A look at the numbers

Yesterday started out very dark. Quite literally.

It was about 2:45am, having awoken from a disturbing dream, that I crawled out of bed and downstairs. I’m not going to lie, in the dark of the night that dream had left me shaken and unsettled. And for one of the first times in this pregnancy I watched peace vanish – which only further served to disturb me. And so I curled up on the couch, headphones in, willing my heart to praise away the darkness and Bible in hand. But the darkness lingered. I did eventually doze off into a fitful hour of sleep before it was time to get ready for the day, but I woke just as unsettled as I went to sleep and my fear of what the day may hold only grew.

I trudged upstairs, and ignoring the early hour, texted some of my closest friends to pray. And then I promptly crumpled on the floor in a puddle of tears, which is how Jeff found me. Just so you know, that’s me. That’s me in my flesh. A crumpled mess of tears unable and unwilling to face the day. When you see strength and faith and courage, you’re seeing my Jesus at work. And thankfully, He was at work in the early hours of this morning. Jeff gently coaxed out what I was feeling and thinking, and as I brought that awful dream into the light, and the emotions and thoughts it left me with, I watched as its power melted away. The tears stopped and I found the strength to face the day. By the time we hit the road, the same songs that accompanied us through Bella’s long labor filling the car, peace had returned in full force.

We arrived for our appointment at noon, and after a brief conference with a genetic counselor, headed into the echo and ultrasound for the next two and a half hours. The extraordinary amount of peace my husband felt during these scans was displayed in the fact that he refrained from asking questions. There was no quizzing of the techs as to what was on the screen, instead I watched my inquisitive husband patiently and peacefully and quietly wait, knowing we’d get the full run down in the doctors’ conference following the scans.

But as first the tech, and then the cardiologist herself, took long, long looks at Shiloh’s heart – in great detail, and from many angles – even our untrained eyes could see the uniqueness of this little girl’s heart. We know enough about cardiac anatomy to know we should be seeing four chambers. And it was clear even to our eyes that there were only three. However, our untrained eyes could not tell if they had managed to find the ventricular outflow, a crucial part of cardiac anatomy that our first ultrasound tech had been unable to visualize. I kept waiting for Jeff to ask about it. In fact, I mentioned my surprise that he hadn’t as soon as the tech left the room. “We’ll find out soon enough,” was his response. It was a response born out of not disinterest, but deep peace.

After the echo, and a brief wait, we headed into our ultrasound. In an ultrasound, bones are measured according to weeks. As of yesterday, we are 21 weeks into this pregnancy. In an average developing child, the bone lengths should therefore be within a couple days of that date measurement. We watched the tech measure sweet Shiloh’s bones in her arms and legs, and watched numbers ranging from 15 to 17 weeks pop up on the screen. We knew this was a significant bit further behind than Bella was at this point…and the question burned again in my mind, does this mean her ribcage will be much smaller too? It would only seem to make sense…

The tech got to the chest and circled and measured it. The measurement popped up on the screen…in centimeters, not in weeks. The doctor, taking in many factors, would calculate the week measurement after the scan.

It took a bit of time to check off all the boxes on the scan, because it turns out dear Shiloh is just as feisty as Miss Arabella. She was moving all over, drastically changing positions, throughout the scan. And she seemed to purposefully turn and pull away from certain probes into her anatomy. Let me tell you, this girl has got some fight in her. And while when the cardiologist had come to look at her heart during the echo, Shiloh had stubbornly snuggled into the placenta (another one of Arabella’s favorite tricks in utero) – refusing to budge to give a different angle from which to view her heart – during this scan she was playing a game of catch me if you can.

But we finally got all the needed imagery, and moved into the conference room. After a brief interlude, the cardiologist, genetic counselor, high risk OB, and neonatologist joined us. The cardiologist started out. While we had our ultrasound, she had gone back and looked at Arabella’s echo’s as well, and so was able to tell us that our two girls actually have more similarities than differences in their hearts. They both have an AV canal defect, which means their valve is singular rather than two separate valves. They also both have defects in their ventricular and atrial septums (the wall between the chambers of the heart). Bella had a minor VSD (hole in her ventricular wall) when she was born, which has since closed. It appears Shiloh also has a small VSD. Bella has a significant ASD as well, but here is where the girls differ. Shiloh appears to be missing her entire atrial septum – so she currently has no wall in her atrium. BUT…this is a repairable defect. A lot of kiddos can make it to 4-6 months of age with this condition before needing open heart surgery. There are significant chances of struggling to gain weight and needing some feeding help, but this defect is not a fatal diagnosis in and of itself. The ability for Shiloh to cope with it and get the surgery she needs really comes down to her lungs. Because her form of dwarfism effects the formation of the ribs, the question remains as to whether she’ll have sufficient lung capacity to tolerate the heart defect and ultimately the surgery.

So that comes down once again to the thoracic cavity measurement. At this point in the conversation we turned to the high risk OB for her report on what she observed of Shiloh’s anatomy and that critical number. She started with the bones in the arms and legs, reporting the numbers we had noted on the screen. Jeff’s patience was used up at this point…”But what about the thoracic cavity?” “Well actually, that’s measuring at 19.5 weeks.”

19.5 weeks.

Can you let that sink in again? 19.5 weeks.

To give you a little perspective, Bella’s thoracic cavity at this age was measuring around 16 weeks. Of course, no one had started praying for Bella’s rib cage at this point in her pregnancy. It was after twenty weeks, when warriors hit their knees in force, that we saw Bella’s little ribcage take off in unprecedented growth. Shiloh has had the unfair advantage of a couple extra weeks of prayer specifically targeted toward that little ribcage of hers.

Your kingdom come, your will be done, on earth as it is in heaven.

We’ve still got a long ways to go, but watching that kingdom come? Watching it gloriously display itself in a tiny little ribcage? It’s a pretty awesome thing to behold.

Now the doctors didn’t let us leave that room without making it absolutely clear that Bella, on the spectrum of possible outcomes with EVC, is the best of the best. Way far on the end of beyond expectations. They wanted to be absolutely certain that we know this could be a far different outcome. That there is a lot of growth that still needs to happen. That even with growth, Shiloh might cope with things differently.

And this was the only point during the day, after that dark morning, that I shed any tears. I looked at them and assured them we knew the spectrum. We knew when we got pregnant that we needed to be prepared to potentially say goodbye to a baby. We knew it then and we know that is still the case today. But we’re going to fight with her and for her until it’s absolutely clear that those little lungs just weren’t made to breathe on this earth. And we told those doctors we have an incredible support system (that’s YOU) that is fighting for this little girl as well.

So friends? Fellow warriors in prayer? Celebrate with us tonight. Go ahead and make a toast. Praise Jesus for encouraging numbers. And pray that kingdom come in that little ribcage.

As always, we are immensely grateful for each and every one of you that loves, cheers on, and prays for our little warrior girlies. Watch out world, something tells me the two of them together will be quite the force to be reckoned with.

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