We had our first visit to Spectrum’s Maternal Fetal Medicine office in Grand Rapids on Friday. It had been two weeks since our last ultrasound; we were anxious to check on Owen again. It was a great visit with lots of good news. Here are the highlights.

Owen continues to show no sign of further complications from the mass on his lung. He’s now a healthy three pounds. His heart is stable, and there were no fluid buildups in his chest or head indicating heart stress. Our doctor considers him out of danger for this condition.

Owen’s CVR – a ratio of the lung mass to his head size – started in the high-risk zone at 1.6 and had decreased to 1.4 by our last visit. It’s getting a little more difficult to do a precise measurement of the mass. As he develops, the bones in his rib cage become more dense, decreasing the clarity of ultrasound imaging. So the size measurements for the mass become a range.

Even using the highest possible measurements in this range, Owen’s CVR is around 1.2 at this point. Our doctor feels his actual number is probably closer to 1.0. It seems clear the growth of the mass has stopped while he continues to grow rapidly around it.

The path is now clear for us to have all remaining care for Jen and Owen done here in Grand Rapids. The staff and facilities at Mott in Ann Arbor were fantastic. But with winter weather coming on, we’re glad to avoid the 4-hour round trip for every visit.

We plan to deliver Owen at Spectrum downtown. They have a midwife on staff, which was a nice surprise. We’ll be meeting with her in the next few weeks. We will also have the chance to meet with a pediatric surgeon as a precaution. Our doctor does not believe Owen will need immediate surgery. She expects he will be asymptomatic and able to stay in the room with us after birth.

One small concern: Jen’s levels of amniotic fluid are measuring a bit high. This isn’t a huge worry but will be monitored as it can be a risk factor for preterm labor. We’re praying this stabilizes and that Owen is able to go full term.

Overall, we want to say Thank You: thanks to God for blessing us with Owen’s health and continued development, and thanks to all of you who have prayed, reached out with support, and shown you care for our family. We’ll continue to post occasional updates as we progress through these final three months of pregnancy.

We can’t wait to share pictures of a beautiful and healthy newborn baby boy!

Aaron

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