Sleep deprived

When Ellen was a baby, Jack and I came across this quote:

Babies are terrorists. Their number one tool is sleep deprivation.

Three children later, the tactics have not changed. I don't remember the last time I had a full night's sleep, and for the past few days Elijah has been especially alert from around 11pm to about 4am. Thank goodness for Nana, who took him last night so I could get more than two hours of sleep in a row.

In spite of the nasty green runny noses Ellen, Jack Jack, and Rose have had for going on two weeks, Elijah has remained healthy. We're using the pulse oxygen monitor at home, but we've never had to actually give him any oxygen, and his levels have been good. He has his two month check up, immunizations, and another synagis shot this coming Tuesday.

Pa brought home some sparklers for the kids, so I think we'll light them up after dinner and have some fun, and then go to bed early.

2011, here we come!

Still pumping

With all the excitement over Elijah's oxygen levels last week, and having to wait until today to get a pulse oxygen monitor and oxygen, I completely forgot to post the results of his second swallow the week before last.

The bad news is that I still don't get to try breastfeeding yet, and they won't test him again for three or four months to give him time to get through a good growth spurt. He successfully and safely swallowed every thickness of liquid barium they gave him until they got to water/breastmilk consistency. Then he aspirated the first swallow, without even coughing or crying or showing any signs of distress. His lack of reaction is probably the scariest part, because he could be swallowing all kinds of liquid into his lungs and we'd never know until it was too late. If I hadn't seen it with my own eyes, I would probably be a little skeptical and more bitter about having to pump for three or four months and beyond.

The good news is that his swallowing has definitely improved, and I don't have to thicken his breastmilk as much, just to whole milk or formula consistency. He's definitely got an appetite, too.

That's the skinny on our skinny little boy.

Butterfly house

Another Fair Park year round attraction is the Butterfly House at the Texas Discovery Gardens. The kids loved this, as well as just exploring the gardens themselves.

We walked from chilly fall weather into a rainforest full of butterflies.

Ellen and Jack did a great job of keeping track of which of the 30+ varieties of butterflies we actually saw.

Rose was fascinated with the emergence chamber, where the butterflies...uh... emerge from the cocoons they arrive in from all over the world every week.

The butterflies were literally everywhere. None actually landed on us, but I bet if we sat really still holding some ripe fruit they would.

So fun!

This one is for my dad.

Happy Birthday, Dad!!

This post is also for my brothers. You know who you are.

While I was home visiting my parents and youngest brother, we got some family together to go with us caroling at a nursing home like we did last year. Ellen remembered going, and wanted to go again. So did I. I learned all the words to "Frosty the Snowman" from singing it so many times by request after my kids heard it on that caroling trip.

This year there were 15 of us, and my brother took his guitar. We added "Feliz Navidad" to our repertoire, which my kids already knew. Ellen loves singing along, even if she doesn't know all the words.

While perusing the book of Christmas/holiday songs we were working from, I happened upon a hilarious little gem that I laughed about all weekend long. I also enlisted Matthew in learning it so we could sing it for everyone who came to visit. Over and over and over.

Are you ready? It's called R2D2, We Wish You a Merry Christmas. Oh, yes. I come from a family of big Star Wars fans, but this really gave me something to laugh about. I'm sitting in the hospital writing this and still laughing about it. I suspect if a certain college roommate had known this song, we would have sung it for our college ward Christmas party, in addition to that Beatles Christmas song.

(Chorus)
R2D2, we wish you a merry Christmas.
R2D2, we love you, it's true.
R2D2, we wish you a merry Christmas,
we hope our little message gets to you.

(Verse 1)
We look up at the winter star,
we know that's where you are.
Our chiminey's big and round,
so you can come right down.
And if our wish comes true,
we'll spend Christmas Eve with you;
our hearts will sing with glee
as we decorate the Christmas tree.

(Chorus)

(Verse 2)
And if the snow becomes too deep,
just give a little beep.
We'll go in by the fire
and warm your little wires.
Spreading Christmas cheer
will be easy with you here.
We'll dance and sing and play
from Christmas Eve 'till Christmas Day.

(Chorus)

That's no typo in verse one. It really does say "chiminey". And it gets better. In doing a little research, I found this song is one of a whole Star Wars Christmas album, "Christmas in the Stars". Oh yes. This song is Jon Bon Jovi's first professional recording. Enjoy.

Jack + Ward Christmas Dinner

Jack, Ellen, and Rose helped Nana with table decorations.

Jack tried on the reindeer antlers.

Jack sat with his class while they got ready to go up on stage and sing "Jingle Bells."

Jack did not actually go on stage, but Rose did. Jack sat on a chair next to Mommy, who was playing the piano. He does know all the words to "Jingle Bells," though.

Home again, home again, jiggity jig

This is how Elijah feels about being in the hospital. This is how I feel about being in the hospital.

Bleh. An IV in the foot, two sticks in the heel for blood for labs, heart rate and breathing rate monitors, pulse oxygen monitor, unfamiliar people, unfamiliar sounds, unfamiliar smells, people waking you up for probing, prodding, and poking as soon as you fall asleep, and once they get you in there, they never let you go when they say they're going to.

(However, all the nurses, doctors, and staff were very kind and friendly, as helpful as they could be under the circumstances, and we are not complaining about the wonderful competent care and extra attention Elijah gets. It's because he's so cute, right?)

What's new? (1) No more furosemide (lasix) because the doctor thinks that's what caused low sodium on his blood work. That's one medicine down. Now he only has three daily meds and one twice daily. (2) A pulse oxygen monitor and oxygen should show up sometime tomorrow. That was the hold up for his discharge, and they finally let him go at 7:30 after deciding he'd be okay for one night without being monitored.

We finally made it home at about 10:30. Time for his 11 pm feeding and then I am getting some sleep.

The latest on Mr. E

Elijah's O2 sats have been higher today, especially since they gave him the blood transfusion. Several people have asked how giving him blood will help with low oxygen. Low oxygen can be a sign that not enough blood is getting to the lungs, and in Elijah, that can be a sign that the shunt they placed in his heart in the first surgery is narrow, or that the sternum is pressing on it or it is being constricted in some way. This is a normal occurrence, and it will not be an issue after his second surgery, but there's not much they can do about it now except monitor and give him "supplemental" oxygen if he needs it.

Low oxygen sats can also be a sign of anemia, and as they checked him in and did lab tests on his blood, they did find a low blood count, and that's primarily why Dr. Laird ordered the transfusion. Blood carries oxygen to the body, so if there isn't enough blood to do the work, the body won't get oxygen. Unfortunately, giving blood also causes the body to suppress blood production on its own since it thinks it has enough, so this may be a cycle that repeats in a few weeks. Again, there's not much they can do except monitor and give blood as needed.

So, in the spirit of monitoring, Elijah is going home with an oxygen monitor of his own, and possibly oxygen in case he needs it. As there are two hospitals in Longview, maybe if the cycle does repeat, we can take care of it closer to home. I don't have a follow up appointment with the cardiologist yet, but I'm guessing they'll want to see him in 2 or 3 weeks. We haven't actually been discharged yet, but the orders have been written, and I expect to go home today.

Good thing I brought socks with me. It's like 45 degrees outside, and cold feet can also cause a low O2 reading.

Angel Ellen

Ellen was assigned to be an angel in the primary nativity at the ward Christmas dinner.

Mommy: Your primary leaders sent home this note that you're supposed to be an angel for the ward Christmas dinner.

Ellen: Who picked me to be an angel?

Mommy: Your primary teachers.

Ellen: Why?

Mommy: Because they want to have the primary children act out the story of Jesus' birth at the Christmas dinner.

Ellen: Why am I an angel?

Mommy: Because that's what they picked you to be.

Ellen: Why?

Mommy: Because they needed an angel.

Ellen: But why did they pick me? Because they like me?

We like you, Ellen.

Your cousins like you.

Three cute angels.

Yes. An angel with purple pants. And a peace symbol where the pocket usually goes.

"Peace on earth, goodwill toward men."

A bump in the road: Elijah's update

We took Elijah for his checkup with the pediatric cardiologist this morning. EKG - good. Echocardiogram - good. Weight (8 lbs 10 oz) and height (21 in) - good. Blood pressure and heart rate - good. O2 saturation - 60s = not good. After several tries to get a better O2 reading, Dr. Tracy told me she was admitting Elijah to the hospital for 24 hours of observation for cyanosis.

No problem, except today was Jack's day off, so we had the kids with us, and he was taking them to ride the DART trains while I took Elijah to his appointment, and then we had made plans to play with cousins on our way back to Gilmer. Instead, Dr. Tracy's nurse walked me down to admitting, and I took Elijah and checked him into his room in the hospital, and then we drove straight back to Nana's house to drop Jack and the kids off, and I drove back to Dallas so I can spend the night with him and take him home when they decide he's okay.

Lab work done when Elijah was admitted showed a low blood count, so he's getting a blood transfusion to help him out there. So far his O2 levels have stayed high enough that he hasn't needed any supplemental oxygen, but if they stay in the 60s for 15 minutes, he gets the oxygen mask.

So it turns out that Elijah is not superbaby, and we will not take his "good" health for granted, since he is really a very fragile little boy awaiting a second open-heart surgery. He sure can wail though. All worries of his voice never coming back are completely gone. The ear-piercing cry I heard when he was born has returned in full force and ensures that he gets his milk on schedule. If you know Jack Jack, you know the kind of cry I am talking about, but Elijah's is even more high pitched.

And it turns out that I am not superwoman, either. But you do what you have to do.

Born: 10/25/10

Norwood surgery: 10/26/10

Discharged: 11/15/10

Re-admitted: 12/16/10

Rose + Ward Christmas Dinner

Ready to go to the ward Christmas dinner!

We tried on hats.

We tried on noses.

We tried on candy canes.

As far as Rose was concerned, the dinner was a success. Keep those candy canes coming.

Was it worth it?

This is what Jack always asks me after I've insisted on doing something that was logistically complicated, inconvenient, required help from other people, and had few obvious rewards.

This was also the question in my mind as I sat in the aisle of an auditorium filled to capacity with a squirming one year old child on my lap who didn't understand "It's not our turn to sing" when she wanted to sing along (loudly) to the choir on stage's rendition of "Deck the Halls."

I sang in choir in school starting in the fifth grade. Junior high, high school, undergraduate, and graduate school all hold memories of choir practices and performances for me. In high school the annual Christmas choir concert always ended with an invitation to alumni to join the choirs on stage in singing "Let There Be Peace on Earth." After I graduated from high school, whenever my visits home coincided with the Christmas concert, I attended not just to sing with the alumni, but also because I always had a sibling in the choirs to sing with.

My mom mentioned my youngest brother would be singing in his last Christmas concert, and as soon as she told me the date, my mind went to work figuring out how I could go. After concluding it would be a logistical nightmare and an imposition on too many people, I reluctantly decided several times to skip it. But in making plans for the Christmas season, deciding when to spend time with my family, and considering Jack's work schedule, several stars were forced into alignment and I managed to be in Waco on the day of the concert.

I got a babysitter for Elijah. A wonderful friend and neighbor agreed to let me drop him off at her house before the concert. Jack had already left because he had to work. I took Ellen, Jack Jack, and Rose with me to the concert because I was sure I could handle it, and because I envisioned what a lovely experience it would be based on several assumptions:

1) that I knew my children well enough to be able to predict pretty much how things would go.

2) that the novelty of a high school Christmas choir concert in a big auditorium at night would be entertaining enough to discourage bad behavior.

3) that sitting with Grandma, Grandpa, Aunt Mary, and Uncle Luke would be fun and discourage bad behavior.

4) that the music would be entertaining enough to discourage bad behavior.

5) that the concert would be long enough for at least one of them to fall asleep, thus preventing bad behavior.

I was almost right on in my assumptions, but what I didn't expect was for Rose to be so into the music that she would want to sing along. I had to take her out, and then stand in the back, and then sit on the floor in the aisle just in case. But as I was sitting there listening to my brother's men's choir sing "Of Music," a song commissioned for them to sing at the 2011 Texas Music Educators Association convention in a couple of months, I was completely enveloped in beautiful music and fitting words, and all I could think was "yes, this was worth it." The music actually moved me to tears. Moments later, Rose dropped off to sleep.

Jack Jack and Ellen also fell asleep before the end of the concert, and although they saw Matthew sing, they missed Grandpa singing in the "combined mens choirs and dads" Christmas numbers, and me singing with Rebecca, Mary, Matthew, and all the combined choirs. We had to carry them out to the car and carry them into the house. We were already home when I realized that I had another child, and that I needed to go pick him up, too. I don't know how my wonderfully helpful family members felt, but that concert was all the Christmas gift I needed, and it was worth it.

It was worth it for my children to hear beautiful, beautiful choral music performed well. It was worth it for my children to hear their Uncle Matthew sing "Feliz Navidad" for his "Senior Spotlight" solo. It was worth it for Ellen to learn what a spotlight was. It was worth it to sit in that auditorium again with my parents and sisters and brothers-in-law and brother. It was worth it to sing "Let There Be Peace on Earth" with two of my sisters and my youngest brother. It was complicated, and it was inconvenient, but it was all worth it.

First official bath

As I was bathing Elijah, Jack grabbed the camera.

Jack: First real bath!

Lorraine: Well, kind of.

Jack: Aren't you supposed to take lots of pictures of these things? What do you mean, "kind of?"

Lorraine: Elijah spit up his whole bottle on himself and me a couple of days ago, so I gave him a tub bath since his scabs had all fallen off.

Jack: Oh. Well, close enough.

If you've been following since the beginning, you can see how much better his chest looks!

Elijah LOVED being in the warm water. The sink bath was a much better experience than the tub. He got a lot cleaner, too.

Some family pictures

1. It was cold.

2. Matthew helped a lot. So did Grandma. And Mary.

3. Of the two on my camera, this was the better one. I hope Grandma got some good ones.

4. Jack and I don't have very many pictures of just the two of us. We're trying to remedy that.

Children's Aquarium at Fair Park

One weekend when Jack brought the kids to visit Elijah and I in the hospital, we went to the Children's Aquarium at Fair Park in Dallas. It was newly remodeled and just opened, so not all of the exhibits were completely finished (we missed out on the octopus and the jelly fish) but the sting ray petting/feeding area and the shark feeding show more than made up for it.

I even had a good discussion with the kids about why the sea turtle had one tiny fin and one regular one, and why/what animals are kept in captivity. The size and price were just right for little ones, and we had a lot of fun!

Just chillin'

It's about time we had some good pictures of this child.

Yep, that's Elijah hanging out in a laundry basket. Here he's completely awake, but he likes to nap where the noise and the lights are. That's what spending the first three weeks of your life in the hospital will do to you. Oh, and being the fourth child may have something to do with it as well.

Loving slowly

Another awesome week at church with the kids. Elijah doesn't get to come to church with us. He stays home with Nana. Today I went with Pa and Uncle William. It was fast and testimony meeting, and I really wanted to share my testimony, so when I stood up to go up front and Ellen, Jack, and Rose all got up to follow me, I let them. I figured it would be less of a scene than to have them all screaming on the bench.

Of course I cried as I talked about being thankful for the gospel, for blessings, for a church family, and for covenants and forever families. I have nothing to be crying about, since Elijah is doing great, my other kids are healthy and happy, Jack has a job, and we all have clothes to wear and food to eat, as well as loving family and friends to share our lives with.

A couple of days ago I was suddenly overwhelmed and crying to Jack, and as he started to say, "It's going to be okay," I interrupted him to say, "I know it's going to be okay. I just wish it could be okay faster." Jack started laughing and said that sounded like something he would say.

I've thought a lot about what I said, since it was like a revelation to me as the words came out of my mouth. I know things are going to be okay. I know everything will work out. I know the big picture. I just get impatient about the details, and not knowing exactly how and when (or even if) my personal expectations will be realized. My next thought was, "What's the rush?" Just thinking about Ellen being five years old and going to kindergarten next year is enough to make me want to live perpetually in the present.

Tonight I watched the First Presidency Christmas Devotional with Ellen and Jack Jack. My boy was asleep before the first talk started. Ellen asked me for a drink while I was feeding baby Elijah, and when I told her that it was okay to go get a drink, she told me that she wanted me to go because (her words verbatim) "I don't want to miss anything."

Multi-tasking is over-rated, and I don't know why it is so hard for me to just do one thing at a time. Having little kids is good for me, and they help me remember that I don't want to miss anything either.