In two days Owen will have half of his left lung removed.

Am I afraid of having my baby go through such a major surgery?  Absolutely!

This isn’t the first time I’ve faced a surgery that filled me with fear.  At the age of 15, I learned I needed jaw surgery.  I resisted the idea completely but finally agreed after persuasion from orthodontists, oral surgeons, and my parents.

The biggest fear I had with jaw surgery was throwing up.  You see, when your jaw is wired shut (as mine was for six weeks), the act of vomiting can be fatal.  My surgeon instructed me the carry wire cutters with me everywhere, just in case.

I was afraid of the future and afraid of dying.  Yet it was through this surgery that God changed my life forever.

I had a lot of questions about death and heaven.  If I were to die, would I go to heaven?  I went into surgery with these questions unresolved.  Days later, I was actively seeking answers.

It was Easter Sunday 1995.  My face was still swollen from surgery, but I didn’t care:  I wanted to know more about Jesus.  Friends had invited me to their church’s Easter drama called The Passion Play.  I attended, and it was there I found the answers I was looking for.

For the first time in my life, I saw who Jesus was.  I had never before understood His love for me, but suddenly everything was changing.  I understood how Christ’s death and resurrection made it possible for me to be forgiven and start a new life with Jesus.  In that moment everything became clear to me, and I knew exactly what I wanted.  I believed.  I followed Jesus.  And I’ve never regretted it since.

Now, 22 years later, I’m facing another surgery.  This time it won’t be my own physical pain but my child’s.  I’ve wondered what it will be like, wondered if I’ll really have the courage to do what is required of me.

It was in one of these quiet moments that I sensed God nudging my heart.  “I’ve done great things in your life through surgery before, and I’m going to do it again.”

We’ve asked for healing.  We’ve asked God to take this whole thing away.  People from around the world have prayed for Owen, and God has answered in big ways.

But to be free of his CPAM, Owen needs surgery.  It’s scheduled for noon on August 18, and we expect a four-day recovery in the hospital.

I don’t know the rest of this story, but I’m confident God will carry us through the tough times and use this for good.

Courage is not the absence of fear; courage is moving ahead in spite of your fear. If you’re not afraid, you don’t need courage. Courage comes because you’re scared to death but you also believe it’s what God wants you to do, so you do it anyway.  —Rick Warren

Have I not commanded you?  Be strong and courageous.  Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.  —Joshua 1:9

We are quickly approaching the next stage of our CPAM journey with Owen: the CT scan. On Monday morning, we’ll wake Owen shortly after 2:00 a.m. to feed him one last time prior to his scan. When we wake him again around 7:00, I won’t be able to nurse him. Our routine is to nurse upon awakening, so it distresses me that he’ll have to go without a meal, especially when he can’t understand the reasoning. But there’s a chance he’ll need to be sedated, so that’s why he has to skip his morning milk.

The plan is to arrive to Helen DeVos Children’s Hospital by 7:30 a.m. so they can start an IV. The nurses told me inserting the IV usually makes a baby quite unhappy. The process will hopefully tire Owen enough that he falls asleep, and then they can do the CT without sedation. They may also give him a medication to make him relaxed, but if he cannot hold still for a couple minutes, they will need to sedate him.

On Friday, July 21, we’ll meet with his surgeon, Dr. DeCou, to discuss the results of the scan and make a plan for surgery, if it’s still necessary.

I may have mentioned before that I’m a part of two Facebook groups for the parents of CPAM babies. These CPAM parents have been a huge source of knowledge and support for me during the past eight months. I’ve learned that, like Owen, CPAM babies are born asymptomatic 70% of the time. (I’m so glad that was the case for Owen! Had it not been for prenatal ultrasounds, we would have never known Owen had a lung malformation.)

I’ve also learned that about 4% of the time these masses disappear on their own. About once a month I hear this good news for another baby: how I would love that to be the case for Owen! His x-ray at birth showed shadowing on his left lung, so the mass was still there when he was born. I know without a doubt that God can take the mass away, no medical intervention required. Yet I also know the mass may need to be surgically removed, a journey that will require courage and strength. My heart rests in the goodness of God, no matter which direction our journey goes from here.

We will post more after meeting with the surgeon, but for now please pray for a smooth CT scan Monday morning. It would be such a blessing if Owen didn’t have to be miserable for it.

Each time we travel to Ann Arbor for an appointment, we see answered prayers. The CPAM (congenital pulmonary airway malformation) is not growing, but Owen is. His CVR moved from 1.6 to 1.5 and now to 1.4. This means Owen needs less monitoring and our appointments will now be every other week.

The professionals at Mott are convinced DeVos Children’s Hospital in Grand Rapids could give us the same quality of care at a much more convenient location for us. We are still waiting for our referral to be processed and hope to see progress on that this week.

We’ve been so blessed by all the comments, text messages, emails, and cards we’ve received and for those who have offered practical help. From watching our kids to cleaning our house and helping with the cost of gas, you’ve made our lives easier! Thank you to all of you who have reached out in one way or another.

Our continued prayer requests are for Owen’s mass to shrink and for his heart to stay strong and move back into place. The journey ahead is full of unknowns. While some CPAM babies are born asymptomatic (meaning they can breathe fine but need surgery later), babies with very large masses (like Owen’s) are at greater risk of having breathing problems at birth. We’re praying this is not the case for our young warrior—we know God can answer that prayer. Our greatest hope is the CPAM would disappear altogether and Owen would never need surgery.

Though we don’t know the rest of the chapters of Owen’s story, we put our hope completely in the One who does. God is not only the Author of Owen’s story, but the Hero. While we can’t see the bigger picture, we trust God will use all this for good.

“For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.”

Psalm 139:13-16

And so we wait, and we pray. We place all the unknowns into the hands of the One who knows and loves Owen best.

Jen

Yesterday afternoon we traveled to Mott Children’s Hospital for our second appointment. Each appointment starts with an ultrasound of Owen and includes pictures and measurements. We were thrilled to see that Owen, now an almost 2-pound baby, is growing well. And the mass in his chest–praise God–appears to have stopped growing! This means his CVR, the ratio that measures the size of the mass in relation to his body, is going down. On Tuesday it was 1.6; on Friday it was 1.5. Because of this positive change, the doctor changed our schedule from appointments twice a week to appointments once a week.

During the ultrasound, Owen’s heart was beating strong and showed no signs of distress. Though his heart is out of place, we hope it will move back to the proper position as he grows bigger and the mass either shrinks or becomes smaller in proportion to his body.

Our prayers from here are that:

• Owen’s heart would stay strong and return to its proper place.
• The mass would shrink and Owen would grow.
• The mass would disappear and Owen would never need surgery.

As long as everything continues to go well, it looks like Owen should be able to have a normal birth with no need for a C-section or induction. He’ll need to be born in Grand Rapids or Ann Arbor to provide access to a Level IV NICU and pediatric surgeon. Hopefully he won’t need either of those. Through scanning and monitoring after birth, his doctor will determine the proper time for surgery. CPAM surgeries are typically in the first year of life, but sometimes they’re not needed at all. We’re praying that’s the case for Owen. We know God is able!

Whatever the outcome, our desire is that God would be glorified in this situation. In the first few days after learning about the size of Owen’s mass and the danger he was in, I was tempted to ask God why this happened to us. But I’ve walked with God long enough to know that demanding to know God’s reasons for things like this doesn’t really get me anywhere. Instead, I accept that all people go through trials in life. God hasn’t chosen me for all of life’s trails, but He did choose my family and me for this one. Whatever His reasons, I can already see good things that have come, such as:

• We’ve received an outpouring of love from family and friends. We’ve been blown away by how much people care and by the way people all around the world are praying for us.
• God is using this to grow our faith and our courage.
• We are more grateful than ever for the simple, sweet family times we can share together. We had no idea how much this trial would affect our normal family life. While there are extra appointments and extra things to do, we’re lowering our expectations for how much we can accomplish during this season and simply enjoying being together.

I have a dream of one day dressing my sweet Owen in these dinosaur pajamas (see the picture above). While we’re still unsure of what the days to come will bring, our hope and prayer is that Owen, our sixth child, will be the perfect completion to our family.

You are so loved, little guy. Loved so much more than you could imagine.

Jen