Sunday, May 30, 2010

The waiting game

Waiting is hard and I'm not very good at it. Waiting in line, waiting through commercials on your favorite show, waiting in hospital waiting rooms, and most relevant to me right now, waiting to see how God will work out a situation. It's all hard (although I'll take the silly commercials over the waiting room any day of the week!). A dear friend sent me a John Waller song the other day that held so much weight for me it was painful. Painful because I realize that in waiting periods I tend to do exactly the opposite of what God would want. I control, I overthink, I stress.

What would it look like if instead I served, worshiped and moved forward in confidence? What if I didn't consult my fears or the nasty "what ifs" that like to creep in my mind?

This waiting thing is nothing new to God's people:

God called Jesus to 30 years of patient preparation before he heard the go-ahead to begin his ministry in Israel.

In Psalms alone, there are 11 references to "waiting on the Lord."

For years and years and years (100 to be exact), Abraham waited for a son to carry on his promised family line.

It becomes clear that waiting periods are powerful tools in God's toolbox — tools used to shape us and change us to look more like Him, to chip away the self so God is more evident. It is so easy in these waiting periods to start to doubt God's goodness and His power to work out a difficult situation. When I'm honest, that's the first place my mind goes. And when my mind goes there, it naturally follows that I then try and control the situation in my strength (not recommended!). I just listened to a Chip Ingrim CD series where he dives into eight attributes of God. One of God's attributes, or intrinsic characteristics is His goodness. God not only exhibits goodness, He is goodness. And if this is true, then it changes how we think and feel while we wait. Instead of feeling paralyzed by the unknown, we can walk in the confidence that God is working even if we can't see past today. Instead of feeling like waiting is a punishment, we can cling to the promise that His ways are higher than our ways; cling ever so tightly to the promise that He works all things for the good of those who love Him.

I don't know how long our family will be in this waiting period. I'd love for it to end soon, but it may not. So I'll wait and with God's help, let Him transform my impatience and fear into a deeper faith. And when fear rises up and impatience takes my eyes off of the Lord (because I'm human), I will wait for the truth that I am forgiven and loved to settle over me once again.

Friday, May 28, 2010

The Big 3-0

And I'm not talking about my age. Turning 30 is old news for me as I'm facing down 32 in the not-too-distant future. Nope, someone else in the Smith household hit a 3-0 milestone today ...

30 pounds feels like a big victory today. 30 pounds may come and go on other kids, but for our mister, this is another one of those "thank-you-Lord-for-your-faithfulness" moments. When Luke hovered under 7 pounds for so many weeks before and after his first surgery, we never thought we'd see the day when Luke's dietician would declare him her "poster boy" for steady growth. His growth chart is almost funny. You couldn't plot it more perfect if you tried. His curve is steady and thankfully, upward. He continues to be in the 15% for weight and 20% for height. He stood tall today at 37 1/4", and we stand proud to be Luke's mom and dad, privileged to get to watch him overcome obstacles that often go hand-in-hand with a congenital heart defect.

Monday, May 24, 2010

Cath News

Luke's angioplasty (the technique of mechanically widening a narrowed or obstructed blood vessel) has been scheduled. We will wake Luke bright and early the morning of June 9. Thankfully, we're first case of the day and extra-thankfully, Luke's favorite meal of the day is far from breakfast ("Can I just have chocolate-covered raisins?"). That is all good news on the staving off hunger pangs front.

As Rog and I talked about this upcoming procedure, there was that piece of us, of course, that hates the thought of sending your child into an uncomfortable and scary situation. But, we also couldn't help reflecting on the past almost-three years at home after Luke's second open-heart surgery. Luke has been incredibly healthy and strong and hasn't had one hospital admittance in that time. Not one. So as much as we don't want to send Luke to the cath lab, it didn't take long for us to remember how often God has showed up in this journey with Luke. And we know He will again. He will be guiding Dr. Stefanelli's hands. He will be in the touch of a nurse in the recovery room. He will wait with us in the waiting room.

That's just what He does.

Thursday, May 13, 2010

Marathon cardiology appointment

Phew. I've run a marathon before and I'm not sure if I was more tired after that or today's appointment!

Overall, Luke's heart is doing really well. I was surprised to see his sat's unchanged at 85-87%. His blood pressure was good, heart function excellent (we love that word!), Glenn and DKS sites beautiful, chest x-ray clean and clear, and valves still just trivially leaky.

However, we are going to the cath lab in June. Luke, even in my tummy, has always had a larger pulmonary artery than aorta. This is why his lungs were flooded with too much blood flow in his first few weeks of life and why he went in to such critical heart failure before his PA banding at 5 weeks old. This is also why they connected the PA and the aorta through the DKS. Since Luke didn't have adequate blood flow out of the aorta early in life, his descending aorta has always been a little narrowed, or "turbulent". This is extremely mild, but in our December appointment, Dr. Stefanelli did mention it and thought this would be something we could deal with in his pre-Fontan cath in the future. Today, however, he could see that the narrowing had worsened in the past five months, enough to where he'd like to balloon it sooner than later.

This narrowing, or coarctation, is still considered very mild, and in another child with a four-chambered heart, he would wait another year of two and take another look. But Luke doesn't have the luxury of that second ventricle, and we want to protect and preserve it's function and health as much as we can. Pumping against an obstruction, however small, still puts added stress on that main pump. Which we definitely don't want!

I am thankful Dr. S. is proactive, and thorough, and thankful that this is very treatable in the cath lab. I am thankful this is not an emergency situation and that in every other way, Luke's heart is so strong.

I'll post details tomorrow, but Luke handled the 3+ hour appointment like a champ. He was losing it by the end, but he hung in there. And now, as his special reward, Luke gets to "fall asleep with Mama". And he won't let you forget that Daddy's taking him to buy a new train on Saturday.

Thank you, everyone, for your support. We are blessed by it.

Wednesday, May 12, 2010

Sharing the load

I have talked with enough heart parents to know I can make this blanket statement: There is NOTHING that means more to families with these special kiddo's than the positive thoughts thought and the prayers prayed through the ups and downs of this journey. Like the lame man's friends who carried him for miles, who let nothing — crowds or a tiled roof — stop them from their purpose of bringing this man to Jesus, our friends and family make this road so much more travel-friendly.

All that to say that Roger and I would love your thoughts and prayers for Luke's cardiology appointment tomorrow morning. It has been five months since we have seen what his little ticker is doing and I am a bit more nervous than usual. We'll see tomorrow if it's mother's instinct or mother's paranoia, but I just feel like something has changed these past months. Luke is still his happy little firecracker self, just a slightly more winded version. Maybe he's outgrown his Enalapril dose? Maybe it's just a matter of Luke's heart having to work harder as he grows? Maybe he really does need his diuretic? It will sure be nice to get some information tomorrow.

And, your prayers for Luke's cooperation at " Dr. Chris' " are ALWAYS appreciated!

He is getting pretty savvy about doctor appointments and what that all means for him. Yesterday, when we went up to Children's, he had 101 questions about what Maddie was doing, why couldn't we see her, etc. I told him, "We can't see Maddie because she's back with all the nice doctors and they are taking care of her and her heart." Luke accepted my answer, then followed with, "Oh, Maddie's getting her flu shot?" My son has been through two open heart surgeries and his biggest concern is with flu shots! I love it.

Thank you everyone!

*** This picture was added just cuz it's cute ***

Tuesday, May 11, 2010

McDreamy Meets McCohen

This picture is just so cool!

Heart Center co-director and cardiothoracic surgeon Dr. Gordon Cohen (Luke's heart surgeon!) shows Patrick Dempsey around the Cardiac Intensive Care Unit (CICU). Children's is one of only a few centers nationwide to have a dedicated ICU for cardiac patients.

Patrick Dempsey was just in the Pacific Northwest yesterday, helping raise money for Seattle Children's Heart Center. If you paid $1,000 you got to ride in a race car with McDreamy. All of the proceeds went directly to Children's Heart Center.

Thank you, Mr. Dempsey ... you have no idea how much your support of this incredible center means to us!

I got to see this center in action again today as I went up to visit with Maddie's mom and dad as she underwent her 4th heart cath. We are praying for you, Maddie!