a blind eye. I don't really care. He's eating what I need him to eat and he's really happy about it. Tearless meals are a welcome relief.

Sigh... the games we play.

My Way or the Highway
One trick I have also adopted came from the OT that visited us recently. She encouraged me to make sure that we always finished meals on my terms. Being a mean mom anyway, that really suits me. If I see that he is legitimately starting to get full and he is beginning to push his food away, I always make him take "one more bite", so that he knows that I am the final decision maker. It has cut down on a lot of the mid-meal drama.

Palate Cleanser
I have discovered that offering him sips of drink during his meals really helps him wash things out of his mouth and keep him going. I set aside a cup with 1 ounce pediasure and 1 ounce cream (180 cals!) When he starts to slow down and get tired of clearing out his mouth on his own, when the arm starts raising and the brows start furrowing, I try a drink first. Usually it diverts his attention away from his desire to refuse food and we can go back to eating. This happens repeatedly. But back and forth, back and forth, we can usually make it to the bottom of the bowl and always to the bottom of the cup. I hold the cup for him. I also often very gently cup his chin with my hand to help him organize himself and be serious about opening his mouth.

Mostly, we are finding success for the moment. It is still a struggle to get him to take in enough calories, and we have a few ideas in the pipeline, but we are in a much better place than we were a few months ago. And we're far less despondent than we were a few weeks ago.

Dino Critter

2010-09-11T03:48:00.000-07:00

Cracker Kid

2010-09-10T03:46:00.000-07:00

Crew wrestled me for a cracker. I was so happy that he was willing to eat it that I let him eat it even after it fell on the ground. Oh, yes I did.

It's Official. We Have a Toddler

2010-09-04T03:45:00.001-07:00

"Someone" smashed the batteries out of our bathroom scale... rolled around the corner... and threw them in the toilet.

Sometimes Crew Just Needs To Vent

2010-09-04T03:45:00.000-07:00

See?

Testing, Testing, 123

2010-09-03T03:44:00.000-07:00

Crew's lab results are in. NORMAL across the board.

In further good news, his appetite is returning. He actually fought me for a cracker this morning and ate the whole thing.

Snot-Nosed Kid

2010-08-29T03:44:00.000-07:00

Crew hasn't eaten much of anything at all since Monday. At least I understand why his appetite had been decreasing previously. He woke up on Monday with his face encrusted in boogies. I think he may have caught one of our friend's "allergies". We cancelled our PT appointment yesterday. He's been up at night, though nothing like the drama of teething when I thought he could benefit from an exorcism. He's not too feverish today and even ate breakfast. That's an improvement over the last few days. He seems to be on the mend and I have great hopes of sleeping through the night tonight. Fingers crossed.

Some people were really grossed out the last time I posted pictures of Crew with boogies. So I'll refrain this time. I guess. (You're totally missin' out, I'm tellin' ya...)

Boo Hoo Crew

2010-08-29T03:43:00.000-07:00

I really hate Operation Fatness. This calorie-counting, baby-stuffing thing is sending us around the bend. We just finished our third day in a row of really disappointing intake for the pampered prince.

I feel twitchy.

You know, I have a sneaking suspicion that Operation Skinny Thighs might be starting at a very bad time. Stress, frustration, and anxiety make me hungry. In fact, the less Crew eats, the more I fantasize about sausage, egg, and cheese mcgriddles...

Grrr.....

2010-08-28T03:43:00.000-07:00

After a nice week of eating, the little emperor has just finished a second day in full food strike. 650 cals per day is... not even enough to maintain his weight.

Have I mentioned how much I hate counting calories for a baby???

Nice Knees

2010-08-27T21:32:00.001-07:00

Check out that knee action. No, he's not crawling yet, but he is beginning to use those beautiful knees for leverage once in a while. He has even been known to pause over a bent knee now and then. Don't you just want to squeeze him? I would squeeze him myself, but he's sitting at my feet in a seriously stinky diaper. Yuck.

Fat Baby Update

2010-08-27T21:32:00.000-07:00

We backed his calories down this past week from 1150 a day to 1000 per day. We figured he didn't need to gain 10 ounces every week and at 1150 cals per day, Crew was feeling like every meal was Thanksgiving Dinner. That can't be fun. I wouldn't even like that and I think we've pretty clearly established that I'm a glutton. He tolerates 1000 much better but it's still a stretch for him.

When we walked in the door of the pediatrician's office this morning, he warned me not to expect another 10 ounces. I didn't; I was hoping for 5 or 6. I didn't get that either.

Crew gained 2 ounces this week. Considering he had only gained 2 ounces in the previous 3 months, I'll take 2 ounces in a week and shut my mouth about it.

Crew will never be a fat baby. Too bad because apparently fat babies make for cute pictures with puppies. Oh, and we'll never have a puppy either.

You Say Potato

2010-08-24T21:30:00.001-07:00

You may call this a mess. I may call this a mess. Our Feeding Occupational Therapist calls it a "successful exercise in sensory exploration."

Julie brought in a new recruit to our team: Becca. We actually won't be seeing Becca very often because Crew is doing so well. She saw wonderful things while she was evaluating us over lunch. She also made me feel a lot better about my method of persuasion, letting me know that I'm not unduly coercive in my efforts to feed him and that "force feeding" is not an accurate description of what I'm doing. Phew! I've worried about that a lot.

We're settled into Operation Fatness. It's been a... transition, to say the least. We all pretty much hated life that first week; he and I were in tears almost the whole time. Justin, Kinley, and Tanner gave us a wide berth. It was emotionally draining and extremely time consuming. I thought I was losing. my. mind. I am still regularly pureeing in my nightmares, and my tracking spreadsheet is a neurotic marvel to behold, but things are better. Much better.

Balancing nutrition, fluid intake, maximum calories, nutritional variety, appealing taste, and workable textures; researching, brainstorming, planning his menu, preparing, measuring, mixing, remeasuring, dividing, calculating, pureeing, remeasuring, redividing, recalculating, feeding (ak!), remeasuring, recalculating, recording, and cleaning up are no longer the only things I do throughout the day. Did I mention the tears?

The good news is that we now know that he can grow. That means we can pretty much scratch metabolic and genetic disorders off our list. Oh, and Primary's... :)

Scare of the Day

2010-08-24T21:30:00.000-07:00

I let Crew and Tanner play in the playroom upstairs while I was busy preparing my preschool lesson this morning. Tanner played Wii and Crew dumped out toys from buckets, threw blocks across the room, and banged cupboards open and closed. The playroom door was supposed to be closed, but someone went potty and forgot to close the door again.

While I was cutting out an unflattering picture of a man's hairy nose for our body books, I realized that in my peripheral consciousness I was hearing happy little baby chatter much too loud, much too close.

I raced to the stairs and spied a very happy little baby teetering precariously on the brink of death or maiming.

Now, just imagine this picture without the protective arm of an older brother and with four more stairs that were cropped out of the picture, and you'll get a feel for why my heart is still racing.

Sneaky Sneaky

2010-08-24T21:29:00.000-07:00

Favorite yogurt for breakfast... 120 calories

Whole-milk ricotta cheese and half an avocado hidden inside the favorite yogurt + Mickey Mouse Clubhouse... 300 calories.

Of Course

2010-08-23T21:29:00.000-07:00

The good news: We think that Crew has chosen his first verbal word.

The bad news: It's "no". As in, "no, I'm not going to eat it".

Such Naughtiness

2010-08-21T21:28:00.000-07:00

Crew's new schtick is to pull off all the vent covers and drop toys down the chute. He tried to climb into one himself a few weeks ago and got stuck.

Little stinker.

Mobility rocks. So does cognitive development.

Fat Baby

2010-08-20T21:28:00.000-07:00

Thank you so much to those who have been praying for our little guy. It has definitely made a difference.

I have exhausted every bit of creativity and patience in the mommy-arsenal as I have pushed Crew to the limits of his abilities and desires. We have radically changed his diet in both variety and quantity. It has been extremely difficult for him and very stressful for us but we know we are doing the right thing by him.

I drove him to P-town this morning for a spontaneous voluntary weigh-in; I needed some sort of validation on our efforts. My nerves may be in tatters and my house in shambles, but my baby has gained 10 beautiful ounces in the last 7 days!

And that makes it all worth it.

Excursion

2010-08-18T11:49:00.000-07:00

Crew enjoying the fresh air, even though it was also very windy air.

Tales of the Tiny Tyrant

2010-08-17T11:49:00.000-07:00

How can a child of mine not LOVE eating? It's just unnatural.

In case you can't tell, I've been a bit of a headcase about Crew's food for the last several days. Monitoring your infant or toddler's intake feels so wrong. It goes against all of my mothering instincts: if the child is hungry, feed him. If he's not hungry, leave him alone. Apparently that only works if they actually continue to grow on what they are willing and able to eat. Ah... the fine print of the parenting license.

Sigh...

And oh, baby, yes, he senses the stress oozing out of my every spoon-wielding pore. I try to put on my "chill" face; I laugh lightheartedly and offer him tasty bites in my nonchalant voice, pretending I couldn't care less whether he eats his breakfast or slimes me with it. Unfortunately, I'm not fooling him. At all.

Perhaps tomorrow will be a better eating day. He did so very well on Saturday and Sunday. Fingers crossed.

Why the crisis attitude? Because we have deadlines. Deadlines, I said. If he doesn't eat better and/or start gaining weight immediately, our life is about to get turned even more upside down. We'll be diagnosed with "failure to thrive" and we'll be referred to Primary's for further intrusion, opinions, procedures, etc. Say what you want (but not on my blog and not to me); I'm desperate to avoid that scenario.

At this point, no one really thinks he has anything genetically or metabolically wrong with him. We honestly think he is simply still unable/unwilling to eat enough calories to grow. (The math says he needs about 900-1000 per day and he takes in about 700-800--P.S., counting calories for babies is stupid and I hate it.) But why he doesn't eat enough is a mystery. He doesn't have reflux. He seemingly enjoys eating (most of the time). He can self-feed on occasion. Aside from some texture issues and taste preferences, there is nothing obvious inhibiting him from eating "enough". He's a tiny guy with a tiny belly, and he gets full. And eating is hard work for him. We're actually extraordinarily lucky that he does as well as he does. And he has improved greatly over the months.

If the genetic and metabolic tests come back ugly, it's a different ballgame. If we can successfully bump up his calories and he still doesn't grow, I'll be looking anywhere for help (even Primary's). If his electrolytes and kidneys are off, we're over our heads. But if our suspicions are correct, he's so borderline with his issues and so close to his ideal caloric needs that it seems really extreme to start involving GI's and Primary's and a comprehensive team of "failure to thrive" specialists. I don't want to be put in any kind of intrusive treatment pipeline if I can help it.

PT Julie came today. I was in tears when she arrived because Crew called a food strike this morning. She's bringing out an OT that specializes in eating issues to observe him. I welcome her. Gladly. We're also due for our neonatology follow-up clinic appointment and we have a nutritionist and an OT there. Why is that different and more palatable than Primary's? It just is.

I need him to grow. STAT.

Am I overreacting? Absolutely. It's part of my charm. Ask me if I care.

Comments disabled. So I guess you can't ask me if I care after all.

The Little Stinker Ate

2010-08-17T11:48:00.001-07:00

For PT Julie.

Just like he ate for Kinley last night.

Starvation Roller Coasting

2010-08-17T11:48:00.000-07:00

Crew has had three amazing eating days in a row. I've been so relieved and hopeful, fantasizing about our next weigh-in.

Today.... today....

He drank 4 ounces at 2 a.m. He won't eat or drink anything now.

Nothing.

Nada.

Sigh... please, little guy. Eat. Something.

I don't know if he's sick. Or sick of eating.

Growth and Stuff

2010-08-14T11:46:00.000-07:00

Justin took Kinley and Tanner down to a BYU football scrimmage and then miniature golfing. It's a good thing that I plied them with ample sunscreen this morning. My only regret is that I have no pictures of their adventures together.

Crew and I have spent some mommy-critter alone time discussing growth goals. I think we have come to an understanding. We have each committed to bringing a more adventuresome and creative spirit to the table. Let's hope it shows in the thighs. His, not mine.

I said, "Crew, you are awfully sweet and awfully cute, but it's time you weighed more than the average four-month-old". Yes, you read that right. An average 4 month old or a very small 7 month old.

He is as tall/long as an average 13-month old or a very small 18-month old. That's reassuring at least. His head is also small, but it's growing on a nice, steady curve. He's a long, lean, green bean. P.S. green beans have practically no calories. I just thought I'd mention that.

Dr. Doom

2010-08-13T11:46:00.000-07:00

2.5 ounces.

That's what Crew has gained in the last three months. I'm just glad he hadn't pooped yet this morning before his weigh-in.

It's a very long, complicated story that I don't want to get into right now.

The Gist:
He has three months to start growing before our doctor ships us to the "Failure To Thrive Clinic". Awesome, huh? Not for Global FTT, just the isolated weight gain failure.

In the mean time, we'll be doing blood tests to rule out thyroid dysfunction, liver problems, cystic fibrosis, absorption concerns, and other genetic disorders.

I have a headache.

We're increasing his calories. Again. In ever-more-creative ways. Balancing maximum caloric intake, hydration, nutritional content, volume tolerance, taste preferances, bowel considerations, and texture issues is more complicated and frustrating than it sounds. I promise.

Snoozer

2010-08-09T11:46:00.000-07:00

The Favorite Dolly fell asleep in his sister's arms. She laid him on the floor and tucked him in with a blanket and a stuffed puppy.

Brothers Go Fish

2010-08-06T11:45:00.000-07:00

Normal Naughtiness

2010-08-06T11:44:00.000-07:00

Odd, I don't remember being quite so amused when Kinley and Tanner wreaked comparable havoc in their heyday...
Our entire family really gets a thrill out of watching Crew do things that "normal babies" do. Having him take the wipes out of the bucket one at a time was cause for celebration and a phone call to Daddy.

In further naughty cognitive development, Crew has really taken a shine to reaching for the wall socket ever-so-slowly when he knows that Daddy is watching. He raises one eyebrow and wears an unmistakably mischievous grin as he sneakily leans toward the forbidden zone.

His personality continues to expand in happy, increasingly independent ways. He is soft and squeezy and sweet.

2010-08-05T11:43:00.000-07:00

On Pioneer Day weekend, we took the children to Temple Square in downtown Salt Lake.

My favorite people! Kisses!The grounds were sensational. I took dozens of flower pictures.

Tender Tanner

2010-07-29T11:42:00.001-07:00

This morning while I was tackling last night's dinner dishes and sopping up a breakfast disaster, Tanner was eating a snack at the table and Crew was sitting on the floor crying from loneliness, neglect, and exhaustion.

I had already told Tanner that he could play Wii while I cleaned up the kitchen. Tender brother that he is came up with a win-win-win solution.

Tanner: Mommy, when I'm done with my snack, can Crew come with me while I play Wii? He seemed really happy when he was playing with cars in the playroom yesterday.

Wow, he's sweet. And "sweet."

I decided to let Crew go nuts in the playroom with Tanner and they were both very happy indeed. Tanner with Lego Star Wars and Crew with his cars. Within 40 minutes, exhaustion overcame him and I scooped up the tiny floor sleeper and put him into his crib.

Morning Milestone

2010-07-29T11:42:00.000-07:00

Guess who I found sitting up in his crib for the first time this morning????

Too bad it was a surprise awakening at 6:15...

In related news: he also fed himself about 1/3 of his bottle this morning. I held him, of course, and he dropped the bottle a few times. But when I handed it back to him, he tossed it in his mouth and held it there for a respectable length of time. Good boy.

He Sits

2010-07-25T11:41:00.000-07:00

It's official. He can now sit himself up whenever he feels like it! Yay!!! He is also rolling around the house, from room to room, carpet to hard floor and back again. Mobility makes us smile.

More Haiku For You

2010-07-24T23:40:00.000-07:00

Crew retched once again
Even with puke out his nose
He is very cute

******

After cleaning puke
Daddy steps in someone's pee
He is not happy

A Crew Haiku

2010-07-24T17:39:00.003-07:00

Need more calories
Feed Crew more than he can stand
Puke is not awesome

Matchy Matchy and the Road to Healing

2010-07-24T17:39:00.001-07:00

There are many reasons that Crew and Tanner have never been dressed in matching outfits. One is that they have always been so far apart in size that it hasn't been much of an option. The other reason is more emotional.

When I was in the hospital after the birth of Dex and Crew, one surprisingly intense anxiety I endured was the awful anticipation of facing the matching outfits that we had bought or had been given to us for our boys. Having to put Dex's clothes away was extremely difficult. It was important to me that I do it myself, but it wasn't easy. In fact, in a few cases I couldn't even bring myself to dress Crew in certain outfits because I had imagined too often how they would look together in their matching or coordinating duds. I eventually had to tuck Crew's outfit away too, unworn, unable to overcome my demons.

Kinley and Tanner have shared a room since the day we brought Tanner home. It's worked for us. Crew, on the other hand, has had his own room since he came home from the hospital. Last year when we moved to our new house, we discussed our future bedroom arrangements. We figure that eventually Kinley will have her own room and the boys will share. The first time that it occurred to me that Tanner and Crew will be sharing a bedroom, I cried. A lot. I always expected Crew to share a room with his brother... just not this brother.

A few months ago, I bought matching pajamas for my boys. Ever since they ran across them in my bedroom, Kinley and Tanner have been begging me to dress the brothers in the matching pajamas and take pictures, totally oblivious to the emotional landmine they were asking me to navigate.

I've been putting it off, of course. Nevertheless, with much pressure from Kinley this week, I squared my shoulders and did it. It wasn't nearly as hard as I had feared and they look awfully cute, don't you think? I only shed one solitary little tear.

These are the beautiful brothers we have to work with in this mortal realm and they are treasured blessings. It's not weird to dress them in matching or coordinating outfits and it's not a slight to their missing brother. Dressing them in matching outfits is one tiny and begrudging way of expressing acceptance for who we are. And who we are not.

One more demon defeated.

The Dinner Darling

2010-07-21T17:38:00.000-07:00

Will someone give that kid a bath?Would you believe that he was not feeding himself? He made this delightful mess while I was spoonfeeding him. It actually got worse before the end.

Mommy's Little Hero

2010-07-20T17:38:00.000-07:00

Our Baby SITTER

2010-07-15T17:38:00.000-07:00

Crew continues to make great improvements in his gross motor skills. In an exciting update: Four times in the last week he has sat himself up all by himself, going from a laying down position and shoving himself up to his bum. I never realized what a huge accomplishment that is for a child until my child didn't do it. We've been working really hard on it for several months and it looks like he is about ready to make this independent transition skill a permanent part of his life!

Pretty soon we are going to have to lower his crib mattress down from the "newborn level". Last week I had to raise the side for the first time ever, just in case he figured out how to sit himself up and lean over the rail. He hasn't sat himself up yet in his crib, but I have a feeling it's coming soon. I've never put that siderail up before. He's never needed more than a 4-inch barrier to keep him safe, contained, and trapped. It's kind of exciting to see him being all risky all of a sudden!

He has also started rolling himself over to light sockets and poking his little fingers where they don't belong! We busted out the socket covers this weekend.

We're baby proofing! For CREW!!! I'm so excited!!!

As far as crawling, he continues to take tiny but important strides toward that end. One thing we do is place a toy off to his side and just out of reach. We've been encouraging him to pivot up onto his knees to get his toy and he now seems to be more comfortable on those pesky knees than he has been in the past. His strength continues to improve and he will now pivot right up onto those knees without assistance, returning quickly to sitting position before we can do anything really crazy, like make him try to crawl or something.

His rolling skills have exploded in the last month or so. He tumbles around the room as fast as lightning, cracking us up in the process. It took him a long time to accept rolling as a viable mode of transportation, but he's now definitely hooked on the independence that rolling has brought into his life. He still only rolls one direction, but it seems to work for him. He spins and pivots all over the place, venturing off the carpet now and then.

We're super proud of our little guy. He works so hard for his accomplishments and has such a happy disposition (when he isn't teething). Along the way, his conquering spirit continues to manifest itself in so many ways.

Love you, Crew.

Beach Bums

2010-07-07T07:00:00.000-07:00

Crew doing a little sunbathing.

Crew thought the sand was fantastic. He tossed it all over the place, getting it in his hair, his ears, and all kinds of other interesting places. He had a good scrubdown before his nap.
I like summer. Who knew?

Independence Day

2010-07-06T06:59:00.000-07:00

Crew love love loved the lights and sounds of the holiday weekend! Don't let the face fool you. He has an oogie on his finger.

Happy Independence Day and God Bless America!!

Nonverbal Communication

2010-07-03T07:32:00.000-07:00

I am writing this with smashed peas and oatmeal in my hair. Tiny Tyrant didn't like his breakfast this morning.

Though really, who could blame him?

Weirdly, it's usually one of his faves.

Not. today. Clearly.

Life's Simple Pleasures

2010-07-01T06:58:00.000-07:00

Perhaps if he can't have a puppy (and believe me, he can't have a puppy...)
I could use the container drawer for motivation... Go, Crew!

I Looked Out The Window

2010-07-01T06:57:00.000-07:00

And what did I see?

Some super cute kids "crew-zin" the neighborhood...

Petting Crew Too

2010-06-26T06:57:00.000-07:00

Crew wasn't the only one that adopted a pet during our visit. Baby Z thought that Crew was very soft and fluffy. We spied him positioned behind my guy on a number of occasions. Baby Z was born about 6 weeks after Crew, in December of 2008. His mama hobbled down to the NICU to visit our tiny critter while she was recovering after Z's birth. Look at our big boys now!No, he's not naked.

Puppy Love

2010-06-26T06:56:00.000-07:00

We spent a lovely day visiting with one of my old mission companions this week. Crew was very intrigued by their dogs, Tiera and Zero. He wasn't even a little bit scared. He even kissed the puppies a few times, right on the schnoz, but I missed those pictures-- mostly because I was busy dry heaving and sanitizing his tongue with a wet wipe.
Oh, boy, those ears are tuggable. What a patient pup.
Zero apparently has a fetish for bare feet. Wasn't Crew in luck? His very own "petting zoo".

Perhaps getting a dog would help motivate Crew toward crawling.

Portrait of a Lady

2010-06-25T14:04:00.000-07:00

Someone has a big sister. As you can see.

Obedience

2010-06-23T14:03:00.001-07:00

Crew hit another great milestone tonight.

As background information, Crew only rolls one way: to his right. He'll always pivot to position himself so that his destination is to his right. Also, I serve as his personal chauffeur around the house -- and around the world, actually.

Tonight...

While I was changing him into his pajamas, he rolled away giggling, quick as lightning. When he was several rolls away, I held out my arms and asked him to come back to me. He was on his belly at this point and he reached out his arms for me to come fetch him, as I expected he would. I told told him "no" and continued to sit on the floor with a smile on my face, telling him to come back to me.

When what to my disbelieving eyes did he do?

He pivoted himself all the way around and rolled himself back to me. No tears, no confusion, no frustration, no inability, no struggle.

Big. Boy.

Big. Sweet. Obedient. Clever. Boy.

Justin and I were kinda stunned. And totally thrilled.

Crew's PT "Journey"

2010-06-23T14:03:00.000-07:00

They say that the road ain't no place to start a family.Right down the line it's been you and me
Lovin' a music man ain't always what it's s'posed to be
Oh, boy, you stand by me!
I'm forever yours... faithfully.
PT Julie gives us all a lot of glee. (Is anybody getting this or am I only clever in my own head?)
Anyway you want it, that's the way you need it! Anyway you want it!
Nah nah nah nah nah nah!

Rodeo Kids

2010-06-22T14:02:00.000-07:00

We introduced our children to the wonderful world of rodeo. They are half-cowkids, after all, thanks to their rancher daddy. I'll confess I found the whole farm boy thing very alluring.

Cowgirl Kinley planned out her outfit weeks ahead of time.My favorite moment of the night was at the gates. When we got in line I said, "oh no! Justin, I don't see any credit card machines! I don't think they take credit cards!"

He smiled and said, "I brought cash."

"What? You have cash?"

"Oh, Megan," he said with a twinkle in his eye.

(wait for it...)

"This ain't my first rodeo."

Groooooooooooan.
Giddyap!! Ride em', cowbaby!
Some things are just insane.
But very cool.
We had a great time. See?
Kinley thought the tie-down roping was barbaric and kept saying "the poor baby cow!" However, she now has her heart set on a career in barrel racing and breakaway roping. All other possible vocations have been crossed off the list. Tanner's favorite rodeo moments were when the naughty bulls wouldn't go back in their corrals. He thought that was just too funny. We stayed to the bitter end, clear through the final bull ride, feasting on soft pretzels and churros. It was the first of what I know will be many many rodeo nights.

Yee-haw!!

"You May Say..."

2010-06-22T14:01:00.000-07:00

I'm a ~~dreamer~~ screamer, but I'm not the only one..."

Thank you, Mr. Lennon.

This is Crew yelling at us. He is very loud lately. Cute, but loud.

The Hydration Situation

2010-06-20T14:01:00.000-07:00

Well, Crew has discovered something other than Odwalla that he will drink with enthusiasm.

His own bathwater.

Lovely.

NICU Reunion

2010-06-19T14:00:00.000-07:00

If you can't go to the NICU reunion, sometimes you have to bring the NICU reunion to you!

The NICU is a weird place. You fall in love with the babies that you "meet" there, though you often know very little about them. Because of privacy issues, medical fragility, germ containment, grief concerns, the tenuousness of life, unexpected transfers and discharges, the insanity of the NICU roller coaster, and other potential social land mines , it can be challenging to make "friends" in the NICU.

But friends we did make! I met some lovely mommies during our NICU journey and we have all become friends through the wonderful world of blogging. Our babies were all at the same hospital, preemies born within 2 months of each other. In fact, most of the babies were at both hospitals together, if you can believe that. Darbi was the only one of the group that we had seen in person since discharge... until this week!

Meet: the miracle critters!

From left to right: Whit, his twin sister Reese, Crew, Darbi, and Paizlei.

And another photo op, because you can never have too many with this much cuteness under one roof.
This is Paizlei. She was born at 33 weeks. She's a darling little doll, the mover and shaker of the group. She didn't spend any of her NICU days at Primary's, but we don't hold it against her, ha ha! I met her mother, Heather, in the parent lounge at UVRMC between pumping sessions. I had always been curious about the little baby so memorably named "Paizlei" and was glad to finally find out about this little mystery girl!

Heather found me online after their discharge. She also found Kelli (Reese and Whit's mom) and put us back in touch with each other. She is also responsible for spearheading this awesome NICU reunion. We held it at my house because I love to cook and I make no bones about it. Mmm..... ziti. Heather's family lives a few hours south of here, so we are very grateful they made the sacrifice to come up to spend a memorable afternoon with us.
This familiar little face belongs to Darbi. Darbs has been Crew's longtime girlfriend, and first love. Crew and Darbi had neighboring isolettes at Primary's during our final stretch. We couldn't believe the bizarre coincidence that landed us right next to the little 23-week miracle that Crew had given up his Giraffe isolette for just a few weeks previously in another hospital.

We loved Clint and Audrey immediately, but we were convinced our friendship would be short-lived (at best) once they were eye-witnesses to the crazy-woman carnage and havoc I wreaked at Crew's bedside all over our surgeon. Fortunately, they found the colorful and dramatic demonstration of my fury to be very entertaining. And the rest is history.

This sweet little girlie is Reese. She and her twin brother Whit were born at 32 weeks. I met their mommy Kelli at Primary's when Reese had been transferred up there for surgery. We met in a parent luncheon and had the twin connection as well as the UVRMC connection. Mommy and Daddy were split between both hospitals and our visiting shifts rarely overlapped at either hospital. It's a miracle we were even reconnected again after discharge. Thanks again, Heather!
This little tiger is Whit. I met him when we returned to UVRMC the first time, when we were between major surgeries, around Christmas time. He was still waiting for his sister to return from Primary's. I kept sneaking little restrained peeks at him, around the corner from Crew. They put you in these group care rooms together and then expect you to constantly avert your eyes from the other little babies in the room. It's not always possible, especially when you feel a connection to the little miracle.
This is Kelli, Reese and Whit's mom. She is lovely, courageous, sincere, and brave; she stuck loyally with me through the dark "I hate intact twins and their moms" moments, reaching out to me boldly to offer her love and support at a time when other twin moms would have justifiably shied away and tried to blend into the background. She also makes an obscenely delicious angel food cake fruity dessert thing that I can't stop thinking about...
Paizlei and Crew playing together
The NICU Reunion Obligatory Group Photo.
How did you think we took that picture? Timer? Nope!!! We called in our own photographers.
This is Tate, Whit and Reese's older brother. He is actually a few months younger than Tanner, but Kinley has adopted him as her new best friend. They have a love for animals and perler beads in common. What more do you need?

It was a spectacular play date. All of these little miracles have already overcome so much in their brief little lives. It's so good to see them all looking so healthy and happy. I love these babies and I love their mommies. I truly value the support they have been to me along the way. And, while I'm at it, I'll mention that I'm really grateful for blogging and the strength it has been to me over the years and the unique relationships that have come into my life because of it.

The end.

Summer Visitors

2010-06-18T13:58:00.000-07:00

This week friends came to play!!

These two are longtime buddies. Those old pictures still crack me up! Oh, Mac!! Those cheeks are just so kissable!!

Temple Trip

2010-06-15T07:57:00.000-07:00

Today we picked up a Hot-N-Ready pizza and picnicked on the grounds of the Oquirrh Mountain Temple.

Best Laid Plans

2010-06-14T07:56:00.002-07:00

I came home tonight and parked our van in the garage. I left the garage door open because I knew I was going to be leaving again in half an hour.

A few minutes later Justin came home and wanted to close the garage for privacy; he hates when I leave it open. As he was closing it, he noticed that Kinley left her scooter out. He stopped it from closing completely, bringing it down 1/4 - 1/3 of the way and hollered for Kinley to put her scooter away. He closed it just enough to make himself feel marginally better, but not enough for any real privacy and certainly not enough for a harried mom in a hurry to notice that the door had been messed with.

Anxious to get to the library exhibit, we rushed into the van 10 minutes later.

Do you see where I'm going with this?

Sigh...

Minor scratches on the roof rack and a gash on the top back end. Justin was able to bend the garage door mostly back into place. It could have been worse. A few more inches and it would have taken out our back windshield. A little more speed and the door would have been mangled beyond Justin's Hulk Powers to realign.

The best part was that I was driving a little neighbor girl to the library. Her parents were standing outside (staring in horror) when I crashed into the door. They nervously watched me drive away with their precious cargo while I waved and shouted enthusiastic assurances that she was, in fact, in capable hands, despite any perceived evidence to the contrary.

To cap off my super awesome night, my seat during the Wacky Waves Mad Scientist program was directly across from two identical twin boys that looked to be about Crew's age. I have been lucky enough to avoid the silver-bullet-to-the-heart combination: identical twin boys until tonight. And to have them be so close to Crew's age was particularly dreadful. I couldn't keep myself from gaping. Their mom looked so zen and happy.

Blech. What a night.

I'm going to bed.

Weigh-In Update

2010-06-14T07:56:00.001-07:00

I took our tiny terror to the pediatrician this morning and weighed him on their more sensitive pediatric scale. He has actually put on 8.5 ounces since the last time he sat on it!! Yay!! Half a pound in a month!

Sigh... I am motivated to continue the bitter butter battle.