Saturday, December 26, 2009

My Cute Kid

"Why so many pictures of Crew? Don't you love your other children just as much? Don't you think they are also blog-worthy? Don't you find them to be deliciously adorable as well?"

The answer to that is YES, but they have started to become cockroaches when the camera comes out, scattering when I pop the flash. They are starting to take after their father in their aversion to being photographed. Little stinkers. Never thought I'd see that day. Temporary setback, I hope.


At least one of my children won't deny me! Isn't he so cute???

Friday, December 25, 2009

Merry Merry Christmas!

My kids rose to the tippy top of the Naughty List in the final days. Nevertheless, despite my many threats, I did not cancel Christmas.

"Lemme sum up":

We have a Christmas Eve Picnic tradition, passed down from my side of the family. Growing up we enjoyed all types of exotic finger delicacies, including liver pate and many different fruits, meats, cheeses, crackers, and dips. Alas, the unrefined palates of the Youngest Among Us demanded dino nuggets and bagel bites this year. (Fortunately, I happen to dig dino nuggets and bagel bites.) We then read the Christmas story from Luke 2, watched The Nativity Story, and sang carols. Nothing but the good carols; I vetoed all songs about Santa and his reindeer. He has dominated too much of our holiday season this year!

We put the anxious little imps to bed and followed them shortly after. The crock pot kept us up much of the night, jiggling now and then with our Christmas roast, taunting Justin with it's moist deliciousness. Crew got himself stuck sideways in his crib at 6:30, so we gave him a snack to calm the hysteria and put him back to bed. The big kids lasted longer in their beds than I expected. We didn't see the whites of their eyes until 7:18!

It was an awesome Christmas morning! The kids were thrilled with their loot, but most of all, it was wonderful to have our Tiny Prince home with us. Last year I would have given anything for him to wake me up at 6:30, 5:30, 4:30, or 3:30 from his own crib. It was almost perfect. We were just missing one more little Christmas critter. Love you, Dex.

Remember this?

Tanner comparing stocking goodies with Kinley.
Rocky the Robot Truck has met expectations and serves as the prize of the morning.
Kinley enjoying a yummy breakfast of peppermint patties.
She has been asking for a locket since December 26th of last year. She loved it! A silver heart-shaped locket with a pink butterfly. This was her favorite present.
Crew fully embraced the simple pleasures of Christmas morning. This little table has legs that we'll add once he starts standing up. Santa filled his stocking with new 6-9 month pajamas so that he can stretch his legs out! Wahoo!! He's getting so big!
He looooooooves it.
Merry Christmas!!
I hope this holiday season brings peace, love, and joy to each of your hearts. Because of my Savior, I know I will be reunited with my Dex some day. Mary must have loved Jesus so much and I know it must have been so hard to watch him suffer throughout his life. During this next year, I will strive harder to become more like Him. Some day I will thank Him face to face for everything He has done for me, including the individual tender mercies he places in my path on occasion, just to remind me that He knows me and loves me. I miss Dex so much, but he is one blessed and lucky spirit to be spending this Christmas, as he has every Christmas, with the Savior Himself.

"I see the countless Christmas trees
Around the world below,
With tiny lights like heaven's stars
Reflecting in the snow.

The sight is so spectacular
Please wipe away that tear
For I'm spending Christmas
With Jesus Christ this year.

I hear the many Christmas songs
That people hold so dear
But earthly music can't compare
With the Christmas choir up here.

I have no words to tell you
The joy their voices bring
For it's beyond description
To hear the angels sing.

I know how much you miss me,
Trust God and have no fear
For I'm spending Christmas
With Jesus Christ this year.

I can't tell you of the splendor
Or the peace here in this place.
Can you imagine Christmas
With our Savior, face to face?

May God uplift your spirit
As I tell Him of your love
Then pray for one another
As you lift your eyes above.

Please let your hearts be joyful
And let your spirits sing
For I'm spending Christmas in Heaven
And I'm walking with the King!"

By Wanda Bencke

Thursday, December 24, 2009

Merry Christmas To All...

And to all a good night!

The Beast

It may be high-maintenance and clingy, but it's awfully cute.

Saturday, December 12, 2009

Diversity of Taste

Crew is making such good progress in a lot of areas. He has started opening his mouth more willingly and purposefully at mealtime. He is finishing the entire bowl instead of giving up after 8 bites. If I'm too slow on getting the spoon to his mouth, he has started to reach for the spoon. Most excitingly, he is willing to eat solid food twice a day now, so hopefully he will start to gain weight a little more rapidly. We hope to get up to three times a day soon, but we'll happily accept twice!

Last, but not least, he will now eat food with something other than rice cereal in it! He will now accept infant oatmeal mixed in with his fruits and veggies. He remains picky about the consistency and temperature, but this is still progress! Steak and potatoes are just around the corner! I can feel it!

Friday, December 11, 2009

Boys Will Be Boys

Crew has always been a little sketchy with his willingness to sit upright for any length of time. Tanner is the very best PT tool that I have available. Crew sat for 45 minutes (about 42 minutes longer than his average sit-time) watching Tanner play with his car ramp. Boys and their vehicles! Whatever works!

In other Crew updates, he will now eat a fruit puff without choking, gagging, or spitting it out! For those unfamiliar with "fruit puffs", they are roughly the size and consistency of a Cheerio. First, I break it into three tinier pieces. Then, I slip one into his mouth, tucking it to the side so that it has time to get mushy before it reaches the back of his throat. Putting it straight into his mouth is a recipe for choking. He occasionally makes chomping motions with his jaw, which is very exciting. He ate probably 6 fruit puffs this morning, which means he conquered the puff 18 times before getting worn out.

We have so many things to be excited about this Christmas!

Monday, December 7, 2009

Crew and Darbi Sitting in a Tree

Crew loves his Darbi. And Darbi loves Crew. We were lucky enough to spend some time with our little Diva last week."Hello there, pretty girl."
"If you don't mind, I'm going to relieve you of that hairbow and oxygen tubing.
"No thank you, kind sir! I need my oxygen to breathe and my hairbow for fanciness!"
The sitters.
"Wanna play? You have such soft skin. I hear your mommy makes her own milk, all yummy and full of fatness. I'm so jealous."

"Don't you worry! I like my men tiny and wiry! We can share diapers!"
Darbi loves me too.

Kinley made Darbi a beautiful Christmas card that you can see here. I just love that she drew a picture of Darbi, complete with oxygen.

A Father's Grief

I love you, Justin. And thank you.

A Father's Grief
It must be very difficult
To be a man in grief,
Since "men don't cry"
and "men are strong"
No tears can bring relief.

It must be very difficult
To stand up to the test,
And field the calls and visitors
So she can get some rest.

They always ask if she's all right
And what she's going through.
But seldom take his hand and ask,
"My friend, but how are you?"

He hears her crying in the night
And thinks his heart will break.
He dries her tears and comforts her,
But "stays strong" for her sake.

It must be very difficult
To start each day anew.
And try to be so very brave-
He lost his baby too.

Author Unknown

TTTS World Awareness Day

World TTTS Awareness Day
TTTS is a placenta-sharing disease that affects 10-15% of identical twins in utero. It can cause severe damage and/or death to one or both of the babies. With proper diagnosis, there are options that can be put in motion that may dramatically improve the prognosis and future of your precious twins. With treatment, both babies often thrive and go on to live healthy, normal lives. Other times, only one baby survives longterm, with varying possible complications and conditions. In some cases, even surgery cannot save either of the babies.

There are no guarantees even with intervention/surgery, but a proper diagnosis will certainly improve your odds. The fact that Crew was saved in the nick of time without a proper diagnosis is nothing short of a miracle. When one of the babies pass away in a shared placenta situation, catastrophic medical events follow that the surviving baby cannot overcome. He would have been gone just a few minutes later, as evidenced by the fact that he was born without a heartbeat. It still humbles me to realize how close we were to losing him too.

If you discover that you are pregnant with twins, it is crucial that you determine whether the babies share a placenta. It is difficult sometimes to tell the difference between one placenta and two placentas that have merged together to look like one placenta. If they share a placenta or if there is any question about it whatsoever, you should see a perinatologist to be monitored closely for changes and to determine your options.

TTTS is a ballgame changer and is not to be trifled with.

For more information, please visit

And a warm shout-out to my beloved fellow TTTS mommies. You know who you are and how much you mean to me.

"WORLD TTTS AWARENESS DAY is an international mobilization effort created by The Twin to Twin Transfusion Syndrome Foundation to increase awareness of the #1 problem facing multiples. It is crucial for women to get an ultrasound in the first trimester to identify multiples and then to determine whether there is one placenta or two. Women must learn the warning signs of TTTS, the 15 questions to ask at each ultrasound, and the available treatment options. World TTTS Awareness Day is about empowering parents and is filled with messages of Hope, Help and Encouragement. Your babies can make it and be healthy. Don't ever give up. Please, Get Educated, Get Ultrasounds, Ask Questions, Get Treatment and Get Involved! This day is also a remembrance day for all the babies who have had TTTS. Candles will be lit tonight across the world during the vigil and messages may also be left for your babies through lighting online candles."

Saturday, December 5, 2009

Seat Renovations

When our PT Julie came this week, we spent most of our session remodeling Crew's high chair with foam inserts. We carved out a bum slot in a block that is raising him up a little; we've inserted blocks on either side of him at the hips, and put a thin backing on. See how nice and tall he is sitting! He's a bum-scooter and a slumper by nature, but these new additions are helping him sit more properly.

"Hi, Mommy! I love it! I am such a big boy!""OK. That was fun for 5 minutes, but now I'm tired and I want you to pick me up."
"You. turned. your. back. on. ME!!! How many times have I told you not to do that?!"

Friday, December 4, 2009

Tasty Feet

Wandering through the world lately with my warped perspective has been very thought provoking. It makes me wonder how many thousands of times I have said something "normal" and "innocent" that has taken someone else's breath away, maybe even made it to someone's therapy-blog or support group message board. Since we all know how much I love to talk, I suspect the list of offenses is pretty extensive.

Then again, when I say "it makes me wonder", please, oh please don't take that as an invitation to enlighten me. I prefer the bliss of ignorance.

To all those who have had to start a conversation, post, or email with "you'll never believe what someone said to me today to rip open a wound they didn't know about" because of something I have said in ignorance, I am so sorry.

When I'm not swimming in my own pool of self-absorption, I kind of like my new, more accepting frame of reference. The memory of my first trip to the grocery store after the boys were born is still fresh. Kinley and Tanner were being so naughty and I didn't have the energy or the heart to scold them because I knew they were grieving in their own way and dealing as well as they could under the circumstances. I will never forget chanting in my head "please don't be mean to us. Please don't be rude to us. Please don't stare at us. Please don't roll your eyes at my kids. We are barely holding on today."

I remember looking around, feeling so self conscious and wondering how everyone else looked so normal when my world had just fallen apart. While I appeared stable on the outside and had my stable moments on the inside, I wanted to hang a sign around my neck that said, "please tread very carefully. My baby just died and my other baby is fighting for his life. I take no responsibility for how I may respond to unanticipated additional stress."

Now (when I'm not wrapped up in my own re-erupted grief and scratchy blanket of hypersensitivity) I look at the other people at the store a little differently. When someone seems brusque or sad, it makes me wonder. I'm not sure they really want me speculating about their personal life, but I can't help it. Did they lose a child? Did their spouse leave them? Are they struggling with infertility? Did their spouse die? Are they in foreclosure? Is someone they love in drug rehab? Is there a scary medical diagnosis in their circle? Did they lose their job?

You just never know.

Thursday, December 3, 2009

Brotherly Love

Last night I was going to write about the fact that Crew only laughs for Tanner. No matter what Kinley, Justin, or I try, we can only get him to offer up gigantic, silent smiles. But Tanner? Well, big brother can coax a belly laugh out of him with very little effort.

I was sitting at the table with Kinley and Tanner this morning, pondering this phenomenon over breakfast, when Crew woke up and started the wind-up whine in his crib, as he does every morning. As I tried to gulp the rest of my cereal down as fast as I could, the tone of the whine suddenly changed dramatically. It changed from a whine to a very distinct, gasping-squealing belly laugh.

When I got up the stairs and into his room, the look of utter rapture and delight on his face confirmed what I suspected: that Tanner isn't the only brother who can get him to laugh.

Wednesday, December 2, 2009

I Tried!!

I went to the grocery store today to pick up a few things. In the meat section, I looked up and realized there were two adorable little children in a cart next to me, a boy and a girl looking about the same age, around 2. I asked the mom "are they twins?" She smiled and said yes. I smiled at them and said, "they are super cute" and turned to go.

I was so proud of myself! I didn't walk in the other direction! I didn't ignore them! My heart didn't race, my face didn't flush, my stomach kept all its contents! I felt so liberated that I reached way into the back of my cold black heart and sensed no jealousy whatsoever! I thought, "Yay! I'm back!"


Just as I was turning away from our very brief but satisfying encounter, she rolled her eyes, sighed heavily, and said, "Yeah, and they're a LOT of work."

Heart still racing.
Face still flushed.
Nausea fleeting and manageable.

I tried. Maybe next time I won't try quite so hard.

Sunday, November 29, 2009

No! Not Preemie Teeth!!!

The good news is that one of the teeth that has been struggling to erupt in Crew's mouth finally made its appearance in the middle of the night.

The bad news is that what I have suspected for the last few days is definitely true. The tooth is yellow and brown and may have no enamel on it whatsoever. Because his bottom teeth came in perfect and white, I thought we were safe from the preemie teeth condition that is caused from antibiotics and other heavy medications during the all important "final trimester" (that he spent in the NICU) as well as being on TPN (intravenous) nutrition for so so so ridiculously long.

I am so sad for him! Like life isn't rough enough without creepy teeth? Guess I'll be making an appointment with the pediatric dentist to fully assess the situation. Sigh....

Saturday, November 28, 2009

Sitting? Sort of.

We're still working on sitting. Sometimes this is all he can make himself do.Sometimes he can play with a toy and sit respectably. His lefty is his "propping" hand. We are focusing on putting toys into that hand so that he uses it less as the crutch. See him holding onto that very small ball? That's a great thing.
If we miss a few holiday or illness days of therapy, he tends to regress. It can be discouraging. But even as a baby gorilla, he is absolutely adorable. Love you, Crew! Back to work! I hate exercising too, so I feel your pain!
(Thanks for the floor mat, Mel! I love it!)

Brothers Watching Cartoons

Everybody falls asleep with the Bambi blanket.

Wednesday, November 18, 2009

Big Beastie

Crew had his 12-month well-check this morning. He weighed in at a hefty 14 pounds 12 ounces! My little beastie is now fully into 6-9 month clothes. A big accomplishment indeed!

I think we can now call him a "sitter", though we always make sure he has something soft behind him because he's a flinger--loves to fling himself backwards. He is doing some really great things. He is waving hello and bye-bye about 25% of the time now. He even occasionally repeats sounds we make, like "la-la-la" and "da-da-da". Not often, but sometimes; enough to blow our minds.

As far as gross motor concerns, Cerebral Palsy is on the back burner for now. Our personal pediatrician and the traveling neo clinic pediatrician are just not convinced that it's as serious as the neurologist is anticipating. In Dr. J's words, "It's too soon to make an official diagnosis and he is making great progress. We'll wait until Crew declares himself." He's as pleased with Crew's recent accomplishments and as hopeful as we are. He sits!! He reaches!! He grasps and shakes!! He has even passed a toy from one hand to another a few times.

He still has a boogery face. But I love him anyway.

Tuesday, November 17, 2009

Cozy Cuddles

I stumbled upon this sight last night before bed. It was too adorable and too sweet to let pass without snapping a pic.

Monday, November 16, 2009

Good Morning to You

Welcome, Winter! Kisses?

Friday, November 13, 2009

Being One Year Old

Crew is my big boy now!

We have started putting him into crawling position as part of his physical therapy. His knees don't bend very freely with his "high muscle tone". He totally hates it and has figured out how to fling himself out of it pretty quickly. But hey, we'll take forward motion any way we can get it, right?Someone gave this bear to him for his birthday (anyone ready to confess?) Here he was carrying on a very intense conversation with his fuzzy new friend.
"What? You say you think I am the most beautiful baby in the world?"
"Look deeply into my eyes.... now melt."
"Thanks for the birthday outfit, Nana and Papa! It makes me even more adorable, don't you think?"

Tuesday, November 10, 2009

Happy Happy Birthday, Babies Dear!

Well.... we made it! One year. Sigh.... and what a year it has been. I'm in the "Is that someone waving a wagon-load of straw in front of my camel? Run, camel, run!!" kind of place.

The anxiety leading up to today was definitely much worse than today turned out to be. I have spent the last two weeks doing the bitter/angry/pissed-off thing. The dread and unholy terror of facing today kept me from sleeping the. entire. weekend. I finally admitted to myself that I was choosing to do "angry" because sometimes it feels more functional and less painful than "sad", though I'm not really sure that it is. Then I did the curl-into-fetal-position-and-cry-until-you-puke thing on Sunday. I had Halloween candy, triscuits, and cheese dip for breakfast on Monday. By the time today rolled around, I was all stomped, whined, and cried out.

Late last night I took a super long walk by myself to reflect on this last year. It's been a few weeks since I have prayed and I finally faced Him last night, when I was ready to tell Him what He already knew: that I was really ticked off at Him about this whole thing. To plagiarize a friend of mine: "I have a few choice words to say about this situation." I hear ya, sister. I hear ya.

I was amazed at how quickly he sent His peace to my raging heart. I felt Dex very near me, with his usual lighthearted comfort. I felt that I should come home and read my early posts from last year. It was exactly what I needed. By the time I went to bed I was actually looking forward to today, if you can believe it.

Today was a wonderful day. Today was the day we celebrated the miracle and blessing of Crew, his continuing story of mercy, hope, and courage. Today was the day we celebrated the miracle and blessing of Dex, our valiant soldier who fights for us on the other side of the veil, our son who has already made it safely Home. Today was the first anniversary of the hardest day of my life. Today was the first anniversary of the most beautiful day of my life.

Today I only got weepy twice. Once when I was picking out "Happy First Birthday" balloons to take to the cemetery. And once again when we arrived at the cemetery and discovered that family and friends had beat us there! We were so surprised, and so very very touched by what we found there: the evidence of sincere love for our family and for our never-forgotten son. We were all deeply moved by the efforts made and can't thank you enough for loving our little prince and being there for us in endless ways as we continue to wade through these uncharted waters.

Now, as for how we spent the day:

We kept Kinley home from school for a Family Day. We ran errands in the morning and Justin came home by lunch time to take us all down to visit the cemetery. It was weird to have a birthday boy that looks like a 6-month old, I must say. We spent a good part of the afternoon at the cemetery. It's so weird, but we love that place. Love it!!! It feels like holy ground. It used to be a place that I feared. I used to feel somber and morose just driving through the gates to visit Dex's grave. Now I just can't get enough of it. It's so peaceful, so quiet. It offers such perspective. It's a place of hope and eternity. Time and time again I am reminded that "everybody dies eventually." And there are a lot of babies in that cemetery. It helps me not feel so alone in this particular trial.
We are so blessed.
I love this picture.
I'm not the only one who loves the cemetery.
We were going to release a bunch of balloons representing each member of our family. Then we decided to release only one balloon because he is one-year-old. Then Tanner wanted to release his own balloon; he didn't want to hold on to the same balloon as Kinley. We noticed the balloon gal had "accidentally" included an extra, so with fate smiling fondly upon us, we released two white balloons.

For Dex, we were inspired by President Monson's Conference talk in October. We now have a big, beautiful glass jar that we are going to fill with colored glass stones that represent acts of service that we do in his memory. He is never far from our thoughts.

After our trip to the cemetery, we came home and Crew played with his balloon. He is craaaaaazy about his balloon. He has never become so upset when losing his grip on a toy. He just could not get enough of it.
Then we made cupcakes.
And opened presents.

And had cake. Crew wasn't really interested in eating the cake, though I did try to encourage him a few times. He was, however, very interested in manhandling the cake.

Happy birthday, big guy!