Owen’s due date is now just 38 days away. We had a break from medical appointments around the holidays but got to check on him again in an ultrasound last week. I’m sorry it’s taken me a few days to get an update written. Between working, homeschooling, spending time with our kids, and making preparations for a baby, our days are pretty full.

Spectrum performed a very thorough ultrasound on Owen last week which included an echocardiogram. Careful measurements were done on his heart to make sure it is functioning normally and hasn’t been affected by the mass on his lung. The results were great; Owen’s heart looks extremely healthy.

His heart is still shifted toward the right side of his body. The cardiologist assured us this isn’t a cause for alarm. As long as the heart is working well, the positioning isn’t crucial. The body adapts. If and when the mass is removed from Owen’s lung, his heart will gradually shift back into position.

Owen’s lung mass measured slightly larger than at our last ultrasound, but our doctor wasn’t overly concerned by this. It is getting more challenging to get precise measurements on a very wiggly baby. He is now over five pounds and moves all the time.

Our schedule at Spectrum last week also included preparations for the “what if” scenarios.

The ideal path for Owen goes something like this: Jen goes into labor on her own and delivers naturally; Owen shows no signs of breathing difficulties or other distress and is able to stay with us in the hospital birthing center; his CPAM is evaluated, with surgery likely once he’s between three and six months.

If Owen faces struggles at birth and it’s determined surgery is needed right away, a pediatric surgeon will be ready. To prepare for this possibility we met with a surgeon and got more information about how that decision would be made and what the surgery process is like. Urgent surgery seems unlikely for Owen, but it’s good to know what to expect should we face it.

If Owen has other medical challenges short of surgery, he will spend time in the neonatal intensive care unit. We are blessed that the Helen DeVos Children’s Hospital has a level 4 NICU, offering the highest level of care for newborns. We received a tour of the facility and met with a doctor who explained how the process would work.

After the simplicity of delivering our last two babies at home, it can be overwhelming to wade into the medical world. There is a lot to figure out and many decisions to be made. But we’re doing our best to enjoy this pregnancy, take our worries to God, and be patient as we look forward to holding Owen.

Overall, Owen is on a great path. His progress since the initial diagnosis back in November has been outstanding. But as we’re learning, CPAM babies can be unpredictable. His long-term prognosis is very good. Still, there are many potential challenges along the way. We look forward to seeing God work through all of them.

Thank you for praying for us and supporting us.

Aaron

 

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

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