The Kerr Family

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

As Jen and I drove across the state to Ann Arbor last night and to the hospital this morning, we could feel a wave of prayer and encouragement carrying us along. We are blessed to have heard from so many people joining us in caring for little Owen.

I could write a lot about our experience, but since it’s been a long 24 hours, here are the highlights:

• The professionals at Mott were amazing. They made us feel welcome and took time to answer all the questions we’ve built up over the past few days.
• We got a great look at Owen. The mass in his chest was measured very precisely. Since it was measured at a different facility last week and using a slightly different technique, it’s difficult to tell with certainty whether the size has changed in the past week. But now we have a great benchmark for gauging any changes going forward.
• Owen’s heart is healthy. (It feels really good to write that!) The ultrasound can be a little scary. Even with our limited experience, it’s not hard to tell the heart is pressed forward and to one side at this point. But the heartbeat is very strong. Our doctor reviewed his chest, abdomen, and head in detail. Thankfully she found no evidence of fluid buildup, which would indicate heart distress.
• Our boy’s CVR – a ratio measuring the size of the mass to his head – is still a concern. But it’s at the low end of what is considered problematic.
• Owen really loves to wiggle.

Jen is going to be checked twice a week in Ann Arbor through the end of the month. This will be a bit of driving, but it will allow our boy to be monitored closely. There are a variety of medical options available if Owen’s condition worsens. Our prayer is they won’t be necessary.

We are currently in our 24th week of pregnancy. Most CPAM masses stop growing by the 26th to 28th week. If we can make it through that period without Owen’s heart being impacted, our chances of a normal delivery without surgery before or immediately after go up significantly.

Thanks again for all of your prayer and concern. We have made each of our kids a stuffed animal at Build-a-Bear before they were born. Our whole family is off to the mall this evening to make a bear for Owen.

An ultrasound last week for our sixth child revealed our baby boy is being affected by a type 3 congenital pulmonary airway malformation (CPAM). This is a non-cancerous mass which develops on the lung of a baby in the womb.

The condition is rare; it affects around 1 in 30,000 live births. Unfortunately, the type we are facing is a small percentage of those cases and is the most severe. The mass on our boy’s lung has grown to the point where it is putting pressure on his heart and the surrounding blood vessels. This pressure can eventually restrict the heart’s function and cause heart failure.

Problems with the heart are typically identified through the presence of hydrops – pockets of fluid which build up in the baby’s body as the heart can’t fulfill its normal functions. There isn’t evidence of this problem yet in our boy. But the diagnosis is still a serious one which could put his life in danger. A ratio of a baby’s head size to the size of the lung mass is typically used to measure CPAM severity; that ratio currently puts our boy at the highest risk level.

We were blessed to make contact with Mott Children’s Hospital in Ann Arbor on Friday. Jen and I have an appointment there Tuesday morning; the visit will include another ultrasound to confirm findings and then a discussion of how to proceed. Grand Rapids does have an excellent children’s hospital. However, based on our research, prayer, and an amazingly helpful discussion Friday with another specialist who has dealt with numerous CPAM cases, we felt Mott was best equipped to help. We will know more after our first visit, but we expect we may be making a lot of trips across the state in the weeks to come.

Many of our friends and family have asked how they can help. I’ll share a few specific needs below. But first we wanted to share something with you – a name.

We typically haven’t revealed our chosen baby names early. But we’ve found it much easier to pray for our little guy by name and thought others might feel the same. Since there may be a battle ahead and we need him to stay strong, we have named him Owen, which means young warrior.

For those of you who will join us in prayer, here are our current requests:

1. Please pray the mass in Owen’s chest will shrink while his heart stays strong and fully functional
2. Please pray for a great visit to Mott on Tuesday. We ask for a good ultrasound and for wisdom as we discuss a care plan.
3. Please pray for Jen. As an already-busy mother of five, she carries a fun but full load every day. The fears and what-ifs can overwhelm her. Please pray for comfort and peace in the midst of a difficult time.

We plan to post regular updates on Owen here on our website; we’ll also share links to each post on Facebook. If you want to get notified by email when we have news to share, you can use this link to sign up.

Thanks to all of you who have already reached out to offer help and encouragement. It strengthens us to know we’re not facing this uphill battle alone.

Sitting down for a meal and looking at the faces of my five children, laughing with them as we run and play in the fall sun, feeling their closeness as we all sit and read together: each of these situations can overwhelm me with wondering joy. It seems extravagant to ask for one more healthy child in the face of such life-giving grace. How much blessing can one man expect in his life? Do I dare to ask for more?

But my experience with God has taught me to ask for great and wonderful things. I’m asking God to do a miracle of healing in our little boy. And while the matter of whether we will be blessed to hold and raise Owen is still in question, the goodness of our God is not.

Aaron