23 months, 4 weeks

My email pinged with a notification from BabyCenter.com. It was the last newsletter of my baby's "babyhood". I have told Laney multiple times over the past weeks that she is, under no uncertain terms, not allowed to turn two.

She is being one disobedient little girl.

Because Friday is coming very fast. The girl can make me laugh, she can captivate me; she can jump and talk and run; she can make me crazy and she can bring overwhelming joy, but she can't stop time any more than I can.

So, with or without my approval, this girl is turning two on Friday.

She has brought our family such healing these past two years. She may never know the gift she is to our home, but I will spend her life trying to help her understand her worth.

In celebration of her, we put on a "Purple Party" for her Friday night (or, "Poo-poo party" in her words. I can't tell you how many times Luke would ask Laney to say that, then roll in laughter).

(I didn't laugh at all. I would never encourage potty humor.)

My sister, her husband, and their sweet little Pritchett flew up for the weekend, so Luke and Laney got some cousin time.

Poor guy.

And poor guys. The tiaras had to be worn:

Laney-bug, I can't believe you're two. Do you know how prayed for you were? And are? God handmade you to be the perfect completion of our family. You bring smiles to all three of us every single day.

When you say, "Ahhh, doggone it", we smile.

When you sing with abandon into your microphone, we smile.

When you ask me where Bubby is, even just a few minutes after we've dropped him off at school, I smile.

You are such a blend of shy and outgoing; complacent and feisty. I love that you don't let your Bubby walk all over you. Because he can be a boss! You have no trouble telling him no, or stop, or don't.

You are my little chatterbox, hardly stopping to take a breath most days. You love to know where everyone is, and what everyone is doing. "What are you doing, Daddy?" Your curiosity will serve you well!

You are my little morning buddy, running errands with me, getting Starbucks together, going to the gym or for a run. Next year, when Luke is in full-day school, we will have most of the day together. And just think, almost a full day of playing with your toys how you want to! I am so thankful for my work schedule that allows me to spend all that time with you. I know your school years will come quickly.

You are my flexible child. You transition well, and even though you would prefer to stay with mom or dad, you go with other caregivers really well. Maybe one or two tears at the beginning, but then you adjust quickly. You go willingly into the church and gym nurseries, and you absolutely love your two half days a week at Nonna's house. She has so much for you to do down there: Worm hunting, tea parties, gardening, painting, trampoline-jumping, and lots and lots of jewelry.

Every other Wednesday, you spend the morning with your friend Leighton, who is just 5 weeks younger than you. For the most part, you girls play great together and with her dark hair and your blond, you two are the cutest pair on the block.

I love that you love your sleep. You sleep 11-12 hours each night, taking a 1.5-2 hour nap each afternoon. Usually, you wake up singing, although lately, you are calling out, "Momma! I have to go pee-pee!" Yes, you are out of diapers. This was unplanned and completely shocking to me, but after you asked to go to the toilet a couple of times, I figured I better run with it. There are even a lot of mornings that your pull-up is dry from overnight.

In tops and bottoms, you wear a size 2T and I am guessing you weigh about 27 or 28 pounds. You still carry your baby fat and I am nowhere near ready for that to go away. I could eat you up my sweet daughter.

We couldn't love you more, Laney. Your heart is beautiful and I pray every day it would grow to love Jesus as your best friend. I think back to when I was pregnant with you. Whatever I pictured you to be was not even close to who you are.

Happy Birthday, Laney-bug.

All for naught

Luke's 2nd trimester report card came home with him last week. It is broken down into multiple areas of assessment, and each area is rated from 1-4. The report card concludes with the teacher's comments.

"Luke is doing a great job in kindergarten. He can identify 18 of the 18 upper and lowercase letters and letter sounds that we have learned so far. He can segment and blend words and read high frequency words. Luke is on unit 20 of the kindergarten Read Well curriculum. The goal is for students to be on unit 20 by the end of the year. Since Luke has almost met that goal, he will begin working on the first grade reading curriculum after he passes unit 20.* He is making great progress!

His math skills are just as strong as his reading skills. He can count up to 20 objects with 1:1 correspondence, identify numbers to 20, count to at least 50, count backwards from 10, and order numbers from 1-10. He can also compare 2 sets of numbers by telling which number is more or less and he can solve addition and subtraction problems with manipulatives.

Luke writes his first name with a capital letter at the beginning and with lowercase letters for the rest of his name. He can draw a picture and write a sentence based on a prompt.** The students were given a spelling test in which they were asked to look at a picture and write the word that goes with the picture (for example, write the word "cat" under the picture of a cat). Luke spelled 6 of the 9 words correctly. On the 3 words his did not spell completely correct, he was able to write most of the correct letters in the word (for example, "tigr" for "tiger").

Luke is very aware of classroom rules and works very hard to follow the rules and directions. It can be upsetting to him when other students are not following the rules. Luke is often one of the first students to follow through with teacher directions.*** He will often encourage other students to follow the rules and directions as well. Luke is kind and friendly to all students in his class. He takes his time and does his best work. He typically does a wonderful job of working quietly and independently. I really enjoy having Luke in my class."

Shamelessly, this is completely a brag post, but it's our reality that data shows kids with congenital heart disease can more often struggle in school and have a higher rate of learning disabilities. Since Luke hit school age, each cardio appointment includes questions around his learning and any concerns we may have.

"As a group, children with CHD have a higher likelihood of academic, behavioral and coordination problems compared to children without CHD. This does not mean that all children with CHD have these difficulties, but the number of children is much higher than that seen in the general population. These problems seem to be more prevalent in children with complex CHD: CHD severe enough to require surgery in the first few months of life ..." (The Emerging Recognition of School and Behavior Problems in Children with Congenital Heart Defects, The Children's Hospital Of Philadelphia Cardiac Center)

So I'm allowing myself to brag today.

*Since the report card was printed, Luke passed his last kindergarten test and gets to start first grade reading curriculum!

**The prompt was, "If you could have any pet, what pet would you want?" Luke's sentence? "I want a bird." Not happening, buddy.

***I wish he was as quick to follow instructions at home as he appears to be at school!

This report card is such a message to me about preemptive worrying. We (speaking for myself) spend so much time worrying about that which may or may not take place. The question of "What if ..." is a thief. Pure and simple. Did you know the old English word for worry actually derives from the word "choke"?

This message, fittingly, is one I need to be reminded of since I've been catching myself doing a lot of preemptive worrying after Luke's last cardio appointment.

"What if his sats don't bump back up?"
"What if he needs the Fontan this summer?"
"What if Seattle hasn't found a new surgeon?"
"What if we're doing the wrong thing by waiting?"
"What if surgery kills Luke's spirit? What if it changes him?"
"What if his Fontan fails?"

And to be as honest as I can be:

"What if he doesn't survive?"

I have had moments in the last weeks where I'm literally breathless trying to figure out how to go back to the hospital. I broke down with a friend recently and all I could say was, "I can't do it. I can't do it." Thank the Lord for my friend, who talked me down from my cliff of panic, helping me remember what I know but what in that moment had been stolen from me:

“Fear not, for I have redeemed you;  I have called you by name, you are mine. When you pass through the waters, I will be with you;  and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.For I am the LORD your God, the Holy One of Israel, your Savior." Isaiah 43:1-3

As I read this, it hit me afresh: God is promising His presence and strength as you are passing through the waters; when you walk through fire. Not before. My friend reminded me that of course it feels like I can't do it right this minute because I'm not in "it" right this minute.

How difficult it is to find peace in the line between thinking about what is to come and worrying about it. The Bible doesn't ever say not to be thoughtful or mindful about the future. It's not sin to research my son's heart defect. It's not wrong to ask questions or think through possible scenarios. My husband and I had a conversation just last week about the timing of Luke's next surgery and whether having it this summer may benefit him because we know his first grade teacher so well.

If we are honest with ourselves, though, we know when we have crossed from thoughtfulness to worry. And for me, that's when I have to pray. It is easy for me to go too far the other way, stuffing any thought or emotion that bubbles up to the surface. Which again, is why prayer is so key. I have to intentionally give God what I am "choking" on, resettling in my mind Who is in control.

They can be as brief as, "Lord, take this worry from me." Or as simple as, "Lord, You know."

What a discipline this is! Sometimes as soon as I give it over, I take it back from Him. I think that is why God wants us to know His Word so well, to have it written on our hearts. So we can replace the chokehold of worry with the truth of His love and care for us.

"There you saw how the Lord your God carried you, as a father carries his son, all the way you walked until you reached this place." —Deuteronomy 1:31

Amen.

Cardiology 4-1-1

Overall, I would give our appointment yesterday an A-.

In school, I didn't like A minuses and I don't really like them today. But I am choosing to focus on the good!

The good news is that Luke's echo looked beautiful as usual, great function and no narrowing where the angioplasty was done in the aortic arch. His blood pressures on arm and leg were perfect and his EKG was normal.

The minus was his sats. Normally, he runs in the mid-80's, 84-86% but yesterday he was holding steady at 80-82%. We've been prepared that eventually Luke's oxygen saturations will trend down, but you also are never ready for that. This very well could be from the hit Luke's lungs took from his nasty chest cold a few weeks ago. Or it could be that he's growing and his heart is having a harder time perfusing oxygen to his fingertips. We do notice it takes a little longer for his fingers to pink back up after he's been exercising or out in the cold. Maybe he was cold yesterday? Maybe it was the machine? A lot of factors can contribute to a person's sat level, and thankfully Dr. Kim did not jump at the chance to see cause for concern. Especially after the echo.

He does want us to come back in a couple of months, though, to recheck his sats. If they are low 80's, or back up to mid-80's, we will just keep plugging along. If this truly is a trend downward, and his sat's are high 70's, then it will be time to schedule a catheterization and possibly starting talking Fontan. Blegh.

I have to remind myself constantly, though, that this decision to move forward with the Fontan is not about me. It's about giving Luke the best chance possible to live the fullest life possible. If it's time to help him out by taking more workload off his heart, then I want that for him. And we will get through open-heart surgery and a hospital stay with the strength of our faith and the support of our "team".

It feels good to have a specific plan in place. I also appreciate Dr. Kim's level-headedness about Luke's care. He didn't rush or push or jump. His approach is just to watch and let Luke let us know if this is a concern or not.

Luke had put on a couple of pounds since his last appointment (he hit 40! yay!) and grown an inch since September. For that reason, we can go up to 2.5 ml's on his Enalapril, which allows us to switch to pill form and thus fatten our wallets :) We'll see how pill-swallowing goes. Should be interesting.

We talked a bit about Luke's left diaphragm plication and how that may impact the Fontan and also about the new Fontan "Y" graft that is showing some good outcomes.

Luke did a stellar job and had his new I-Spy books to look at to help keep him occupied. I just love this boy so much. And apparently, even when he sasses me or stomps away in anger, he loves us too:

I found this on the back of one of his school worksheets.

Cardiology tomorrow

Luke's sitting next to me on our home computer, playing on disneyjunior.com. A friend from school just left a few minutes ago. As "normal" as this moment is, tomorrow morning he is missing school for a not-so-normal appointment.

It's that time again ... for all you faithful pray-ers to say another prayer and think another good thought for our boy's heart. Tomorrow will be our second appointment with Dr. Kim and we are anxious (trying hard to not to be too much so) to hear his thoughts on Luke's heart function.

Because Luke's cardiologist has taken the approach of putting off his Fontan until Luke's body lets us know it's time to schedule the surgery, each appointment feels like a huge one. Will we have "the talk"? As sad as we've been to lose our cardiologist, I am also seeing the positive of having another really smart man look at my son's heart. Two heads being better and all ...

My gut is that he won't push for surgery this summer, but the weight of that possibility is heavy. Luke has grown several inches this year, and I can tell his fingers don't pink up as quick as they used to. I'm hopeful his sats are still mid-80's and there is no talk of surgery, but only God knows.

Please pray for Luke and Dr. Kim. That as a team, we will make the best decision for Luke. If I had my way, I would keep him as far away from Children's as possible, forever and ever. But if Luke's body needs this surgery and it helps him feel even a little better, then I know that's what we need to do.

As Luke plays computer, his heart is worry-free about tomorrow. He has checked and double-checked with me that the appointment tomorrow involves no needles, so he is cool. I love that. It's kind of like that with God: As we, Luke's parents, bear the burden of his appointment tomorrow, God, our Father, longs to bear our burden for us, if we'll only let Him.

Thank you for your prayers!

Self-unaware

In my last blog, I posted this picture of Luke, taken while we were in the ER a couple weeks ago:

This is not the norm. Luke talks very little about his "superman scar" and shows it off even less. He likes to wear his swim shirt and unless his buddies initiate shirtless play (boys, right?), he likes his shirt on.

At the basketball end-of-season ice cream celebration, Coach David spotlighted each of the eight players. David is a very close friend of ours and has been a part of Luke's story from day one. When Luke made his first basket this season, you would be hard-pressed to find anyone in that gym more proud.

I asked David to send me the gist of his spotlight of Luke and I wanted to share. Partly because Luke's reaction was so surprising to us and partly because I want to record the kind of people we have encircling us.

"When I think about Big Luke the word that comes to mind is HEART. It wasn't hard to notice that whenever Luke took the court he always played the game and ESPECIALLY defense with a lot of heart! But for those you who don't know, Luke has a special heart. Luke was born with a heart that didn't quite work like most hearts. That heart needed a little help from doctors to make it nice and strong.  Luke has had two surgeries done on his heart just after he was born. I was there at the hospital when Luke had tubes hooked up to his body for weeks and was fighting to stay strong.  I remember praying for him a lot and he was super brave.  Luke's heart is a big reason why I decided to coach this team the last couple of years. When Luke exercises, his heart has to work much harder than most kids.  When he breathes, in order to get oxygen it would be like you or me sucking air in through a narrow straw while breathing hard.  So to see him running around on the court trying his hardest with that big smile was awesome! I'll never forget during our last two games of the year Luke made his first shots of the season! One in each game!  Those shots were money and it was incredible!  I wanted to make sure to get a chance to coach this incredible kid not knowing how long he'll be able to play. And he didn't just play.....he played AWESOME! So Luke....I want to congratulate you on fighting hard every time you played (he goes into some Kung Fu Panda moves because I said "fighting"), and being such a superstar and having heart for your team!!  I love you buddy!"

During the part about the surgeries, Luke pulls the collar of his shirt down to show off his scar.

Now, I know six year olds are not the most emotionally mature and maybe he reacted a little out of embarrassment at being spotlighted, but he had never initiated attention to his scar or heart defect before this week.

I've met a lot of heart kids — in person and in blogland — and I would place Luke on the far end of the spectrum of heart defect self-awareness. Or maybe I should say self-unawareness. Some heart kids talk freely and proudly of their heart, their scars and their surgeries. They have oxygen, or g-tubes, making their differences more noticeable at a glance.

Luke? Not so much. When asked a while ago by a playmate, "What is that on your chest?" He responded with, "Oh, just a scratch." Another answer he's given is, "That's just where my heart was fixed." It's very simple to him. He knows he has had heart surgeries as a baby. He knows he sees a heart doctor. He knows he takes medicine to keep his heart strong. But until recently, the dots have not connected to make him aware that his experience is radically different from most other kids.

In the bath the other night, Luke asked me if Laney had a "superman scar". I said no. Then he asked if I had one or if Dad had one. I said no, just him. "God made your heart unique and special." He was truly saddened by this. "I don't like that I'm the only one in the family with a superman scar." It was so interesting to me that he was just putting this all together! I guess Rog and I have done a better job than we even intended to make sure Luke never felt anything other than normal.

Because it was intentional on our part, to let him come to his own conclusions about his special heart. We haven't kept it a secret from him, but he in no way knows that his heart defect is serious and complicated and has long-term ripple effects. We took to heart Dr. Stefanelli's assertion that Luke will self-regulate in these early years. Sometimes it took everything in me (and I wasn't always successful) to let him go and not stop his activity. We have held the belief that until Luke needs to know, we don't want him to know he's different.

He may not have been the quickest on the court, but he had as much fun as anyone out there.

It feels like a big line to cross for us. We have never wanted Luke to use his heart defect as a manipulation tool. But we also don't want him feeling discouraged that he isn't as fast or strong as some of his friends. And of course, as the Fontan nears, we know we will need to navigate those conversations as well.

This decision of when and how much to talk about your child's condition is of course individual to each family and I by no means feel like we have all the answers. What I do know for sure is that I love Luke with my whole heart and want him to be all the stronger for what he's been through. I want his character strengthened and his heart to trust Jesus when he faces adversity and comes up against limits. I want him to know he was knit together by God, for a purpose, for such a time as this.

Lord, may it be so. And give us the wisdom and discernment we so desperately need.