Plan & Perspective

Our day-to-day philosophy & preparation for meeting Alva

When we were first told we needed to see Maternal Fetal Medicine specialists immediately, it was the soonest available appointment that dictated who we’d see and where we’d see them. Without a moment’s hesitation, we had our first appointment scheduled up in Maplewood. 

But when I hung up the phone, I panicked. 

We had no idea who we’d be seeing the next day. 

We’d so far had a very positive experience with M Health Fairview, but our experience was limited to a tiny corner of their healthcare—the team of midwives who’d handled all my prenatal appointments and brought both our sons into the world.

Going to a different clinic up in Maplewood felt like going to another planet entirely. We knew the specialists would be trying to see everything that was wrong with our baby in order to make an accurate diagnosis. But would they see our baby? Would they care for and respect the life that was growing inside me, as our midwives always had?

Only a handful of people knew what was going on as we drove up to that first appointment. Looking back on a text I sent my best friend in South Africa, our prayer requests that day were:

• That our baby would miraculously show healthy brain development

• That we would continue to trust God can do miracles and that He (not the reports) has the final say

• That we would stand firm in our faith, beliefs, and behind our child…we were wary of what the conversation about “options” and “next steps” might entail

• That we would be seen by compassionate, godly specialists

I wish I could say each and every one of those prayer requests was answered that day. But even though the ultrasound did not reflect miraculous healing, God provided a team of specialists who respected our values from the very beginning. Each medical professional He’s brought alongside us in this journey has shown tremendous compassion and care for our daughter’s life and comfort. There really are no words to describe the gratitude we have that Alva is being treated with dignity and respect, but I know it will always serve as a reminder of God’s faithfulness and provision in this very difficult time. 

When we first got our diagnosis, there did not seem to be any “good” choice, for us or Alva. What we wanted more than anything was for our baby to live and have a quality life. When it became clear that, with the exception of a miracle, neither could be the case, decision-making felt impossible. Our main questions became:

• How can we minimize suffering for our baby? What is the most merciful thing to do in this situation?

• What choices will be the most honoring of God and our baby’s life?

As I’ve mentioned before, the answers were not immediately clear, especially in the shock and initial grief that followed Alva’s diagnosis. Prayer and mentorship were key in helping us navigate those first few days. As we learned about the option and philosophy of perinatal hospice, though (which was largely thanks to our medical team), we began to see a tangible way to continue to give our daughter life that we also didn’t feel would condemn her to suffering. 

To give a brief explanation of perinatal hospice, it is a model of palliative care, which aims to maximize comfort and minimize suffering, geared specifically toward newborns. Perinatal means around the time of birth, but in the case of a condition like Alva’s, the care does not start there—it actually starts shortly after the diagnosis and adds a specialized, extra layer of support in handling the rest of pregnancy, decision-making before and after birth, and grief. 

So, for us, that care has already started. And even though it has been difficult to be confronted by the many realities and decisions it entails, it ultimately has built our confidence that we can give Alva a quality life for however long she may be with us. 

We had our first palliative care conference about a week ago. It was overwhelming and exhausting in many ways, but again, we are so grateful for our experienced and compassionate team who know our goals and heart for our daughter well. They’ve offered guidance and made suggestions when we’re too overwhelmed or sad. They’ve talked us through pain management and other treatments they’ll have ready for Alva when she arrives, if she is not stillborn. And they’re also working with us on a very specialized birth and after-birth plan. There are many, many decisions that have been and need to be made, some that have really caught us off guard or never would have occurred to us to think of. As hard as it is, we’re grateful to be making them for two main reasons:

1. If we don’t lose her beforehand, we’ve been told we may only have minutes with Alva when she is born. Making decisions and expressing desires now will help us cherish whatever time we may get with her. 

2. We know that there are only so many opportunities we’ll have to be a good mom and dad to Alva while she’s with us. As hard as it is, we’re trying to embrace these opportunities to be the best, most loving parents we can be for our little girl. 

We had about a zillion questions going into our meeting, but there was one that I was most nervous to ask. We’d been assured at the time of our diagnosis that our baby was not currently experiencing any pain or suffering. But I was just twenty weeks pregnant then. My fear was that that might change. 

It was a huge relief when we learned that the answer is no.

As we’ve continued to share Alva’s diagnosis, we’ve been asked a few times what our plan is. The answer is twofold and pretty simple, really:

• Surrender control while praying for a miracle. 

• Embrace that Alva is here with us now and show her the most love we possibly can. 

Teach us to number our days, that we may gain a heart of wisdom

-Psalm 90:12 NIV

As someone who’s prone to planning and worrying, the verse above has not been an easy one for me to grasp. But God has been at work in my perspective during this time. When we learned that Alva’s days were likely to be short in number, and that most (if not all) of them will be in utero, we very quickly wanted two things: First, to find a sense of peace so we can be present while she’s with us. Second, to grab hold of whatever joy we can share with her. 

What I didn’t expect is that we would find an abundance of both. 

God has given us more peace in this journey than I could have imagined possible. That’s not to say it’s been easy—each day still holds a lot of heartbreak as we emotionally and practically prepare. But we know whose hands this situation is in. And maybe I shouldn’t be too surprised that surrendering has brought a sort of calm–after all, God is not the author of chaos, but of peace. 

As hard as it is for us, there is also a peace knowing that our daughter could live a near-perfect life: All she may know before going up to heaven is how much we love her. That has become our goal, and that goal has allowed us–even encouraged us–to feel joy each day. 

We tell Arlen he’s really upped the ante of showing Alva love. He talks to her, picks dandelions for her, and puts heart stickers on my belly to tell her how much he loves her. A few times when we’ve needed to get on him for playing too rough with Jonah, he’s run over to me, put his hands on my belly, and said “I won’t knock you down, Alva.” Or “I won’t throw balls at you.” (These are very loving words from a three-year-old.)

We tell him that she hears him and knows what a good big brother he is. We tell him these things as much as we possibly can (and he sure gives us plenty of opportunity!). One of the things that continues to be the hardest is watching his enthusiasm and love for Alva, knowing that he likely won’t actually meet her before she goes to heaven. We’re not sure what his processing will be like, but we hope he remembers how well he’s loved her during this time, and that she knows it, too. 

We know we’re still in the midst of this journey. We’ve got a lot of hard things behind us, and there’s a lot of hard looming ahead. No matter what comes, though, we’re confident in this: Alva’s diagnosis does not change who she is to us. From the moment I found out I was pregnant with her, I thought, What a gift. And we continue to think that same thing, even after the diagnosis, even when we see her via ultrasound, tears flowing, not knowing if this is the last time we’ll see her alive. The same thought still comes and will always remain of our daughter:

What a gift. What a gift. What a gift. 

Please continue to pray for:

• A miracle of complete healing for Alva

• That our family could continue to show her as much love as we can

• That we would embrace even the hardest parts of this journey as opportunities to be good parents to her, and that we would make wise decisions on Alva’s behalf

• Gratitude for all the medical professionals who are helping us in this, and that all involved in Alva’s delivery and after-birth care would show the same compassion and respect we’ve experienced so far