Monday, May 21, 2012

Cardiology appointment: Good-byes and Good news

It is a strange phenomenon to leave a cardiology appointment teary-eyed, though you just heard your son's heart function is perfect. But that's what happened Friday. We got great news, but we had to say a hard goodbye to our beloved Dr. Stefanelli. Honolulu is greatly benefiting, I'll tell you that much.

We spent a long time with Dr. S. on Friday talking. About Luke, the Fontan, and the plan of care moving forward. First things first, Luke's heart checked out beautifully on echo. I believe the words Dr. S. used are "snappy" and "perfect" in relation to his left ventricular function (his only ventricle, or pumping chamber). Dr. S. continues to push the boundaries of the medical standard for the timing of the Fontan, but with great heart function, no tricuspid valve leakage, and sat's at 85%, he continues to champion waiting as long as possible for Luke's next surgery.

Of course we ask the question, "Is it possible that Luke may never need the Fontan?" He's not willing to go that far, believing that Luke's sat's will start to trend down at some point and his energy will lag, but that could be a couple of years away. We will just continue to wait and watch and pray. With a "one in a billion heart", we are at that place that continually grows our faith: Waiting.

We will transition our care to Dr. Kim, a partner of Dr. Stefanelli's. We have a brief history with him, as he was on call the day after Luke was born. He performed daily echo's on Luke for a few days until Dr. Stefanelli came back into town. Dr. Stefanelli has the utmost confidence in him and we all agree Luke will be in good hands.

Luke was such a trouper at this appointment. We talked with Dr. S. for so long in a fairly small room, and Luke did so good occupying himself. He also was a stud about the EKG stickers and was happy to watch Wild Kratts during the echo.

We love you to pieces, Jodi!

Readin' his BOB books during the exam.
Luke's coarctation of his aortic arch is looking good and we are hopefully at least a year away from having to balloon that again. Eventually, Luke will most likely have a permanent stent put in there.

Luke's surgeon at Seattle Children's is also moving, so we talked a bit about surgical options. If Luke were to need the Fontan right now or in the next year, we would most likely be encouraged to go to Stanford. However, all of that is so up in the air as we wait and see who Seattle recruits to replace Dr. Cohen.

We spent the drive home processing our time at the doctor's, but like always, life calls you to move forward. We had a t-ball game to get this boy to!

Thank you, everyone, for your thoughts and prayers for our little man. We feel carried by you.

Wednesday, May 16, 2012


I have to add to that last post. I can't forget to share what Rog, Luke and Laney got me for Mother's Day:

It is so easy to be joyful when the sun is shining, your almost-one-year-old and five-year-old are healthy and happy and you have a warm bed to sleep in every night. God continually challenges me, however, to choose joy when circumstances are other than sunny. Our family tries not to borrow trouble, but it is a reality that our son has a broken heart and that Friday's appointment could bring unwanted news. What will my response be? Will my joy and trust in the Lord falter? Or will my heart reflect Psalm 40:16? "But may all who seek you rejoice and be glad in you; may those who love your salvation always say, 'The LORD be exalted!'"

Give me strength, Lord, to exalt you in all situations.

And I will exalt you when you keep this large reminder from falling on our heads while we sleep.

Big weekend, big week

Mother's Day, a trip across the state, my half-brother's college graduation and a visit with the in-laws. And that was just the weekend! This week brings Laney's birthday (not possible), her party on Sunday, two t-ball games, and our last cardiologist appointment with Dr. Stefanelli.


We headed east after Luke's "Mother's Tea" program at his school Friday morning. After singing their hearts out, each preschooler got to say into the microphone why they love their mom. "I love my mom because she picks me up from school, she reads to me, and she takes me fun places."

I love you too, sweet boy.

The drive to Roger's parent's house is about five hours. I wasn't worried about Luke, since he is in heaven with his own headphones and DVD player.

I had no idea what to expect from Laney, but she was pretty unbelievable. She took two hour long naps and the rest of the time she just cuddled her blanket, watched brother, or snacked. Too bad once we got out of the car she was a wreck the next two days. Our best guess is that she was working on her one-year molars because she was a mess. She'd be fine playing and then just melt. I'm not sure if part of teething is tiredness, or if this was just blessing from God, but the girl slept great on our trip.

We got to play at Grandma and Grandpa's Friday night and Saturday and too soon we had to leave to head into town to meet up with my family, who were in town for my half-brother's college graduation.

Left to right: My brother-in-law Coleman, my sister Jenny (preggers with my I-can't-wait-to-meet-him nephew), my stepmom Cindy, Roger and Luke sitting on Spike, the graduate Willie, me, grumpy-pants in the stroller, and my half-sister Andee

We are so proud of you, Willie! I just wish we could have gotten a picture of Luke and Willie together, both in their caps and gowns.

We headed back over the pass after the graduation ceremony on Sunday, and again the kids were phenomenal in the car. Lots of movies and rounds of the alphabet game to pass the time. Even after a great trip, there is something so sweet about getting home. Laney, I think, was especially glad to be home. She is back to her old self again. Just in time for her big birthday this week.

This came in the mail yesterday from Auntie Jen. RIDICULOUS!

Her official party isn't until Sunday, but the party prep is happening!

Finally, in this week of bigness, please say a prayer for Luke's cardiology appointment. It's our last one with Dr. Stefanelli before he moves to Hawaii, and we are still uncertain with who we will see in his place. Prayers for discernment and peace as we transition to a new doctor would be greatly appreciated. Also, of course prayers for Luke's heart health, that everything would be stable and there would be no need for intervention right now. THANK YOU!

Monday, May 7, 2012


There's been some serious clicking in the Smith household recently.

At the park, give Mr. Luke a push and he can actually keep himself going on the swing by pumping his legs. He had been practicing the motion for a while, but just the other day that motion actually clicked to cause momentum!


It could very well be coincidence, but it's been two weeks since Laney's ear tube surgery and since then, she is pulling up to a stand on everything (it had just happened in her crib a couple of times) and has also begun cruising, holding on to our coffee table or couch. Our ENT did mention persistent fluid in the ears can cause equilibrium issues, which makes me wonder if that did affect Laney more than we realized. Whether that has anything to do with this explosion of motor skills or not, it is so exciting to see Laney's mind and body click.


Yes, pumping a swing is an important life skill, but even more so is his newfound ability to READ! Our little man is officially reading beginner books and sounding out the world around him. This progression has been amazing to watch and to see this click for him is a joy to me and Roger. There is rarely a day when he won't pull his box of books out and "read" to himself for 20 minutes or more. And now, he loves to pull out his BOB books or simple Dr. Seuss books and actually read them out loud, occasionally calling out, "What does this spell?" So, so hope he never loses his love of books.

I do believe this little graduate is ready for the big K!