Thursday, November 27, 2008

One (of many) reasons

I don't know if blogspot has a character limit per post, but if I were to list everything I am thankful for today, I would probably meet that limit!

So, instead I wanted to write about one (of many) reasons I am thankful today. If you were to have told Roger and me on the day of Luke's diagnosis that we would, two years later, be able to say without hesitation that we would never trade our experience, we probably would have politely agreed while we rolled our internal eyes.

The beautiful thing about the way God works in our trials is in this verse: "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." (1 Corinthians 1:3-4)

God's grace and comfort are so real to me through the connections we've made with other "heart" families. And this is God's intention! He never intends for us to walk through trials alone, and even when we feel like no one here on earth could possibly understand what we're feeling, He says, "I'm enough." And He is enough, but in His love for us, He also gives us people to walk alongside.

Last Sunday, Luke and I got the opportunity to meet Maddie and her mom, Katie as they were on this side of the state for Maddie's cardiology appointment. Katie and I met through our blogs, but what a treat to meet them in person! Maddie, hard to believe, is even cuter in person than in picture! Maddie is 8 months old and had her Glenn at Children's Hospital back in July. She is doing so well and is a human lightbulb! Katie and Maddie, it was so good to meet you!

Happy Thanksgiving everyone! Let's give thanks and please also keep those heart kids that are spending Thanksgiving in the hospital in your prayers!

Friday, November 21, 2008

A prayer challenge I'm taking

I found this awesome idea on another blog I follow and I am excited to see what God does in our family through this seven-day commitment!

If any of you also decide to try this 7x7 adventure, please comment and let me know how it went!

I long to be more of an unceasing pray-er, and the focus of 7x7 is to pray diligently and purposefully for our child(ren). "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." —1 Thessalonians 5:17

You can print these verses and timeline ideas out and keep them handy throughout your day. Or you can copy them onto 3x5 cards, whatever works best for you. Thanks, Angie, for the great idea!

1. When they wake up: "Let the morning bring (child's name) word of your unfailing love, for she has put her trust in You. Show (her/him) the way (she/he) should go, for to you (she/he) lifts up her soul."

—Adapted from Psalm 143:8

2. When they are getting dressed: "Therefore, as God's chosen child, holy and dearly loved, clothe yourself with compassion, kindness, humility, gentleness and patience. Lord, help (him/her) bear with others and forgive whatever grievances (he/she) has against others. Help (him/her) forgive as the Lord forgave (him/her). And over all these virtues, help (him/her) put on love, which binds them all together in perfect unity."

—Adapted from Colossians 3:12-14

3. While they are eating: "Teach (child's name) the secret of being content in any and every situation whether well-fed or hungry, whether living in plenty or in want. Teach (him/her) that (he/she) can do everything through him who gives (him/her) strength."

—Adapted from Philippians 4:12-13

4. When they go out of the house: "(Name of child), do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is-His good, pleasing and perfect will."

—Adapted from Romans 12:2

5. While they are taking a bath: "Lord, give (name of child) clean hands and a pure heart, and let (him/her) not lift (his/her) soul to an idol or swear by what is false. Let (him/her) receive blessing from the Lord and vindication from God (his/her) Savior. Let (him/her) be part of the generation of those who seek him, who seek your face, O God of Jacob."

—Adapted from Psalm 24:4-6

6. When they are going to bed: "The Lord Your God is with you; he is mighty to save. He will take great delight in you, he will quiet you with his love, be will rejoice over you with singing."

—Zephaniah 3:17

7. While they are sleeping: "I pray that (name of child) will do everything without complaining or arguing, so that (he/she) may become blameless and pure, a child of God without fault in a crooked and depraved generation, in which (he/she) shines like a star in the universe as (he/she) holds out the word of life-in order that (he/she) may boast on the day of Christ that (he/she) did not run or labor for nothing."

—Adapted from Philippians 2:14-16

Home sweet home for baby Alex

Alex came home on Sunday, 10 days post-op. What a star!

Unwarranted, worthless worry

There is nothing unnecessary in the Bible. What God has given man to write down is all relevant, useful and significant. I have been trying to get that knowledge out of my head and into my heart when my mind tends toward worry or fear. God says to us, "'Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?'" He tells us, "' not worry about your life, what you will eat; or about your body, what you will wear. Life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds!'" (emphasis added).

About three weeks ago, Luke had the crud that's been circulating around, so I took him to the pediatrician's office to make sure his lungs were clear and his ears weren't infected. It was a simple upper respiratory infection, and he was healthy enough to get his flu shot. As is standard procedure, he was weighed at this appointment and the scale read 23 lbs, 3 ounces (that was with socks on). In early August, at his last dietician's appointment, he weighed 20 pounds even. I left the appointment very grateful that his lungs were clear and he was handling this cold very well, but I didn't like that he hadn't gained any weight in almost 3 months.

Our cardiologist was not concerned in the slightest and I took some comfort in that, but still, the worry persisted. I noticed I started thinking more about Luke's food intake, and wanting to push him to eat a bit more (all old habits that I've worked hard to let go of). My head knew that he was okay, that this is so typical of toddlers, but my heart automatically feared that his heart was working too hard.

Fast-forward to our three month follow-up appointment with Luke's dietician this week. I sat him on the scale, waiting to see that digital number pop up, and when it did, it read 24 lbs, 6 oz. 12th percentile, like he always is.

I think God tells us not to worry so often in His Word because that time could be spent so much more usefully. Thank goodness His mercies are new every morning and thank goodness He gives us plenty of situations to practice trusting Him more!

Teaching us to live worry-free, in the moment!

Oh, and thank goodness for weight gain! =) I have to admit, I did a little dance when I saw the scale's number.

We don't go back to see Judy for another SIX months. Our only change is that she wants us to stop using Pediasure altogether and offer him just whole milk. We'll see how that goes, since Luke's so used to the Pediasure taste!

Official stats, for the record:
Weight: 24 lbs, 6.3 ounces - 12th percentile
Height: 2' 7.97" (ok, can we call this 2'8"??) - 10th percentile
Head circumference: 47.8 cm - 30th percentile

Luke, you keep me on my toes, or more accurately, on my knees, so I thank you for that!

Wednesday, November 12, 2008

Get your Kleenex ready

I just had to share this awesome video created by a young adult survivor of CHD (specifically Tetralogy of Fallot). He is a musician from Australia, currently living in Nashville to pursue his career. In all the little children's faces I saw Luke, "then" and "now", and thanked God that so many heart babies now have a chance at a full and abundant life.

Click on the video screenshot to watch the video.

Monday, November 10, 2008

Baby Alex doing great!

I got a chance to see Alex in the PICU on Saturday and was able to visit with Dana (Alex's mom) again this morning. Alex is doing FANTASTIC! He is four days post-surgery and already has the ventilator, all three chest tubes, pacer wires, and arterial line removed. He is on a bit of oxygen through a nasal cannula and has a small amount of fluid on his lungs, but overall he is moving through his recovery like a champ. Keep it up, Alex!

Thursday, November 6, 2008

Ever feel like this? I do ...

UPDATE: Besides being more independent and opinionated during the day, Luke has also had trouble the last two weeks with bedtime and night wakings. Ever since we got the okay to let him sleep through the night without food at 14 months, he has been a dream sleeper. After stories and prayers, he rolls right over in his crib and falls fast asleep. The last couple weeks, however, he has cried when we put him down and keeps up the tears for about 45 minutes. Awful! Well, I am happy to report that tonight he went to bed tonight without a whimper. I think God knew we needed that little bit of encouragement! Tomorrow night might be a different story, but we're going to go kick up our feet, put some ice on our black eyes and enjoy the quiet for tonight!


ORIGINAL POST: We have had an interesting past three weeks with Luke. We have always described him as strong-willed and sure of what he wants, but those characteristics have always been fairly easy to rein in. In the past couple of weeks, Luke has gotten stronger, louder and more defiant. After that sentence, I want to make sure everyone knows the shiner is not a result of the above trends. =)

After scouring books, calling friends and watching discipline DVD's, Rog and I are reassured that Luke is not a little monster without the capability of empathy or obedience (my fear), but a — you guessed it — toddler. So, we enter toddlerhood armed with the time-out stair, the "ignore the behavior and walk away" tactic, and lots of prayer. Discipline is hard! Hardest is being a consistent disciplinarian. Especially when you aren't seeing a whole lot of progress. But I am reminded by many who have survived this phase that the hard work will bear fruit.

I have been a part of BSF (Bible Study Fellowship) the past several years and this year we are studying the life of Moses. Through Moses' life, I am seeing in a new way God's patience with his people, and his promise of ever-present help. You often hear of how Moses resists God's call for him to go to Pharoah to bring His people, the Israelites, out of their oppression in Egypt (Exodus 3 and 4). But I didn't realize that Moses resists God four times. And all four times, God patiently walks Moses through his hesitancy.

Moses' final argument, "O Lord, I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue" echoes a bit of how I have been feeling in this new phase of parenthood. I do not always feel equipped to train Luke up to love the Lord and to honor his mom and dad, to serve others before himself and to long to do what is right. But how God answers Moses' concern is exactly how He answers my concerns: "The LORD said to him, 'Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD? Now go; I will help you speak and will teach you what to say.'"

Raising Luke is not about how good or not good I am as a mom. Raising Luke is about relying on God's wisdom and His goodness in generously giving that wisdom to Rog and me when we ask.

So, with God as our help, we forge ahead into this strange land of toddlerhood, trusting that all three of us will come out on the other side with nothing more than a black eye. =)

Oh, you're wondering how Luke got his black eye? Wrestling with Papa and Nonna. How I love boys.

Two more smelly photos and one handsome boy

Important to get the skunk from all angles!

Lil' Stinker with Mama and Auntie Jenny

Sunday, November 2, 2008

Baby Alex

We were connected with an awesome family through our cardiologist's office and their baby boy, Alex, will be undergoing the Glenn and DKS (his first open-heart surgery and the same two procedures Luke had done last August) this Thursday at Mary Bridge Children's Hospital. Please pray for this family and that Alex would recover beautifully and quickly from this surgery.

Go, Alex, go!

Saturday, November 1, 2008

What's that SMELL?!

When I ordered Luke's Halloween costume, Roger was not loving the idea. "Really hon? I don't think I want my son to be a skunk for Halloween. Skunk's stink!" And then the Old Navy package arrived. "Let's just try the costume on Luke and if we really don't like it, I'll send it back." Once the hood was up and the belly was velcroed in place, there was no question we were keeping the little stinker outfit! See for yourself the cutest little skunk in town:

Lukey Le Pew

Me? A little stinker?

Mmmm...Hot dogs


Mmmmm...Candy. We've been assured by Dr. Stefanelli that Luke's coronary arteries are not impacted by his congenital heart defect. Good thing! =)

The night before Halloween, I took Luke to the YMCA's Harvest Festival, where the highlight for him was not the bouncy blow-up bus (although fun) or the hot dog and cupcake (which was yummy) but the little boy in an Elmo costume he followed around the field. Every day since, Luke tells me, "Saw Elmo! Big Elmo!"

On Halloween night, our plan was to Trick-or-Treat around downtown Puyallup. It was a bit more crowded than Rog and I anticipated and then there was the man in the hairy gorilla costume who thought it would be funny to roar right in Luke's face. I have never seen such a horrified reaction on a toddler's face. He turned away so fast he fell flat on his face. I know the man felt terrible, but it was pretty awful and the mama bear in me wanted to give him a piece of my mind. Instead, I picked up Luke and tried to distract him with a bag of M&M's. After that, he was not very excited about trick-or-treating, so we headed back to our safe, gorilla-less neighborhood and prayed that Luke wouldn't be up all night with nightmares!

We are thankful the next two holidays are also gorilla-less and instead of trying to avoid scary ghosts and goblins, we will get to point out the symbols of thankfulness and our Lord's birth!