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....

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.

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.

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.

Good Morning to You

Welcome, Winter! Kisses?

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?"

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!

Happy Birthday, Little Princes!

Food Therapy

Crew always has his little fingers in his mouth. To start him thinking about feeding himself with those grubby little mitts, Julie (our PT) convinced me to try letting him paint with baby food. She saw right away that she was asking the monumental of me (eww, eww!), but I gamely took up the challenge.

He doesn't eat chunky foods yet, but I thought the texture would be fun to play with and then he'd get the lickable, suckable sauce stuck to his fingers.

Here he is inspecting.Squish, squish.
I put his hand to his lips and convinced him to have a taste.
Mmmmmm.... He did this about 4 times, with assistance.
And.... then he was done. "Go get the spoon, woman! FEED ME, SEYMOUR!!"

Brothers

Seriously?

Do you remember the lady I told you about from last week, the very pregnant lady that is having twins due the same time my boys were due?

Guess who my newly assigned Visiting Teaching companion is.

Off The Reservation

I'm using my blog as cheap therapy tonight, so don't feel obligated to swim through my drivel.

Tonight I am feeling overwhelmed and sad. I fully expected Dex's birthday to be sad, but I didn't anticipate all the emotional build-up in advance. The trip to the Neonatal Clinic yesterday didn't help anything, I can tell you that. Seeing all of the struggling little NICU survivors, hearing the suspicions about Crew, etc.

I spoke for a short time with the parents of the TTTS girls. I was so super sad for them because their girls are struggling, particularly the recipient twin (Dex), but on the drive home I found myself being kinda jealous that they both survived. That doesn't usually happen but yesterday was particularly trying. The mom asked about my TTTS diagnosis and treatment. No one ever asks that so I was caught off guard. I told the truth (about his good, but faulty intentions) and she burst into tears and said, "I hate your doctor!" And I have to admit that in the moment I kind of agreed with her.

Bitter a little?

I remember the first time I got Mad. I remember being so surprised by it, but openly embracing it for survival in the moment. It was 10 days after the boys were born. I remember it because it was while they were prepping Crew for lifeflight to Primary's when he blew a perforation in his bowel. All of a sudden I was just.... Mad. Super mad. I paced that NICU like a tiger, leaving the room several times because I just KNEW I was going to rip Crew out of that isolette and run out the door with him if I hovered too near. I remember gripping the arm of the flight nurse and saying, "you save him! I just buried his brother; I will not lose him too!"

I also very vividly remember staring Justin down and saying, "We have already lost one son and survived it. We can do it again if we have to." Then we hit our knees, praying to God that we would not have to survive it again.

I have seen too many babies die this year. I knew babies at Primary's that never made it home. I know babies that survived the NICU only to struggle throughout their lives with various problems. I have made friends online that have lost babies and some that are even in my exact same boat (damn TTTS!) I've embraced mommies at the cemetery who are there visiting their angels. My eyes are opened in ways that I never wanted them to be. I am a veritable expert on all kinds of helpful, tragic topics.

I wish I could say that I'm doing what I know I should be doing to find my more comfortable peace and perspective, but I'm not. I'm totally wallowing, embracing the self-pity within. I don't plan to do it long, but it changes things up a bit and change is good, right? LOL, just kidding.

I'm actually looking forward to the boys' birthday, if you can believe it. I think the anxiety of the anticipation is the worst. I actually have some celebratory plans that I think will help us all refocus. Oh, I suppose I may also be feeling a little anxiety about someone thinking they might want to crack open Crew's skull....

I'm so overly dramatic, I know. I think I may be a wee little bit hormonally imbalanced at the moment.

But I also feel significantly better having purged my "deepest darkest" onto the blog this evening. Maybe I'll sleep tonight. Yay!

P.S. The song that caused the driving-home meltdown yesterday was "Where Were You When the World Stopped Turning?". It has all new meaning for me, as it has for a year now. My world stopped turning for a bit on November 10, 2008.

Particularly this verse:

"Where were you when the world stopped turning that September (November) day
Teaching a class full of innocent children
Driving down some cold interstate
Did you feel guilty cause you're a survivor
In a crowded room did you feel alone
Did you call up your mother and tell her you love her
Did you dust off that bible at home
Did you open your eyes and hope it never happened
Close your eyes and not go to sleep
Did you notice the sunset the first time in ages
Speak with some stranger on the street
Did you lay down at night and think of tomorrow
Go out and buy you a gun
Did you turn off that violent old movie you're watching
And turn on "I Love Lucy" reruns
Did you go to a church and hold hands with some stranger
Stand in line and give your own blood
Did you just stay home and cling tight to your family
Thank God you had somebody to love"

Neonatal Blues

The day started off awesome and just got better.

Crew woke up for an atypical 4 a.m. snack and I was unable to fall back asleep before we had to get up and get ready for our early morning 4-hour marathon appointment with the Neonatal Follow-up Clinic, (which should be called the Neonatal Twins and other Multiples Convention).

I spent 40 minutes in the waiting room with four sets of twins and a set of triplets. Good times. I managed to not cry until I was behind closed doors, yay for me.

I met one mom with identical twin girls that suffered from TTTS. With proper diagnosis and treatment, they were delivered at 27 weeks. We cried together. I hate TTTS!!!

Based on what she saw today, the neurologist was finally ready to make the call: "Moderate Cerebral Palsy." She anticipates that with great efforts and continued PT, he will be able to walk one day, but will probably need leg braces or some sort of spendy shoe inserts at some point. The follow-up clinic pediatrician doesn't think it's as serious as all that, so time will tell.

In separate awesome news, he has been referred for an x-ray to confirm or deny suspected Craniosynostosis. Praying that one comes back negative at least.

Excuse me. I need a nap.

Go, Crew, Go!

Crew has reached a few milestones recently. On Sunday, he was sitting in his high chair. I walked across the room toward him with a toy in my hand. When I was still more than 6 feet away from him, he lifted both hands and reached for the toy!

In other reaching adventures, he now reaches toward his bottle when he sees it coming toward him. Yay! He doesn't hold it yet, or even pretend to really, but reaching for it is the first step!

We still don't consider him an accomplished "sitter", but I really think that we're going to be able to slap that label on him within the month!

Oh, and are you ready for this?

He waves bye-bye, opening and closing his hand in response to a departing guest. I know. How cool is that?

That Time of Year

It's that time of year again. The wind is blowing (a little harder than last year). The air is crisp and cool. Football is on the television. The leaves are falling. Autumn is here.

I have had a lot of mixed feelings this week, and I expect them to continue and evolve into... something over the next few months.

It was this week one year ago that acute TTTS struck our family, unbeknownst to us. While I was out lumbering around the neighborhood trick or treating, my Dex was dying inside of me and I didn't even know it.

I've occasionally wondered if potty training Tanner that month and trick or treating all night long affected the outcome somehow. My doctor suspected TTTS had begun, but didn't tell us because he didn't want to worry us, not realizing how acute my case would be, not knowing that time was of the essence. He did not refer us to a perinatologist. I went into false labor twice during those final two weeks and I didn't go to the hospital and I didn't demand an ultrasound to check on my precious babies. Hindsight.

In my dark moments I still blame myself, wishing I could go back and make different decisions that may have saved my darling.

But in better moments I know that however we got here, we are where we are supposed to be. Dex waits for us patiently in Heaven, with his great eternal perspective. I look at the miracle of his conception and the miracle of his birth, his overpowering spirit that surrounded me the week that he left me, and the knowledge that I had in those moments that all was right in the world. I am so thankful that we were able to keep Crew because we were so close to losing him too. Two more minutes and we would have lost them both.

The truth is that the Lord saved Crew in a dramatic and miraculous way. He could have let him die and He didn't. By the same token, He could have saved Dex and He didn't. While I may not be thrilled with that reality, I can come to no other conclusion except that Dex's life plan did not include a long journey upon the earth.

I have come to know Dex better this year than I would have guessed. He is cheerful and good hearted. He is unfailingly amused by our antics. He seems far too good to be a member of this family, but we'll certainly take him.

Before the ward split, I learned that there were eight sets of twins and a set of triplets in our congregation alone. I have gotten used to seeing twins around town in the last year, to the point that my heart doesn't even race anymore. Today, however, I was blindsided. I sat behind a very pregnant woman who chatted with the girl behind me, telling all about being pregnant with twins. She is due about the time next year that I was due this year, about as far along as I was a year ago, looking as miserable as I remember. They were laughing about "two for the price of one", how she feels ready to pop already, how she is "done" being pregnant, joking and giggling, you know, like normal people do.

Why can't I just be normal?

Why did I have to hide behind Crew's spit rag and cry while we sang our opening song "Master the Tempest is Raging?"

"Master, with anguish of spirit
I bow in my grief today.
The depths of my sad heart are troubled.
Oh, waken and save, I pray!"

Ah.... but then came:

"Master, the terror is over.
The elements sweetly rest.
Earth’s sun in the calm lake is mirrored,
And heaven’s within my breast.
Linger, O blessed Redeemer!
Leave me alone no more,
And with joy I shall make the blest harbor
And rest on the blissful shore."

I love you, my darling boy. I miss you so much and I look forward to holding you again. Death doesn't hold the terror that it once did because I know that I'll find you waiting for me when the time comes. In the mean time, I'll try to be patient.

Halloween Chicken

Happy Halloween! Doesn't he look finger lickin' good?
The chicken legs were far too long, so we ditched them.

Crew Pack

"My name is Crew. I had the Swine Flu and my mommy and daddy didn't set me down for a week. Now I am spoiled. I want to be carried and held always."