Monday, November 29, 2010

Breaking News

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

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

Sunday, November 28, 2010

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.

Saturday, November 20, 2010


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.

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!

Tuesday, November 16, 2010

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.

Thursday, November 11, 2010

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!

Wednesday, November 10, 2010

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!

Sunday, November 7, 2010

Call Me Crazy


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...

Wednesday, November 3, 2010


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

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

In this webisode, Yoda destroys Darth Vader!

Tuesday, November 2, 2010

Crew's Staycation

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

Perfecting this!

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...