Day 2

The number of answered prayers we've witnessed the last day and a half is mind-boggling. And those prayers are sustaining us on day two, when our sweet boy has had to battle. My heart aches for him. The cry of my heart is that God is working to deepen his faith, to make good from this battle. I know He will. Prayer is not just words when you're in the midst of hard. It is everything.
 
Luke is currently sitting propped up in a chair, which was a big, scary hurdle for him. He is not happily sitting, but he's sitting. In the next hour they are planning to remove his chest tube, which is going to piss him off even more. Even though he knows it is one big step closer to the floor and then home, he is still scared. With good reason. Please continue to pray for his spirit. He is having a sad and mad day. With good reason.

The progress Luke is making is astonishing, especially because both of Luke's other open heart surgeries have been so riddled with complications and setbacks and a slow, slow pace. The nurses keep telling us that a nine-year-old body is so much more able to tolerate the anatomical and physiological changes post-heart surgery. Luke is completely off his IV tree meds, has had his arterial line removed, catheter taken out, and next his chest tube and pacer wires should come out today. The speed of his progress has us on our knees in thanksgiving.

The nurses also keep telling us that days 2 and 3 post-op are the most acute, so we are praying that after tomorrow the Luke spirit we've loved for nine years will start to shine through again. I can't wait to show him text after text and message after message of love and support for him. He is one loved little boy. Thank you.
 
The word on the street is that we may move out of the ICU and to the cardiac surgical floor tonight. That is a huge step toward home, but at the same time it's hard to leave the cocoon of the ICU. Please pray for a smooth transition and another stable night.

Pre-Op

We survived a long day at the hospital yesterday. Longer hospital days are coming soon, however, so leaving yesterday afternoon for home was like an unspoken reprieve. Our top two priorites the next 8 days are, 1) enjoy our time at home thoroughly and intentionally, and 2) keep this boy healthy. The cardiac nurse practitioner in not so many words told us it would be crazy to send Luke to school next week. She also told Luke studies are finding that iPad use during procedures dramatically decreases the child's perception of pain and discomfort.

She is his new best friend.

And maybe insurance will cover a new iPad for Luke. We have studies, Regence!

Our day consisted of vitals, EKG, a chest X-ray, a lengthy meeting with the surgeon, a blood draw, a subsequent lengthy meeting with the cardiac nurse practitioner, a break for lunch, a visit to the pharmacy to pick up an antibiotic nose gel for the week before surgery, then finally, a consult with anesthesia.

Like we told the surgeon, this heart surgery rodeo is very, very different with a nine year old. Some good differences, some bad. I love that each person we came in contact with yesterday made Luke a part of the process, spoke directly to him, and let him ask any questions he had (not surprising to anyone who knows him that he had a few). That is most definitely a good difference. We have told him repeatedly leading up to this surgery that every nurse and doctor that walks into his room has two priorities: keep Luke as comfortable as possible, and get him home as quickly as possible. I think his interaction with the staff yesterday confirmed that for Luke. I think he trusts that these doctors and nurses have his best in mind. Even when they are asking him to do something really, really hard.

Another lesson relearned yesterday: We can laugh and be silly and those two things make everything seem a little better. Good attitudes really do go a long way.

 

Here is a bit more information from our surgical consult. And for all you visual learners, these are for you:

This is not an accurate graphic of Luke's heart, but it's a good visual of the DKS procedure that was done as part of his second open-heart surgery, and a good way to visualize where the stenosis is happening. The surgeon will incise the underside of the aorta, widen it, and place a cadaver homograft patch the length of the incision. There is a tiny chance Luke would have enough pericardial tissue to use for the patch, but unlikely. The only downside to the cadaver homograft is that it can increase Luke's antibodies, which would only be an issue if he needed a heart transplant down the road. 

Here is what the repair basically looks like:

Dr. Chen told us it will be about a four hour procedure from start to finish. He will most likely come to the Cardiac ICU intubated but could be extubated within a couple of hours. The average ICU stay is two days and then he'll move to the surgical floor for the rest of his recovery.

I truly enjoyed meeting Dr. Chen. It's rare to meet a heart surgeon who is not only good, but also personable and willing to connect. We spent at least 45 minutes talking after Roger and Luke left the room (also not surprising to anyone who knows me that I had a few questions myself. See note above about Luke's prolific question-asking ability). We are in good hands.

One thing I didn't know (and that we can be specifically praying against) is the high incidence of vocal cord nerve damage (about 15%) that can occur during aorta reconstruction. The laryngeal nerve runs right behind and underneath the aortic arch:

So, we are set for November 28. We have officially begun Mission: Stay Healthy. I may or may not have crossed the line from oil lady to crazy oil lady.

I'm okay with that.

We feel surrounded by so much love and support and we could not be more thankful to walk through this with all of you.

 

Not why I wanted to dust off the ol' blog

Many, many times the last two years I've put it on my want-to-do list to post an update on heart and life happenings. And then life kept happening. We continued to see Luke's cardiologist every six months since his last catheterization in 2013, continued to research, seek opinions across the country and then continued living.

Luke has been the dictionary definition of "stable" in this season of blog silence. Stable heart function, stable oxygen saturations, stable med doses. All that stability, though we never took it for granted, definitely shook our knees and hearts with the news that Luke needs open-heart surgery. The shocker was this is not the surgery we have known he'll need since I was pregnant with him.

I'll back up a little to say our second cardiologist, Dr. Kim, moved to Chicago this past summer. We were again left to decide who would care for Luke's heart. In an honest conversation with Dr. Kim, we decided to leave our beloved Tacoma clinic and move Luke's care officially up to Seattle Children's. With Luke being nine and still pre-Fontan — way out on a limb in other words — we felt right about moving his case up to a bigger center.

We met Dr. Rubio in June of this year and felt within the first minutes of meeting him and his nurse that this would be a good fit for our family. A lot was his personality, attention to detail, attention to Luke, and willingness to listen, but we couldn't ignore the fact that he trained at Children's Hospital of Atlanta, with Dr. McConnell, the same doctor I have personally spoken to three times on the phone as we've weighed the risks of delaying the Fontan. He is a leading proponent in this country to let the patient dictate when the Fontan is necessary, not hospital protocol.

At that first appointment with Dr. Rubio, we had talked about a spring catheterization, as that would have been three years since his last one. In what Roger and I figured was simply a fiscal reason, we requested his cath be bumped up to this fall. Who knew God could work even in matters of insurance? ;)

So, that brings us to October 13, and Dr. Rubio's words: "I really wish Luke hadn't surprised me today." And then, "He needs surgery sooner rather than later."

So what is his heart requiring on November 28? The root of his aorta, where, during his second open heart surgery, was connected to his pulmonary aorta, has developed scarring. This scarring down has created a narrowing, or stenosis, and his pressure gradient across the stenosis is 22 points. If a heart healthy person had that pressure gradient, they would be sent home and monitored. Surgery isn't even on the table until that gradient typically hits 50 points or more. But, of course, Luke's heart is far from normal. Even mild stenosis working against a single ventricle can have detrimental effects. It was seen through his catheterization a few weeks ago that the filling pressure of his left (and only) ventricle has jumped from 8 back in 2014 to now 16 mmHg. That means his heart is not relaxing as well as it was and there is some diastolic dysfunction happening.

The deeper you walk into the medical world, the more you learn that medicine does not equal exact science. Could we do the Fontan at the same time as the aorta reconstruction? Yes. Would some doctors argue this is what should be done? Yes. But after much (and I mean much) weighing, wrestling, and discussion between our old and new cardiologist, between us and both cardiologists, and among the 30 doctors who conferenced on his case, it was agreed that Luke does not warrant the Fontan at this time and to keep the two surgeries separate is the way to go. And here is why:

1. Luke's filling pressure and pulmonary pressures are currently elevated. This is most likely due to the stenosis, but whatever the reason, these numbers now put him in a high-risk Fontan category.
2. The theory and hope (and prayer!) is that reconstruction of the aorta will cause these numbers to go back to Luke's baseline within a year, making the Fontan recovery less risky. There is direct correlation between high pulmonary pressures and length of ICU stay, hospital stay, chest tube drainage, and even Fontan failure.
3. Most of all, it just feels incredibly unsettling to send your child into a surgery when he is a sub-optimal candidate for that surgery. We would rather have two open heart surgeries to face that are less risky than one that is high risk.

That leads us to today. We are just about two weeks away from Luke's third open-heart surgery. Luke has handled the news in kind of a mind-boggling way. How a boy of nine can absorb the news, process it, ask questions, begin to find some good in it (new iPad! Dad and Mom waiting on you hand and foot!) and continue to live life without a whole lot of anxiety, is just crazy to me. But, I kinda know his response has less to do with Luke and more to do with God. Our God who tells me, "I Am." We are clinging fast to this promise. There's a lot we don't know about this surgery and recovery, but this we know. He Is.

It's a big zoo

Two weeks after a pretty hefty heart procedure, Luke hopped on a bus with the rest of the first graders and headed to Pt. Defiance Zoo for his end-of-the-year field trip.

I knew about this field trip from the beginning of school and off and on throughout the year, I caught myself wondering, "How is this going to work? Can he walk the entire zoo? What if he can't?" In all honesty, I didn't want to be a volunteer for this trip because my experience as a parent of a heart kid can be very different from others'. It's not as easy for me to just tag along, enjoying the moment. I get caught up in thinking and analyzing and overthinking and then analyzing from a different angle.

And all of that did happen, but you know what? There were also a lot of moments I did enjoy. A lot of moments where Luke was just one of the kids and except for the trek up about fifty steps back to the bus at the end of the trip, Luke made it. He walked the entire zoo with his buddies. I could tell at one point, during the long walk to the polar bears, he was petering out a little bit. I offered him a piggy back and he looked at me like I was nuts. "None of my other friends are getting carried!" Okay then.

So when he saw all those steps back up to the bus, he looked at me and said, "Okay. I'll have that piggy back now." Knows his limits, that one. The great thing was, no one even really noticed the piggy back and definitely no one said anything. It made my mama heart feel even better when I heard a couple of the girls behind us say, "When I get home I am going to do NOTHING but sit on my couch! My legs are tiiired!"

Part of this crazy decision making process to determine when Luke's next surgery should be is a continual check-in of the question, "How is Luke's quality of life? How much does his three chambered heart impair him?"

On a day like this:

Can you find Luke?

We can rest assured that this kid is living life. And in the areas where his one ventricle doesn't allow him as much stamina as his friends, we have seen over and over his capability to adapt and compensate really, really well.

All of Luke's data, from his recent cath and MRI, his latest echo, clinical notes and surgical notes, has all been sent over to CHOP by our cardiologist. I am anxiously waiting to hear their thoughts on our boy. I can't imagine anything they say or see will cause us to move forward with the Fontan this summer, but I guess one thing you learn in this journey is that the unexpected should be expected.

While we wait, we will enjoy two and half months of SUMMER. School let out last Thursday and we have days of swimming at the lake, hanging out at daddy's camp, S'mores, neighborhood water fights and theater camp to look forward to.

I was definitely the sad one to see school end. I realize how ridiculously spoiled I was this year to have such a dear family friend teach Luke. It was a year where I never once had to worry about how well Luke was being cared for. And he knew it, too. He blossomed this year, as a student and as a leader in the classroom. The foundation Tam laid for him, a foundation of confidence, is priceless to this mama. He loves school and loves being at Dad's school. Best decision we ever made.

Second grade, here he comes!

Cath results

It's a day like Tuesday, a day where prayer was so specifically answered, that cements for me this: The God of the Bible is a God that cares about the details of my life.

... He keeps a record of my tears {Psalm 56:6}.

... He numbers every hair on my head {Luke 12:7}

... He goes before me and he follows me {Psalm 139:5}

I know I should just jump right to the details of the cath, but I couldn't not share my heart too. God was good to us on Tuesday. He is good today and He is still good if Tuesday's news would have been different.

Tuesday will be a day Roger and I can point each other to — and hopefully point others to — when doubts and fears try to steal what we know to be true. It's so simple, but it changes everything: God cares!

We have spent the last several months praying that God would be clear as we move through these medical tests with Luke ... that HE would help us make good decisions and that HE would direct our paths.

The results of Tuesday's catheterization is one more piece confirming our peace to not move forward with Luke's next open-heart surgery right now.

Ready for some answered prayer?

• Luke's cold was completely gone by Monday.
• There was so little anxiety (for Luke I should clarify) leading up to the big day. He actually said on Sunday, "I wish it were Monday because then I would be closer to my cath." Granted, his logic included his post-cath pet, but still. What a huge blessing to this mama's heart.
• Luke was safe and protected in the cath lab. Anesthesia went beautifully with the amazing Dr. Lord and Dr. Belotti got easy access through the femoral artery and jugular vein.
• The numbers were AMAZING! His Glenn pressures were 11-12 which makes him an excellent candidate for the Fontan when we decide to move forward. His filling pressure was beautiful, the squeeze and relax of his heart measured healthy. His pulmonary arteries are a nice, big size and aortic arch gradient was 10, meaning no need to balloon or stent Luke's coarctation.
• Dr. Belotti did find a pretty big collateral vessel coming off his aorta and twisting and turning a while until dumping back into his pulmonary arteries (basically a totally useless circuit). He placed two coils in the vessel, which blocks all blood flow. This went well and his late afternoon chest x-ray showed the placement to be just where Dr. B. expected.
•  NO OTHER SIGNIFICANT COLLATERALS. If Luke had been developing AVMs (arteriovenous malformations), this would most likely move us forward to the Fontan. This is actually pretty astounding and unexpected that Luke has not developed these. He had a few tiny spidery collaterals coming off his aorta, but nothing needing intervention.
• So, his recovery. A lot of prayer was said for these four to six hours post-cath. I had one friend text me that she was praying that Luke would come out of anesthesia completely differently than he ever had. It was so clearly God because our experience on Tuesday was so radically different. For the first time ever, Luke slept for two hours after his procedure. He slept through that cranky, irrational, agitated stage. He was able to nod or shake his head and take a sip of apple juice, but then he would go right back to a deep sleep. About two hours into his recovery, he started opening his eyes and asking for apple juice. No thrashing, no crying, no us having to hold his legs down to protect his groin site. It's been a few days and I am still a little stunned with how calm he was. Luke's first grade teacher (and our dear, dear friend) came by to bring us snacks and treats and Luke two new DVDs since we planned on staying the night. He loved having her there, talking about school friends and reading group and the upcoming Flag Day concert (BIG deal around these parts ... Luke is the Bald Eagle in the play). Before we knew it, he was able to raise his bed a little more and he ordered a lunch of chicken nuggets. He played a little on the iPad and we laughed through some Mad Libs.
• After Dr. Belotti saw his chest X-ray, he told us he was comfortable letting us go home if we were. I'm pretty sure our anesthesiologist championed this idea for us. This guy is awesome. He even called later that night to check on Luke and to tell us again that he was proud of us for seeking second opinions in Luke's case. So after a second dose of IV antibiotics and the removal of all the leads, wound tape, and IV, we were on our way home by 6pm! Obviously, we would have survived spending one night in the hospital, but to not have to was a huge gift. I'll take my bed any day.

It's Sunday morning now and Luke says he's 98% back to normal :) I'd say. He played outside with the neighbor kids from noon until bedtime last night, coming in only for pizza. He's back to school and except for a little post-cath heartburn, his recovery was as smooth as can be.

We are beyond thankful. Thank you for praying for us, for checking in on us, for your texts and well-wishes. Beyond thankful.

MRI ... check; stress test ... canceled; catheterization ... SOON

We were supposed to have Luke's exercise test on Monday but he decided to not only get a cold a week before (which would totally skew the results since being sick impacts his exercise tolerance), but also to start throwing up Saturday night. I'm okay with putting that test on hold. We have his MRI results and after his catheterization on May 27, we can send all of that information across the country to the Children's Hospital of Philadelphia. We are anxious to hear what they have to say.

This has been such an interesting process the past few months, really diving in and figuring out if continuing to delay Luke's Fontan is the right thing to do.What's become clear is that the answer, depending on who you talk to, is not at all clear. That said, I do feel like each baby step we've taken in this process has confirmed that for Luke, waiting is where we're supposed to be. And we definitely feel peaceful about taking a summer 2014 Fontan off the table.

I'll back up a little to a little website called Facebook. I'll be the first to say our Facebook culture has it's flaws, but one thing it does really well is connect a group of people (in my case, heart moms) who would be much less powerful on their own. There is great power in sharing knowledge, sharing tears (happy and sad), and building on each other's passion. I don't know all the specifics, but after one family's local hospital refused to operate on a little boy with Hypoplastic Left Heart Syndrome, and after the family's insurance refused to pay for treatment at a hospital that WOULD attempt an operation, this family didn't give up. The mom turned to social media for help and within days, Medicaid approved a life flight to Boston Children's Hospital and the little boy now has a chance to live. That is powerful.

My Facebook story isn't quite as dramatic, but for my family, still profound. It was through a Facebook connection that I got to talk on the phone with Dr. McConnell, from the Sibley Heart Center in Atlanta. Like Dr. Stefanelli, he feels like delaying the Fontan — for the right cases — is the right path. He believes that every year he can buy these kids is a year closer to a better solution. This is a hotly debated topic among pediatric cardiologists and I don't want this post to be about one position being right and the other wrong, but Dr. McConnell's rationale sits well with me, for Luke. We are talking a major (MAJOR!) open-heart surgery for a young child. We are talking about a new physiology, while certainly beneficial in some ways, also starts a ticking clock on the health of that child's liver. Not to mention other potential nasty conditions that only happen with the new Fontan physiology. When you hold those factors in one hand and see Luke running off to recess with his first grade buddies in the other, waiting just makes sense for our family.

But here's where we want to be smart. We don't want to delay this third stage surgery just because WE want to delay this third stage surgery. We want to be smart and do our due diligence in this process.

Luke, happy as a little clam with the help of a little Versed pre-MRI.

Which is where all this testing comes in. Luke had his cardiac MRI back in late March and we got some good information from that, confirming Luke's excellent heart function (his ejection fraction is within "NORMAL" range. As in, normal normal. Wow.) They were able to get good measurements and map his vascular system. They did see what is most likely a collateral vessel on his right side which is the main reason we are moving forward with also doing a catheterization. In the cath lab, they can test and see if Luke is actually using that vessel (if it is "diffuse") and if so, they will coil that inefficient vessel. The metal coil in the vessel causes a blood clot to form and close the vessel. Over time, tissue grows around the coil, forming a permanent seal.

I know, right?

So we'll be heading to the cath lab this Tuesday morning to see what we can see. At the minimum, they will place a catheter both through his femoral artery (to access his left ventricle) and also the internal jugular vein in his neck to test his pulmonary vascular resistance. This data determines whether Luke is a good candidate for the Fontan. They will also measure the pressures in his ventricle.

If all they decide to do is collect data, Luke should be out in recovery within an hour or hour and a half, and we will get to go home after his 4 hour recovery (they need the kids to lie as still as possible for 4 hours to prevent clotting issues in the access sites. Yuck. Borrowing an iPad for this portion of the day.)

If they decide to coil any collaterals (there could be multiple, we just don't know), we will need to stay overnight and Luke will receive three mega doses of IV antibiotics before discharge. They will also do a chest x-ray before discharge to make sure the coil is where it should be.

Finally, Dr. B. will measure the gradient pressures above and below Luke's narrowing in his aorta. Luke had this narrowing ballooned back in 2010 and it has stayed pretty open since. If there is moderate narrowing, Dr. B. will do another ballooning. If it is significantly narrowed (very unlikely), he will place a stent to hold it open.

So a lot of possible outcomes on Tuesday. We are prayerful and hopeful that no interventions will be needed and we will all sleep in our own beds that night.

Thankfully, with the anticipation of getting a post-cath pet turtle (the things you do, right?!), Luke's spirits have been really good going into next week. I am so thankful for that. He doesn't know he may have to spend the night yet, since we don't want him stewing on something that may not even happen.

If you'd like to pray for our family, here are some specific requests:

1.  Luke's nose is a little stuffy right now. We need wisdom on whether or not to postpone in the next couple of days. Dr. B. is comfortable moving forward with an upper respiratory bug, but since this is an elective procedure, we would love it if Luke were 100% healthy. We don't want any unnecessary risks!
2. Please pray for the skill and steadiness of Dr. B.'s hands. This is a fairly straight-forward procedure, but goodness, it is a catheter entering Luke's heart! Please pray that Dr. B. would have clarity on what, if any, interventions are needed.
3. Pray for mom and dad's anxiety to be calmed as the long weekend is ahead of us. It helps so much to have Luke not too stressed about the whole thing. For my little worry-wart, this is a huge blessing.

Phew. That's a lot to digest. Thank you for being a part of Luke's "team". He is one lucky boy.

It's really not my job, as much as I think I want it

It's become clear to me that jumping rope is pretty popular in the first grade. It's happening at recess, in P.E., and a jump rope club is starting up on Thursday mornings.

Last weekend, my son, never one to be left out of social goings-on, decided we needed to buy a small rope so he could practice at home. My husband, ever the willing, found a short rope in our garage and spent 20 or 30 minutes with Luke, showing him the ropes (yes, intended "pun"ishment).

I adore my son's determination. It can be such a thorn in our sides sometimes, this strong will and opinion, but in reflection, it has served him so well. This kid who has to battle a bit more than most, to fight against his physiology, he continues to amaze us in his tenacity to keep up with his friends and do what he decides he wants to do.

Where was I during this half an hour? Not in the same room. I had to admit to myself (and now to blogland) that it is hard for me to watch Luke battle physically. To see his blue fingertips, his breathing heavier than the norm, to watch him battle what doesn't come easily to him.

Many, many heart kids have to battle gross or fine motor delays simply because of the amount of time spent in a hospital crib. I have read that one day in the hospital equals three developmental days. In that equation, Luke has lost 198 development days, over half a year. We noticed it in the fact that he didn't crawl until 10 months, or walk until 17 months. He didn't walk up the stairs one foot per step until he was five.

Now, I am not bemoaning our experience. Luke has done exceptionally well and never even qualified for OT or PT. I am thankful his body has adapted to his heart defect as well as it has.

But, he does have to work a little harder to learn large motor skills. Pedaling, climbing, monkey bars, skipping, and now jumping rope.

He worked hard last Saturday. He can get one rotation, sometimes two rotations in a row. Roger pumped up his tenacity and desire, even if the skill isn't quite there yet.

After their practice session, I asked Rog how it went. He said something that will hopefully change my attitude for a long, long time.

I shared with him my little pity party I was throwing, telling him that it's hard for me to watch Luke battle and that I wish he didn't have to.

You know what he said? "Jess, in my mind, the fact that he has to battle is such a good thing. I'm thankful he has to battle."

Well.

That is one way to look at it.

I wish that was my natural bent. But a friend reminded me, "Jesse, you are his mom. It's natural for you to want to rescue him."

She nailed it. I want to rescue my son. From discomfort. From embarrassment. From discouragement. And I can't.

And if I did all I could to rescue him, I wouldn't be a very good mom. When it comes right down to it, that's not my job. I don't want Luke or Laney to grow up looking to me for rescuing.

I want them on their knees, looking up.

I do think it's natural for us to resist trials. Naturally, we all want those sweet seasons where we're not being tested, when life is smooth sailing. But if I say I want my children (and myself!) to be dependent on a trustworthy, ever-present, always-good God, then I need to let go of trying to be their savior. Only One can save. And I do not want to stand in the way of His work.

Step by baby step

Okay.

We had a cardiology appointment a couple of weeks ago and subsequently a few more are now penciled in on the calendar.

His appointment was on a Wednesday, and later that evening we had a few minutes until we had to leave for Woodland's Math & Science night. Luke really wanted to go, but I'm still not convinced it was math and science drawing him. I'm thinking the free pizza and chance to hang out with buddies was his motivation. In those short minutes, I laid down on the couch with Laney, feeling just wiped. I am always surprised (you'd think I'd have learned by now) with how much cardiology appointments take out of me. The countdown leading up, the restless sleep the night before, the anxiety during each test, the emotional let down after (even if the news isn't bad). I honestly felt like I should be presented with mom-of-the-year award when I dragged myself off the couch and out into the pouring rain to take Luke to school. I was wiped.

But the news was good and the conversation continues fruitfully on. I feel like we have some next steps in place to help us make this ever-looming decision of when (if?) the Fontan should happen. It is a recurring battle in my brain, this weighing of risk to benefit of this next surgery. I am prayerful and confident that God will lead us to make the best decision for Luke.

That said, we are scheduling a few tests in what I'm calling this "research-gathering" season we're living in.

Although a little on the young side, Dr. Kim would like to try and run a stress test on Luke. This could tell us more accurately how well his body is tolerating exercise, his VO2 output, how low his sats get when exercising, and how fast he recovers.

The second test happened this morning. We had an ultrasound to look more closely at Luke's diaphragm function. Most likely during his first surgery at five weeks old, his phrenic nerve was nicked, paralyzing his left diaphragm. The phrenic nerve originates in the neck and passes down between the lung and heart to reach the diaphragm. There are two, a right and a left, and Luke's left was damaged. When we discovered the paralysis, we were at Seattle Children's, post-Glenn, and Luke was having trouble getting his sats up into the 80's where they expected them. He was running low to mid-70's. They could have left the paralyzed diaphragm alone, but because of the damage, that diaphragm was actually working paradoxically, or opposite of how it should have been. So instead of contracting during inhalation, it was expanding and vice versa. This was negatively affecting Luke's lung capacity and oxygenation.

Because a non-functioning diaphragm is not ideal for Luke's next surgery, the Fontan, Dr. Kim wanted to see what that left side was up to, if any movement had been recovered.

The radiologist couldn't tell us a whole lot, but there was definite movement happening today. Not as strong as the right side, but movement nonetheless. We'll see how Dr. Kim interprets this info, and what this could mean for Luke, if anything. I'm pretty sure they don't do plication reversals, but maybe they do? Or maybe a kind-of functioning diaphragm is better than nothing?

Thirdly, we are doing a cardiac MRI to get a deeper understanding of Luke's heart anatomy and function. An MRI is a non-invasive way to get more information than an echocardiogram can give. The MRI will create three-dimensional images of complex heart defects and measure how well the heart is pumping blood. The only bad part will be the anesthesia. This, along with the results of the other tests, his latest echo, and his surgical notes will all be sent to the Children's Hospital of Philadelphia. We are hopeful they will weigh in on Luke's unique case and give us good wisdom in our decision process.

Writing all of this post makes me realize how thankful I am that we have so many doctors who care about not just Luke, but all medically-fragile kids. When I talked to a cardiac nurse at CHoP, I was blown away by her receptivity to looking at Luke's case and her compassion for a family she's never met, living across the country.

And how about this for a date on our calendar? MAUI for Spring Break!! We got to go two Christmas's ago, but this little lady is itching to get back there. And huge blessing, we'll get to see our beloved Dr. Stefanelli while we're there. Poor guy has to do bi-monthly outreach clinics on Maui, so he scheduled his for the week we're there. CANNOT wait. We feel so blessed that he's stayed a part of Luke's care and we can't wait to see him and for him to see Luke in person.

Now we just need to get Laney to practice wearing a swimsuit, since I'm pretty sure my loves-to-be-nakey and hates-anything-restrictive girl won't be allowed on the beaches of Maui sans clothes.

Theoretics

The Fontan conversation picked up again these past couple of weeks. Between our old cardiologist and us; between us as Luke's mom and dad; between us and God.

The last we talked with Dr. S, back in September after Luke's cardiology appointment, the "plan" was just to continue to hold off on this third stage surgery indefinitely. To continue to watch and wait for Luke to determine the timing. It was agreed that the risks didn't outweigh the benefits at this time.

There are benefits to finishing the Fontan circulation. No pediatric cardiologist would argue with the potential benefits. You are taking volume load off the heart, you are improving the child's cyanosis, often giving the patient near-normal oxygen saturations, and in most cases you are increasing the child's exercise tolerance. No one would argue with the fact that there are risks to this new circulation as well: The Fontan could fail, a patient could develop long-term complications such as Protein-Losing Enteropy (a nasty, nasty condition) or heart arrythmias, and most talked about right now, the potential damage to the liver with this new circulation. There are single ventricle patients in their 20's and 30's that have such severe cirrhosis of their liver that they require a heart and liver transplant.

So here's our impossible situation: The theoretical benefits to Luke, if all goes well, would be great. I'd love to see his exercise tolerance improve, and would love to not have to worry so much about his sats getting too low, especially when he's sick. The theoretical risks to Luke, if things don't go well and his body doesn't like his new circulation, are really really scary to a mama's heart.

That's a lot of theoretics. Dr. S. will be the first one to tell you: There is no easy answer. Luke's case is so tricky in the fact that he is seven, that his sats have stayed in the mid-80's, and his heart function and energy have stayed really good.

But you want to know what's not theoretical?

God's great love and good plan for our son.

In as much as we've been going around and around on this topic the last three weeks (which is good, by the way, and a necessary part of this process), we've had to stop and remind ourselves what God says, "If you need wisdom — (yes! over here!) — ask our generous God, and he will give it to you. He will not rebuke you for asking." —James 1:5

Or how about this promise? "Ask and it will be given to you ..."

God is not about making our path muddy, or our decision impossible. And He definitely doesn't want us to make this decision in our own limited knowledge. Yes, he has given us smart people to weigh in, and we're in the process of adding another smart brain from the Children's Hospital of Philadelphia to help us make this decision. But even Dr. Rychik's vast knowledge of all things Fontan is nothing compared to the wisdom of God. Nothing.

That is what we cling to as we walk forward through this situation that feels like has no right answer. It's scary because we want the best for Luke, but I tell myself a million times a day that God does too. Even more than me. Because His best is better than my best, any day of the week.

Another biggie conversation

Thursdays are the craziest day of the week for our family. At the same time Luke and Roger are heading off to school, I take Laney down to her sitter's house so I can go into the World Vision office for the day. After school, my friend Erica picks up Luke and he hangs out with his buddy Marcus until the hubby picks him up around 4:45. At the same time, I'm picking up Laney and then finally we all converge at home for the night. Phew.

As soon as Laney and I walked in the door a few Thursdays ago, Rog told me Luke got a pass to spend his second recess in dad's classroom. The story unfolded that Luke told the recess duty that he just couldn't keep up with his friends today while they were all playing football. Mr. Chris, the duty, asked him if he wanted to go hang out with his dad for the remainder of the recess.

It was time for another sit-down conversation with Luke about his miracle heart.

The conversation went a little like this:

Luke: "I don't understand why I can't run as fast as my friends when we play football."

Dad: "Do you remember when we talked about how God made your heart? And how it's different than a lot of other kids' hearts?"

Mom: "Do you remember what a heart looks like? How it has four different sections that have different jobs?"

Luke, blowing us away: "Yeah. I know that I have this one (pointing to top right) and this one (pointing to top left) but I think I'm missing this one down here."

Mom: "Exactly. Those sections are called chambers. Most people have four chambers in their heart but you only have three. You are missing your right bottom chamber."

Luke: "But why does that make me not run as fast?"

We explained a little about oxygen levels, how your muscles need a lot of oxygen to move, and how his one ventricle has to work harder to pump because it's doing two jobs instead of one.

Dad: "Do you realize, Luke, that the fact that you are playing football at all at recess is a big deal? Your heart is superman strong for only having three chambers. Do you feel like you aren't keeping up during other times, like playing with your friends at home, or P.E.?"

This is where you can relax knowing his confidence is intact ...

Luke: "Oh, I totally keep up in P.E."

We explained that playing football at recess is harder because the field is so big and that you have to run a lot farther when you play outside. We told him he could find a different activity at recess, but he didn't love that idea since "all his friends play football". So we told him he'll just have to figure out a way he can play even if he's feeling like he's not running as fast or far. Or if he's not getting the ball. But ultimately, he's going to have to decide. As much as we'd like to, as much as we'd do anything we could to, we can't fix this problem for him and we definitely can't make it go away.

He asked, "Is it okay that I told the duty?"

Dad: "Yep. Mr. Chris already knows about your heart. All the adults at your school know about you."

"All of them? Does Miss Culver know? Mrs. Brumbaugh? Mrs. Miller?"

Dad: "Yep, they all know because when you were born and had your surgeries, Daddy had to take a lot of time off and so they knew about your heart. A lot of them even prayed for you."

Luke: "Do my friends know?"

Mom: "Not unless you tell them. That's going to be up to you."

Mom: "Do you know what jealousy means, Luke?"

Luke: "Yeah, like when you are sad because your friend has something and you want it too."

Mom: "There might be times when you feel a little jealous of your friends because they can run faster, but your job is to remember that God gave each of us different gifts. Not everyone can read as well as you, so maybe they feel a little jealous about that."

Dad: "I have three boys in my class, that just today, they struggled with an art project. Now they can catch a football really well, but art is really hard for them. You might feel bummed from time to time that your heart is different, but faith is trusting that God gave you this heart because he's got a big plan for you. You have to remember how many people have been blessed by your life already. And you're six!"

Luke: "Did Miss Culver come to the hospital to visit me? Mom, can I have more pizza?"

And that was pretty much the extent of the conversation. It was really good. I thank the Lord that He gave Luke a confident spirit so that he can see how many gifts he has been given. I pray that stays with him. I also pray so hard that he would never get to a point where discouragement causes him to stop trying.

Since then, we haven't heard any more rumblings about being discouraged at recess, and just yesterday, he came home filthy because he was playing football. So we keep pressing on, conversing with him as he leads.

Part of the above conversation also included talk about how karate might be a really good sport for Luke since it's not as much running as football. Luke has been begging to take karate for months, and this Tuesday was his first class:

I think he got a kick out of it.

So sorry :)

I hope this ends up being a good fit for him. He's a little bummed he's not playing basketball this year like he has the last two years. Maybe after the his next surgery we can revisit basketball, I don't know. For now, he's excited about karate so we'll see where that takes us. And we'll wait to see the unfolding of God's plan for our sweet boy.

Decisions, decisions

Clearly it's not Sophie's choice ... but every time I leave Luke's most recent cardiology appointment, I feel myself shouldering more of a burden for the decision of when to do the Fontan, his next open-heart surgery. It's a decision that has no perfect answer. When you are talking about putting your child through major, major surgery, it would be really, really nice for someone to tell you, "Here you go. Here is the perfect plan for an optimal outcome."

But that's not where we are. And I'm pretty sure that's by God's design. Because if you are given the full picture, why would you need Him? I am overwhelmed by this verse today:

"Now if any of you lacks wisdom, he should ask God, who gives to everyone generously without a rebuke, and it will be given to him." —James 1:5

If it read, "Now if any of you lacks wisdom, raise your hand", you would see me flailing my arm high in the air. We see so little of the picture and yet we want so much for Luke to be his healthiest. That is why I am overwhelmed with gratitude that God promises He will give us wisdom when we ask. I read and ask questions and make myself crazy trying to decide (in myself) when the time is right for Luke to have the Fontan. There are so many variables. Here is just a snapshot of the list that swirls through my head at times:

Pros: Likely improved exercise tolerance More normal oxygen saturations Possible growth spurt

Cons: It's open heart surgery, including time on bypass. Open heart surgery can mean a long hospital recovery Lots of kids experience emotional trauma and behavioral regressions that last for weeks/months post-surgery Research is pointing to long-term linkage between the Fontan circulation and liver damage. The Fontan could fail and need to be taken down. One of Luke's diaphragms is plicated (surgically stitched down) because it was paralyzed during his first surgery. There is some data that shows Fontan hemodynamics are not optimal with a plicated diaphragm.

So, what do you do? Part of me thinks, if the Fontan can give Luke any benefit, isn't it worth it? But then another part of me thinks, Luke is doing well; he is thriving in school, and we aren't seeing any negative impact to 85% oxygen saturations... Do you fix something that's not broken?

I told another heart mom the other day that one of my biggest fears is that we move forward with the Fontan, see a big difference in Luke, then wish we would have done it sooner. She told me in a gentle, loving way that that was crazy talk. We can only make the best decision with the information we are given.

We walked out of our cardiology appointment Wednesday with no more clarity as to when Luke will have the Fontan. Of course, our prominent emotion was gratitude. His echo showed fantastic heart function and squeeze and no narrowing in the aorta, where Dr. Stefanelli ballooned it three years ago. Many kids after an angioplasty need another before they are old enough for a stent. Thankfully, Luke's aorta has stayed wide open. Also, his sats were back up from June to 85% ... and with a stuffy nose to boot! He had grown an inch and gained a pound and a half since six months prior, which is good growth for him. Overall, everything looked good. Really good.

Dr. Kim wants us to come back in four months for a sat check and then six months for another full work-up. There was not even discussion about an upcoming surgery date. It was a "keep on keepin' on" conversation.

I don't have the answers. Dr. Kim doesn't have all the answers. What we have is a boy who is doing exceptionally well with the unique heart he was given and a God whose promise I will cling to:

He knows the future and He will give us direction as we need it.

That will have to be enough. We will keep on keepin' on, eating donuts and playing Wii boxing like our lives depended on it.

"I really scared"

Well.

There He goes again, taking my worries and my "what-ifs" and throwing them out the window. How many times on this blog alone have I gone through the process of worry, pray, worry, wait, let go, take it back, worry some more, watch God do His thing, apologize for my lack of faith, and finally, thank God He is in control and not me.

I think this is why God tells his people to "Write these commandments that I’ve given you today on your hearts. Get them inside of you and then get them inside your children. Talk about them wherever you are, sitting at home or walking in the street; talk about them from the time you get up in the morning to when you fall into bed at night. Tie them on your hands and foreheads as a reminder; inscribe them on the doorposts of your homes and on your city gates."

We have to know his words and promises to shorten the time between worry and trust. I'm not sure I'll ever be one to say, "Oh, I don't struggle with worry. Not even a little." But I do believe the more I recall God's faithfulness, the easier it will be to hurdle my anxiety and rest in His goodness.

In His goodness, He gently reminds me: 

"Do you not trust how much I love this child?"

My biggest worry heading into first grade was how Luke would transition to full-day school. I could never have imagined a transition so smooth. He has blown my socks off, even wanting to wait for the neighborhood bus to play with his friends as soon as we get home.

There have been no morning tears, no afternoon meltdowns (on Luke or his mama's part).

I have to interject on myself — I wrote that above sentence about one day too early. We had a major meltdown Wednesday after school. It was a doozy, but it was over quickly and he was ready to go again.

This is Luke's teacher, Ms. Culver. She exudes joy and love and is one of the most thoughtful people I know. She and my husband have taught together for over 20 years and my heart fills with joy when I think about Luke in her care each school day.

Here is Luke with Daddy, Ms. Culver and "Uncle Alan". Alan and Roger have team-taught for 23 years, with a retractable wall between them, open a majority of the time. Every year, these three super-teachers have taken a first day of school picture, and Luke got to join in this year.

How lucky is he?!

 

Lately, my little miss has been scared of her shadow, along with just about everything else. Any noise made she thinks is a monster and she needs two lamps on in her room to sleep. "I really, really scared, Mama."

You know what I tell her? It's exactly what God tells ME when I'm really, really scared: "I am with your always. I am bigger than your fears."

I so desire Laney to know deep in her heart that God's love casts out fear; that she can rest in His arms because He is faithful.

Even at two, we develop these fears that want to distract and distance us from God. If Satan can get us to focus on what we're afraid of, then we can't possibly focus on God. What an example Mary has been to me this week, especially as we gear up for Luke's cardiology appointment next Wednesday.

An angel comes to her (crazy in itself!) and tells her that she has been chosen to carry God's own son.

"But how?" she asks. Many of us wouldn't have even stuck around to ask this very logical question. But she asks and receives an answer from the angel that would terrify me:

"The Holy Spirit will come upon you,
    the power of the Highest hover over you;
Therefore, the child you bring to birth
    will be called Holy, Son of God."

What would this mean for Mary? Her and Joseph's reputation would be ruined. An unwed pregnant woman in those days could be stoned for her indiscretion. She would lose friends, family and eventually, her son.

Here is where her example blows my socks off. Without hesitation, she says yes. For her, the joy of obedience far outweighed the negative ripples that would come. The distance between her question of "how?" and her obedience was short. Mine is not that short, but I'm working on it and practicing trust this week as we near Luke's appointment.

I could dance around and around with all the possible outcomes of this appointment and still, where would that leave me? With aching feet and no more control than I started out with. God is so good to use my daughter's fear right now to speak to my heart. At (almost!) 35, I am having to learn the same lesson as her. And He is so gracious to be patient with me.

Finishing strong

Today is the last day of summer. Tomorrow my "baby" starts full-day school. We have played hard this summer and although I know I'll appreciate the structure school gives us, I admit I grieved just a little on my run yesterday when I noticed how many leaves were crunching beneath my shoes.

We just got home from a wonderful five days in Black Butte, Oregon. It was just what our little family needed after having daddy away so much at camp this summer. You know how elite athletes do "two-a-day" workouts? Well, we were elite at hitting the pool twice a day. We swam and swam and swam some more. Throw in some bike-riding and in-town eating and we called it one good vacation.

Our house on the ranch is about a 10 minute bike ride to the pool, almost all downhill. So you can imagine how much fun the kids had riding in the trailer. "Pedal faster, Mom!" But their ticket was only one way. No kids allowed in the trailer on the way home ... those uphills are killer!

Leaving the house Thursday morning to head home, the kids called out all the way down the driveway, "Goodbye Black Butte! We love you! See you next year!"

I grew up going to Black Butte every summer and my heart smiles knowing my kids are beginning to fall in love with this place as I did so many years ago.

So. We are home now, our Teenage Mutant Ninja Turtles backpacks are bought and filled and we head tonight to Luke's open house at his new school. He is going to be going to Dad's school, the school where Rog has taught for 23 years. We absolutely love Shaw Road, our home school, but it simply comes down to the fact that there is no doubt Luke is going to be well taken care of at Dad's school. We adore his teacher, and she has taught almost as long at this school. She and Roger went to college together and she is a dear friend to us. I get that flip in my stomach thinking of Luke having such a wonderful teacher this year. She will be a fantastic help to us as we transition to this world of full-day school.

"Uncle Al" is Roger's teaching partner (also teaching at Woodland for 20+ years). Luke and Daddy will ride to school each morning and hang out for a little while in Rog and Allan's classroom. Pretty darn special.

This boy is ready. He has matured so much in the past six months, trying new things he never would have last summer and really gaining confidence in new situations. When he didn't bat an eye when I dropped him off at VBS in July, I knew we had turned a corner. I'm not naive to think we may never have his separation anxiety crop up again, but the improvement we've seen lately is encouraging to this mama's heart.

Academically and socially, I have no doubts he is ready for first grade. This is a kid who is reading chapter books and can rally the neighborhood kids in a matter of minutes.

Where I've been asking God for peace, however, is for the physical and emotional areas. I am nervous about how he will handle school from 8:25 to 2:45. That is a long day for any first grader, much less a first grader missing a ventricle. I am prepared for some major meltdowns the first few weeks. I just pray that God strengthens him and gives me wisdom and patience! Yes, it's perfectly fine with me if you would pray too :)

Here we go!

THE Talk

For as much as we've wrestled with the wheres, the hows, and whens to tell Luke about his heart defect, God made it very clear this past week it was time for the conversation to happen.

We have had such a good summer so far. A really good summer. Lots of swimming at the lake, playing with neighborhood friends, hanging out at daddy's camp, roasting marshmallows, VBS, and not a whole lot of cooking. If I were to give this summer a theme, I would have to call it the Summer of Swim. This is the first year Luke has shown motivation to learn to swim and be like some of his friends — life-jacket-less. And he is getting close! It's really clicking for him this summer and I love that he is loving the water.

All that to say, my friend Erica and I headed out to a local wading pool last week with our four plus two older boys (10 and 7) she was babysitting that day. This pool is only 1.5' deep but big enough the older kids could still play without getting bored.

One of the games the four boys came up with was a race game. Luke was hanging in there for a while, but I could tell he was getting frustrated that he could never win the race from one end of the pool to the other. My mama's heart was breaking but I also didn't want to jump in right away and "fix" the situation. My amazing, sensitive friend also noticed the dynamic and suggested the boys play "Marco Polo" instead, which they happily did.

As we were packing up later that afternoon, I asked Erica what she would do if she were in my shoes. For some reason, seeing Luke frustrated on this day was bothering me. Yes, I could tell him those boys were older and had been swimming longer, etc... but today that didn't feel like enough. I didn't want Luke confused as to why he could never win a race. I didn't want him to lose the desire to try. But was I really ready to sit him down and explain that he is different?

I left it alone that night, but God made it very clear the next day that it was time. Erica's son, Marcus, has had a wiggly tooth for a few weeks and on Thursday it finally fell out. She had sent me a picture and I showed it to Luke. "Do you notice anything different about your buddy?" I asked him. Luke has lots of friends who have lost teeth, and desperately wants to lose a tooth, but I was not prepared for his response. He burst into tears, sobbing that he was never going to lose a tooth and he was just a different boy and it was all because of his scar.

WHA?!

I pulled him into my arms and told him that what I had to tell him was very important and I needed him to hear me.

I don't remember word for word what I said, but I was praying so much that God would use my words to sink deep into Luke's heart. That he would hear TRUTH that Thursday afternoon.

I told him God made everyone unique. That no two people are the same.

Some people are short. Some are tall. Some have birth marks and some have scars.

I asked him if he thought God loved Marcus more because he lost his tooth first? He giggled.

I asked him what God cares about. Is it teeth, scars or the heart? He knew the answer.

I told him I understood what it feels like to want to fit in. Everybody wants to fit in and be like their friends, but what we have to remember is that God cares only about what's inside.

And then I told him that his heart is different than most of his friends'. It pumps differently, I told him, but that had nothing to do with who he was as a friend, a son, a student, or a big brother.

I'm not sure how much he'll take away from our conversation, but it did seem to me that a weight was lifted off his shoulders. He had obviously been thinking more about this than I realized and I'm so glad he was honest with me.

Later that night, Rog tucked Luke in and continued the conversation with the fact that God made Luke's heart so unique, out of a million people, his was the only heart like it. And that sure, he might not be able to swim as far or run as fast as other kids, but the fact that he was swimming and running at all was a true miracle. "Really, Dad? No one else has a heart like mine?" Dads are so good at making kids feel like superheroes.

I often feel so inadequate parenting a special child like Luke; maybe as a parent in general. All I can do is pray God takes my words and my intentions and shapes them to shape Luke's heart. I want him to feel like a superhero ... not because of how fast he is, but because he has Jesus in his heart.

And now we're off to swimming lessons. Because perseverance is so much more important than winning.

"I happy now"

In the past few months, we have had to start implementing some discipline techniques for our sweet daughter. Our sweet daughter who is finding her voice and using it to say "No!" at inopportune times ... like when I want her to say "Yes."

Fortunately — (for her and us) — putting her in time-out and sitting her on the step are working (for now).

We talk a lot in our family about happy hearts, the joy of the Lord, and shining brightly for Jesus. Both our children's names are derivatives of "light".

Luke = Bringer of truth and light
Laney = Bright light

I pray so often that our family would "shine among them like stars in the sky" (Philippians 2:15).  Not so that we would be elevated, or seen as the "perfect family", but so that God would be glorified through His work in us.

All that said, when we send Laney to the step, we tell her she can come off when she has a happy heart and is ready to obey. So she goes and after hardly any time at all, she jumps up, comes running, yelling, "I happy now!" And 95% of the time, she is ready to do what I've asked her to do. (Why is getting dressed such a downer for two year olds?! And I won't even start on getting in the car seat.)

Wow. If only the rest of us could change our attitudes so quickly. If only we were as quick to transition from frustration into joy. Another reason God tells us to be like the little children, right?

My segue is going to be clunky but it's happening anyway. I'm moving from Laney's happy heart to Luke's.

For the past month, the word "SURPRISE" has been on our fridge calendar, in bold letters on the June 25 square. Luke's guesses ranged from new temporary tattoos to a moped. He wasn't even close.

On late Tuesday afternoon, we snuck our bags in the back of the Odyssey, buckled him in and drove down to our neighborhood mailbox, where his "clue" was taped to the back.

He may have gotten a little excited when he figured it out ...

The envelope his "clue" came in said, "To Luke: For your outstanding work in kindergarten."

The next 45 minutes were hilarious and a memory Rog and I will treasure forever. Our boy is a gabber, but this was a whole new level. He couldn't stop talking or bouncing.

We checked in and spent very little time exploring ... it was Luke's agenda and his agenda was to hit the waterpark. To be honest, I was surprised with how brave my cautious boy was. The yellow slide (below) he rode first is pretty big ... one where you have to lie on your back and cross your arms and legs. He didn't even hesitate! He got to the bottom and raced back to do it again (and again).

Luke rode every slide except the Howling Tornado. 4" too short for that one. It was a blast. He loved it so much, especially the one where all three of us could go on together. We debated about bringing Laney, but I think it was the right choice to leave her to adventure with Nonna. She would have enjoyed the waterpark, but it was so special having one-on-one time with Luke.

It was getting close to 6pm, and we knew we had to get food in him, even though Luke wanted to stay in the waterpark longer. The grouchies hit as we were waiting for our food, but a little glow-in-the-dark putt-putt golf perked him right up.

After another waterpark session in the morning, it was time to head home and get our sweet girl and give her the pink wolf Luke "bought" for her.

In case you were worried about poor Laney missing out on our big Great Wolf Lodge adventure, rest assured:

Happy was her heart, too.

Sat check

I woke up really early on Wednesday. Early even for me, an earlybird. I tried to go back to sleep but after several futile minutes, decided to just start my run earlier than I planned. I went fast and hard and with each footfall, peace was shouldering out the high levels of anxiety I had woken with.

Luke's cardiology appointments always do this to me. How can a single machine that clips on a finger cause a person so much turmoil? Wednesday's appointment was a simple sat check, but of course that machine produces a number and that number can determine how Luke's heart is handling his "unique" circulation.

At the end of my run I texted a response to my friend who had asked how I was feeling, "This is what I know this morning: I trust God." I knew that whatever that number showed a couple hours later, I would need to hold tightly to that peace I felt post-run.

Luke's sats were 82-83% in the office Wednesday morning. I won't lie, I was hoping for a little higher, but I also have two days of perspective under my belt, so can see that the difference between an 83% and an 85% is very small in the scheme of things. It doesn't change the course of action, which continues to be the "watch and wait" approach.

Two days later, I also feel a little ashamed of myself. I have a SIX AND A HALF YEAR OLD who just soared through kindergarten and I was choosing to focus on a number I didn't like. I have a miracle boy who other doctors are watching because he is so much older than the typical single ventricle child to have yet had the Fontan. His left ventricle is super strong. He reads voraciously. He wrestles with his sister. And GOD KNOWS BETTER THAN ME when it's time for the Fontan.

We will check back in with Dr. Kim in September, for a full work-up, and most likely schedule a catheterization for the spring, to get an even closer look at this heart God created.

Thank you to those who follow our story, who pray for us and love our boy. He is one fantastic kid.

Hula-dancing graduate

Luke is only a kindergartner for 7 more days. As of June 18, he will officially be a first-grader, going to school full day.

If only he weren't such a sad kindergartener...

Don't get me wrong, he has had his share of tears this year, and his share of worries, especially at morning drop off. Watching him today, I cried my own tears. Tears of pride and gratitude at how far he's come ... not just this school year, but in his six short years. From a tiny baby who's heart could not sustain life to this vibrant, flourishing, graduating six-year-old.

My husband came to the graduation program this morning and texted me this afterward:

"I really love you! Sometimes the emotions are so huge I just can't breathe. What a miracle we have!"

Perfectly said. And exactly what I was feeling as I watched him hula and sing and be goofy with his friends.

Your faithfulness, O Lord, overwhelms me today. You have carried Luke thus far, loving him even more than we do, and we trust that You will carry him today on.

You wear your name well, Luke. You are a bringer of light into our lives.

 

You will rock first grade.

We love you.

What's in a Name, Part III*

My blog-world turned real-life friend, Angie, is down from Alaska right now at Seattle Children's hospital. Her five-year-old daughter, Natalie just had her Fontan Thursday morning. The girl is doing the really, really hard work of recovery and praise God, already moving to the floor later today.

Having gone through two open-heart surgeries with our son, I have an idea of what Angie and her family is going through right now. More of an idea than a lot of people.

But I can't know know.

It wasn't until after Luke's two surgeries in his first year that I entered bloggy land and started meeting moms and dads around the country who could relate to the emotions and fears I felt. Then I joined Mended Little Hearts and met even more moms and dads who got it. We connected on that "I get it" level. They knew what it was like to battle to get your kid to gain ounces. To be in the hospital day after day and just want to steal your baby out of there. We smiled at each other when we pulled out the Purell bottle at the same time.

Yes, they could relate. But even they couldn't know know.

I struggled with this for a long time. Feeling alone because no one "got it". Feeling resentful that even if I shared until I was blue in the face, my friends couldn't fully understand. I wanted them to and even, for a while, pulled back from friendships because they just couldn't. And I have wonderful friends. Friends who called and texted and brought meals and prayed and visited.

It took me coming up from air after Luke's intense first year and a half for God to get through to me with this most valuable, precious lesson. One that I cling to when those feelings of frustration bubble up:

"I have not missed one moment." 

When the thoughts roll in, "She has no idea", "He can't even imagine", God whispers, "I know."

There's actually a name for God in the Bible that portrays this aspect of His character. We often hear the term "omniscient" used to characterize God, which is true and good, but that word can make God seem far away, watching over everything and everyone from a distance.

That's why I've fallen in love with the name used by Hagar, in the midst of her despair as she runs away from Abraham and Sarah in Genesis 16:13. El Roi, the God who sees me.

Connecting with other heart families has been a tremendous gift in my life. The conversations are rich and encouraging. But if I am dependent on people to meet the need to be seen and know, I am going to be sorely disappointed. I can encourage Angie today as she sits with her daughter in the hospital. I can pray for her and Natalie and someday, I am going to be in her place, with Luke in the CICU. But I can't know every thought and emotion she's feeling or see every tear that falls.

What I pray most for her and me and all my heart family friends is that in those dark times of anguish, that we would fall into the truth that God is right there, never slumbering or looking away. How that's possible I have no idea, but I trust it. And I need it. We all have a God-given need to be known. God wouldn't give us that desire if He couldn't fill it.

Luke's neighbor friend asked me the other day why Luke sometimes wanted a piggy-back up our huge neighborhood hill. Luke is so typical in so many ways, he hadn't even remembered about Luke's heart defect. In traditional fashion, my first emotion was sadness that Luke is different and that even my neighbors have no clue as to the severity of his defect and history.

This blog post had been spinning around my brain for a while now, and God used it to bring me back to what's true. His knowing is enough.


*There actually is a Part I and II :)