The Fourth Floor

I spent some time with a friend at Primary's last night, where she is keeping vigil over her child. She said something that I couldn't get out of my head all night long. She said "anyone who has experience on the Fourth Floor has a sad story to tell." So true. The Fourth Floor has the Cardiac Intensive Care Unit, the Cancer Unit, the Transplant Unit, and the Neonatal Critical Care Unit, also known as the NICU. A lot of tears are shed on that floor. A lot of tears are shed on every floor, I imagine. With all the prayers that are offered up from bedsides around the world, hospitals are truly holy ground.

After I left her, I took the short walk to the all-too-familiar NICU entrance for the first time since discharge. I passed by a faded watercolor painting of an Orca whale done by a former patient named Natalie. It was the painting that almost did me in. I hate that painting and I feel badly about it, but it represents our difficult time there. I passed it so so so many times during our stay. Besides, I can't help but always wonder whatever happened to Natalie. I stood outside the unit looking in the window for a moment. I had no desire to go in, no one that I missed or wanted to see, and certainly no memories that I wanted to relive. I suppose that I know now for sure that I will never have the warm and fuzzy feelings for the Primary's NICU that I still hold for UVRMC, our hospital of origin.

My beautiful friend shared some heartbreaking observations she has made and things she has seen around her during their stay. It brought back a flood of memories, reminding me of the biggest lesson that we learned during our incarceration: that there is always someone that has a more difficult situation medically, emotionally, or financially. (For example, there is a a post that was written by the brother of one of our NICU buddies. -- There is even a way to help, should you feel so inclined).

Anyway, I don't know exactly where I am going with this post. I was just up all night with my heart hurting, wishing I could save the world and a little depressed that I have to settle for more realistic expectations. I know from experience how valuable it is to be loved and nurtured through a crisis and I have also come to learn that not everyone is so fortunate. When someone is suffering for their own sake or on behalf of someone they love, no effort is too small, no contribution of love, money, faith, food, support, or time is unappreciated.

Changing Tones

Since birth, Crew has been accused of having slightly high muscle tone. High muscle tone (spasticity) can be a sign of Cerebral Palsy and it's been a red flag that every member of Crew's medical team has had on their radar.

I am probably the only person that hasn't been uber-concerned by it at one time or another. I seem to remember Kinley having unusually high muscle tone for a baby and no one ever accused her of having Cerebral Palsy. Granted, she didn't have Crew's alarming medical history, but still.

It is very common for micropreemies to present with high muscle tone early on. Sometimes that muscle tone resolves and relaxes over time. Often it does not improve, interfering with gross motor development. In typical Crew fashion, he has thumbed his nose at the statistics: his high muscle tone has, indeed, resolved, relaxed, and all but disappeared. In further happy news, he also has normal reflexes (they are not "brisk", for you nursey types).

Interestingly, however, it has become apparent that his high muscle tone has been masking something very unexpected: low muscle tone. It seems he has been hiding a little developmental secret from us while we've been working to loosen him up this last year. It's odd, but it does make a certain amount of sense and fits perfectly with what I have observed over the last few months.

Basically, while he has been growing stronger in some well-exercised areas of his body, he has actually been growing weaker in others as his high muscle tone, which once passed occasionally for "strength", has diminished.

What that means for Little Crew is that he needs further strengthening. So, we have backed up the PT train and gifted him an exercise ball! He absolutely loves it and I will have to try to get pictures of him working out on it. Having him love anything related to PT is a blessing these days. This is technically a backwards step, but I feel really good about it.

In other Crew News: He has molars! Two gigantic molars (which also explain a lot about his crummy attitude last month). He is sleeping well again and has recently dropped down to one long nap each day. His food intake has been steadily increasing and his culinary ambition has improved as well. He is becoming more brave in terms of texture and temperature. Hydration continues to be a struggle, but he has recently discovered a love of peeled grapes. There is a lot of water in a bowl of grapes! Next up: watermelon!

Crew on Vacation

Crew swimmin'
Daddy and Crew

Crew rolled himself underneath the bed!
"Hi, Mommy! I'm so cute!"

Crew crashed on Daddy's chest for an afternoon nap.

Memorial Day

We felt our family incomplete

And hoped to add some more.

"Three!" the darling dad announced.

But I thought maybe four.

I prayed for strength, I prayed for help,

I said we wouldn't mind.

This was His chance to send them both;

"Please don't leave one behind."

I suspected very early

But I still wasn't prepared.

When the doctor said "you're having twins!"

I laughed, but felt so scared.

Daddy was in shock that day

"What happened to the plan?

You prayed for what? You crazy girl!

Now we have to drive a van!"

We prayed to feel God's comfort

To know it all would be ok.

"They'll be just fine", we knew it then

And remember still today.

The funny thing about answers

With our understanding flawed,

Is that "fine" did not mean what we thought.

"Fine" was something else to God.

The months wore on, our babies grew;

We found out they were boys!

We eagerly anticipated

The love, the work, the joys.

We bought several matching outfits,

We used family and friends

To help us make it through the worst,

To hold on to the end.

Then unexpectedly one night

We had to call our neighbor.

My water broke, we had to go;

I had started preterm labor.

All hell broke loose, it was so fast;

I woke up with the dawn.

My husband had to tell me that

Our little one was gone.

They brought his quiet body

To my room for me to hold.

I felt his valiant spirit then,

So noble, strong, and bold.

He touched our lives so deeply.

Such a tiny little guy!

We spent the day together

Before we said goodbye.

We mourned his death, the crushing blow,

One foot before the other.

Then turned to battle once again;

We had to save his brother.

While grieving for the loss of Dex,

We fought to keep our Crew.

We knew his brother strove with him;

We felt his presence too.

"Your darling may not make it,"

They all told us many times.

We took the NICU rollercoaster

With its inherent dips and climbs.

Surgeries and setbacks

Became the "normal" for our lives.

We never had a guarantee

That this brother would survive.

Survive, he did, and beat the odds!

He came home three months later.

Our joy is full, our hearts at peace,

Just one thing would make it greater.

In sleep reposed, we see his face,

The one he shares with Crew.

Our angel Dex, so loved, so dear,

We wish we had him too.

Outside!

Being outside has taken some adjustment for nature-phobe Crew, but this morning he decided that sunshine, wind, and grass are not-so-bad.

He joined me outside while I reweeded and planted some flowers for our Dex memory garden. I found some gorgeous, deer-resistent batik irises that seem to be blooming a little more purplish than bluish, but they are still beautiful and Dex knows they are for him.

Crew lasted longer than I expected, but we had help. My neighbor is also my VT companion and a former NICU nurse. She was out on a walk this morning and stopped by to play with Crew while I finished up the final planting. I turned around to find him on his knees; I burst out laughing, delighted with the impromptu PT session. You can take the nurse out of the NICU...

Here is Crew sitting on our "outdoor blanket", also known as the "Katie-blanket", so named for the ex-girlfriend that gave it to Justin many years ago. When we got married, I told him we could keep it if it stayed in the trunk of our car as a picnic blanket. Am I mean?
He rolled onto the grass and didn't melt down. I love this face. I wonder what he's thinking...
Then he got busy exploring in the grass. It needs a good mowing again. It tickles my ankles. This property owning thing is serious business. The accidental over-fertilizing has created a jungle out there.

Roar.

Sick Sick Sick

Well, surprise, surprise, little Crew is sick AGAIN. This is the third illness in 8 weeks and it's doing nothing for our weight-gain goals or our PT goals, I can assure you.

We missed the NICU graduate reunion yesterday and I'm so bummed about it! I have been looking forward to this weekend since we missed the reunion last year when we went out of town! We stayed home and I held him while he coughed in my face and cried on my lap all afternoon.

He's on the mend. He's improving, sleeping "humidified" in his own private tropic paradise.

He WILL Grow...

One Double Stuff Oreo cookie at a time...

Fattening The Babe

Well, I'm a woman on a mission and a mother obsessed.

I feel like I have just taken on a full time job trying to fatten this kid up and I'm not sure that my efforts are going to show on the scale for a while. It seems that the more calories I add to his plate, the less volume he ingests. I have only been able to shove in a few hundred more daily calories into him. Hopefully it will make a difference.

And keeping him hydrated right now is a joke. Which does no favors for his hunger.

I was feeling really guilty for not catching this a few months ago. In the last few days, I've been able to step back and examine the whole picture and his total feeding history and I'm feeling less guilty and more proud of him than ever. We've come an incredibly long way with his eating in the last year and a half and we've both worked really hard at it. These few extra calories a day are worth the effort of today, but not worth the guilt of yesterday.

C-C-C-Communication

Crew has really embraced this whole communication thing. We are all reveling in the breakthrough.

In sign:

Crew says "up".

Crew says "more" sometimes.

Crew kind of says "all done", I think.

Crew can find his head. Kinley and I even think he is trying to say "head" with words. We hear something that sound suspiciously like "heh" when he is showing us his noggin.

Just this morning he raised his arm and pointed with his hand in the direction he wanted me to take him. Very calmly, very purposefully, he pointed to our bedroom. He wanted to see if Daddy was still here. This is a first. I usually have to follow his eyes.

Crew is assertively reaching and pointing at things that he wants that are out of reach instead of squirming, whimpering, or crying and making us guess. He has been grabbing at things within his reach for months, but if it was too far away, he would either cry and hope we figured out what he wanted and fetch it for him or, more often, decide it wasn't worth fighting for and turn his attention to something else.

He understands "diaper" verbally and in sign and takes instructions on who to pass his diaper to.

I feel like we have suddenly cracked some mysterious code that allows us access to the inner workings of Crew's mind. Clearly he has just been waiting for us to give him the cypher. He is bright as a penny, sharp as a tack.

Weight Schmeight

I took Crew in for his 18-month check-up this morning. He has only put on 1.5 pounds in the last 6 months and tips the scales at a measly 16 pounds. He's on his own tiny little curve waaaaaaay below the charts. But... at least it's curving, right?

We're revamping his diet. Butter and cream for this kid. And we'll be trying Pediasure because it's higher calorie than the beefed-up formula milkshakes that he's been on. Hopefully he likes the taste. He's been doing Carnation instant breakfast sometimes. He kind of likes that. When he's in the mood.

More calories will help him grow plump but will also build muscles. Mus-kules will help him in the gross motor category.

Our pediatrician wasn't super impressed with the gross motor progress that he has made. He seemed more concerned about the gross motor skills yet to be mastered. He suggested we look into private physical therapy to add to our existing regimen. I've looked into it. Mmmmm... I don't know.

Bah. Can't please everyone all the time.

Did I mention that he has started communicating this week?

We Interrupt This Blog...

...for a very important announcement.

"Houston! We. have. communication!"

Last week Kinley and I attended a communication seminar so that we can better help Crew communicate his likes and dislikes with something other than screaming or, my favorite, throwing his head back and screaming.

On a side note, getting permission for Kinley to attend the seminar was much more dramatic than I would have expected, but PT Julie came through for us, as she always does. It seems we're one of those high-maintenance families that dares to think outside of the box. What? Full family involvement? What's that all about? Er?

I digress. As usual. And I'm going to do it again:

Once upon a time, when I was a missionary in Latvia, one of my long-term assignments was to serve as a Latvian Sign Language translator. Through my service in that capacity, signing became an integral piece of my soul and I always intended to teach my own children sign language.

Latvian Sign Language bears little to no resemblance to ASL, so I signed up for a community ASL class shortly after Justin and I were married. The teacher was a pervert who called me at home late at night a few times to hit on me with such questions as "have you been thinking about me?" and "what do you like about me?" even though he knew that I was married. He was deaf and the conversation would have been awkward with a hearing person, but it was really icky being translated through the TDD relay system. I'm sure the girl who was relaying on our behalf had the willies. I got my money back on the class and never pursued it again.

I planned to learn something for Kinley, but she started speaking freakishly early, at 10 months. She was in full sentences by 14 months, unnerving people at the grocery store with her tiny body and gigantic vocabulary. Tanner didn't speak as early, but I kept expecting him to start at any moment, so we didn't do sign for him either.

But now... I have my signing baby!

We are working on a few signs, including "up", "more", "want", "eat", "drink", and "all done". We bought the first two Signing Time DVD's and watched the first one last night. Kinley is by far the most excited about signing. She has been practicing all day.

We are also working with Crew to help him make choices. Choices require him to point, reach, or otherwise make a physical gesture to indicate his desires, which will eventually help him realize that he can just start asking for things once in a while. I'm an awfully gifted guesser, but it would be a lot easier on all of us if he would just tell us in some way what's on his mind without the extra drama. When he wants/hates something, he simply starts melting down and we start scrambling to interpret. Why would he do anything else when this irritating method has worked so marvelously for him thus far?

As for the main point of this post:

For the last several days, Crew has responded enthusiastically and without tears to the question "do you want UP?" I don't even have to reach for him to give him a clue. He is responding to the verbal question alone and it's absolutely fantastic!! He is even asking sometimes without being prompted. He simply smiles and throws his arms up to ask me to pick him up. See how cute? No panic in his eyes, no tears.

He has mastered his very first sign. I feel about this the way I felt about him learning to sit. Once he finally started sitting, I felt confident that crawling and walking would come eventually. I believe that now that he has realized that he can tell me what he wants on this issue, it's only a matter of time before he starts making a whole litany of requests!

In other development, Crew now rolls around instead of just rolling over. He now tumbles around the room, getting stuck in all kinds of places. It's awesome! No longer does he just cry or quietly give up if something he wants is too far away from him. He has figured out that he can get it.

His skills are exploding and we could not be more proud of our little guy. Go, Crew!

Asparagus

Here are some photos of the Critter tasting his first asparagus.... is he so cute or what?

Woo-hoo-haa-haaa!! He's mine, all mine!

Bumbo Nap

Sometimes you just have to accept naps wherever and whenever you can get 'em.

Crib Critter

He's been in his very own bed for two nights. He didn't wake up once through the night. In fact, he is still sleeping. He was snoring like a wee little log when I snuck into his room this morning to find school clothes for Kinley.

Perhaps it was all the flan he ate at our friend's (uber-fantastic, ultra-delicious, mega-fun) Cinco de Mayo celebration last night. Hopefully he'll be in a great mood for his PT appt this morning.

Co-Sleeping Is Not In My Wheelhouse

We tried it.

We hated it.

We let the Critter linger another few days in the interest of his full recovery (plus, co-sleeping has always been my secret wish). I'm now ready to get the energetic, heat-seeking wiggle-worm out of my bed.

Rollin' Kid

Crew rolled off the bed for the first time today!

Awful, huh? Yes, I felt really guilty and panicked some.

But it's also very exciting at the same time!! He has officially become untrustworthy on the bed! Wahoo!! Milestone!

Baby Fang

I spoke way too soon about Crew returning to his normal sleep-trained self. He has been a beast ever since I made that post, some days/nights worse than ever.

HOWEVER... last night at the park, in the fading sunlight....

He showed me the four new teeth he has been working on. He has one that must have popped through in the last 48 hours and three more that should be through by the weekend (oh, please be through by the weekend...)

I feel silly.

This explains so much.

Right There In Produce

I had a sweet experience this morning at the grocery store, one that has brought the last few years full circle. I was standing by the cabbages, trolling through my grocery list for the last time, making sure I hadn't left anything behind. In that moment, I was stopped by a woman with her own cart full of kids and groceries.

She rushed over to me and said, "You have a blog, don't you?! You are a digital scrapper, right? You had the twins?"

Yes, yes, and yes. That's me! (Plus or minus a few pounds...)

She then shared her feelings about our family, and told me how she has followed our story from the beginning. With emotion, I introduced her to our critters, including little Crew. I then met her small boys, including her new baby who was actually very nearly named Crew.

We hugged. Because that's ok in the produce section.

What a small world.

What a beautifully small world.

Is it lame that I was so relieved that we were all freshly bathed and the kids were well enough behaved that not a single one of us were in tears?

Crew Is Back!

Crew slept for 11.5 awesome hours last night! Welcome back, tiny prince!

Midnight Monster

Crew was sick a few weeks ago and we slept on the couch together for most of several nights. I braced myself to hold him the entire night, if necessary, but whenever his fever went down, he wiggled, arched his back, and whined until I put him back in his bed where he wanted to be.

He has slept happily and contentedly in his crib for the last week, 12 blissful hours each night, just like his old, sleepy self.

For the past two nights, we have been back on the couch together. (I choose the couch because Justin has to get up before dawn to work, so I leave the bed for him during midnight madness events.) While he is napping fine in his bed during the day, Crew has suddenly decided that the only place he can sleep after dark is in the crook of my arm. What in the world? Crew!! You are not a newborn!

He shrieks like he's being boiled in oil until I nuzzle him up tight and practically suffocate him with snuggles, pinning him between myself and the couch cushion. Then he relaxes and drifts into deep sleep, putting my arm into its own deep sleep.

On the one hand, it's very flattering. And kinda sweet. He smells so delicious.

On the other hand...

I CAN'T SLEEP LIKE THIS!!!!

We have mean plans for our little prince tonight. Unless I intend to hold him in the crook of my arm on the couch until he's 5, I have to make my move. I'm already so sad for him. I'll probably cry almost as much as he does. I casually suggested to Justin that maybe the tiny guy could join us in our bed long-term if he was really really quiet. Denied!

I'm about to pop open my second Diet Coke.

Big Boy Oatmeal

Crew ate about a dozen bites of big boy maple and brown sugar oatmeal this morning! He only gagged a few times and threw up a little bit once. All in all, a successful big boy breakfast!

Crew's Eval

PT Julie came and spent the last few hours with us, testing Crew. I was kind of dreading it, but was very pleasantly surprised with the results!

Crew is 17 months old chronologically, but his "adjusted age" is 14 months and we base all of our expectations on his "adjusted age", when he should have been born. The purpose of this testing is to see how far he has progressed, requalify him for services, and to evaluate where he is on the general continuum of development.

The results are in:

Gross motor: 8 months. This is about what I expected. His body movements, strength, and skills remind me a lot of Tanner and Kinley at 8-9 months. He continues to show steady progress in this area. His muscles continue to loosen and his coordination continues to improve, pushing an official Cerebral Palsy diagnosis farther from our radar. He needs time and work. Time we have; work we're willing to do. I have a private unofficial goal to have him walking by his 3rd birthday. Or before!

Fine Motor: 12 months

Self-Help: 12 months

Social/Emotional: 12 months

Language: 13 months

Cognition: 14 months!

I wasn't sure what to expect in all the other areas and was quite giddy with his placement. Not bad for a little guy born without a heartbeat who wasn't expected to live through the night, eh??

GO, CREW!!!!

He also continues to improve with his chewing and swallowing. I'm not ready to call in a feeding therapist yet, though they stand ready if and when I think we have reached an impasse and need their assistance. I can't justify the intrusion right now if he continues to progress, however slowly. He eats, chews, and swallows a little bit better every week/month.

Well, the little beast is worn out from his big day and needs a snuggle and a nap. I just couldn't wait to report the good news!!

Leaps AND Bounds

My little critter just started reaching very purposefully to be picked up. No more arm flapping and yelling. I get the one-arm lunge! Good boy!

He surprised us last night by rolling from his belly to his back to his belly in one motion. Whoa! He's gonna figure out soon that it's a viable method of transportation!

He slept for 12 straight hours last night. Ahhhhh.... that's a gift.

He's just doing a thousand new things a day! You crazy little miracle!

Widdle Cwew

He's all betta.

And he slept almost the whole night, except for a coughing fit that woke him for a widdle snack at 5:15. I can accept that. Gladly.

Cruddy Crew

Blech. This has been a nice week because Justin's sister Kayla has come into town and we've been able to enjoy spending time her and some of our cousins that we don't get to see very often. It's been a cruddy week because Crew has been sick.

He is much improved, but really gave us a scare on Wednesday night by presenting with a midnight 103.3 fever. That was with a full dose of ibuprofen in his system for a few hours. In fact, it may have been higher, but it was taking so long to climb the thermometer that I opted to stop taking his temp and get busy pulling out all the stops to get his temperature down. That was a pretty scary night.

He has been extremely cuddly, which would be enchanting if he hasn't been otherwise so pathetic. His cough has greatly improved and he is sleeping better. He still has a low appetite, but he continues to eat enough to satisfy my expectations. His fever is very low and sometimes nonexistent. His breathing hasn't been compromised (Chronic Lung Disease what??) Now he's mostly just fussy and wants to be held and carried about. And his boogies are none-too-charming.

I'm crazy tired since I haven't slept many winks since Monday night. Our couch is beautiful, but I've discovered that it's not that comfy, especially when it's shared with a fevered, hacking, wiggly little critter. I did get a 22-minute nap this afternoon in my sweet bed, which wasn't nearly long enough. Kinley and Tanner are still enjoying their naps and they are pushing 3 hours now. Little luckies. I just got Crew back down to finish his previously interrupted nap, but I don't dare lay myself down now, at almost 5 pm.

We have a nice weekend planned, if all goes well. Crew is so much better and I've already pre-fluffed my pillow in anticipation for tonight's good sleep.

Only 13 more days of tax season. I. think. I. can.

And Furthermore

Crew is a masterfully balanced sitter these days, even without full support from his legs if they are, say, dangling. THAT means...

As long as they have sterilization wipes...

Crew has started riding in the front of the grocery cart like a big boy! He. absolutely. loves. it.

Now, I'm gonna find one of those grocery cart covers. Do I have it in me to be that mom? That germophobic mom? Yes, I think so.

OT Who?

We had a visit from Physical Therapist Julie today. After Crew's gross motor workout, we talked about the future and I asked some questions that had been brewing in my noggin'. Among the many questions I posed, I wanted to know what she may see now or in the future that would cause her to submit a request for an Occupational Therapist to work with Crew again.

Are you ready for the answer?

NOTHING.

What she meant by "nothing" is:

#1. He recently started feeding himself cheerios somewhat successfully with his little pincer grasp.

#2. He is working through his minor feeding/eating/chewing/swallowing issues without intervention, and

#3. The weakness on the left side of his body has completely disappeared.

No more occupational therapy in our future. I can cross that off my list and stop wondering about it. I just feel so giddy.

Now that's a milestone. And I didn't even know we hit it.

In other cool things that Crew can do: He picked up Tanner's hat off the floor and put it on his own head. And took it off. And put it back on. Big boy! There is no end to his cuteness. I called Justin to tell him all about it and Daddy is insisting that we prove it by having him perform on command tonight after work. Ha! Wish us luck.

Popsicle Peer Pressure

I was inspired by this video of a certain tiny girlfriend.

Our own attempt started off promising enough.

Yummy popsicle!The inspection...
I. Will. Eat. This. Whole. Thing.
Suddenly, things took a very sharp turn for the worse. It was cold! Can you say "Popsicle Headache?!!!!"

Mmmmm..... Pizza

Basket Boy

Our Basket Boy is making progress. He is willing and able to kneel beside the basket these days for sometimes up to 5 minutes at a time without toppling or flinging himself. He can also self-correct when he leans a little too far in any direction, including backwards. It's thrilling to see when he is able to catch himself just before he passes the point of no return. I get a little shiver inside. He still doesn't love the process, but he didn't love learning to sit either.

I didn't get any pictures of it, but he took both hands off the basket this morning at one point. He played with a toy in one hand while waving the other around. Progress, progress! I did, however, get a picture of something else pretty cool farther down this post...

Enjoy these first.
Do you see how he is sitting low on his knees in this picture? Do you see how his bum is touching his feet?
Ta-da!! Up and off his feet! We've been working to strengthen his core and his hip flexor muscles to get him to lift up on his own. It's yet another of the four thousand pieces to pre-crawling. Yay, Crew!