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.

Not just one week of the year

I guess it is fitting that we celebrated Congenital Heart Defect Awareness Week (made official by Washington State Governor Jay Inslee!) with a drop-in to cardiology, two trips to urgent care and a long afternoon in the ER. After six solid days of coughing, three missed school days and nights of restless sleep, it was time to take him to the doctor. We had battled this cough over Christmas, and I had stopped by our cardiology office to have them listen to his lungs, so we were pretty sure this was something we could handle at home. Luke just coughs when he gets an upper respiratory virus. And coughs, and coughs. But Wednesday, I could just tell he was feeling even worse than he had. He had those sick eyes we moms all know too well.

Lots of movies and shows last week!

With his sats hovering around 72-75% at the peds office Wednesday afternoon, the doc ordered a chest x-ray just to make sure she wasn't missing something. Thankfully, the chest x-ray was clear, so we headed home (with a heart child, you live with the reality that anytime your child is sick, it is a very real possibility you could be admitted to the hospital) with a prescription for Prednisone in hand.

After two days on the steroid and no improvement in the cough, we were discouraged, but still not overly concerned. Until Friday, when Luke woke up crying out in pain in the middle of the night, sobbing because his ear hurt so much. We knew we had to go back to urgent care Saturday morning to get an antibiotic for his ear infection.

Waiting at urgent care for the results of his RSV test.

Well.

It wasn't quite that simple, which is so often the case with a heart child. The doc we saw (a good reminder to always see your child's pediatrician if at all possible!) didn't like Luke's elevated white blood cell count and fever cycle. Along with the duration of his cough, he felt very strongly we needed to go to our local ER. My gut was telling me he was overreacting, but at that point, when a doctor is strongly urging you in that direction, what do you do? You go!

Several hours and another chest x-ray later, we were sent home with ear drops and a prescription for Amoxicillin. I'm guessing a $1,500 bottle of Amoxicillin.

As frustrating as the day was, both Roger and I agreed we'd rather doctors err on the side of caution when it comes to our child. We'd rather spend an unnecessary afternoon in the ER than have something go terribly wrong at home.

Luke earned his Command Ship Chima lego after his hospital visit.

It's just been one of those weeks where the reality of Luke's heart condition has knocked me down a bit. My Facebook feed is full of CHD Awareness buttons, pictures of beautiful heart babies, and pleas for more funding for this invisible disease. I'm so glad there are so many passionate moms and dads out there working wholeheartedly to raise awareness of this terrible disease. The #1 most common birth defect.

How could congenital heart defects be the most common birth defect? In my experience, most people I tell are shocked by this statistic. I know heart defects were the farthest thing from my mind early in my pregnancy with Luke. I worried about cleft palate and Down Syndrome, but not a heart defect. August 19, 2006 set my husband and I on a path we never expected. A whole world was soon to open up to us; a world of feeding tubes, oxygen saturations, weight gain struggles, cardiac ICU's, echocardiograms, heart failure, medications and EKG's.

I remember meeting with Luke's heart surgeon before he was born at Seattle Children's Hospital. I don't remember everything we discussed but I vividly remember being stunned that my child may actually be blue. I was that unaware of what a heart defect could mean. I can't imagine what Dr. Cohen thought when I repeated, "You mean he might look blue?"

The reason so many people are in the dark about the prevalence of heart defects is that, often, blue-tinged fingertips and toes are the only clue something is wrong with the child. Even though 50% of children born with a heart defect will require an invasive heart surgery at some point in their life, their "zipper" is most often hidden beneath their clothes. A little child's head made bald by cancer is horrifying. A little child's chest sawed open is as horrifying. But CHD research is severely underfunded and talked about even less.

"In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD." —1in100.org

 Any chance I get I share Luke's story in the hopes that awareness brings innovation in the heartland.

I hold so much hope for these heart kiddo's. For goodness sakes, they are — right now — able to create beating heart tissue from your skin cells! But just this week, three heart babies I know of passed away. I think about how far we have to go to find an actual and true cure for congenital heart defects.

I have been asked countless times if Luke's heart will be "fixed" or "good to go" after his next surgery. It will hopefully and prayerfully be stronger, but it won't be cured. His heart will never be a "normal" heart.

As we keep the momentum going from all the awareness raised during Congenital Heart Defect Awareness Week, I wanted to add my list of ways you can help make sure kids like Luke get to live life to the fullest:

1) Donate blood: The American Red Cross website allows you to search by zip code for a blood drive near you.

2) Donate to a reputable CHD organization: All three of the below organizations specifically raise money and awareness for Congenital Heart Defects.

• Children's Heart Foundation
• Mended Little Hearts
• Adult Congenital Heart Association

3) Visit Build-a-Bear in the month of February: Build A Bear has created an opportunity for all of their guests to make a contribution to the Congenital Heart Foundation when they complete their purchase during the month of February. This is the fourth year of the partnership, and over $600,000 has been raised to support CHF.

4) Ask about your unborn baby's heart at your 20-week ultrasound: "The only thing worse than having a child with a heart defect is having a child with an undetected heart defect." We are so fortunate our sonographer didn't let us leave our appointment that day (even without being 100% sure something was wrong) without setting up an appointment for us with a pediatric cardiologist. Use this PDF to know what to ask your doctor.

Phew. That was a long update. I have had so many blog posts brewing. Hopefully this one will spark the writing muscle!

One and a what?

My girl is one and a HALF today. And long overdue for an update.

She is, in one word, a delight. In two words, she is a terrible teether.

On the delightful side, you can see from the video, she loves to sing. With intensity and purpose. And volume. And let's not leave out length. The girl also loves her some dancing. She's open to most music, but especially loves dancing to the Berenstein Bears theme song at night, on our bed, with her brother. Oh does she get excited. Even if she's nursing, she'll jump up when she hears the opening notes.

It would be hard to deny the delightfulness of Laney reading. This may be her favorite activity right now, sitting next to our big basket of books and "reading". She is a perfect mimic of her brother. The inflection, the page-turning, the enthusiasm, I tell you it's all delightful. I'm so thankful both of my kids love books.

On the not-so-delightful side of my Laney-bug is her resistance to diaper changes, cow's milk and her hair rinsed. Look out. It's such a small part of her personality, but the strong will is there, for sure. And it's magnified when she is teething. I don't recall even knowing when Luke had a new tooth break through, so this clinging/whining/hands-in-the-mouth/not-eating stuff is new for us. She has all 16 teeth now, so I'm hopeful we are done until her 2-year molars. Please?

We had her 18-month appointment today, and she her doc's most proportionate baby. Maybe in history! 50th percentile for weight (24 lbs), height (31.5") and head circumference. She's in size 4 diapers, size 5 shoes and size 18-24 month clothes. I will be so sad when she loses the chubby thighs and tummy. I think Luke will be too, since he is always telling her, "Laney! Your belly is so chubby!" Soon I'll have to talk to him about commenting on girls' figures :)

At her appointment today, she had a toe poke and three vaccines. Not one tear. I attribute this to having a brother four years her senior. She puts up a lot from him and is one tough cookie. I love how lately she's been able to really "play" with him. She would follow him to the moon. Luke is a bit obsessed with ninjas right now and has a collection of ninja weapons. Luke has some serious ninja moves, but Laney can hold her own with the nunchucks. Again, look out.

Laney is such my buddy these days. I am really treasuring having one-on-one time with her in the mornings after we drop Luke off at school. Sometimes we'll go to the Y, sometimes we'll run outside or hit Target, but a lot of times we'll get our Starbucks and just go home to play together. I keep thinking of next year, when Luke is in school full-day. We will have some serious mommy-daughter time then!

Speaking of the Y, Laney is doing fairly well in nursery-type settings. There are tears, but I've been told (at church too) that she stops almost immediately. With Luke's history and difficulty with separation anxiety, it is high priority for Roger and me to help Laney be comfortable in those types of settings.

Did someone mention delightful? Delightful is nursing my daughter in the morning and night. I never expected to still be nursing at 18 months. Everyone said she'll cue you when she's done and she just never did. And I've been okay with that. She's my baby and it's such nice snuggle time. It's a little tricky when she wants to nurse during the day, but that doesn't happen too often. Usually only when she's not feeling like herself.

Delightful is watching her language develop. The girl is talking so much! I'm not sure how many words, but she's even putting two and three together: "Yes Mom!" (usually followed by doing something I've just asked her NOT to do). "Bye Dad!", "I don't know" (all kind of smooshed together), and my personal favorite "Be by back" (Be right back). With this phrase, she'll go to another room or around the corner, just so she can come running "right back!" Another sweet one is "Bye-bye" when you lay her down in her crib at night. But wait, maybe my favorite is her "Thank you". I'm not even sure how to phonetically spell how she says it, but it's pretty amazing.

I didn't count them up, but for this girl, the delightfuls far outnumber the not-so-much's.

Happy 18 months sweetest girl.