Friday, February 12, 2010

Being Big Sister

Can there be any doubt about how these two feel about each other?

Streeeeeeeeetch!

Streeeeeeeetch! Got it!
Are you proud of me?!

Crew Playing With Friends

A fun new stage.

Growing Boy

Crew is 16 pounds now.

I also wanted to record one of the best things he does. Whenever I pull him out of bed in the morning, he reaches forward to clasp both sides of my face firmly between his outstretched little hands. That sweet, brief little squeeze on my cheeks is my favorite part of the day.

He is also starting to lunge when he wants to go to someone and is almost starting to raise his arms in a requesting motion. You can tell the thought is there, but the motion is not fully developed yet. He has been known to choose to be passed back and forth between Mommy and Daddy. He has been flapping his arms for a long time when he wants someone to pick him up, but those arms are starting to point in the direction of the person he wants to hold him. Very exciting stuff, this communication.

Finally, he is starting to play a few games. I will bring his head down to kiss him on the forehead and then lift him back up. He'll smile and throw his head forward time and time again. Also, the other day I tipped him backwards off my lap and then brought him back upright. He suddenly started throwing his head back to continue the game. These are all great cognitive signs.

Physically, he has decided to stop rolling. Bah--jeesh, you don't focus on something for a few days... But he is now willing to play on his knees in front of an overturned basket. He isn't stable by any means, but he's willing to do it now, pitches no fits, doesn't launch out of position. He plays and bangs happily while I hold him steady.

Crew is being a big boy!

Thursday, February 11, 2010

Bum to Belly

Guess who can very purposefully maneuver himself from his bum to his belly? His movement is strong, controlled, and intentional. Yay, big boy!!

Monday, February 8, 2010

An Inconvenient Truth

You must know by now how often my tiny stinker fills his britches. If not: it's 3-7 times per day. There really isn't ever a super convenient time to change his foul little pants, but there are some moments that are worse than others.

A new circumstance rose to the top of my list today:

25 minutes into his eagerly anticipated afternoon nap, which happened to be 7 minutes into my less anticipated Shredding workout. In the end (pun intended) it all worked out (again with the puns). He sat in the corner completely mesmerized and entertained by the Fat Mommy Show.

It's times like these that I remind myself that I once rejoiced over poop...

I would have given anything for him to be able to fill a diaper instead of an ostomy bag...

When polishing his little bum with a wet wipe would have been a welcome alternative...

When we had to weigh and measure his poop instead of just tossing it into the garbage...

When pooping meant I had an excuse to give him a bath and change his clothes: my most favorite-est treat in the world...

When changing his "diaper" required 30 minutes, 2 nurses, and a tube of adhesive. And the incompetence of a few nurses in taking care of his stoma got us transferred back to Primary's at the surgeon's request...

When his poopies made me cry with relief and gratitude...

When we just couldn't get him to go...

When our entire life revolved around the contents of his diaper and I had to raise hell over the status of his bowel movements...

When poop kept us trapped in Alcatraz (Primary's)...

When functioning bowels made me weak in the knees with gratitude.

Hey.... what's that smell?

Sunday, February 7, 2010

Lessons and Comfort from the Past

One thing I've been spending a crazy amount of time on is Family History. I have always found geneology to be very addicting and quite calming. The new Family Search Website has reawakened the obsession and I think my mouse-ing fingers are getting carpal tunnel...

One thing I have found cathartic this time around is taking note of the sheer numbers of children who have died in infancy along my family line, including countless sets of twins. It's yet another reminder that I am not alone and, more importantly, everybody dies. It sounds so obvious when you say it out loud, like any of us really believe we are going to live forever. But when I laid my baby to rest, I had to truly think about how that inevitability affects me personally. It was the first time I really accepted my own mortality. And I can admit that there were days that I would have welcomed death gladly, moments when joining Dex felt so much more endurable than living without him and living with the pain of our loss and our fear of the road ahead. When anyone would say "Dex is in a better place", I was screaming in my heart "YES!! I KNOW THAT!! And right now I'd really prefer to be with him!" Sooner or later we are all going to die. I'm not trying to be morbid, just factual. Our exit from this realm will be a special and appointed experience for each and every one of us, just like the day we arrived.

I have been trolling through records of families in the 1800's. We all know how dismal life expectancies were at that time. While I don't rejoice in the sorrow that I know they felt, I feel comforted in some measure by knowing that those who have gone on before understand the path I find myself walking. If they can do it, I can do it... Maybe.

Monday, February 1, 2010

Happy Adjusted Birthday, Crew!

Tomorrow is Dex and Crew's theoretical first birthday. They were due February 2, 2009. I'm not feeling a lot of overwhelming emotions this week because this date doesn't mean quite as much as it once did to me. We have enough dates, milestones, and countdowns to worry about, celebrate, and mourn.

How is our tiny miracle faring of late?

Gross Motors
Our PT is coming on Thursday and I'm excited to show her Crew's new trick -- rolling to his belly from his back! I'll only be able to show her if he's in the mood and suitably motivated by a new and exciting object. I made my neighbor empty her pockets when she arrived this morning. Her son's chapstick proved to be the golden allure; he rolled twice unassisted in its pursuit! We generally find him on his tummy in the morning, having rolled there after waking. His crib mattress has a lot more "give" than the carpeted floor, so it's taking him longer to roll outside of his baby-cage.

He mostly chooses to lay on his back and yell until toys appear magically within his easy reach. He'll play on his tummy with a toy if he's put in that position. He still needs a great deal of encouragement and just the right incentive, but he can roll. And that's big news.

He sits marvelously, reaches/leans precariously with minimal tumbles, and he's an ambitious, kitty-cat curious Grabber. He is super wiggly in my lap and all about flailing these days. I get a Sabbath morning workout every week during Relief Society.

He can't stand to be forced onto his knees in pre-crawling exercises. He gets very angry and launches out to sissy plank position as soon as he finds the right leverage. I can see that learning to crawl is going to be an adventure.

Food
He is now eating solids twice per day. He eats veggies mixed with cereal in the morning and fruit with cereal at night. He drinks bottles during the day. We're tying to figure out what formula to use. He's over a year now, but he's not going to straight milk anytime soon. His diet isn't varied enough at the moment and he needs all the vitamins and minerals he can get from formula. The cheaper formulas make him poop too much. You laugh, but it's actually a weight concern. The expensive formulas seem to constipate him with the cereal now added to his diet so.... Yeah, we're working on it.

Speaking of bottles, Little Lazy Bones pats his bottle nicely with one hand when he's in the mood, but doesn't hold it. His life would be much happier if he could, especially when he's ravenous and I need to change his diaper before he eats. I keep telling him that he could feed himself while I wipe his butt and kill two birds with one stone, but he's not buying what I'm selling. I haven't been very aggressive lately with this issue, but I think I'm in the frame of mind to revisit this. For a while, I would pull the bottle out of his mouth if he didn't have both hands firmly planted on it, and we were making a little progress that way. Then the holidays, blah blah blah....

He is doing better with fruit puffs lately. I now only have to break them in half, instead of thirds. Every once in a while he can handle a whole one, if I position it just right in his mouth. He pinched one right out of my hand this afternoon and tried to feed himself!!! He couldn't get it all the way in there, but it was a great attempt!! He can, however, mangle a Nilla Wafer. He eats half and squashes half.

Social/Verbal
He's always been an extremely sociable little guy. Even at 2 pounds, he demanded that the nurses peel back his isolette covering and ogle awhile. Not much has changed in that department. He is quite offended when I turn my back on him and he has very little stranger anxiety. He went through a very very brief patch a few months ago when he was very mom-o-centric but seems to be back to his old flirtatious, Love-The-Whole-World self.

He babbles constantly, and I mean constantly. He's always bearing his testimony at full volume through the church block. I've had to take him out on a number of occasions because the stories he has to tell are just too distracting. I am almost convinced that he says "mama" purposefully and I love it.

Sometimes I forget how far behind the little critter is because he's just Crew. We're on his timetable and have long since abandoned the Hawaii Early Learning Profile. I'm reminded occasionally, like when someone says "Oh! He's almost 15 months! He'll be going into nursery soon!" Then I think, "wow, he can't even roll over or hold his own bottle." There are a lot of reasons that he won't ever attend nursery (contagions, eww) but the practicality of it is really quite beyond us for now.

So, onward we go in our journey to progress. He continues to move forward at his chosen pace and we love him immensely.

Thursday, January 28, 2010

X-Ray Day

I finally took Crew in this morning to have his cranial x-rays done. I've been putting it off for a million reasons, but I checked it off my list today. I've been told that this is just a "precaution" and that even on the chance that he does have very mild craniosynostosis to go with his little ridge, the Powers That Be will probably recommend doing absolutely nothing about it. Oh, and by the way, these x-rays aren't the best diagnostic tools for this condition anyway. In other words, doing the x-rays and playing this game is a colossal waste of my time and money.

We went to the Primary's satellite that is close to my house. The radiology techs tried to convince me to leave the room because Crew would cry and it would best if I left, for both of us. Ha ha. Whatever. I donned a lead vest from the corner stash and hovered annoyingly wherever I pleased.

It is done. Now we wait patiently for the results.

Wednesday, January 27, 2010

Jeesh, Boys

There are many facets about Crew's development that remain of deep concern to us, but one thing we can cross off the list: he knows his own farts are supposed to be funny.

Tuesday, January 26, 2010

It's a Hard Knock Life

Saturday, January 23, 2010

Welcome Home, Chloe!!

After 149 days in the NICU, welcome home, Chloe! We couldn't be happier for all of you! We love you!!!

Wednesday, January 20, 2010

St. NICU

I found this while blog-hopping to another twin-loss micropreemie blog. I had never read this poem before, and I just loved it! I laughed, I cried and it is SO TRUE!

St. NICU
Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.

Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...

When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.

Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.

More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"

Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.

As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;

A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.

He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.

And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."

Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"

My Pretty Baby

This kid always smells like kissy-spit. I can't help but smooch His Royal Sweetness a thousand times a day. Even though I changed seven poopy diapers yesterday.


Lest We Forget

I read this poem today and it really just zoomed right to the core of my soul. I've thought often of this very girl and the conversations we might have together on a quiet evening. My life is very different from the one that I envisioned many years ago. I briefly toyed with the idea of being a hard-nosed corporate attorney, but I always fancied myself more of a "save the world" kind of gal. When I wasn't researching admission requirements to the Peace Corps, I planned to study Bengal tigers in India, teaching English literacy in huts during my down time. My actual life is far less exotic and I'm far less important to the world at large than I imagined. Nevertheless, I believe the girl I used to be would still be pleased with the woman I've become. The real satisfaction in life comes when we are busy fulfilling our personal mission, whatever it is, wherever it may lead. The beautiful thing is that we all have different journeys, separate paths we are meant to follow. How boring would it be if we were all exactly the same?

Lest We Forget
She came tonight as I sat alone
The girl that I used to be. . .
And she gazed at me with her earnest eye
And questioned reproachfully:

"Have you forgotten the many plans
And hopes that I had for you?
The great career, the splendid fame
All the wonderful things to do?"

"Where is the mansion of stately height
With all of its gardens rare?
The silken robes that I dreamed for you
And the jewels in your hair?"

And as she spoke, I was very sad,
For I wanted her pleased with me . . .
This slender girl from the shadowy past
The girl that I used to be.

So gently arising, I took her hand,
And guided her up the stair
Where peacefully sleeping, my babies lay
So innocent, sweet and fair.

And I told her that these are my only gems,
And precious they are to me,
That silken robe is my motherhood
Of costly simplicity.

And my mansion of stately height is love,
And the only career I know
Is serving each day in these sheltering walls
For the dear ones who come and go.

And as I spoke to my shadowy guest,
She smiled through her tears at me,
And I saw that the woman that I am now
Pleased the girl that I used to be.

—Anonymous

Friday, January 8, 2010

Brave Little Crew

Crew made two women tear up yesterday. He is becoming such a big boy, making such wonderful progress. His PT Julie was blown away and overwhelmed with emotion when she saw the strides he has made since she was here before the holidays. Continuing PT after the move was the best decision we have ever made for Crew. Julie is truly a gift. She is always ready with a new challenge, but is ever so observant of even the tiniest improvements that he makes between visits. As a bonus, she told me she doesn't consider me high maintenance at all, but in fact I am her favorite, most involved, and fearless mommy. See, I'm not so bad.

Now that Crew sits, we feel like the sky is the limit! We've been working on sitting for five months and at times we were tempted to despair. Reaching this hard-fought milestone has made us very very happy. We feel confident that he will one day crawl and then walk. It will just take time and work. Time we have; work we're willing to do.

Crew is now reaching with both hands equally, with no signs of weakness in his left arm/hand anymore. We taught him to pull a towel off his head yesterday. He fake-coughs to play. He had Julie in stitches with that one! Whenever she tried to get him to do something he wasn't in the mood for, he would just start fake-coughing at her, trying to distract her with his humorous new communication. Hey, it totally worked!!

Crew is now starting to reach for objects that are off to one side of him when he is sitting. It throws off his equilibrium, which he has worked so hard to establish. He's not real keen on it, but he's starting to get the feel for it, gaining confidence. Basically, his curiosity is starting to override his complacency and fear.

He is just doing great, great things. I'm so proud of him! I love you, Crew!!

Sunday, January 3, 2010

Happy New Year, Baby Crew

Crew has recently become a "sitter". He sits, and he sits well. We are crazy proud of him! He has also become a thousand times easier to feed. He is eating solid foods twice per day. We're still doing jarred food (never did get around to making my own baby food) and he'll eat any veggie and any fruit offered. While he is still particular about temperature and texture, he'll now eat his food mixed with rice, oatmeal, or mixed cereal.

We have wasted so much food over the last several months, never knowing whether he'd really try to eat it or just cry until we gave him a bottle. He seems to have figured out that solid food is, well, food. Justin and I no longer draw straws or gauge who has the greatest depth of patience in a given moment to decide who will feed him. He no longer needs a bath after every meal. I no longer have to sing songs at the top of my lungs to keep him focused and calm. We no longer have to tap his lips to get him to creep them open enough to sneak a bite of food in there. He would often get so frustrated because you could tell he wanted us to shovel faster, but he couldn't figure out that he had to open his mouth to get it. He's Mr. Jaws now. I didn't even realize how tense mealtime was until it stopped being so tense. It's quick and cheerful playtime for us now instead of the most dreaded chore in the house.

Crew has also figured out that whatever we put in our mouths is also food. His arms have become windmills at the dinner table and nothing is safe. We are letting him sample a few things here and there. He still has an overactive gag reflex, but I can tell it's improving.

Crew is also successfully passing toys between his hands. I think in the next month or so I'll be able to report that he is rolling onto his belly. He's getting so close. We are focusing on getting him interested in independent movement. We are trying to get him to roll onto his belly and get up on his knees. His current preference is to lay on his back and scream until we carry him where he wants to go. The catch is that when he's upset is not the time to try to teach him motor control to solve his own problems. It's an interesting balance.

We have a good feeling about this year for our little Crew. He has come so very very far in the last year. 14 months ago they told us he probably wouldn't live through the week. This time last year he was still only 2.5 pounds. One year ago this week they told us that Crew appeared to have Cerebral Atrophy; some said we were facing a worst case scenario, potentially fatal but certainly catastrophically damaging. Every day he is here is a miracle. Every milestone he reaches is cause for rejoicing.

He has such a beautiful little face. Even after all that has happened, it's hard to imagine having two of this exact same, perfect little face in our home. Dex and Crew are identical twins, but I never saw Dex with his eyes open. I still see the clear resemblance when Crew is sleeping, but it's difficult for me to imagine Dex's spirit and soul peering out at me through these eyes that I have come to know as Crew's most dominant facial feature. Methinks the world couldn't have handled so much cuteness!




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.

Sigh...

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!"
Standoff.
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 http://www.worldtttsawarenessday.org/

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!"

Then...

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.