What I do know

Another heart mom posed the question on her blog, "Do other heart moms worry the way I do?" and though I can't speak for all heart moms, I know I shouted a resounding "Yes!" at my computer screen. There are days when I let fear and uncertainty hold on tighter than necessary. There are days when everything Luke does or doesn't do is analyzed with my CHD glasses on. And there are days when thoughts about his next surgery steal my joy of today.

Seattle Children's Hospital has a congenital heart defect support group, Heart-to-Heart, that meets once a month at the hospital. February's meeting was unique in that Chief of Pediatric Cardiology, Dr. Lewin and Chief of Cardiothoracic Surgery (otherwise known in our circle as the man who has seen and fixed Luke's heart), Dr. Cohen attended the group. The goal was for the docs to get a glimpse of what goes on in one of these meetings and for the families to ask questions and hear what these men are thinking about as they practice their discipline.

Yes, surgical options for children with congenital heart defects have come a long way in the 30 years of it's availability. But 30 years is a blink of an eye. The bottom line is that even top-rated cardiologists at top-rated cardiac centers just don't know what the future holds for these kids. Will all single ventricle kids need a transplant eventually? We don't know. Are kids who have undergone heart bypass operations at higher risk for neurological issues? We don't know. Will Luke be able to keep up with his classmates at recess? We don't know.

I try and imagine Dr. Cohen, who has spent probably 30 years of his life dedicated to studying, learning, practicing and researching congenital heart defects, and how difficult it must be for him to say those words: "I don't know". This field is just too young and there just hasn't been enough data collected.

My choice today is easy. Do I let this uncertainty distract me from what joy is right in front of me? Luke talking, running, kissing, whining, playing? Or do I grab hold of this promise found in Isaiah chapter 40:

"Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom."

Today, I am focusing on what do I know. I know that God nevers grows tired or weary of placing encouragement in our laps when we most need it. Just today, in the middle of one of those weeks that has felt wearisome, I run across this story from U.S. News & World Report. If you can't read the entire story, here's a small excerpt:

"Makenna Franks turns 5 this month. She'll probably start dance class soon. She noshes on Fritos twists, chases after her older brother and her boy cousins, and tries to climb trees the way they can in her suburban Houston neighborhood. Just a regular kid. But less than a year ago, she was on the operating table at Texas Children's Hospital for the third open-heart surgery of her four-year life...

...The replumbed heart is working well, says Grenier. She pronounces her patient "just amazing—she knows she has a zipper on her chest, but she won't let it slow her down."

A recent study in the journal Circulation suggests that Makenna has a good shot at a smooth road. Researchers tracked every Children's Hospital Boston patient born prior to 1985 who had Makenna's type of surgery. Most, even those who had the procedure many years ago, were alive 20 and 25 years later.

"If Makenna came to me as a teenager and asked if she could run a marathon," says Grenier, "I would tell her she probably could—if she'd been doing as remarkably well as she has so far."

I also know this: The friends I have met through this CHD journey are priceless. Two weekends ago, I got to meet up for dinner with three other "heart mamas", Katie (Maddie's mom), Mimi (Mia's mom), and Susie (Teagan's mom). What a joy to sit with three other women who know exactly how precious hand sanitizer is!

I know that there are people out there who are passionate about finding more and better options for these amazing kids, and I am committed to praying for them! It is coming up on National Congenital Heart Defect Awareness Week, and I am committing to pray every day for surgeons, doctors, researchers, nurses, cardiac centers, and activists. I know that prayer is powerful and effective not only to change others, but to change me.

Finally, I know that Roger and I have the sweetest, smartest, best boy in the whole world. The proof is in the pudding:

Woohoo. Lukey's Two!

Luke turned the big two on Friday, January 9. Two. My baby. I am floored that I have a child old enough to want to eat at the big table instead of his high chair. Old enough to tell me which song he wants to listen to when we're driving in the car. And old enough to understand that he can entertain people.

It goes without saying that Luke was the center of attention at his birthday party, but what surprised me was how much he enjoyed the attention! I've never seen this "hammy" side of him, this side of him that likes to make people laugh. I guess I shouldn't be surprised. From the day he was born, he has been a light to this world. His name is perfect: "Bringer of light and truth."

Luke's big party was a family affair: Grandmas and Grandpas and Aunts and Uncles. We had chicken wings, tacos, veggies with dip (well, just the dip for Luke as he'd lick it off and then throw the veggie away) and of course, cake and ice cream. We played with his new water table from mom and dad, opened presents and introduced Luke to the ultimate party game: the piñata! We filled this piñata with M&M's, bath crayons, new mimi's (pacifiers), fruit leather, play-doh and starbucks and arch cards for the guests. It was a mad scramble when the first person spotted the plastic!

Despite boycotting a nap that day, Luke was such a joy the entire party. I was half waiting for a melt-down, but it didn't happen! After our family left, we put Luke in the bath and started his bedtime routine. He was so tired after all the festivities that he fell asleep in my lap when we were saying prayers. What a fun day and what a fun boy.

Here are some of my favorite pictures from the day:

Luke helping Dada decorate his race-car cake.

Playing with his new water table. It was a birthday miracle that he let us push his sleeves up to play. He does NOT like that!

Opening presents! This is a wooden truck puzzle from Uncle Willie.

I guess they had too many injury claims with the old-fashioned "hit-the-piñata-with-a-stick" piñatas. Now they have kids pull a string until they pick the one string that opens the piñata door. Thankfully, we have no injuries to report!

Mission accomplished.

And this was Luke's mission strategy. Poke cake with finger then lick. Repeat.

Happy birthday, sweet boy. We love you!

Just a hiccup

Luke's sat's were a steady 86% today at our check-up, to our huge relief. It seems like this dip was just one of those hiccups that will make up Luke's life with CHD. I'd rather do without, but smooth-sailing doesn't increase my faith I'm learning.

Dr. S. does not think this dip has anything to do with discontinuing his Lasix, so we chalk this up to a big question mark. I'd rather have a definitive answer, but again, God wants to increase my trust in Him.

Thank you for all your prayers and thoughts for Luke this week, we so appreciate you checking in on us and keeping us in your prayers! We have been given the open door to pop in for a sat check anytime we want, but we'll keep our next scheduled appointment for June.

Low sat's?

UPDATE:We talked with Dr. S. and he thought that Luke's chest x-ray was a tad bit hazier than his previous (granted, his previous was over a year ago), but isn't ready to attribute this to stopping the Lasix. We'll head back in on Friday and if his sat's are the same are higher, great, if they are again lower, Dr. S. will probably do another echo. Rog and I are prayerful and hopeful.

ORIGINAL POST:I took Luke to Dr. Stefanelli's this morning to get a quick sat check, mainly to put my mind at ease. I've caught myself several times over the past two days over-analyzing everything Luke does. He napped three hours, does that mean he's more tired? Are his lips blue after his bath? Is he breathing harder? Ugh.

His sat's were between 80 and 83, which was definitely low for where Luke has been the past year. So Dr. S. ordered a chest x-ray to rule out fluid either in his lungs or pleural space.

Nurse Jodi called around 2pm and said that she and Dr. Park gave the x-ray an "all-clear", but Dr. S. wanted to look at it as well when he returned from a satellite office. I think I am glad that his lungs are clear, especially because we just discontinued two of his diuretics and I didn't want that to have caused the issue (most kids post-Glenn aren't on any diuretics). But now I'm wondering why his sat's have dropped? It could be as simple as he's growing or he's fighting a virus that's causing his oxygen perfusion to suffer a bit.

Dr. S. wants to re-check his sat's on either Friday morning or Monday morning and see where we are. If it's a little bug, he should trend back up. Let's pray for that! I am thankful we had a thorough echo two weeks ago, so I can rest assured that this doesn't appear to be a heart function issue. I am also thankful that my concerns are never brushed off by the nurses and docs at NWCHC. So thankful for a team that is so quick to work with us!

Luke has been talking this afternoon about his x-ray experience. He says that Mama wore a "funny dress" (x-ray apron) and that he "look fish" (looked at a fish sticker to position him for the x-ray). Finally, he talks about the "cat picture" (we "took" an x-ray of a cat in his book to show him how it works). What a big, brave boy. He fussed a little when we had to hold his arms up, but overall he did just great. The Elmo sticker didn't hurt, either.

So quickly reminded ...

Luke woke up at 1:30 today from his nap and we snuggled for a bit before going downstairs to get him ready to go to Nana's house for the afternoon. I thought his color looked a little off, but didn't think much about it as I fed him lunch and changed his diaper. A few minutes after my mom came into the house, I asked her if she thought Luke looked blue. She said that was the first thing she noticed but she didn't want to say anything right away. The area around his lips and his hands looked bluer than I've ever seen, so I called Dr. Stefanelli's office. I talked to our nurse and she said she would call Dr. S. and call me back. At this point, my heart rate had picked up and my knees started to shake. It's just been so long since Luke has given us a "scare".

Our nurse called back and said that as long as the inside of his mouth and his sternal area don't look blue, Dr. S. isn't worried. She said we were welcome to come by for a sat check if we wanted, but it's pretty common for heart kids to have perfusion inconsistencies after sleeping, if they're cold, or coming down with something. What scared me is that we just don't see that in Luke. His color is a really consistent pink.

Roger came home from school to help me decide if we should take him in, but by the time he got here, Luke had seemed to pink up (hard to tell after staring at him for so long!) and showed no other desaturation symptoms, such as respiratory distress. He was playful and happy to head to Nana's.

In one instant, I was brought face to face with all my fears and the absolute reality of Luke's heart that is so different from yours and mine. When we were in the hospital with Luke, facing those fears was the norm. But in this stable stage of our journey, seeing Luke show visual signs of his heart defect felt like being knocked in the head with a 2x4.

Today I was reminded that Luke is on loan, he is not ours and that God is Sovereign. And when I stop and think about it, that's an o.k. place to be.