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.
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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.