A sliver

“So does that mean there’s hope?”

“That means there’s a sliver of hope.”

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Yesterday morning we headed off to the UW again. This time we were at least a little more prepared for what we were facing. The news couldn’t get worse, right? We had been warned – repeatedly – that with her condition Arabella could potentially pass at any time. But our little mover and shaker was still moving and shaking, so we knew that news wasn’t waiting for us. What was waiting for us was a small glimmer of hope for measurements showing unexpected growth.

“21 weeks. That would be amazing. If her thoracic cavity is 21 weeks that would be a really good sign.”

That was what Bella’s daddy, the numbers guy, had to say the night before.

We arrived about 30 minutes early for the appointment, and plopped ourselves down in front of the fish tank. We immediately saw our little poppy fish, once again minding her own business while the cheerleaders paced the water above. The forty-five minute wait to get called back would have been quite excruciating if it wasn’t for a really good book in my hands. You know it has to be a really good book to occupy a momma’s mind in that waiting room (Little Princes is the book, for those curious). Jeff fidgeted between news articles next to me, clearly a little less patient with the wait.

Finally my name was called and back to a (different this time) ultrasound room we went. After indulging us with a few glimpses of our sweet girl’s face (still not the perfect profile shot…girl must have a strand of the Brandt stubbornness in her), the tech moved quickly through her list of anatomy checks. Head, normal. Cerebellum, normal. There’s the kidneys. Abdomen, normal. The heart. Defect is still present – the tech asks, have you guys had an echo? Our reply, “we don’t think that’s the greatest concern right now.”

Thoracic cavity. 21 weeks popped up on the screen. “So it’s measuring 21 weeks?” Jeff sought to confirm. “Well, the measurement isn’t final until we go run it through our program after the scan.” I could see the hope flit across Jeff’s face. I, the pessimist by nature, fought it back. I wanted to wait for the doctor’s official announcement before I let that hope grow in me. We moved onto the bones in her limbs, which were still measuring substantially smaller. Which made it appear, to our untrained reasoning, that the thoracic cavity might have grown at a much greater rate than the limbs.

The tech wiped off the goop and said she’d go run the images and make sure we didn’t need anything else. As soon as she left, Jeff began to postulate about the positive nature of the rib cage growth. I stubbornly told him to wait until we talked to the doctor (yes, Bella, you come by your stubbornness naturally). The tech returned, and Jeff peppered her immediately with a question about the thoracic cavity. Her reply, “well, it’s small, but the ratio of heart to cavity is right where it should be.” And with that we were sent back to the waiting room to wait for the doctor.

I pulled out my book. Jeff fidgeted. Eventually we got called back to an exam room. Weight, blood pressure, pulse. The doctor will be in in a few minutes. Book out. Jeff fidgets. After awhile, the doctor pokes her head in and apologizes for the wait, saying she wants to consult with another doctor before she talks to us. More waiting. And then the genetic counselor came in.

She had more information for us about a study of skeletal dysplasia out of UCLA that may be able to help us get more information. And then she had to talk to us about things like cord blood samples, autopsy, tissue removal and how all those things play into where we deliver. Basically no questions that any parent particularly wants to discuss, especially as their child wiggles inside them. But they are important questions and decisions nonetheless, and were presented as gently and informatively as possible. And then she announced for the UCLA study both Jeff and I would need to give blood samples that day. And then Jeff really started to panic. The poor boy has an extreme phobia of needles. He asked to procrastinate. I bluntly told him no. He began to sweat.

The genetic counselor left to register Jeff in the system so that he could go through his torture, and the doctor came in. She started with questions of how we were doing and what we had talked about with the counselor. And then we got to the ultrasound findings. “The official report says the thoracic cavity is at 23 weeks, but really depending on how you look at the images, it could be anywhere in the range of 21-23 weeks.” It was clear that this finding had come as a great surprise to our doctor. Hence the consultation with another doctor. She went on to explain that Arabella isn’t really checking all of the boxes of any of the more expected and common diagnoses. Our little girl appears to be an enigma. Uniquely knit together. “We were concerned there wouldn’t be enough space for lung tissue to develop, but…” as the doctor trailed off, Jeff interjected, “So does that mean there’s hope?”

“That means there’s a sliver of hope.” She then proceeded to explain that even if the cavity continues to grow, Bella’s heart defect, which is rather serious, continues to be of concern. That defect means she would likely need heart surgery within hours of birth. But a good candidate for that surgery is an otherwise healthy full-term baby. And our daughter clearly appears to have something going on, and they don’t know if she’ll make it to full term.

“But there’s more hope then there was before?” The doctor acknowledged this and told us she’d want to see us back in 3-4 weeks for another ultrasound. And she wanted us to come on a day that she’d be looking at the ultrasound measurements herself. We got the sense that she was a having a hard time reconciling the measurements. She may not know our Jesus.

The one thing we prayed for repeatedly this past month was for that rib cage to grow. The one thing with substantial, unexpected growth was her rib cage. Make of that what you will, but we’re praising Jesus. We’re praising Jesus that at the very least our little Arabella is showing everybody that things don’t always follow the expected path of development. And that when all seems hopeless, hope does, and always will, remain.

We did not walk out of the office with sudden confidence that we will get to enjoy Arabella for many days – dare we say years? – on this earth. Do we hope and pray for that? By all means, yes! Do we believe that can miraculously happen? By all means, yes! But we know there is much she’s still fighting against. We know we could go back in a month, and the growth of that cavity will not look nearly as positive. We know that she might just not be strong enough for the very surgery she needs to survive. And if Jesus decides to take her home, we will still praise Him. Of one thing we are confident. He is good. And that goodness is not tied to a specific outcome.

But. BUT. Today, we praise him for a ribcage that grew. We praise Him for a little girl who is befuddling the doctors. We praise Him for displaying His power and His glory in Arabella’s life, and humbly ask that He continue to do so. So rejoice with us, and pray for that little ribcage to keep on growing. And praise the one who hears and answers in magnificent ways.

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us…For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you. Since we have the same spirit of faith according to what has been written, “I believed, and so I spoke,” we also believe, and so we also speak, knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence. For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God. So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.