Sunday, November 1, 2009

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."

Friday, October 30, 2009

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!

Thursday, October 29, 2009

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...

Monday, October 26, 2009

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.

Thursday, October 22, 2009

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, October 21, 2009

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

Tuesday, October 20, 2009

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!

Monday, October 19, 2009

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.

Saturday, October 17, 2009

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.

Monday, October 12, 2009

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?

Thursday, October 8, 2009

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.


Saturday, October 3, 2009

The Routine

Dear Crew,

I would appreciate it if you would please save your poopy diapers until after 7 in the morning. This relentless pattern of bowel regularity is getting very old.

Love,
Mommy

Wednesday, September 30, 2009

He Knows He's So Cute

Yes, he does.

"Light" Therapy

How do you get a lazy little preemie to grab and inspect? Turn down the lights and give him a glow-in-the-dark bracelet.

The Eval

Because we were embroiled on Monday in the other "intervention" (of the Kinley variety), we had to reschedule Crew's Early Intervention Evaluation for this morning.

It didn't go quite as well as I had hoped. Unfortunately, Crew "easily qualifies" for the program. We have been watching him steadily drop behind the charts, the cousins, and the neighbors over the last few months, but we hoped he wasn't that far behind. He is. His development places him somewhere between 4 and 5 and 1/2 months, though his adjusted age is 8 months (real age almost 11 months).

His teeny little body makes it difficult to see the delays sometimes because he behaves so appropriately and even advanced for a baby of his size.

Sigh...

So, back into the ring with OT/PT.

Blech.

Saturday, September 26, 2009

Motating

He is thinking about making a move.

The local Early Intervention Team will be here on Monday to evaluate our tiny prince. Justin calls him "lazy", I prefer to call him "content". He's cute, he's sweet, but he is definitely not a self-starter.

He makes progress when I'm very aggressive with his therapy (and has regressed during the last 3 weeks of chaos). Our pediatrician is not convinced yet that he has any Cerebral Palsy, but his continuing delays combined with his history are making him very suspicious of a mild, very manageable form. We aren't panicked about the possibility, just determined to work more intensely with him. I'm relieved that the most time-consuming part of the move is now behind us so that we can focus more on this.

Wednesday, September 23, 2009

What Keeps Crew Up All Night?

Growth spurt starvation?
Teething?
Overactive bowels?
Loneliness?

Mandee asked me on Monday how I felt about having Crew sleeping on a different level with a flight of stairs separating us. I replied, "He sleeps through the night without a peep, so it hasn't been a problem at all so far."

I'd like to amend that response...

Tuesday, September 22, 2009

Officially THE Weirdest Response

People have said some odd things about Dex, but this takes first place.

Lady, trying to count heads: How may children do you have?

Megan: These three, plus one more in heaven. Our baby is a twin.

Lady (while patting our baby on the head and talking to him): Awww.... it's a good thing! Otherwise you little guys might have fought all the time, and then it would be harder to get into heaven!

?????

And before you ask, I was too startled to respond coherently. I'm really not that quick on my feet. I understand not knowing what to say, but really.

It was actually too weird and clueless to be completely offensive. Justin and I shared a morbid chuckle later.

What? You Say You Want to KISS This?


Crew "Helping" Unpack




Monday, September 21, 2009

What Matters Most

Sunday, September 20, 2009

First Tooth!!

This morning while Crew was gnawing on my hand in his usual voracious way, I noticed a "sharp" difference! A wee little tooth has popped through on the bottom! I can't believe it! He's my earliest teether by far! He also has started eating chunky foods and is doing unexpectedly well with them. Furthermore, he has started sampling vittles from my dinner plate and he loves his mama's cookin'. He's growing up so fast!

Friday, September 18, 2009

That Sweet Boy Of Mine

Last night I had a baby shower in the old neighborhood, so I stopped by the cemetery on my way. The very moment that I turned into the gates, the song When I Get Where I'm Going came on the radio.

I met a woman there, a mommy new to the Angel Garden. She's a single mom that just lost her baby a month ago when her angel grew wings at 37 weeks gestation, due to an umbilical cord accident.

We talked, hugged, and had ourselves a good cry beneath a very bright and very unexpected rainbow shining across the mountain. We're so lucky to have such kind and loving children who so sneakily help arrange these special healing moments for us.

Dex has good friends in the Angel Garden. Mercy and Nevaeh ("Heaven" spelled backwards) are just a few of the special people he knows. Ash, be on the lookout for a new tribute going in just a half step away from Mercy's stone.

Wednesday, September 16, 2009

That Which Doth Not Kill...

...Made Crew stronger!

He took a 4-hour nap this morning, woke up happy, drank a good lunch, and then... drum roll please...

rolled all the way onto his belly from his back!  Yay, big boy!!  He's been trying to do that for a long time and has finally succeeded!  Wahoo!

Dear Crew

I am so glad that you seem like you might be thinking about feeling better. Two nights in the rocking chair, holding you while you cry, hasn't been good for my sanity. Or my back.  Please wake up from your nap happy.

Love,
Mommy

P.S.  Thanks for puking on the kitchen floor and not the carpet.  You're a good boy.

Tuesday, September 15, 2009

Chuggin' Along

I won't say that today was the worst day of my life, but it wasn't my favorite either. Justin and I have been up since 1:00 in the morning with Crew feverish and miserable. He never did throw up like Kinley did, but he screamed most of the night. I can't believe he didn't wake Kinley. What a blessing. Tanner woke up this morning with a fever as well and has been a little whimpery and lethargic, but otherwise seems to be on the mend.

All night I was absolutely dreading the dawn because I knew we would be finishing up the townhouse clean up. Blech, blech, and double blech. But: We. are. done. Halla-freaking-lujah. Crew alternated between crying and sleeping in his carseat and Tanner whined on a neighbor's couch while Justin and I worked. I need to scrub the hard water off the shower doors again and pack up the final freezer items in a cooler and then we're done!

Kinley has survived her first two days at school. She's at an "excellent" school, by all reports, and I'm anxious for her to get into a groove. It's definitely going to take some adjustment... for all of us.

I'm tired and I need a nap. I found an old freezer meal stashed in my freezer at the townhouse. Homecooking tonight! With no work!

Friday, September 4, 2009

What We've Learned In This Home

We've been living in this townhouse for exactly 6 1/2 years. Kinley was 3 weeks old when we moved the last time. For all intents and purposes, this is where we became parents. While we are excited for our new adventures and upcoming fresh start, we will dearly miss this beloved little community. In the last 6+ years, we've learned more than we thought possible and have made some treasured life-long friends.

I'd like to think that I'm leaving this area a better person than I was when I came into it, and if that's true, it's because of the people I've been surrounded by. I've been mulling over the things I have learned in the last 6 years, feeling extremely grateful for the opportunity that we have had to be here.

Things I've Learned
  1. We are all more alike than we are different
  2. If you "build a girls night out, they will come".
  3. I'm not weird; I'm "quirky"
  4. Everyone thinks they are the weird one
  5. Women love food. The End.
  6. You don't have to be afraid to bring up someone's loss or struggle. Sometimes they really want/need to talk about it with someone who isn't freaked out by it.
  7. There are all kinds of people that live in Utah (who knew?)
  8. Utah is a great place to raise a family (again, who knew?)
  9. People have struggles and challenges in Utah, just like everywhere else. Drug addiction, divorce, illness, single parenthood, lonliness, depression, etc.
  10. Playdates are really fun
  11. Entertaining children doesn't have to cost a lot of money
  12. Blogs make the world go round
  13. The world doesn't generally play fair
  14. It's ok to be different
  15. Bad things happen to good people
  16. Everyone has baggage
  17. Most people really mean well and would never intentionally hurt or offend anyone
  18. Everyone is looking for understanding and friendship
  19. You can learn to love anybody
  20. First impressions are often misleading. Take another look.
  21. I like juvenile and teen literature. A lot.
  22. Kind words make a huge difference
  23. Chicken soup tastes best when someone else makes it because they add their own love
  24. There is always someone else in a more difficult situation
  25. If someone is on your mind a lot, you should call/email/text them
  26. Nursery callings are not for the faint of heart
  27. You don't have to hide your ambition and eccentricities to fit in
  28. You can find happiness anywhere
  29. Food in general tastes better when someone else makes it
  30. Visiting Teaching is an inspired program
  31. Houseguests should stay no longer than 6 days
  32. Lime Away and CLR are fantastic for removing hard water stains
  33. DVD players are not a passing fad. Neither are cell phones.
  34. We are "mini-van people" after all
  35. I don't hate football
  36. A great stylist and enough product can make your hair do marvelous things
  37. Losing weight is possible
  38. Endorphins rock
  39. The 5 "S"es are sanity-saving
  40. We make super cute kids
  41. People can change
  42. Sometimes people don't change
  43. I wouldn't choose to see my trials in advance, (ie. a crystal ball). They are so much more palatable without anticapatory anxiety.
  44. I would choose my own trials over those of other people. Except wealth. I'd like the trial of wealth. I'd like the burden of being filthy, stinking rich.
  45. Life is short
  46. All women should have a proper bra fitting done by a professional
  47. There are worse things than being up at night with a crying baby; like not being up at night with a crying baby.
  48. What "they" say about making "ass-umptions" really is true
  49. It really is better to have loved and lost than never to have loved at all
  50. Women need other women
  51. Bedtime stories make lasting memories
  52. Magic Eraser is, well... magic
  53. PhotoShop Elements is also magic
  54. Speaking of magic, Disneyland is great at any age

Wednesday, September 2, 2009

Spin, Spin, Spin...

I have reached the so-not-fun part of pack, pack, packing. I'm overwhelmed by the piles of "miscellaneous" that I don't want to sort through. Blech.

Tuesday, September 1, 2009

"They" Say...

"They" say that you shouldn't make any major changes for the first year after a devastating loss or tragedy. "They" say you shouldn't do anything crazy like change employment or move residences or make a radical hair transformation.

What do you think "they" would say to us doing all three? Bu-wahahahahaha!!

Speaking of "the move" coming up next week. I have officially reached "overwhelmed and paralyzed". It struck early this afternoon. Yay!

Growin' Boy

My Crew has just entered the exciting world of 3-6 month clothing!

Diva Darbi

Crew got a special visit this weekend! We love you, Darbs!

Friday, August 28, 2009

Smooches

It may not be a face that only his mother can love, but his mother sure does love this face.

Wednesday, August 26, 2009

Crew on Vacation



Playing with cousin Karlee

Chillin' with cousin Tora



Tuesday, August 18, 2009

Baby For Sale

We are currently entertaining bids for the Midnight Monster.

Crew, previously known as the "Super Sleeper", is going through a bit of a "transition period", sorting out his feelings about swaddling.

I rewarded him this morning for last night's shenanigans with a big bowl of green beans for breakfast.

Saturday, August 15, 2009

He Sits

Yes he does. Very briefly, but he is definitely making efforts. It's a little startling for me to see a baby the size of a 3-month-old sitting up by himself. He and Kinley can join the circus together. I'm really proud of him.

Thursday, August 13, 2009

Clarification

Because of a something someone said to me, I started to wonder if I was unclear in one of my recent posts. That happens sometimes.

When I said "it took a lot of convincing, but I see the need..." I meant (and have now edited) that it took a lot of convincing from my pediatrician. I didn't convince him that Crew needed more intervention; he strong-armed me.

It just goes against my nature to freak out and interfere with Crew's development when I'm not 100% convinced that he is officially "behind". I know for a fact that he's not very behind and if he was, I would be the first one in line sounding the alarms. I've been more of the attitude that he's gentle and mellow and taking his time. So he's not at the front of the charts for his milestones; so what?

My confidence in diagnoses and prognoses was completely shattered by our NICU experience and so many of the insane, unnecessary interventions they tried to pull off, particularly by our OT at Primary's. I never got around to documenting the insanity with that crazy woman, but she has scarred my opinion of occupational therapy pretty irreparably. I now take all opinions with a gigantic bucket of salt and have major trust issues with those that are supposed to help us. I trust our pediatrician a lot more than anyone else, so I'll listen to him... for now, LOL! :)

My experience in the NICU has probably driven me to the opposite extreme, but I endured so many overreactions and misplaced, conflicting reports during those 94 days that I just have no tolerance for that kind of drama now. When some stranger spies an area of mild, potential concern with Crew, my first inclination is to do an internal eye roll and a silent sigh.

And don't even get me started on "specialists". My Primary's OT was an "eating specialist" that wanted to put Crew under general anesthesia and shove a camera down his trachea to investigate this mysterious "stridor" or "wheezing noise" that he did when he ate. You know, the kind of gentle wheezing/grunting that almost all babies do when they eat? I had to raise unholy hell to put a stop to that one, just in the nick of time. Just one of dozens of frustrating events that still raise my hackles when I think about them.

I'm trying to find the proper balance as we negotiate these waters. I (obviously) won't overreact to Crew's nontraditional development, but I don't want to underreact either. I want him to have exactly what he truly needs and I'm willing to go to the moon to get it, but I simply don't have it within me to hang my fears or my peace on the authority of the Hawaii Early Learning Profile. Let's just see how this plays out before we get our panties into a knot, shall we?

Therapy

Well, we've been doing our physical therapy, as we pinky-promised our pediatrician that we would. After 4 sessions, Crew appears to be thinking about maybe making some small efforts toward sitting up. Basically, he doesn't collapse in half, burying his face in his feet 100% of the time. More like... 85% of the time. It really is helpful to have one of the kids stand over my shoulder to encourage him to look up and try to hold himself up a little. My face apparently isn't exciting enough.

He remains slow to grab at items, but once he gets it into his hot little mitt, he almost always brings it right to his mouth, which is a good thing. I can't be positive, but I wonder sometimes if he favors his right hand/arm. Justin doesn't necessarily think so, but we're watching it and encouraging him to use both hands until such time as it becomes normal and appropriate for him to favor one hand over another.

He rolls onto his side all the time and every once in a while comes close to rolling all the way onto his belly. He manages to flip himself over often enough from his belly to his back.

Messy? Me?


My Helpful Supergirl


Kinley is 39 pounds. Crew is 13 pounds. Kinley doesn't seem to realize or care that Crew is exactly 1/3 of her weight. That's like me hauling around someone who is... ahem... 1/3 my weight! She packs him up and down the stairs and all around the house like a big, fat teddy bear. He absolutely adores her. He knows and loves his siblings very much. During therapy sessions, I find it very helpful to have one of them standing behind my shoulder because he'd rather look at them than at any toy we own. He'll try harder to sit up if he knows he'll get an eyeful of Kinley or Tanner for his effort.

Wednesday, August 12, 2009

Cerebral Palsy

Cerebral Palsy has been thrown around as a possibility from "day of life 1", as they call it in the NICU. We meet with a neurologist from time to time to assess Crew's progress. Several weeks ago we met with our neurologist and got a "so far, so good, but it's too early to declare victory". The usual. At this stage, it's impossible to tell to what degree, if any, someone may suffer from cerebral palsy, though there are often early indicators if it's going to be catastrophically problematic. As of now, she sees nothing to indicate a serious level of cerebral palsy and if she had to guess, if he does present with cerebral palsy, it would likely manifest itself as clumsiness and/or questionable dexterity.

Nevertheless, I thought it would be beneficial for my organizational needs to finally put all of my research on risk factors into one place. If nothing else, to prove that I'm not ignorant of them, LOL!

At one time this information was daunting, and I've withheld it to this point because it felt so melodramatic to post it. But, you're big girls and boys and won't read too much into it, I'm sure. Promise to refrain from freaking out?

Top Risk Factors for Cerebral Palsy
Any one of the following circumstances raises a child's risk factors by quite a bit:

1. Being a twin -- check
2. Being an identical twin -- check
3. Suffering from TTTS -- check
4. Having the sibling twin die while still in the womb -- check
5. Having a twin die as a result of TTTS, inside of the womb or out -- check
6. Being born less than 30 weeks -- Crew was 28, or 26 depending on who you ask.
7. Weighing less than 1500 grams at birth -- Crew was 684 -- "Infants born with a very low birthrate (i.e. under 3 pounds 5 ounces, or 1500 grams) have a 25 times more likely chance of acquiring cerebral palsy."
8. Having newborn seizures -- check
9. Having a low Apgar score -- Crew scored a 1 at birth, a 6 after 15 minutes
10. Being born without a heartbeat -- check
11. Having surgery/general anesthetic as a newborn -- Crew had 4 before he was considered "newborn age".
12. Having any kind of interruption in growth outside of the womb -- check
13. Having any kind of nutritional absorption issues early on -- check
14. Intrauterine growth retardation -- check, Crew was the donor twin and measured far too small and undeveloped for his age
15. Complications of labor and delivery -- check
16. Having a brain bleed, particularly a grade 3 or 4 -- Crew had a grade 1 or 2, possibly a 3, but doubtful
17. Babies who need to breathe with a ventilator for more than 4 weeks -- check

I'm not oblivious to the possibilities and risk factors here, but I'm also not surprised when his evaluations come back mystifyingly positive and reassuring. "It should be noted that these are risk factors, and not determinants, of cerebral palsy." I think there is a fine line between being proactive and overreactive. If I became a nutcase about every possibility that was thrown at me during our NICU adventure, they would have had to lock me in a padded cell very early on. He was going to be a "vegetable", you may remember. A few times they were just sure he was going to die. I did become highly concerned over a number of those things and it was all part of the roller coaster that I jumped off of 6 months ago.

Nevertheless, we have done two of our little 30-minute "formal therapy sessions" and... it was actually really fun. I agree that if he does have any degree of Cerebral Palsy that we want to be ahead of it and not behind it.

So, our tiny miracle continues to beat the odds and we will continue to watch him closely to help him be the strong little tiger that we know he is. Needing extra assistance in no way makes him less of a miracle to us. We've known that all along, but have gotten careless and lax with his plentiful successes. He has spoiled us with how "normal" he is with so many things that we have started to take his progress for granted.

I love this little guy. But he needs a bath right now...

Tuesday, August 11, 2009

The "N" Word

Crew had two doctor visits this morning. One was to the eye doctor. Beyond all expectations, we received a clean bill of health from Dr. Larsen on Crew's little peepers. So clean, in fact, that we are no longer considered active patients. Done. See ya. Ba-bye. 'Don't let the door hit you' and all that. Crew's eye development is now "normal", as if he never had ROP and had been born full term. I told him that we just love the "N" word.

In other good news, we visited the pediatrician and got great news on Crew's weight and height. He is 13 pounds, 4 ounces, which is actually a spike in the charts. He has made the exact same spike with his height and head circumference. We haven't had him weighed in more than 2 months and I was feeling like he might be plateauing in his weight gain. He is still in 0-3 month clothes, after all... Imagine my surprise and delight to know that he has finally hit the charts. He is officially in the 5th percentile for his adjusted age of 6 months! Yay, little fatty!

That was the good news. I don't have any really bad news, but I do have a bit of chagrin and conflict of heart.

I am very protective of Crew (like I need to tell you that). And in general I don't get all that worked up about milestones with my kids. Kinley was quite late in her gross motor skills, but was an early talker. Tanner was a late talker but his gross motor skills followed a more average time table. That being said, Crew is a different story and remains at high risk for delays, etc. and we've had to be more concerned about his progress; nevertheless, I still find myself resisting getting all worked up over the fact that he isn't sitting up yet or doing a few other things "normal" 6 month old babies are "supposed" to be doing. I find myself defending his right to take his time.

It's a hard balance for me to strike because I want to help him all that I can, not be in denial, nor neglect his needs, but I have a hard time forcing him before he's ready because, generally speaking, this stuff just isn't that important to me unless it's a really big delay. When people start freaking out about how tense his muscle tone is, all I think is "yeah, he has high muscle tone... just like his brother and sister did." In most cases, babies will cross their bridges when they feel like it. It's difficult for me to admit that Crew is not most cases, because that feels like a huge overreaction to his "delays". I hate it when people overreact to Crew's complexity. No, I am not in denial of his risk factors nor am I afraid of the possibilities, but can we all just calm down and stop seeing boogeyman shadows under the bed?

That brings me to the chagrin. We are now entering a critical stage of Crew's development, where we are requiring more of him. He's starting to fall "behind". It took a lot of convincing from our pediatrician, but I can see that Crew needs more intervention than I'm currently giving him. We play a lot and get a lot of high-fives from our OT on his overall progress, but I'm not "working" actively with him regularly and it's starting to show in the details. Crew and I will now be entering a phase of more intense physical therapy, 30 minutes a day of Mommy/Crew time. Less play, more therapy. I'm conflicted, but resigned. I can see the need and Justin's been singing this song for months, but you know how I feel about being a slave to the development charts and this feels a little like that.

Lesson Learned

Note to self: Don't ever ever do a bum-sniff-check with a mouth full of yogurt and granola...

Wednesday, July 29, 2009

Sweet Baby Crew

HONK!

Honk if you just kissed the computer screen!

This is Crew going down for a nap in his swing. He sleeps all night in his crib and currently takes all of his naps in the kitchen, swinging. I'll transition him once we move, but I'm not in the mood to rock the boat just now... er, the swing.

My favorite morning sound is the contented finger slurping down the hall. No crying, no fussing, no whimpering unless it takes me a really long time to figure out that he's really awake. Just the occasional "are you going to come get me, or what" grunt, and always the slurping. Slurp, slurp... Without that hilarious sound, I honestly wouldn't even know he was up sometimes! I still am not quite sure how long he does this before he's loud enough to alert me!

It's so much more pleasant than how Tanner and Kinley used to wake me up at this age...

Just One of the Kids

Crew woke up from a nap in his swing while I was otherwise occupied. Kinley took him out of his swing without interrupting me (which was kinda sweet), and when I went downstairs I found a perfectly content Crew... laying down on a blanket in front of the television, happy as can be, completely mesmerized by the Disney Channel.

Ugh. Cute, but horrifying.

---------

In other sibling inclusion news... the following is a conversation we had over the weekend. Keep in mind that Kinley packs Crew around the house as though she doesn't notice that he's almost half her size:

Mommy: Kinley!! Bring him back here right now! Crew doesn't need to go to the basement with you! Go play without him!

Kinley: Oh, but Mommy, we can't! Tanner and I are having a tumbling competition and we need Crew to be the judge! Whoever can make him smile the most is the winner!

Tuesday, July 28, 2009

Neck Cheese

While Crew was attempting to laugh at Kinley's funny faces...

Kinley: Look! He's trying so hard to laugh at me! Sigh.... this is a beautiful moment!

Wednesday, July 22, 2009

Kinley's Moment

While Crew was attempting to laugh at Kinley's funny faces...

Kinley: Look! He's trying so hard to laugh at me! Sigh.... this is a beautiful moment!

Monday, July 20, 2009

NICU Crew

Play below or you can watch the larger version by clicking here.

Saturday, July 18, 2009

Anxiety

I've been in kind of a weird mental place lately. This upcoming move has really brought a lot of things to the surface. Things that, frankly, I'd rather stuff than confront.

I've been spending a lot more time at the cemetery, knowing that our visits will be fewer and farther between when we move. It really is a beautiful, peaceful, happy place. The kids ride bikes and we take long walks, trying to piece together some of the stories we find. It's reaffirming to remember that everybody dies sooner or later. And it's so exciting to know that this life is just a stepping stone into a grand continuation beyond the veil.

People have asked how I feel about "leaving Dex" when we move. Ever since his headstone was placed, I've found myself being very protective of him and his earthly tribute. In anxious moments, I make Justin promise that our visits to his grave will be frequent. In stronger moments, I feel fine moving away because he has reminded us on so many occasions and in so many ways that he is not there. Kinley feels sure that he joins us for family scripture study. Tanner asked at dinner the other night if Jesus was going to drive Dex to our house in a car so that he can live with our family again.

I find myself up a lot at night. Sometimes it's because the Tiny Prince has unswaddled himself and wakes up thinking it's snack time. Other times I am just up, thinking about the future and mentally solving potential catastrophes unnecessarily.

I don't consider myself a pessimist by nature, but this last year has been pretty overwhelming in a lot of ways and apparently it's affecting my psyche. It was a year ago that we found out that we were expecting twins. It's been one... "adventure" after another since then. Now that life seems to be leveling out, I find myself terrified to let down my crisis-guard.

Justin's job situation has finally stabilized and I'm absolutely in love with our house-to-be (which we closed on Thursday, yay!) My children are healthy, things are really mellowing out; it's almost like things are too good to be true and I'm waiting for the other shoe to drop, anticipating another major disaster.

I just can't seem to embrace the possibility that maybe my "Nauvoo period" is starting. I've been running on adrenaline and faith for so long that I can't figure out how to turn off my crisis-radar. I check to make sure Justin and the kids are breathing all night long; every time we get on the freeway I think "this could be the end of us. All it takes is one mistake." I went through a similar experience after we came out of the 7 months of cornea surgeries following the Great Candyland Incident. It took a long time to stop bracing for looming disaster. This feels very similar... only more intense.

Blech. This grieving thing is really icky sometimes.

Tuesday, July 14, 2009

He Laughs!!

Hallelujah, the Tiny Prince has laughed at last! At 5+ months adjusted, we have been waiting for this moment for a while (the usual window is 1-4 months). Grandma B. had him laughing up a storm over the weekend. Justin and I were so happy; I'm such a boob that I cried! We haven't been able to get him to do it again, but he did it! He did it!
In other medical news, we went to the neurologist on Friday morning and got a thumbs up. He's doing great! We'll see the whole neonatal follow-up team again in November.

The Hunter Visit

This is a picture of Tiny Crew with DeAnna back in December, around 2 pounds.And here he was last week with Miss DeAnna, now over 12 pounds!
DeAnna brought her father, "Grandpa Hunter", for a visit. He has been in very poor health for a long time and this is the first time he has been able to see Baby Crew in person. It was so nice to have you here! Thank you so much for coming!

The Tiny Prince and Me

Lingering Misconceptions

Kinley: Mommy, I've noticed that you are drinking a lot of water lately. A LOT of water. I don't think you should drink so much.

Mommy: Why? Drinking lots of water is really healthy for you. We should all drink more water.

Kinley: Water is good for us, I know. But I don't want you to explode again like you did when the babies were born! That was such a mess!

Sunday, July 5, 2009

Rice, Rice, Baby






Crew has had his first non-milk, non-pedialyte, non-intravenous fluid meal!

He did really well, better than I really expected. I tell ya, sometimes the Tiny Prince thinks he really is eight months old. While I can't declare with perfect certainty that he is my most successful first meal eater (though I do think that's the case), I can tell you that he is the first child of mine that opened his mouth wide like a hippo the first time he saw the spoon coming his direction. He is his mama's son.

He ate one tablespoon of rice cereal plus water. He lost interest by the last few bites, but he finished it!

Wednesday, July 1, 2009

Bumbo Baby

Hmmm.... what's this all about, eh?
He likes it!

Friday, June 26, 2009

Dex's Stone Setting

Dex's gravestone was set in the Angel Garden this week. We are so happy to have it in place.

My friend Ashley once said, "Headstones are a wonderful tribute, but what's even more wonderful is knowing the headstone isn't THE tribute. Our hearts are. I don't think there is a better gift, a more brilliant tribute, than a life led in goodness and joy."

She also gave me the idea to call the monument company and have them alert us when they were pouring Dex's stone so that we could come and place handprints in the wet cement. I love how it all turned out!
As expected, Crew's little monkey mitts were by far the most difficult to accomplish. We redid his contribution many times. We ended up with a hand-like print and a foot-ish print of his. The rest of us imprinted our hands, plus a special heart left from Mommy.

We had a very ironic and interesting learning experience with this part of the journey. They originally called us to do the imprinting as we were walking out the door to go to the Oquirrh Temple Open House. We had waited a long time for their call and I felt guilty and disloyal to Dex when I asked them to delay the pouring until the following week.

We toured the temple that morning as planned and I was reminded again that Dex himself is not in the cemetery. Dex was not waiting impatiently for us at the monument place. Do you remember how we were accidentally detoured during the tour? Let's just say that when the tour guide in the sealing room said "wow, what a wonderful privilege to be in the temple sealing room today, together with your whole family!" she had no idea how right she was.

The Lord's mercies are very tender indeed. My darling Dex continues to watch over us as we navigate the complicated mortal journey. I love him, I miss him when he isn't near, I appreciate all he does for us, and I'm so blessed to have him as a son.

Wednesday, June 24, 2009

Blessing Crew


Twice this month we have had the privilege of attending the blessing of babies that are dear to our hearts. First our NICU friend, Leo, and this past weekend our sweet niece Tora. These recent experiences have given me the opportunity to reflect on the circumstances of Crew's blessing.

You may (or may not) have noticed that there are no pictures of Crew on his big celebration day, no announcement of his blessing, no invitations to a luncheon. You may have wondered exactly how long we were going to wait!

The fact of the matter is that we had him blessed in the hospital when he was 10 days old. Our stake president and bishop gave us permission to give him a name and a blessing whenever we felt it would be appropriate. While we know that it is not theologically necessary for Crew to have the ordinance performed before death, it was very important to us emotionally to have it done. When Crew was life flighted for emergency surgery on his bowel rupture, we didn't know how things were going to turn out. Having already buried one son 5 days before, it didn't seem so crazy to think that this one might not make it either. We felt the time was right to have him named and blessed, just in case...

I wish I could remember the words of the blessing, since I have been able to write down and reflect upon Kinley's and Tanner's over the years. I remember a vague feeling of peace and that's it. It was such a stressful situation that it required all of my focus to simply remain on my feet near my baby.

Crew has had many many priesthood blessings since that day. We have seen the hand of God perform miracles on our tiny prince time and time again. We have been very blessed in tender moments that are too sacred to share. My life would be very different without these rich, unspeakable blessings that have come at the cost of so much sorrow.

Nevertheless, I found the very human side of myself grieving this weekend over the "blessing day that never was". I was completely blindsided by the unexpected emotions. I have managed to stuff deep inside the pictures I once had in my mind of blessing my two treasures in their matching white outfits. Because Crew's "official blessing" was so different and so incomparable to previous fantasies, I had been able to successfully repress my sorrow over the loss of Dex's special day as well.

I felt very silly to be thinking such thoughts. I just wasn't anticipating them at all. We have had such wonderful experiences with Dex; he has slipped into a very real and very important role in our family, and spiritually I feel quite comfortable with our situation. And you already know the joy I feel in Crew's path. I wish I could adequately express in words the happiness and absolute peace that fills my heart because of the perfect mercy of the Lord. Therefore, it felt so ludicrous to be hung up on the mortal side of things. I guess though, it might have to be "my normal" to be content in the eternal perspective and still allow myself the moments to say "my baby died and that's really sad!"

Can I have joy in our situation and still feel bereft of the mortal dreams we once had? Apparently so.

At my mother-in-law's suggestion, I dressed Crew up in his blessing outfit and took pictures. It was emotional for me, but I'm glad that I did it. I didn't wash the outfit beforehand, so the "newborn" size still fits him perfectly. We bought matching outfits for Dex and Crew to be blessed in as soon as we knew they were coming. When they were born, soft white blankets were purchased and my mother-in-law remodeled Dex's outfit to be a beautiful, tiny burial gown. Crew's outfit has remained untouched in the closet until today.

I love my tiny miracle babies. I suspect that I'll continue to find myself sorrowful from time to time as we reach new milestones with Crew. He is so beautiful in white. He is so precious and so pure. My husband and my children are treasures, and I'm the luckiest woman in the world.



Cousin Fun

All of the cousins on Justin's side of the family were together for our whirlwind, quick trip north. We went up on Saturday and came home on Monday morning. They managed to squeeze plenty of fun into that time.Ellie, Karlee, Dex, Crew, and Tora were all born within the last year. That's a lot of quilts for Grandma to make! Each of Justin's 3 siblings (and us, of course) had at least one baby this year, for a total of 5 new grandbabies in 9 months! I never would have seen that one coming!
Tora is the most recent addition to the brood. She's cute as a button, and had the good manners to arrive smaller and lighter than Crew is currently.
All ten of the little monsters.

Daddy and Crew

Justin is the best daddy ever.




Thursday, June 18, 2009

Smoooooooooch!

Who has the most kissable, lovable little baby in the whole wide world??


Friday, June 12, 2009

Oquirrh Temple Open House

This morning we attended the Oquirrh Mountain Temple Open House. What a fantastic experience for the whole family. None of us have ever been to a temple open house before (our lives were kinda complicated when the Draper open house was going on), so this was a new and exciting treat for us.

It is beautiful and peaceful, small, yet elegant. Our favorite rooms were the sealing rooms at the very end of the tour. "Somehow" in the congestion of the walkways, I took a wrong turn and bypassed the sealing rooms altogether. I couldn't hear Justin's urgent whisper, so obliviously continued on my merry way. By the time Justin caught up to me and we circled back to where we left the path, most of the rest of the people in our large group had already gone through and we were "coincidentally" ushered into a sealing room all to ourselves, just our family. It was very special indeed.

I am so thankful that the Lord loves us enough to afford us the merciful opportunity to be together with our families forever. "I love to see the temple... for the temple is a holy place, where we are sealed together. As a child of God, I've learned this truth: a family is forever." Heaven just wouldn't be very heavenly without my family.

Monday, June 8, 2009

They're "Sucking Blisters"

My pediatrician informed me with a laugh of the politically correct term "sucking blisters" when I was complaining about the "self-inflicted hickeys" that Crew is sporting all over his wrists.

Now you know and you too can be politically correct.

I love how he slurps himself. I love how deeply committed he is to his hands and his wrists. When he's in a slurping mood, you can hear him down the hallway, tasting his yummy fingers, hands, and wrists. This kid is so cute! He is just too much cuteness and sweetness. His personality is really coming out lately, the big fat flirt. He is gentle and patient and sugar-sweet. He is happy and sociable and smiley. He's my gooseberry and I just can't help covering him in kisses whenever he is in range of my lips. He's an embarrassingly good baby and a sweet sweet treasure.

I love you, Crewton, and I'm so glad you're mine. Thanks for coming to our family.

Crew Update

Crew will be 7 months old this week, with his adjusted age of 4 months. We went to the pediatrician this morning and he is doing really well. He continues to grow better than we have any right to expect and weighs in at a hefty 10 pounds, 14 ounces! He has dropped a little in height advancement (like we didn't see that coming from a mile away. Sorry for the genetics, Crew!) His head circumference continues to grow perfectly, hallelujah! He is scarring over nicely from his myriad surgeries and is super active, wiggly, and sociable.

In really exciting news, in the last three days he has finally started to reach for things. He doesn't do it very often and he doesn't do it very well, but we can tell that his attempts are purposeful and it makes us breathe a little easier. We've been waiting on this milestone for a while, starting to bite our nails about it.

In other great milestones, he now sleeps through the night! Wahoo!! He wanted a snack at 5:30 this morning, but generally he goes down at 8 or 9 at night and sleeps for 10-11 hours. He's such a lovey little kid. He needs a bath just about every day. I don't remember my other kids being so stinky, but I think his specialty formula leaks through his pores when he sweats and gives off a funky odor. Ick.

To my sadness, he seems to be through his licking-mommy's-shirt-all-day phase and has moved onto regular-ol'-drooling. It was just so cute of him to explore his surroundings with his tentative little tongue. I miss it already. He still loves to be packed around in his sling and he has even fallen asleep a few times on my bed, in our laps, and in his swing, without being swaddled. Whoa.

Our little trooper is beating all the odds, continuing to thrive and surprise us every day. Kinley said the other day, "Mommy, Dex is our miracle baby and Crew is our other miracle baby. When you were still pregnant, I didn't know we were going to have two miracle babies in our family! I thought we were just going to be a regular family!" I just love that she considers Dex another special miracle in our lives because that is how Justin and I view him.

Tuesday, June 2, 2009

Crew and His Darbi

Nanny nanny boo boo... I got to hold Darbi tonight...

Finally someone else can be the runt in pictures. It's about time Crew dwarfs someone, don't you think? This is the first time Darbi has actually seen Crew, since her eyes were sealed shut and all the last time they were together at Primary's... but we've been telling her how handsome he is and I hope he didn't disappoint. Crew played the role of the mellow comforter for his tiny diva, but seemed to only have eyes for Darbi's mom. Hmmm... lookin' for a cougar, son?
We've come a long way, baby... I mean babies.
Darbi and her beautiful Mommy, Audrey.
Clint and his brother Kade, the willing baby bouncers, but reluctant photo posers. Thanks for being sports, guys. I couldn't help but capture how sweet you were.

Welcome Home, Leo!

After almost 7 long months in the NICU and more than a dozen surgeries, our tiny brave soldier friend Leo has come home at last. Congratulations to the whole Miller family! You remain in our prayers and we are so so so happy for all of you!

Sunday, May 31, 2009

All Better!


Surgery Pix

Crew seems to have overcome the worst of the surgery. The swelling has gone down a lot and his fever has finally abated. He is smiling again and has resumed eating a respectable amount. It's been a tough few days for him and I'm glad he's feeling better at last.

This was taken while we were waiting for the surgical prep team. We were all very tired, right out of the gate.
This is Crew with his surgery nurse, Jennifer, when they were on their way to the O.R.
This is Wasted, Confused Crew immediately post-op. Because of his age, size, and medical history, we stayed at the hospital for a few more hours than a typical patient, just to make sure he was ok. Crew and I spent that time dozing on his gurney together.I was pleasantly surprised with how quickly he came off the ventilator and woke up. It was still unsettling to watch him come fully awake, arching his back, squawking in frustration, confusion, or pain, I'm still not sure. We're glad it's over.

P.S. have you ever seen such a cute little hospital nightie? I fantasized many times about throwing it into my take-home bag :) He looked so darling in it!

Saturday, May 30, 2009

Tender Mercies

"Of all the gin joints in all the towns in all the world, she walks into mine."

Our our way to the library this afternoon, I was struck by an urge to stop by the cemetery to visit Dex's grave while it all still looks so beautiful and festive after Memorial Day. Five minutes after we got out of our car, who should arrive, but
Mercy's mom!

What a wonderful surprise! Talk about tender mercies in my day (and tender Mercys...) Ashley and I have never met face to face before. We have been email and blogging friends until our unexpected cemetery encounter today. It was such a blessing to be able to spend some time talking together this afternoon about our angels and our experiences.

Thanks, Dex and Mercy, for bringing us together today. You're so sneaky.

Surgery

Wednesday
Crew is scheduled for surgery tomorrow morning at 8:30. He and I will be headed out of here at 7. It's been a roller coaster of a week as far as this has been concerned. It's been on, off, tentatively on, and back around again.

This second issue (which was officially diagnosed tonight as a very mild hypospadia) really threw a wrench in things. But after dozens of phone calls and a whole lot of accommodation and fancy finagling by our pediatrician, a urologist at Primary's, and "our" beloved surgeon, we are back on tomorrow and both the hypospadia and the hydrocele will be corrected in a single surgery, here at UVRMC. Before the end of the month when our insurance expires.

Justin deserves all the kudos in the world for pushing this through and we are overwhelmingly appreciative to all of the doctors who graciously did everything in their power to get this arranged for us.

It's been an extremely stressful few days getting this all worked out and trying to make tentative decisions with less than all pertinent information, but in a weird way I'm kind of glad that everything was so chaotic because it took my mind off of the building tension I was feeling about him going into surgery at all.

For some reason, enduring (three) surgeries to get him home from the NICU didn't feel as hard as taking my big, healthy, happy, smiling, living-life-pain-free little guy back to surgery. OK, maybe it did, but I've blocked it all out.

Anyhoo...It really started to overwhelm me last weekend. I started thinking of him not being able to eat pre-op and taking him to the hospital starving and crying, him not understanding, etc. It was such a nightmare last time and he was a lot less aware of his situation back then. I started having bad dreams at night about him being back on the ventilator, envisioning what a 10-pound unconscious, drugged out Crew looks like. Ugh, it's been pretty bad. Plus, even though this is considered a very minor surgery compared with all of his previous trips to the O.R., general anesthesia is always a very tricky and risky proposition. We. hate. general. anesthesia. and. we. hate. ventilators. We hate having our tiny guy carved up and sad.

I am still feeling twinges of it, but I suspect the surgery schedule will be smoother than Primary's so he won't starve endlessly this time. And I'm feeling the happy adrenaline of having hurdled the other obstacles in our way, so I'm feeling a little more sane. And I will be very happy to have this surgery over and done with. If all goes well, we should be home tomorrow afternoon sometime.

I've found myself wanting to eat my entire refrigerator, but that's a post for another day. Man, I'm a stress eater.

So, please keep our little guy in your thoughts and prayers tomorrow. We'll be so glad to have this over and done!

Thursday Morning
Crew has just headed into surgery. We got up at 1 this morning for a bath and a final feeding. He thought it was really funny to have a bath in the middle of the night. After that, he woke up on his own just before 7 and we headed out right away to the hospital.

He was hungry when we arrived, but not overly so. He was a little fussy, looking for his breakfast while they were trying to get his vitals, but once he was reswaddled, he settled down again. When Daddy arrived after dropping Kinley and Tanner off at various destinations, he bounced him into a little morning nap.

At 9, the surgical team came in to answer questions and take him away. He woke up just as they were coming in, so he flirted with them briefly. The nurse walked him down the hall to surgery and he threw us some radiant smiles as he left us. He is oh, so cute, and oh, so sweet.

We expect the surgery to take a few hours. It's a little more complicated than the previous hernia surgery because we are now dealing with scar tissue and muscles that have already been weakened by the previous surgery. Plus, this is Dr. D.'s first time correcting a hypospadia (no, we aren't that concerned; it's a pretty simple procedure). However, with all of these factors, we've been asked to "be patient".

They won't bring him to his room until he wakes up. I'll be interested in seeing how long that takes. They say 15-20 minutes, but the last time he was on general anesthesia, he didn't come out for many many hours. I warned them that he is a light-weight, so we'll see. I wish we could be with him while we wait for him to wake up. That was how it was in the NICU, but it's a different set up this time, with a bunch of patients all waking up in the same room. Confidentiality, yaddah, yaddah.

Love this kid!

Thursday Late Afternoon
Crew is resting comfortably in his swing, settling in for what I expect to be a very long nap.

His surgeries are considered a success in that his hypospadia has been corrected and his hydrocele has been removed.

Now, do you remember when I said that it is really hard to read ultrasounds and get a definitive answer? Well, we had the ultrasound and received from the head radiologist firm and seemingly irrefutable confirmation that the pathway was wide open, but it turns out that Crew's hydrocele was not, in fact, of the communicating variety. The surgeon inspected it thoroughly, even found his old sutures, and the pathway is sealed shut, tight as a drum. And before you ask, yes, I believe him.

Might the hydrocele have eventually resolved and resorbed on its own? Maybe, maybe not. I'm inclined to think maybe it would have. I even started to strongly suspect recently that it wasn't a communicating hydrocele after all, but changed my mind after the ultrasound, of course. Regardless, it is taken care of and we don't have to worry about it one way or the other. It's been removed, complete with the lining, never to return again. And we had the other problem taken care of, though it was such a minor deformity/concern that we even briefly toyed with the idea of leaving it, with the possibility of needing to address it further down the road. Again, maybe, maybe not.

On the one hand, I'm glad that the issues are 100% resolved, and Justin frames his silver lining around the fact that it wasn't as bad as we all thought. He thinks it's a little weird that I'm disgruntled over things not being as bad as we expected. But I find myself being torn between being grateful that things weren't worse and feeling like a schmuck of a mom, carving up my child, putting him in pain, and throwing him to the wolves with all the inherent risks of surgery for two procedures that may or may not have even been necessary.

Blech. We did everything we possibly could to make the right decision. Everyone thought he had a communicating hydrocele, including me. We used extra diagnostic tools just to make sure and had all the best doctors involved in the process. We even had the director of radiology do the ultrasound himself (to the annoyance of the tech). And we still got it wrong.

Don't worry about me. I'll feel better about all of this in a few days when he's back to his old, spry self. I'll be happy that the hydrocele is gone, communicating or non-communicating. And I'll be glad we don't ever have to worry about the other problem.

I'm hungry. Suuuuuper hungry. And really tired. I'm going to rummage now.

Friday Morning
Oh, my land. I was up all night long with a sad, fevered, post-op baby that couldn't get comfortable. He's so pathetic. So am I, for that matter... Sure wish I had gotten some sleep the night before last...

Friday Afternoon

Crew is doing a teeny bit better. He has had a fever since last night that is finally under control by piggy-backing ibuprofen with the Tylenol. I haven't been able to do that in the past, but I got clearance this time from the team at Primary's as well as my pediatrician (instead of the after-hours on-call dial-a-nurse-at-midnight who told me that I couldn't do it before--under weight or something) and it seems to be helping a lot. He has a bunch of swelling that looks very painful, but they tell me it's "normal". Eesh. He is still not very happy, but he is no longer utterly miserable.

Tuesday, May 26, 2009

Too Sweet, WAY Too Sweet

Not only has Crew slept 10 hours straight for the last two nights (yeah, I don't expect it to continue long-term either), but he hasn't even cried in the morning. I go in there to check on him when everyone else wakes up and he's just laying in his bed, slurping his hands if he managed to get them free, or just looking around quietly. He's so sweet!! I've never had a baby that didn't wail the moment their eyes opened!  He's too sweet!

Sunday, May 24, 2009

Letter To My Son

Dear Dex,

We came to visit you and Mercy today. Did you see the garden we planted? We were so happy to find the lithodora flowers. They seemed so perfect for you. We haven’t been very good gardeners in the past, but these are very special flowers to honor your role in our family, so we’ll take extra special care of them.

It’s been more than 6 months now and so much has happened. Some days I still just can’t believe that you are really gone. It’s not at all how we planned things, but we know that Heavenly Father loves us and that this is part of His plan.

I am so proud of you. I remember the power of your spirit on the day we said goodbye, and I am so thankful for the times that you have come to visit since then. I look forward to the day when I can hold you in my arms again and never have to let you go. You are a brave and noble son and I am humbled to be your mother.

Please keep pulling for us. Your efforts really do make a difference. Thank you for coming to Crew’s NICU blessing. Thank you for being with Crew so often and for lending him your strength. You two are so different in spirit and personality, but I see so much of you in his beautiful face.

We are trying to make the right choices so that we can be with you again. Your life and your death has been a unifying force for the entire extended family. You have strengthened my testimony of the plan of salvation and you have been an inspiration to anyone who hears about you.

I love you and miss you all the time but we are ok and we are finding joy in the journey.

Love,
Mommy


After spending time writing letters and making cards for Dex and Mercy, we spent some time at the cemetery as a family this afternoon. Boy, there were a lot of people and flowers there! The cemetery is a hoppin' place on Memorial Day weekend!

We knew that we couldn't place a stone until spring, but we didn't realize how long it would take to finish once we ordered it, so we are still waiting. We definitely should have put things in motion during the winter. Live and learn. We were disappointed to not have it ready for today. It seemed lacking.

Tanner suggested we requisition a rocket ship to take us to heaven for a visit. Do you think we can find a good deal on Orbitz? I just love my kids.

Saturday, May 23, 2009

Memory Garden

Through one of my online twin-loss support groups, I got the idea to plant a garden in memory of Dex, so that's what we did this weekend. Kinley and I found some beautiful blue and white star flowers that were absolutely perfect for the occasion. Blue for our little boy, white for the pure angel that he is. The other tiny white flowers are in honor of all the angel babies who are with Dex and those who are still fighting for their lives in the NICU's around the world.

Now, before we began, Kinley reminded me that last year, she wore a "head thing" to plant the flowers.
Well, once Tanner saw Kinley decked out in her "pirate hat", I was obligated to find him his own do-rag.
They sang made-up pirate songs and yelled "arrrrrrrr!!!" while shoveling.


The kids designed their own arrangements (and painted their pots) and I'm very pleased with how everything turned out. I can't wait to see them in full bloom.

Crew Update

Guess who actually chuckled at me this week? He did it during our therapy stretches, when I tickled his nose with his big toe :)

Crew has had a busy week. He has been to the pediatrician, had an ultrasound, and worked out with his OT. Phew!

Mighty Crew is Mighty Big now! He is a whopping 10 pounds, 2 ounces! He is rolling from front to back and almost rolling from back to front, but gets hung up on his elbow. He mostly just gets onto his side, runs into his fingers and slurps on them instead. He is 22 and 1/2 inches, growing 1.5 inches in one month! We remeasured just to be sure. He's growing so fast! He's gaining about 2/3 ounce per day, which is more than any of us expected.

We are really hoping that Dr. D. will be willing to do the second surgical procedure himself because if not, we won't be able to have the surgery next week, even if we are willing to go to Primary's. And with our stupid insurance situation (starting over from scratch June 1 with a brand new deductible), it would be really nice if we could get everything taken care of before the end of May. Since (I think) it would be better for Crew to have them both done at once (I don't think he has to be out for the 2nd one, but I'm not sure yet), it will probably mean that we won't have either procedure done until we can have them both done together. So... keeping fingers crossed that Dr. D. will feel comfortable taking care of the other problem, but we won't find out until next week, probably Tuesday or Wednesday.

He is eating 3-4 ounces at a time now. He gets up once a night to eat and calls for me. He whines loudly and then waits. I keep thinking he'll fall back asleep, but he doesn't. He's ravenous (especially last night when he made it 7 hours). He calls again and waits. We do this 3 or 4 times until I finally drag myself down the hall where he is watching the side of the crib expectantly, waiting to give me a big dimply grin as soon as I appear. I love this hunka-hunka.

Oh, and except for a few two-piece newborn-size outfits, the big man is now wearing 0-3 month clothes!!!

Yeah, so he's 6 and a half months... but still, yay!

Angel Friends

Crew and I had a few minutes to ourselves on Wednesday on our way home from the hospital, so we stopped by the cemetery. Dex's gravestone still hasn't been placed, but the wee tiny little patch of grass right where he is buried is greener, fuller, and more vibrant than the surrounding grasses. It's like his own little natural gravestone, a vibrant little tribute to his short life.

We took a walk and stumbled unexpectedly upon the gravestone of one of Dex's little angel friends, Mercy, who recently joined him. She too has received the "crown without the conflict", though her short life was anything but easy. I know it's not where they really are, not where their spirits are, anyway, but for some reason it makes me feel better to know that they are buried close together, that Dex has a friend in the Angel Garden.

Surgery #4

Monday the 18th:
Crew will be having an ultrasound this week to try to confirm what is a virtual certainty -- that his hernia repair site on the left side has reopened. We visited with the surgeon and he said that he has never had a hydrocele appear after a hernia repair that is not a communicating hydrocele, a.k.a. another hernia waiting to happen. The ultrasound may or may not be able to adequately see what is going on, but it's worth the attempt, on the infinitesimal chance that 1) it's not communicating and 2) it can be read with definitive precision.

Crew is scheduled for surgery on May 28th here at our local hospital.

Wednesday the 20th Update:
Crew had his ultrasound yesterday and it confirmed what we suspected. One of his hernia sites has reopened and needs to be corrected. He also has a fun new problem, some scar tissue growing over... well, let's just say that some damage was done back in his catheter-wearing days. We should be able to have both problems corrected at the same time, but if Dr. D. isn't comfortable doing the second procedure, we'll have to move our plans to Primary's to have a urologist join in the fun. There is no end to drama with this kid and his nether regions. Ugh!

Brimming With Cuteness

video

My Beautiful Babe

I've never had a baby wake up so happy from every nap before.




Tuesday, May 19, 2009

Is He Cute Or WHAT???

How did I get so lucky? How do I have a baby that is so ridiculously cute and so happy and sweet-natured? I never tire of gazing at the beautiful little face on this shameless little flirt.



Monday, May 11, 2009

6 Months

Yesterday was Mother's Day. It was also the 6 month anniversary of the birth of Dex and Crew. I'm not sure what I can say beyond what I have said in the past. I still feel the same and (despite what my previous post may have implied) I'm in a happy, well-balanced, content place at the moment.

I guess I can add a quote or two that I used in the talk I gave yesterday in sacrament meeting. This one is from Elder Wirthlin's final address, "Come What May and Love It".

"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude.

One of the blessings of the gospel is the knowledge that when the curtain of death signals the end of our mortal lives, life will continue on the other side of the veil. There we will be given new opportunities.
Not even death can take from us the eternal blessings promised by a loving Heavenly Father.”

And a quote from Elder Gary Stevenson's recent conference address:

"There is a righteous unity between the temple and the home. Understanding the eternal nature of the temple will draw you to your family. Understanding the eternal nature of the family will draw you to the temple."

How Do I Respond?

There is a comment that continues to be made that I don't know how to address. I know people aren't intending to be hurtful and that their hearts are in the right places. And so many people actually say it to my face that I think more people must think it and just not say it. Every time it's said, it's so stunning and it takes me so completely off guard that I just stare blankly and don't know how to respond.

The comment is this: "Well, didn't Justin only want one more baby? So, if you wanted two more babies and he wanted only one, you both kind of got what you wanted, huh?"

The thought must not be that unique because I've heard it more times than you might think. It makes me want to never tell anyone the beginning of our miracle story (where Justin declared we could only do pregnancy one more time and I couldn't wrap my head around that because I felt there were two more little ones waiting for us) because some people walk away with the bizarre, unfathomable idea that my husband is somehow relieved that my son has died to spare us a few sleepless nights and diaper expense. I just don't know what to say when people say that and it makes me feel sad. Because I'm so stunned that I just change the subject, I feel unfair and disloyal to Dex and to Justin because it's soooo far from the truth. Justin was so scared of the dangers of a twin pregnancy (hello, wonder why) but once he got used to the idea and over the total shock of the situation, he was so excited to have his babies to snuggle and to raise, and he was completely devastated when it all fell apart.

How can I respond kindly and effectively to this sentiment?

Saturday, May 9, 2009

Neonatal Follow-Up Clinic

Yesterday Crew had his big neonatal follow-up clinic appointment. It only took 2 hours, which was less than we planned on. After he was weighed and measured by the nurse (9 pounds, 10 ounces) he saw a pediatrician, a nutritionist, and a physical therapist. They had some of his medical records and I filled them in on the particulars and details.

He missed out on his morning nap but managed to stay very happy for the duration (to my relief). He was flirty and smiley and peed all over the pediatrician when she grabbed his junk. Everyone was very pleased with his progress and each one of them appeared quite shocked with how well he is doing, considering the life he led for his first three months. They all seemed to concur that he's doing miraculously well, considering all that he has been through. But hey, I happen to believe in miracles, so there you go.

We may go back in a month or two to see a neurologist; otherwise we'll see them again when Crew is about 9 months adjusted (November). I really liked the staff. It reminded me of the NICU team at UVRMC... only warmer and fuzzier, if you can even imagine. I almost expected a round of warm embraces before I came home.

So, little Crew continues to make progress. He's still very tiny and may never catch up (though I think he may be bigger than Kinley was at 3 months old). He is growing very very extremely well now that he is growing at all, so we'll just have to see what happens down the line. For now, he remains very firmly and consistently in the 3% range for height and weight of normal 3-monthers.

Catching Karlee

Crew is starting to catch up in size to his cousin Karlee! Pretty soon he just might pass her!Ooooooh, soft.


Conversations Overheard

Kinley to Crew: Hey! Where's your stem, pumpkin head?

Thursday, May 7, 2009

Fatty McFat-Pants

Today was (obviously) photo shoot time. I think he is so cute. But every time we do this I am reminded of how much I hate my camera, how much I hate living in a dungeon with crappy lighting, and how unskilled I am as a photographer. Sigh... at least my model is beyond adorable.





Wednesday, May 6, 2009

Making Progress

Our early intervention OT, Carlon, came to visit this morning. Crew weighs 9 pounds, 9 ounces! It's so hard for me to believe that he was ever 1 and a half pounds. He is more than 6 times the size that he was when he was born and more than twice the size that he was when I brought him home in February! That's crazy!

He is a shameless flirt, which is really amusing. He is extremely sociable, which has always been one of his defining characteristics. He likes tummy time a (very little) bit more, now that he has figured out that he can slurp on his hands to pass the time. He is bringing his hands to his mouth very frequently and has started "talking" to us in the last few weeks. He is making some pseudo-laugh sounds that one day are going to turn into a full belly laugh, I just know it! He still doesn't like to hold objects in his hands for very long. He drops them after holding them for a few seconds, but that's still an improvement from what he was doing before.

He has a 3-4 hour appointment this Friday at the neonatal follow-up clinic. Doctors, doctors, everywhere. Appointments, appointments, all the time.

Tuesday, May 5, 2009

My, How We Have Grown

Do you remember this?It was the first item of clothing that I was able to dress Crew in. His micro-preemie duds. This picture was taken on December 19th, when Crew was about 6 weeks old, at 2 pounds.This is the size "1" diaper that Crew wears now.
See how cute he is in that diaper? I call him Fatty McFat-Pants.
Now...how's that for some perspective?

Monday, May 4, 2009

Welcome Home, Darbi!

Born New Years Day (124 days ago) at 23 weeks, weighing in at a whopping one pound...
(See Daddy's wedding ring on her leg?)Crew's tiny girlfriend has come home at last. Congratulations, little princess! You adorable little miracle!

Tuesday, April 28, 2009

ROP-Free!

Crew had his final ROP exam this morning and he is officially ROP-FREE!! Woo hoo!!

Monday, April 27, 2009

Too Much Cuteness

Smoooooooooooooch!

My Little Ham

Crew never runs out of smiles these days. He is a really happy little guy and I just love him.




What a Strange Thought

Why We Hate Immunizations

I normally don't video tape Crew's crying because I can't stand to let it go on long enough to record it. Nevertheless, I grit my teeth to capture this sad little face because he is changing so much. His voice is changing, his cry is changing, etc. I wish I had recorded more of his newborn cry, but this isn't a dramatic deviation from what he used to sound like. That will come soon enough.

I warn you. The pout is pretty cute, if heartrending.
video
This was taken last Monday afternoon at home when he was grumpy after immunizations. This was just the beginning. By evening he was in really bad shape, unmanageable fever, vomiting, uncontrollable crying. We were all relieved and thankful for the intervention of a merciful Heavenly Father when his fever finally broke and he slept for 12 hours straight (with a dreamfeed snuck in there).

The Week

On Friday, we took Crew to Beesley Monuments to pick out a headstone for Dex's grave. I'm pleased with what we have chosen and it should be ready in 6-8 weeks. The couple that was in right before us was there with their infant daughter, also picking out a headstone for her twin sister that died. You wouldn't believe how common I've discovered it to be. Relatively, anyway. Sigh... I can think of about 4 million things I'd rather buy for Dex, none of which he needs. We talked this week about Tanner and Crew possibly sharing a room sometime in the future and it made me very unexpectedly sad. I suspect that I'm in for a lifetime of moments where I have to stop and think "hmmmm..." Would that it wasn't so. But it is.

On a more positive note, Crew is doing really well. I fully rejoice every time he hits a milestone. I don't know why I continue to be amazed and surprised by this little miracle of mine. I just shake my head in wonder at every turn. He has started licking me incessantly and you'll find me with a slobbery shirt more often than not these days. He's not rolling over as much anymore and he's mostly just super annoyed when I put him flat on his tummy. He slurps on his hands all. the. time. It's really cute. Carlon wants me to start weaning him from his need/desire to be swaddled. Nah... not interested. I swaddled Tanner until he was 7-9 months old. I'm in no rush to unswaddle this little prince. He's growing really well and maybe sometime in the next week or so he'll be in 0-3 month clothes! Woo hoo! What a tank, eh?!!

Wednesday, April 22, 2009

Crew's Well Check

Crew had his well check Monday morning. With a clean diaper on, he is 8 pounds 12.5 ounces and 21 inches long! We are very happy that Crew has put on a whole two pounds in the last month! His hydrocele is really behaving very much like a little communicator, which is discouraging to accept. If it really is a communicating hydrocele, it won't resolve on its own and you can't leave it unresolved, which of course means surgery.

Developmentally, he has finally started to activate his little arms when I show him a toy. He doesn't reach yet, but he is making progress in that area. He follows toys and faces with his eyes and his head and he has astonishing neck strength. He rolls from his back to his side all the time and demands to be played with. He smiles all the time now and has started to use his little voice more and more frequently. Yesterday while taking pictures of him (to be posted later), I could swear he made a few sounds that were the very teeny beginnings of a laugh.

I'm so happy with his progress!

Testicles are not my Forte

I took Crew in to see the pediatrician this last week because, once again, he wasn't looking "quite right" down south. Did you know that you can do a partial diagnosis for a hernia by shining a flashlight through the scrotum? I'm glad my sister gave me a heads up on that or I may have questioned my pediatrician's sanity.

At least I was vindicated in "being right", for whatever that's worth. There is definitely something amiss and the tentative verdict is that it's a hydrocele, or a potentially benign (innocent) collection of fluid. If it's closed off, the fluid should eventually resorb over time without complication. Unfortunately, he appears to be exhibiting symptoms of a "communicating hydrocele", meaning the fluid is able to go both ways through an opening, further meaning that the risk for a third hernia is alive and well. It is even possible that he has a hernia right now, but it's hard to tell for sure with all the extra fluid.

So, we've been referred to our surgeon (that sounds weird to say our surgeon) for evaluation. Blech.

Wednesday, April 15, 2009

Burrito Baby

Super tight swaddles make my babies very mellow. I love to snuggle this little sweetie!

He is getting so big and responsive. If I walk by him, he follows me with his eyes and his head. He smiles a lot now, though I rarely get the pictures because I'm too caught up in the playful moment myself. This last week he has been trying out his voice, making some cute little vocal sounds, and this morning he brought his hands to his mouth all by himself and licked them. Yay for progress!


Sisters Are So Great



He'll Carry You

This is for anyone who ever has those kind of days. Listen to it 400 times and you can't help but feel better! :)

Sunday, April 12, 2009

Easter Healing

This week hasn't been the pre-Easter celebration of my dreams. I've been rather grouchy and blue. There have been a thousand catalysts, but suffice it to say that against my better judgment and despite long effort to resist the temptation, I have gone there. I have been wallowing in the "what ifs", being angry at the world, including myself, my doctor, and stupid people at large, and have generally felt very sorry for myself.

It was probably naive of me to think that I'd never have an emotional setback like this, but I can admit that I suffer from a naive streak.

It was really important to me that we attend church together as a family this morning. So, contrary to medical advice and Justin's wishes, we packed up Crew and took him for his sacrament meeting debut. I knew that for this special Easter morning, I needed to be able to clutch the most obvious evidence of the Lord's mercy and love for me, who also happens to be the most tangible connection to Dex.

The Lord has given me Crew. His birth, his survival, his progress, his development, and everything else surrounding this amazing little boy just screams "miracle"! I am so thankful for how far we have come and I feel so humbled to have been given the privilege to keep him here on earth.

As if that wasn't mercy enough, I still have my angel Dex waiting patiently for me in heaven. Everything surrounding this amazing son of mine also screams "miracle"! He has been spared the difficulties and challenges of this mortal life. He, truly, has been given the "crown without the conflict." I am still able to feel his presence on occasion, when I really need to. He is my son; he will always be my son.

All in all, things could be a lot worse.

And yet, this last week I have found myself feeling deep gratitude, love, faith, and hope mixed with a confusing dose of sad and frustrated and a splash of numbness. I have been focusing on the mortal details of all that has happened, and not the peace that I have felt or the knowledge and testimony that I have been given. I have allowed the burdens of the natural man to creep in, clouding my acceptance.

Easter is about the Savior's atonement. The miracle of the resurrection that we celebrate is what makes it possible for me to keep smiling and still feel real, pure joy in my life. Through Him, my Dex will be resurrected one day and placed in my very willing arms.

But it's not just about the resurrection. It's about all kinds of healing. The Savior suffered for my sins, and he also took upon himself the infirmities of the world. He suffered every burden known to man so that He could succor us from a place of perfect understanding. Even if I don't understand the emotional cocktail that I'm experiencing, He does, and He'll help me get through it this time, as He has in the past.

Easter is a joyful and hopeful time for renewal. I feel my Savior's love and I'm on the path toward healing. Again. One thing is for sure: when I do find that perfect peace again, I won't feel guilty about it anymore. I'll just embrace it and be thankful for it because I know that's what my Dex would really prefer.

Friday, April 10, 2009

Crew and Mac

Crew had a special visit from someone that we suspect is a "dear old friend" of his: Mac. "Mac Truck", to those who best love to squeeze and nuzzle his squashy deliciousness. Once upon a time these little guys were due two weeks apart and we expected them both to arrive sometime in early January. Life threw a few curve balls and now the very much older Crew is dwarfed by his 19-pound gentle neighbor. We laughed and laughed!! I've gotta get Crew some of that breastmilk!!

Thursday, April 9, 2009

Carlon and the Wee Beastie

Carlon is Crew's Early Intervention Occupational Therapist, forevermore to be blogged as "Carlon" or our "OT." She comes to our home twice a month to work with Crew, check his weight, and evaluate his development.

Crew really likes Carlon, which means that I do too. He flirts with her shamelessly, endlessly flashing his gums at her. He doesn't always perform for her on demand, but he did roll for her today, from his stomach onto his back. Little show-off. She gives us suggestions of things to work on between visits and we seem to be on the same page. It's so refreshing after my experience with the OT from hell at Primary's. I was extremely reluctant to become involved in the early intervention program because of it, but so far it's been nothing but a positive experience.

In other development, he now rolls from his back to his side, he has great control of his tough little neck, he is extraordinarily (rather surprisingly, from what I could gather) sociable, and he is gaining weight at "the perfect" rate. He continues to gain at a rate of exactly 1 ounce per day. That means that today he weighed in at... are you ready? 8 pounds, 4.6 ounces! She says she's seen some really good improvements in his coordination and movements since even our last visit 3 weeks ago.

He has no interest in grabbing anything other than my finger, but I'm going to go shopping for some toys that he might be able to hold onto better. He's still a sloppy eater, but getting better. He doesn't like to put his hands on his bottle to eat; he prefers to rub them together on his chest while he's slurping away. She suggested that I put a sock on the bottle to see if he's interested in the different texture. Never would have thought of that!

Sleeping. After eating a record 5 ounces in 1 hour last night, he slept for almost 9 hours straight. No, I didn't benefit from it. I kept hovering by his bed, checking to make sure he was still breathing. It doesn't help that he's the world's quietest sleeper/breather. He finally squeaked at 5:15 and I raced down to get him before he was fully awake. I was up most of the night. Fretting. He usually sleeps in two 5-hour blocks at night, which is still really good, considering his size and adjusted age. That means that if we time it just right, he's only getting up once in the middle of the night.

He's my precious little prince. He always smells vaguely of spit because I slobber all over him constantly. Only Daddy can console him during the fussy evening winding-down hours. I like that because they have a special nighttime bond. I hate the nights when Justin works really late because he cries until he comes home. Other than that, he's a pretty mellow and lovable little kid. He is very particular in his demands, but they are not unreasonable. He'll fuss until he gets what he wants, but he's pretty easy to figure out.

Tuesday, April 7, 2009

My Spring Chicken


Monday, April 6, 2009

Family Walk

We capped off our weekend by taking a family walk in the cemetery. I'm surprised and relieved with how much easier it is every time I go. It's finally a place that I look forward to going and don't have to steel myself for. It's so peaceful and it is one of those special places where I can shut the world out and readjust my perspective in the blink of an eye. We all totally lose track of time when we're there.

The kids think the cemetery is the most wonderful place ever. Here is Kinley by Dex's grave. As you may remember, we've had to wait to lay a stone until the spring ground conditions were ideal. When tax season is over and Justin has time to breathe and focus, our first item of business is to choose and lay Dex's gravestone. I'll be happy to have that little tribute taken care of at last.
Crew took the first ride of his life in a stroller!! It was momentous for me, but he didn't really seem to care one way or another.

Sunday, April 5, 2009

By Grandma's Request


You guessed it. Swappin' jokes with Dex in this picture.

Wednesday, April 1, 2009

Crew's Big Day

Saturday was a big day for Crew. In the morning, Mandee came to visit from Idaho. She hadn't seen him since he was 1 and 1/2 pounds, so he looked like a big, hefty chunka chunka this time!Later in the day, his Grover relatives also visited from Idaho. Say cheese!
Snuggling Auntie Kayla. Kayla, in just a few weeks, you'll have your very own Crew-sized little person in your house :)
In the evening, Crew had a really grand, new adventure. Justin and I went on an actual date. That's right, baby. We went out to dinner with Adam, Kayla, Matt, and Kim. It felt so weird, and yet so nice. We laughed and laughed and laughed! We left the Pampered Prince with our gracious neighbors, Karson and Betsy, who took great care of him! He was happy and well cared for and I had a GREAT night out! Crew's unpredictable time is late afternoon and evening, but it seems he was on his best, most charming behavior. Good boy, Crew! Also on Saturday, he was able to sport his brand new... BOOTS!

Watchful

It makes me so happy that Kinley and Tanner love their little Crew so much. The newness and miracle of his presence still hasn't worn off. Every few days when Tanner is gazing fondly at Crew, he sighs and whispers "I miss Dex." So do I, my love. So do I.

Little Mama

Little Mama, show me how it's done.
videoKinley gave me a little lesson on Crew Care and it was so cute that I had to record it. Of course, by the second run-through Crew wasn't so thrilled with all the jostling. And yes, we did have a talk about her using slower, steadier movements and not planting her brother's face in the dirty carpets...

Conversations I Thought We Were Beyond

I still find myself taken off guard by the lingering perspective of my bigger kids.

Tanner: When you take Crew to the doctor today, will you bring him home?

They too still just can't believe that he is home to stay at last.

Friday, March 27, 2009

Things I Never Thought To Be Grateful For

I was thinking this week that there are a number of things that I find myself being very unexpectedly grateful for:

#1. Poopy diapers. Because his bowels are working. They aren't diseased, they don't have perforations, and he no longer has an ostomy bag. His poop goes in a diaper like normal babies.

#2. Being up at night with a baby. Because I have a baby to be with. It's a privilege and a blessing that I'll never take for granted. Ever.

#3. Being "housebound" with my preemie. Because I don't have to leave my house to visit my baby and I won't be separated from him by the anticipated storms this coming week. I have more time to spend cooking (and eating), and I don't even have to shower every day.

#4. Having a preemie. Because I've been able to love him "in person" much longer than most people. It's been almost 5 months and I still have a newborn. I've gained an appreciation for the fragility and the miracle of life.

#6. A baby crying. Because he isn't on a ventilator that doesn't allow him to cry. He can breathe on his own. He's still so small at 7 pounds that he has retained his "newborn cry" and I know it will be gone all too soon.

#7. Three big, unsightly scars. Because his problems were fixable.

Our thoughts are so often with friends and acquaintances whose babies continue to fight their battles. We pray for the babies we met in the two hospitals as well as a few we have met through our journey online. We pray for those miracle babies every day, that they will be strong and be able to fulfill their individual missions, whatever they may be. We pray for their families, that they will be strengthened and comforted through their successes and disappointments, joys and fears. We pray that they will experience miracles and healing.

We continue to pray for those families whose babies have since returned to our Heavenly Father. We know too many of those. For them, we pray that they be able to find peace in their hearts as they go on. I love a quote that I found on a blog a few months ago, from a mommy who lost her angel too soon. It says "When you have someone you love in Heaven, You have a little bit of Heaven in your home."

There have been a lot of big events this month in our little circle of .... I don't even know what to call us. Some very happy and some very upsetting. I've been eating a lot of chocolate lately, both of the celebratory and comfort varieties. We love these little babies so much, even the ones we've not been able to love in person.

Wednesday, March 25, 2009

He's Mine, All Mine

Sorry, the bidding for this little item has closed.

My, How We Have Grown

It's hard to believe that a credit-card-sized diaper was once really big on this tank. When we brought him home from the hospital at 4 and a half pounds, he was in regular preemie diapers (not any of the micropreemie varieties). We moved quickly up to newborn diapers and this week... we're in size 1!

In other Crew News, we saw the eye doctor this Tuesday and his ROP is lingering. Another check in a month and hopefully it will be completely gone.

In good news, he finally pooped yesterday. He has been super constipated for a week and hasn't pooped since Saturday (and not much then). I took him off his supplemental iron drops over the weekend since I can't think of anything else that I'm able to change. I know it can be normal for some babies to go several days between dirty diapers, but it's not normal for Crew. I was starting to get really concerned, wondering if we were going to end up in the ER with backed up bowels. Fortunately, he came through for me (and himself) yesterday. What a relief.

Boppy Love

MMmmm, yummy.... Boppys are my faaaaaavorite. Our visitng OT/nurse Carlon showed me how to put him like this (below) in the Boppy after he does tummy time the other way, to stretch and round out his exercised back muscles . He really likes it and seems to find it very comfortable.

Say Hello To The Grandfolks!

Here is our precious little imp posing in an outfit from Grandma and Grandpa B. He is relaxing on a blanket made by his Great Grandma Hunsaker, a blanket that was made for Crew's daddy many many many moons ago. It's now blessing another generation.

So many times when I bust out the camera, someone special (and I have my prime suspects narrowed down) shows up just off to the side and makes this little guy smile mercilessly until I have the perfect shot. Today's a "missing Dex" kind of day.
This is Crew pouting. Does it make me a mean mommy that I laugh every time he does it? He's just soooooo edible!

Friday, March 20, 2009

Cousin Couch Cuddles

Crew got some wee little snuggles over the weekend with his sweet and adorable cousin Karlee, who is 5 months old.

Converted

I've never ever used a sling with any of my children before. I always felt they were a little granola for my taste. Plus, the ill-fitting sling and the ill-fitting, back-breaking carrier that I borrowed from a friend when Kinley was a baby only frustrated me and made me certain that I didn't have the right body shape or size for anything other than my numb, aching arms to be a practical solution.

My sister Courtney made me a sling and I am so converted! It's so practical, so comfortable, and I love having my arms free to carry library baskets, hold the hands of bigger kids, even read books or get dinner ready while "snuggling" my sweet Crew! So, to all of you in the past who felt dissed by the plaster smile when trying to convince me that slings were "way cool", I apologize, and you can consider me totally converted! (You'll have to ask me again when he's more than 7 pounds though...)

Friday, March 13, 2009

Dr. Johnson

First things first: my fat fat baby is almost 7 pounds! He is now 6 pounds, 12 ounces and 18.25 inches long! That puts him in the 20th percentile for his adjusted age. At last, he is officially bigger than both Kinley and Tanner were at birth :)

Crew rolled over repeatedly at the doctor's office this morning, flinging himself (and his noggin) purposefully to the left as soon as he was put on his tummy by the doctor or the nurse; I was so proud. My little overachiever thinks he really is almost 5 months old! None of this "adjusted age" stuff for him!

Here is Crew posing with Dr. Johnson, World's Best Pediatrician. We've had the marvelous Dr. Johnson for several years and he has been with us for the long haul with Crew, keeping close tabs on him throughout our entire adventure. If you're looking for a pediatrician, I couldn't recommend him more highly! And I think we all know by now that I'm pretty picky...

Faces

Ah-ah-ah-CHOO!! Big yawns!
Ah.... the money shot.

Buddha Bath

My little buddha thinks baths are kinda relaxin' these days.

Mover and Shaker

Let's be honest, only grandparents are obligated to watch these. We have a roller! He goes left and right and some days just won't stay on that belly! He has twice rolled from his back to his belly, which really shocked me. I think it shocked him too :) He's just doing so great, even if it's by accident!

He's also big enough that I can kiss his cheek without having to aim so carefully. When I brought him home, his cheek was so tiny that if I wasn't very skilled in my kiss planting, I'd get an eyeball.
video

video

video

Wednesday, March 11, 2009

Oink Oink

Crew has officially grown out of all of his "preemie" outfits. I stuffed my little fatty one more time into this outfit for a graduation photoshoot. "Newborn" clothes still look a little silly and large on him, but he's getting there. I can't wait to find out how much he weighs on Friday! I'll bet he's almost 7 pounds!

This Little Piggy

Tanner really is a wonderful big brother. Here he was playing "this little piggy". I melted.

Grinner

Guess what fun new stage we just entered? Last night Crew flashed a few tentative grimaces at Daddy. Today he only had eyes for the angels, smiling at "no one". He was absolutely hysterical! I love it!!


Monday, March 9, 2009

Remembering Dex

Tomorrow will be exactly four months since Dex and Crew made their dramatic arrival. While we rejoice that Crew has made it safely and miraculously to our home at last, Dex is never far from our thoughts or conversations. We talk about him often and I anticipate that it will always be the case. He's an important member of our family who happens to live somewhere else for now. Our grandparents live in Idaho and Alabama, Dex lives in Heaven. Sometimes Heaven feels closer.

Kinley is starting to ask more detailed questions about his death, questions that are more painful to address with my 6-year old. She wants to know exactly when and how he died, what was all that water that was all over the house when she woke up the morning, etc. It's so much easier to be clinical and open with my adult friends than to try to think about it in age-appropriate terms that I can explain to the innocent princess who has been left without her brother.

Kinley and Tanner seem to understand the concept of death as well as the resurrection. Alas, the timing of the resurrection was something that we had to address. Several months ago while tucking them into bed, Kinley asked with great excitement, "So, Mommy, when is Dex going to be resurrected so that he can come live with our family?" Thus began a very long bedtime discussion.

I sometimes think that Tanner understands all of this better than any of us, regardless of how oblivious he appears. One night a few weeks after Dex died, we were reading from the big family version of the Book of Mormon, the purple book with the paintings. Tanner came over to me, saw a painting of Jesus, stopped in his tracks and said, "Mommy? Where is Baby Crew?" At the hospital. "Where is Baby Dex?" It was the first time he had ever said Dex's name or clearly indicated that he even knew about him. I was floored. The fact that a picture of Jesus triggered the connection was only further testimony to me that Dex is, in fact, with Jesus, and that the veil remains thin for my Tanner. When Justin's family presented us with the beautiful painting of the Savior holding the baby, Tanner saw it and he piped up immediately, "Mommy! Look! It's Jesus and Baby Dex!"

Having Crew come home has filled us all with fresh opportunities to think about what life would have been like if we had been able to save Dex too. Tanner has started saying almost every day that he just wishes that Dex could come home. He really seems to understand all of this, much more than I ever thought possible.

Now that Crew has come home, I now have more time, energy, and peace within myself to devote to working through my feelings about Dex. I'm so proud of him, I love him so much, and I miss him. A lot. When Crew is in an especially peaceful sleep, he looks exactly like Dex and it takes my breath away. I'll always be so glad that I recorded my feelings when they were fresh because they have served to strengthen me when I have had my weak moments. Most of the time, I really and truly am ok with everything and I feel extraordinary peace about it. But, I have definitely had my days where I have thought "I am totally at peace about this. Aren't I?" and "I know that things worked out exactly as they were supposed to. Don't I?" and my personal favorite: "I'm totally ok. Wasn't I? WASN'T I?" When the "what ifs" creep in, all I can do sometimes is just rely on the feelings I had in November and put my trust in what I knew then.

When I was in the hospital, I spent a lot of time talking to one of my night nurses, Jean. I pretty much refused to sleep while I was in the hospital and I didn't like to be alone (because I might accidentally fall asleep). I remember thinking "I can't fall asleep because right now I'm ok and I don't have any guarantees how I will be if I fall asleep and wake up later." I summoned Jean in the dead of night a few times and we had some good talks; She lost her husband in a motorcycle accident when she was 21, pregnant with their first child. I will always remember what she said about it. She said, "Ever since my first husband died, I have never felt quite the same attachment to this world." I so totally get that. I get it.

One ironic thing that we have is our ultrasound photos. The interesting thing is that we could only ever get one baby to cooperate for ultrasound shots and that baby was always Dex, never Crew. Also, Dex was the more active baby; Crew was more mellow and he was buffered by my gigantic placenta. I was able to spend more time bonding during the pregnancy with Dex, which turned out to be an unexpected blessing, treasured memories.

There is some school of thought that Dex gave his life to save his brother and his mother. I think there might be something to that and knowing him like I do, I think that's just the kind of thing that he would do. Mothers die quite often with placental abruption, undiagnosed as mine was. If my water hadn't broken, I have been told that I would likely have died by morning , and we already know that Crew wouldn't be here, since his heart had already stopped by the time we were able to get him out. We were just a few minutes away from losing both sons, and a few hours away from losing all three of us. I continue to be overwhelmed by the benevolent, merciful miracle of it all, even though it didn't turn out exactly as I would have chosen.

We're all healing in our different ways. I feel that Justin had the worst end of things that first week. I was dealing in my own way in the hospital, but he had to actually function with the outside world. He had to work with family and neighbors on child care and funeral arrangements, battle insurance, and still keep food on the table. Who ever thinks you're going to have to pick out a burial plot for your child? We should have been choosing a crib for Dex, not a casket. I don't think anyone is ever prepared for that, but Justin handled it with grace, dignity, and remarkable fortitude.

What I didn't learn until much later is that Justin had to tell me several times about Dex when I came out of the anesthesia. My brain was caught in an anesthetic loop and Justin had to tell me more than 20 times that Dex had died. Each of those times I cried and mourned while he held and comforted me, and then I would repeat the loop, asking anxiously how the babies were. Telling your wife she lost her baby once would be traumatic enough. I can't imagine how he endured it so many times. He's quite a man.

One week after the babies were born, we were in the car on the way to the hospital to visit Crew. Justin was driving and I remember when he pulled out of the garage, he stopped, got out, and took the garbage to the street because the next day was garbage day. I remember thinking "who remembers to take out the garbage at a time like this?!" Justin does. He just keeps putting one foot in front of the other, no matter what. He's no quitter and he doesn't bury his head in the sand. He's my rock and I love him today more than ever.

What is Dex doing these days anyway? We've always been taught that special spirits who are called home too soon have an "important work" on the other side. In my mind it was always some vague, "special purpose", disconnected from our reality. It occured to me that there is no more important work than strengthening and protecting families. I have felt his presence so keenly at times that I can't help but think that one of his "important assignments" is to watch over our family and help us return to our Heavenly Father. Perhaps these special angels can help us more effectively from the other side than they might have been able to do in person. Perhaps their "important work" is actually all about us. We're definitely assisted on our journey by all of our loved ones who have passed on before us: angel babies, parents, grandparents, and everyone else.

I am so glad that we chose to have a funeral service for Dex. It was absolutely perfect, everything we hoped that it would be. It was very healing for us and a beautiful memory that we cherish. We were so touched by those who were with us in person and in thought. Thank you for joining us that day. We chose for speakers Justin's brother Matthew and my good friend Keith Welch. Their messages were very touching to me personally and helped me along my path toward healing. A sweet neighbor so beautifully sang the most touching song called "Homeward Bound" that I had never heard before, and presented me later with my own recording.

One of the most poignant memories I have of Dex's funeral is, surprisingly, sitting in the car just before pulling out of the parking lot on our way to the cemetery. I was overwhelmed with feelings of gratitude to see the men of the neighborhood filing out of the building carrying all of the flowers from the church to the cemetery. I don't know why it hit me so hard, but it did.

Justin's father wrote a poem for Dex that we included on the program:

"Although my time upon this earth
Was cut so very short,
I accomplished all that was needful
In our Heavenly Father's plan.
And though my tiny body
Has been laid to rest today,
My spirit lives on forever
And awaits that blessed day
Provided by our Savior.
Then united once again
I'll grow and run and play,
I'll hold your hand in min
And you can help me on my way."

My sister Heather also wrote him a poem that we included on the program:

Hands
Our Father held you in His hand
then placed your hand in mine.
And then His hand cradled both of us,
as I whispered, “Not my will, but Thine.”
I hold your precious, tiny hands,
so perfect, pure, and clean;
They hold your crown of glory,
with no conflict in between.
The Spirit that you brought with you
gives such peace, and joy, and love.
Priceless gifts from our loving Father’s
perfect hands above.
And now I place your hand once more
in our Father’s, where you’ll be,
until I’ll hold your hand again,
through all eternity.

We chose the quote "the crown without the conflict" for Dex's grave stone, but we won't be able to set it until spring arrives and the ground is in the right condition. When my sister came to help us in December, we took her to the cemetery. I'm so glad we did that because now I think I have the strength to return again. I discovered that it's a happy and a sad place, not just a sad place.

A man in the ward slipped me a quote one Sunday that I really liked. "Our Lord has written the promise of the resurrection not in words alone, but in every leaf of springtime." Martin Luther.

One thing that burns with curiosity inside me is the story of how these two sweet boys came down together. I feel sure there is a story there and I'll have to be patient for a while longer yet to know it.

So, onward we go, finding joy in the journey. I can't wait to wrap my son in my arms one day, and never have to let him go again. I am so blessed to have him. Truly, it is better to have loved and lost than never to have loved at all.

Saying hello.
Saying goodbye. The funeral.






Sweetness

Go ahead, I dare you. I dare you to tell me that you don't want to kiss this.

Thursday, March 5, 2009

A Most Amazing Night Repeated

Stop it, kid. You're spoilin' me. I'm gonna start having eck-spek-tay-shuns.

Wednesday, March 4, 2009

A Most Amazing Night

Crew had a Most Amazing Night last night. I fed him at 10 and had him in bed before 10:30. Then I woke him up at 2:45 to eat. He was back in bed by 3:30 and then woke up to eat again at 6:15. Oh, and by "bed" I mean his own bed (not my bed, my arm on the couch, my chest in the lazy boy, the bouncer, the car seat, or the swing.)

Wow. It almost makes up for the 90 minutes of sleep I got both of the two previous nights. Thanks, Little Critter.

Tuesday, March 3, 2009

Eye Exam

I took Crew to the eye doctor this morning for his ritual torturing. We are finally out to zone 3 with ROP stage 1 still present; the chances of ROP becoming problematic at this point and requiring surgery continue to be almost nonexistent. Hopefully only one more appointment in 3 weeks.

Of course, Crew was up all night in anticipation. I'm off to take a nap. Hopefully I'll wake up before Kinley's bus arrives!

Sunday, March 1, 2009

Lipase Milk

I'm M-A-D. Crew has been fussy with eating the last few days or flat out refusing the milk. I finally tasted it myself today. YUCK!!!! It tastes metallic and soapy!! Internet research reveals that I seem to produce too much lipase enzyme that breaks down the milk right after freezing. The big December batch I just dove into seems to be affected. It's been in a regular freezer, while the November stuff we were using before had been in a deep freeze at the hospital. From what I can gather, it's some funky combination of excess lipase in the milk, time in the freezer, and temperature of the freezer. Who knew?? BLECH!!!!!!

Why did I spend hundreds upon hundreds of hours bonding with that horrible milking machine for three months???!! I have probably 250 more ounces of milk in my freezer and in a neighbor's freezer. I don't want to taste them all to find out which ones are bad! I (mostly) don't want to throw everything out either! This pumping thing has just been one disaster after another! I'm so mad right now!

Update:
I've thawed about 40 ounces since last night. All bad. All very very bad and you can even tell by looking at them when they thaw. They don't even look potable. Thank goodness I can now visually and smell check them, because it tastes so bad it makes me want to throw up. I couldn't face that another 70+ times. I wouldn't feed it to rats. Well... maybe rats. And my mom's chihuahua...

I keep holding out hope that some of this milk will still be good, but it's looking bleak. In a few days, once I've thawed and checked all of the nastiness I have on hand, I'll fetch the newer batch from the neighbors and see if any of that's still good or if it's just as bad. I have a bad feeling about it since I just thawed out one this morning that I've been keeping in my own freezer for less than a month and it was already destroyed.

The good news is that Crew is taking straight formula without any complaints whatsover. Too bad it's "specialty" formula with a "specialty" price tag for a "special" kid for one full "special" year. Blech.

Saturday, February 28, 2009

Rollin' Rollin'

Would you believe that my baby--who is almost 4 weeks old with his adjusted age--rolled over this morning? Twice? He was (not so much) enjoying a little tummy time and ended up flat on his back! I'm sure both times were an accident, but still...

Here he is with just the first hint of a true smile:

Play Time



Snoozing Prince

Doin' what babies do best. He loves a yummy tight swaddle.

Friday, February 27, 2009

Big Boys Make Big Changes!

I misunderstood the normal hemoglobin levels last week; as I said, his level was 7, but normal would be around 10.3, not 23. We must have been talking about something else for a second. Anyway, good news #1 is that his hemoglobin is exactly 10.3 so no more anemia! We will continue with the iron for a few months and reevaluate. He seems to be tolerating it well and in fact, the iron drops and the increased formula mixed in his breastmilk (we're doing half and half now) make him just constipated enough that he's losing less nutrients through stool, in my opinion. He's pooping adequately (2-4 times a day), but not as much as he was before (10-12 times a day). That means he can eat less and gain more weight. Which... brings me to good news #2. He put on 8 ounces in the last 7 days and is now a hefty 5 pounds, 13 ounces!! He's almost up to Kinley's birth weight of 5 pounds, 15 ounces. Now it's ok if he slows down his growth a little bit. We need him to gain at least 10 ounces in the next two weeks combined.

Thursday, February 26, 2009

The Old Haunt

Since we were just downstairs, I couldn't resist taking a quick trip up to the NICU for Crew to say hello to his old friends. The picture above is Crew with Heather, one of his lovely primary nurses. He may look like he's starting to fuss with early afternoon hunger pains, but he's really just overwhelmed with his old girlfriend's hotness. Love you, sweet stuff! Either that, or he recognizes the smell of the NICU and is afraid something has gone terribly awry with his day.

I was reminded how much I wished that I had been discharged from UVRMC and how relatively bummed I was to leave from Primary's without fanfare, confetti, or warm embraces from dear new friends. Then again, all things considered, that's a rather petty complaint. I'm glad we're healthy and we're home.

Speaking of petty complaints...

I ran into Neonatologist #2 this afternoon, and she clearly very firmly believes that Crew is still going to be a vegetable with irreversible cerebral atrophy. It didn't matter what I said about follow-up ultrasounds, clean MRI's, adequate head growth, new official prognoses, etc., she just kept dismissing it all. She even put her arm around my shoulder and forlornly said (a few times) "well, I guess time will tell." The more optimistic I was, the more dismal her facial expressions became, pitying my obvious state of denial. If it wasn't so ridiculous, it would have been very upsetting. Since I know she doesn't read the blog, I'll mention that I was highly amused by the incredulous head shaking and eye rolling done behind her back. It softened my annoyance, so thank you. Said one: "She doesn't believe in miracles." Or anything like unto it apparently.

We'll come back another day to see some that we missed today! We love you guys to death!

Surgery Follow Up

Today I took Crew over to the hospital for a follow-up appointment with his surgeon. This is The Man. If you can get past his gruff exterior, he is a soft and gentle teddy bear with mad surgical skills. If you ever need any kind of pediatric abdominal surgery, Dr. Downey is the guy you want. We count ourselves very blessed to have had him as our surgeon.

The clinic was running really behind this morning, but I had the happy opportunity to catch up for a while in the waiting area with a fellow NICU mom who was also there to see Dr. D. That was a wonderful and unexpected treat.

Now, I'll tell you that I was not prepared at all for the spectacle that Crew creates in public places. To my utter amazement, he was an absolute traffic stopper, even without a twin tag-along. Apparently, if you are ridiculously cute and very tiny, you are still very much a novelty to the world at large. He's almost 6 pounds, for goodness sake! He's not even that small any more!

Seriously, when we were checking in, there was a window to the back where the staff can see the front desk. Five nurses came flooding out the door at once to see this little marvel, inquire about his stats, and (to my horror) paw him. Then when I was visiting with my friend and her family in the hallway waiting area, every time anyone passed by, they would stop, stare, and question. We actually had several people stop and interrupt our conversation and say, "oh my goodness, I hate to interrupt, but I must know how old and how big your sweet baby is!!" I even had a full complement of paramedics stop and quiz me and ask if I had a blog so that they could see what he looked like back when he was 1 and a half pounds!! Well, here ya go, guys. Click here and see him at one month old next to a dollar bill.

Very interesting experience! I truly didn't expect that kind of reaction to my almost normal-sized little critter, but I guess he's only normal-sized to me. And he is dang cute :) But I suppose I'm biased on that one too :)

Tuesday, February 24, 2009

He's a Little Brother

The good news is that the big kids never take their frustration or naughtiness out on Crew. They treat him like a Prince. In fact, their behavior seems to have a direct correlation with how much time they get to spend actually participating in Crew Care. Ah HA! I'm such a dope.

Kinley thinks it's weird that I used to let her help a lot more with baby Tanner when she was two years old than I do now with Crew. Fine, I can kinda see her point. I've been pretty darn selfish, neurotic, and controlling with the little one since he came home (not that I feel guilty about it. I think it's a natural reaction to what we've been through). Plus, when Kinley gets a turn, Tanner clamors for his own and it's a totally chaotic production that leaves them smiling and me in a cold sweat.

This afternoon I put Tanner down for a nap and Kinley is holding Crew, enjoying a little one-on-one time with him, introducing him to Phineas and Ferb. She's a total natural. I should have remembered what a perfect little parrot she was when Tanner was a baby. When he starts to fuss, she stands up (which I found initially unnerving) and mimics my exact soothing wiggles and shushing sounds, calming him right down. She's cool as a cucumber, unruffled by fussiness. I'm remembering now how much I was looking forward to having Miss Kinley around when the babies came home. Bless her.





Posing

I wish you could see him in real life. I still think this cute face is much cuter in person.

Drying Off

Sneezin' Gazin'
Gnawin'
Lickin'

First Tub Bath

The censored version: See his belly scar?

Surprise!! All wet!! All clean!!

Sharing Diapers

So, I think that instead of changing these silly newborn diapers a thousand times a day, I'm going to just put one of Tanner's diapers on him and let him wear it for a week. Thrifty, aren't we?

Midnight Faces of Crew

So what were you doing all night?

Sunday, February 22, 2009

Acting Out

As previously reported, Kinley and Tanner have been amazingly resilient throughout the last 3 and a half months. So, why am I so surprised that they are choosing now to act out?

The last few days have been interesting around here.

Tanner waits until I'm feeding Crew to asks for something. If I say "no", or if I say "wait", he stands just barely out of arms' reach and screams for it at the very tippiest top of his lungs. If I'm feeding or rocking Crew, he won't come to me when I call. If Justin calls to him (for example, to change his nasty diaper), he turns around and walks over to me with a sassy little smile. Last night when he did it, I spanked him first and sent him to Daddy for another. As far as other attitude issues, since we have generally only used/needed time outs for tantrums until he calms down, Tanner is famous for being in time out for 30 seconds and coming out of the bathroom calm and collected. He was in time out for 45 minutes a few nights ago. Over feeding himself. And he don't cry pretty, I can tell you that.

Kinley isn't being perfectly angelic either. As Tanner is getting into more frequent trouble, Kinley is quite obviously relishing the moments. When I took Tanner upstairs yesterday to confess to Daddy that he colored on the fridge with a crayon, I commanded her to stay in her chair and finish eating her breakfast, but she snuck up the stairs to listen at the door and hear the fallout because she just couldn't help herself. She just had to know exactly how much trouble he was in. She was positively giddy.

Back to coloring with crayons; I have always prided myself and my children on the fact that they really aren't very destructive kids. We've had to get crayon off the wall only once, and that was when Tanner was maybe 18 months. Apparently, 3 and 6 are good ages to take it up the habit. I heard the sing-song voice "Mooooommy! Tanner is coloring on the waaaaaaall!" (insert smug little kindergarten face here). I put Crew's bottle down, raced to Tanner and totally lost it. In the middle of my tirade over the gigantic circle he had just created on the stairway wall, I looked over to the left and down a little and noticed the small pink stick figure. Hmmm... Only one person in this house draws stick figures and it isn't Tanner! What is going on here?!!

And that fridge incident? That came after the wall incident. I was surprised by it anyway, but I was shocked that he did it right in front of me. Like he didn't even care that I was in the kitchen making lunch, in full view of his destruction. And I won't swear to it, but I'm pretty sure that I saw a hint of a smile when I lit into him for that one.

Saturday, February 21, 2009

Big Fat Babies

My baby is monstrous now. 5 pounds, 5.5 ounces. Yay!! It's so funny because he is tiny, as Justin continues to remind me, but I think he looks so BIG lately! Relativity is everything, eh?

Anemia
His hemoglobin is very low, somewhat worrisome. Normal level would be about 23; Crew's level is currently 7. The doctor has increased his iron and we'll reevaluate next week because he isn't currently exhibiting any outward, clinical symptoms of being so low. If it's still low in a week, we'll run a CBC panel to test for brewing infections. Crew is famous for having desperately low hemoglobin and perfectly clean panels. Theoretically the iron increase should take care of it, provided there is no infection. We used to bump him up with endless blood transfusions in the hospital when he got this low. That's a fairly extreme option if this doesn't work, but the doctor really thinks this will work. I'll probably call the hospital later to see what his levels were when he was discharged.

Friday, February 20, 2009

Our Baby Genes

Am I crazy or does this baby picture of Tanner look a lot like a beefy version of Crew?

Thursday, February 19, 2009

Being Home

I think he's transitioned well into our home. The first few days he wanted to be held every minute, awake or asleep, but I think he realizes now that this is his permanent home and that I will always be here for him. He slept half the night in his bed last night and during the day he takes naps on my chest, in his bed, in his car seat, in his bouncer, and in his swing.

Last night I was happy that for his midnight feeding he was only up for a half hour total instead of the usual 90+ minutes. I wasn't so lucky at 4, but ended up convincing him to snuggle me on the floor and let me fall asleep. We still drag the couch cushions upstairs so that I can sleep closer to him (and sometimes with him). I accidentally refered to "Justin's room" the other day when meaning the master bedroom. Oy vei. Oh, and Crew is in the office. It's now "Crew's Room" but he shares it with the computer. And me.

We have him moved over to the Playtex bottles and somewhat transitioned to the Mam binkies. He still prefers the big green monster binkies, but he'll take both in a pinch. He's much easier to feed now and will