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."

Goals for Crew

Well, we spent a long time with Crew's physical therapist, coming up with goals for our little guy. We hope to meet most or all of them within the next 6 months, by the time his adjusted age is 15 months.

Feeding:
Crew will hold his bottle independently
Crew will pick up a cracker and progress to cheerios
Crew will play with toys and feed himself equally well with both hands
Crew will signal "all done" and "more" in a recognizable way

Independent Movement:
Crew will roll across room to get toys or follow mom
Crew will get into or out of sitting and sit independently to play with toys
Crew will get onto hands and knees to crawl across the room
Crew will independently get around the house to find mommy and to play with siblings
Crew will get up to 1/2 kneel to stand, holding onto a solid surface

Play Skills:
Crew will be able to pass a toy between both hands
Crew will bang two toys together
Crew will clap
Crew will play pat-a-cake
Crew will take toys in and out of basket/bucket
Crew will begin to stack one block on the other, using both hands
Crew will reach/signal with his arms when he wants to be picked up

Wow.

He's got a lot of work ahead of him, that's for sure!

We are very excited that he has made some progress in the last few weeks with his hands. My dinner plate is no longer safe when he's on my lap!! When I hold something in front of him, he now almost immediately reaches out to grab it, with both hands no less! That's a huge step for him. He doesn't stare at it for 30 seconds, waiting/trying to make his arms/hands respond to his desires. Also, once he gets it into his hands, he holds onto it for a long time. A few weeks ago, I was having to pry open his hands to put things into them half the time, and then he would drop them within 10-30 seconds. Now he is actively reaching and grasping and will shake them around, holding onto items for several minutes at a time. He can even hold onto one toy in each hand. Huge accomplishment; pretty exciting stuff :)

Go, Crew!

Playtime with Crew

Toothy

What? Is that a tooth I see? Is that two teeth?? Yes, indeed, it is!

Brothers

Tanner, what who have you got under your Bambi?

Tuckered Out

Cute Crew

Cute little Crew remains very cute and very little. We continue to get the "he's how old?" bug-eyed gasps at the grocery store. One of these days I think he might grow out of his 3-6 month clothes, but the swine flu didn't help him out any.
See how my big boy is reaching and playing with the toy in front of him?! Yay!
See how he is reaching with his weaker left hand??

Big Brother

Tanner is such a helpful big brother and so gracious about it...MOST of the time...

Sigh..... All Better

It appears that Crew really and truly has overcome the Piggy Flu at last. Seeing how hard it hit his Daddy, we feel especially fortunate that Crew fared as well as he did. And we feel very blessed that Crew's breathing was never impacted one little itty bitty bit. Not bad for a little guy that has "Chronic Lung Disease" plastered all over his medical files, eh? What a kissable little miracle he is. It seems Heavenly Father still keeps one eye peeled for the occasional Crew Crisis. He is at about 95% wellness, sleeping horizontal in his very own bed tonight.

Piggy Flu Update

Crew is doing so much better. He slept for most of the day and continues to cough on occasion, but his appetite has fully returned along with his good humor, and he is overall in very good shape. Phew. I feel so relieved. It was very stressful to have him suffering from The Plague. He'll continue to sleep propped up for a few more days, slathered in oils, just to be safe.

As for Justin... wow. He's a mess.

Piggy Treats

Darbi asked her parental reps to drop off some get-well piggy treats to her boyfriend. I laughed and laughed! Then I "pigged out"...

Thursday

Morning Update

Crew is still sleeping. He has slept the entire night without waking up. He only had 4 coughing fits (none of them needed intervention.)

In bad news:
The Swine Flu Truck ran over Justin in the middle of the night.

Wednesday 2

Evening Update

• Fever gone
• No ibuprofen/tylenol in 12 hours
• Diarrhea from Tamiflu (blech)
• Congestion/stuffiness lessening
• Coughing about the same
• Ate solid food for dinner
• Drinking more formula
• Appetite returning
• Lots of smiles from our littlest guy

We are feeling grateful and optimistic. We won't let up on our vigilance quite yet. Pneumonia remains a very real threat. We feel so amazed that so far his breathing has not been compromised AT ALL. It is truly a miracle.

Wednesday

Morning Update

• Fever down
• Hasn't thrown up in 24+ hours
• Sleeping for longer stretches
• Coughing seems increased
• More congestion
• He sounds hoarse when he talks/cries

Smile

Morning Update

At 3:00 this morning, with Daddy singing endless repeats of "Popcorn Popping", Crew offered up the first smile we have seen in days. Then he slept for an entire 5 hours straight before waking up to drink 4 luscious ounces of milk for breakfast. He even had a damp diaper in the middle of the night. After sleeping through his next time for medicine, he woke up with his fever just barely above normal. He is taking a nap right now in his bouncer to keep him elevated.

We are keeping him plied with piggybacked ibuprofen and tylenol every three hours (when he doesn't sleep through it). He is on Tamiflu twice a day. He is covered from head to foot in four different essential oil mixtures. We're doing a hokey alternative "energy thing" that seems to relax him and hopefully does even more on the inside. He's had a priesthood blessing and we're praying our little hearts out.

As far as the rest of us, we're pounding Vitamin C like it's candy, along with Vitamin D (something I read), Airborne, Noni Juice, salt water gargles and nasal washes (something Justin read), drinking water until it comes out our ears, and washing our hands until they bleed.

We've been reading that it often gets much better on "Day 3" and then backslides again to utter misery for a few more days. Trying to beat the odds here! Thank you so much for your kind prayers!

Oink, Oink

This morning I took Crew's temperature. With ibuprofen and tylenol in his system and after a cool bath, his temperature was 101.6 degrees. He is utterly miserable. My heart breaks when he cries, but it's so much worse when he is too tired and weak to cry, which happens when his fever is being especially difficult and unmanageable. I've broken out all of our "alternative" remedies to pile on top of the western medicine, throwing everything at him that we've got in our eclectic arsenal.

He is still eating some, though signs of dehydration are already apparent. His diapers have been dry since yesterday. We are trying valiantly to get as many fluids into him as possible, with varying degrees of success. He just reluctantly drank 2 ounces of apple juice.

When my pediatrician told us that it's going to get a lot worse before it gets better and that we are just entering the "ramping up stage", my heart fell into my shoes. He is spending the evening on Daddy's lap and he'll spend the night in my arms again. We hope to turn the corner by the weekend. Praying for sooner than that though.

Blech.

On the bright side, we had been agonizing about whether to get him the immunization. After much debate, we had tentatively decided to go ahead and get it for him. Now we don't have to worry about that, nervous laughter, nervous laughter...

Piggy Flu Crew

After a rough past 48 hours and a hellish night last night, I took Crew in to the pediatrician this morning.

He has officially tested positive for the piggy flu, otherwise known as the swine flu or the H1N1 virus.

Awesome.

Moose Meat

Mmmmm...... Moose is my favorite snack....

Hearing Test

Getting a hearing test. He passed, but his hearing has always seemed just fine to us so we weren't worried about it.

"Oooooh, what's that sound, Mommy? Chipmunks?" He was thoroughly mesmerized during the whole test.

Sweet Baby Crew

This is my darling little Crew. He is 11 months old this week (8 months adjusted). His sweet and expressive personality just begs kisses and loves all the time. He gets a bath almost daily to rinse him of the "family spit smell" as well as dinner grunge that gets trapped in his neck creases. We still occasionally call him "The Tiny Prince", but have lately been referring to him most often as "Beast". It started when he was teething (and exhibiting fairly beastly behavior) and it stuck.

This picture features our Beast positioned in a new physical therapy pose designed to strengthen his arms and torso and to prepare him for future crawling. He looks especially adorable in it, don't you think?

We met with our new physical therapist this morning and we're excited to get this show (back) on the road. The new PT will come twice a month and will help teach us tricks of the trade to guide him toward success. We have the parental intuition and the unconditional love necessary to help him, but we need a few keys/tools/details to fill in the blanks.

We reviewed his results from last week's evaluation and found that most of his scores were in the 4-month range with a very few items creeping more toward 5-months. We continue to work with him aggressively every day and he is making progress, albeit slow.

I intentionally positioned myself with the Intervention Coordinator last week as rather timid about this whole intrusion and fairly high maintenance. It's been alluded that they very carefully chose someone to work with us from among their more elite team members. I have no problem with that. And hopefully my sweet spirit and genial disposition will be a pleasant surprise for them in the future. I did verbally commit to our PT this morning that I would speak my mind and not be passive aggressive--I volunteered that tendency in the interest of full disclosure...

Our PT (Julie) sees a lot of good things that Crew is doing. He has been (tentatively) sitting like a gorilla for (very) brief periods of time for 8 weeks with very little improvement. This morning he was sitting up straighter, putting his hands on his lap, and even reaching out for a toy. Little show off. He rarely rolls from his front to his back anymore and has only made it to his stomach one time. He is starting to roll to the side occasionally and is beginning to show greater interest in reaching and grasping. My dinner plate might not be safe much longer when he sits on my lap!

Kinley and Tanner are always on the lookout for new accomplishments. Tanner will come running to me, shouting "Mommy! Crew touched my face!!" or "Crew rolled to his side to look at me!"

I have really enjoyed the extended newborn stage of our little miracle. It's been a tender mercy to be able to hold on to his early stages for so long, knowing he is our last child and missing out on the snuggles of our anticipated twins. I've been able to thoroughly enjoy Baby Crew for long enough to help me through a large portion of my grief and to not have his newborn stage be a forgotten blur. I haven't been ready to move on with him and have turned a blind eye to his (ardent) desire to remain a tiny, cuddly, helpless newborn forever. Nevertheless, the time has come when he needs to step it up and move out of the newborn stage and start acting like a big boy. It's time for him to bust through this development plateau and continue on in his journey of health and progress.

Come on, little tiger!

Now tell me, is he not the CUTEST thing EVER?

Cookie Monster

We all got a little weepy over the weekend when Crew reached a milestone. Not only did he actually hold something in his hand for longer than 4 seconds, but he guided it toward his mouth. And then.... after many many unsuccessful attempts, he got it into his mouth!

Yay, Crew!

Sometimes he still ends up frustrated with his wrist in his mouth instead of his biter biscuit, but he's getting more successful every day.