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


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!

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.


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!