Wednesday, November 30, 2011


Luke just left with Rog to head to his first Force basketball practice. I'm not ashamed to say I cried a little.

If you don't make one shot tonight, Luke, I couldn't be more proud of you.

Monday, November 28, 2011

Half a Year, Whole Lot of Great

Laney celebrated her half-year birthday on November 17. My baby is six months old and we could not love her more. After looking at her growth chart, her pediatrician commented with a smile, "You have one symmetrical baby." That is one way to describe our girl ... but there are so many others, too. In the spirit of descriptive words, here is Laney's six month update:

Laney-girl weighs 16 pounds, 12 ounces. She is 26 1/4 inches long and her head circumference is 17 inches. All three measurements in the 75th percentile! I have no idea how this is possible, but hopefully she'll get her Auntie, Uncle and Grandma's height and not her mom's!

Watch your food, people, this girl is quick when you have anything edible within arm's reach of her! She has not yet met a solid food she doesn't like and she kicks and wiggles whenever you are eating something and she's not. She would eat steak and potatoes if I let her. Thanksgiving was so fun, letting her eat some goodies off our plates. Nonna even let her try some of her homemade apple pie.

She's also quick to defend herself, getting lots of practice when brother's in her space. At her six month check-up, Dr. Husarik finally had to ask me to hold her arms because she kept blocking him when he was trying to look in her ears. "No question she has an older brother!" he quipped.

Laney has grown into such a content and happy baby. For a few weeks, she would let out a wail if a stranger approached her or if someone besides mom and dad were holding her. But no longer! She is much more open to new faces and letting others hold her. She is truly happy, and that makes me so happy. She is content on the floor, playing with her toys, she is content in her crib, watching her mobile and she is content in the Bjorn, seeing the sights. Her new place of contentment is her exer-saucer. Hours of fun! Okay, not hours. I promise I don't leave her in there that long.

With a brother four years older than her, she has to be. I've lost count of how many times a dinosaur has whacked her in the head.

We have seen HUGE improvements in Laney's sleep (thanks in large part to Dr. Weissbluth's Healthy Sleep Habits, Happy Child). Even though she is sleeping so much better (from 7pm to 6am last night!!!), she is still inconsistent in this area. She'll have a 9 or 10 hour night and then she'll have two nights where she's up twice again. We have almost completely cut out her 10pm awakening by letting her fuss that one out. If she does wake at that time now, it's only for a minute or two.

Her naps are inconsistent, too. Some days she'll take two 2-hour naps and some days she'll take two 1-hour naps and then a 45 minute nap in the late afternoon. She definitely naps best in her own bed in her own house. She'll cat nap if we're somewhere else, but that's all I can get out of her. Must be a homebody like her mama!

This girl can no longer nurse very well unless we're in a quiet room. She is too curious about the world. What happens if I pull this? What does this taste like? What was that giant crash coming from where Luke is?

We finally had to put Laney's bumper up on her crib. She has learned how to scoot backwards using her heels and was continually crying out when she'd bump her head on the crib rails. Sweet girl kicks and moves all. day. long.

I think this is the most fitting word of all.

Wednesday, November 16, 2011

Luke's Cardio Appointment: Waiting Explained

Leading up to this cardiology appointment, I had been wrestling with thoughts about Luke's Fontan. As much as I dread putting Luke through another open heart surgery, and as much as I fear the possible complications, I am his Mom and I want the best for him. If the Fontan circulation would help him breathe a little easier or run a little longer, then I want that for him.

I have followed other heart families through their child's Fontan and the difference before and after was drastic. Dr. Stefanelli does not feel like this would be true in Luke's case. With Luke's heart function so good and his sat's relatively high, he does not think Luke would be a totally different kid after the Fontan. He won't go so far as to say Luke will never have the Fontan done, but he is still not ready to put a timeline on this final surgery. He doesn't agree with the school of thinking that once you hit a certain weight you move forward without any other indication. And his perspective is that there is no other indication right now that Luke needs the Fontan. In a year from now could there be need? Of course, but I get the sense that we could still be putting this surgery off a year down the road.

Dr. S. explained the waiting to me in a new way yesterday: As soon as you do the Fontan (and that is to say that it is even successful in the first place and a take-down is not needed), the clock starts. The clock isn't ticking down to heart failure as much as it is to liver failure. As more and more of these single ventricle kids grow up, docs are realizing that the liver does not tolerate the Fontan circulation forever.

So we wait. The risk is too high for how well Luke's heart is working with the Glenn circulation. Although Luke doesn't have any semblance of a right ventricle pump, his heart almost fits into the category of a one and a half ventricle. His left is a big ol' strong pump and for that we are so very thankful.

One new development seen on the echo that we'll be keeping an eye on is a collateral vessel growing off his aorta. It had grown a bit since last May and may start causing Luke's sat's to go up. If it does, Dr. Stefanelli will coil it off in the cath lab at some point. But for now it's just a watch and see. Luke was satting yesterday between 84 and 86%. I really hate those sat machines. It took about three minutes to get an accurate read, and for those few minutes it was reading 65%. Do they know what that does to a mama's heart?!

The coarctation site was still wide open from the angioplasty a year and a half ago, which was great news, and his EKG and blood pressure (100/56) were fantastic.

The actual EKG is absolutely painless, but for most heart kids, taking the stickers off afterwards is the worst part of the appointment. We have never had a tearless EKG until yesterday. I watched Luke just shut his eyes and grit it out, telling the nurse, "Just do it! Just do it!" Stud.

Loooong echo, but my big man did great, watching Peppa Pig and sucking suckers.
We love you, Northwest Children's Heart Care, but we hope to not see you for another six months!

Monday, November 14, 2011

It's That Time Again

The last time we had Luke's heart checked Laney was happily swimming in my tummy. Now she is almost six months old and it is time to have Luke's beautiful ticker looked at again. We would, as always, love prayer for a good report from Dr. Stefanelli. As we get closer to the Fontan, each appointment feels weightier than the last. Please pray for wisdom for Dr. Stefanelli as he plans for this next surgery. And a prayer for Luke's cooperation is always welcome! These are long appointments for a little guy.

Laney-bug will spend some quality time with Nonna while we're at the appointment, but she could use a prayer or two as well. She has such a nasty cold. We took her in on Saturday to make sure her ears weren't infected (they weren't) but she is still so congested, making it hard for her to sleep. Thankfully she's still eating well (I'm telling you, there isn't much that stands in the way of this girl and her food!), but the girl is producing some serious snot. Poor thing.

Luke also had this cold and cough, but just started Azithromycin and is definitely on the mend. Can I just say out loud that I hate cold and flu season?

I will be sure to post after our appointment tomorrow morning. Thank you all!

Please note that Luke is wearing his Christmas pajama pants and his shark slippers. Oh, the kid ...

Friday, November 4, 2011

Retraining my brain?

I just read an incredible blog post. Incredible in the sense that in 783 words, it opened to me a perspective I had never once considered (and I have to admit I do a lot of considering when it comes to Luke's heart).

Amy Verstappen is the President and CEO of the Adult Congenital Heart Association and a heart warrior herself. She writes, "The joke in my family is that I never met a bureau I did not want to move. Although none of us have an athletic bone in our bodies, of my five sisters I am by far the most physically active."

She goes on to say that she was lucky to have both parents and a pediatric cardiologist that never let her in on a secret: Her heart beat too slow in relation to her activity, a condition known as "chronotropic insufficiency". So she would run, jump, twirl and sweat until she felt like she would faint or throw up, all the while, her heart rate never exceeded 90 beats per minute. What she thought was "normal" was actually a side effect of her overworked heart.

As Amy entered into adulthood, she wrestled with the question, "Do I wish I had been told sooner?" As with many questions, the answer was yes and no. But ultimately, she is thankful she didn't know she had limitations, especially as a child and young teen. "If someone had told me early on that I had 'abnormal exercise response,' and that I 'couldn't' run due to my heart rate, I never would have tried."

And today, she baffles cardiologists. Put her on a treadmill for an exercise test, and her results are within the normal limits. Very few complex CHD patients can say this.

Is it possible that these kids with broken hearts experience exercise intolerance because they believe they are exercise intolerant? Could it be that pushing a broken heart actually makes it stronger? Amy would argue yes: "My stamina today may be a direct legacy of a childhood spent pushing to my limit."

I write this knowing full well this is a fine line to walk, and one of those difficult positions parents of heart kids find themselves in.

Luke's pediatric cardiologist has time and again told us to let Luke limit himself, that kids like him under 6 or 7 will really truly self-limit. And time and again we've seen Luke do this. But still, I catch myself (time and again!) wanting to limit him. I'll want to offer him a piggyback instead of making him walk, or I'll want to interrupt his activity to offer him water. I think these are okay in themselves, but what it boils down to is that I don't fully trust Luke to listen to his body. I worry about him when he plays hard and is out of breath and my natural instinct is to take control of his activity level.

Roger and I were faced with our first sports-related decision this summer. Luke was invited to play on a 4- and 5-year old basketball team this fall, coached by the dad of Luke's best friend, Marcus. My honest reaction was not to let him. I didn't want to see him struggle, or not be able to keep up with the other kids. My reaction, honestly, was about me. My husband's viewpoint, thankfully, was more Luke-centered. He reminded me that Luke is currently under no activity restrictions and this may not always be the case. We both value the lessons team sports can teach, and this may be the best time for Luke to participate, when sports aren't so competitive and aerobically strenuous (I mean, how much running and jumping are 4- and 5-year olds really going to do on the basketball court?!)

So we are going to go for it. Coach David is one of our best friends and we trust him implicitly to pay attention to Luke. Our goals for him this "season" are not for him to be the top scorer or the fastest down the court. Our goals are simply this: For Luke to be a coachable kid, to have a blast with his team and to capture some awesome video to post on the blog ;-) As Luke is learning about dribbling and passing, I will learn more about trusting my son to know what his body needs.

And Amy? Armed with a pacemaker, she is as active as ever, thankful her family let her set her own limits. This is a gift I want to give my son, as well.

Go, baby, go!