Before We Meet

A final update before Alva arrives

It’s been a week of lasts in many ways. This will probably be my last update before we meet our daughter face-to-face, hopefully on July 23. We had our last scheduled appointment with MFM specialists early this week. That gave us our last opportunity to see Alva via ultrasound.

We were a little surprised to learn her growth has slowed. She’s been in the fetal growth restriction category since our 20-week appointment, but it was mostly due to her head size. All along, her little body had been growing at her own steady pace. Now, everything is measuring quite small, putting her estimated fetal weight in the first percentile. 

My placenta and umbilical cord are measuring and functioning exactly as they should be. Being two people with very limited medical knowledge, Garret and I were confused, then, as to why Alva’s growth had slowed. 

Our first question for the doctor was if this is a sign of decline.

The answer is maybe. 

This dip in her growth could just be a symptom of the underlying reason Alva has HPE. Trisomy 13, for instance, has associated growth restrictions, and apparently so do several other genetic mutations that could have caused her diagnosis. Her body may just not be receiving and processing nutrients in the way a healthy body should. 

We don’t actually know the underlying reason why Alva developed HPE. When we first got her diagnosis back in March, we met with a genetic counselor who described a whole range of genetic testing we could do to get an answer. He laid out the risks and benefits associated with each one. He listened to our concerns, hopes, and goals, and affirmed our choice to only do the least invasive test, a blood draw, while Alva is alive inside me. 

At the time, our team was confident that the test would come back showing a positive result for Trisomy 13, which is the most common underlying reason for HPE. In fact, when we left after that first appointment, our impression was that it was the only reason. 

But seven days later, we got a call from our genetic counselor. The NIPS test had come back negative for everything. According to those results alone, nothing should be wrong with Alva.

It was a hard and frustrating result in many ways right away. But we did know at the time that no matter what could have been found, it wouldn’t have changed the prognosis for Alva or the care we could give her. Which is a huge part of the reason we decided not to do more invasive testing—the risk to Alva outweighed any benefit to her. 

We’ve come to a greater peace about not having an “answer” since then, but it has in some ways added to the unknown of this journey and what we can expect. We have yet to meet a specialist who can count on more than one hand the number of times they’ve seen alobar HPE. And without anything more to go on in Alva’s case, there’s just not enough information for our team to say whether her slowed growth should be considered a sign of decline. In turn, it was difficult for them to say whether we should consider inducing before the 23rd. 

In the end, it was suggested that if we were anxious about induction being over ten days away still, it would be fair for us to decide to induce early.

We long ago decided not to let anxiety rule our decisions in this journey, so we are continuing to wait. And continuing to trust. 

The “Bedtime Bible Time” verse we’re memorizing with Arlen for the month of July was impeccably timed for our family. There’s something about Isaiah 41:13 that, when recited with all the gusto of a three-year-old boy, just emboldens me.

For I am the Lord your God who takes hold of your right hand and says to you, Do not fear,  I will help you.

-Isaiah 41:13 NIV

A big prayer request this week is that we can continue to make positive memories as a family in these last days, even though emotions will be running high. We fit in an early birthday party for me and Alva last weekend when Gammy was in town. Arlen gleefully helped my mom make one of my favorite childhood cakes and frosting. It was a very celebratory affair. I love that the photo below will always remind us that Alva never had a dull moment during her time with us on earth—her brothers are making sure of that!

If you are reading this, we want to thank you. Thank you to all of you who have been with us in this journey, praying for us and our daughter, and helping us cherish her life in the best way we possibly can. Support has made a huge difference during this time. And even if you feel your involvement has been small, just know that even by reading this post, you are taking part in Alva’s life, and that means a great deal to me and my family. 

Please pray for:

• Miraculous healing for Alva—that we would be dumbfounded with a healthy baby girl when she arrives!

• Our upcoming conversation with Arlen about Alva’s diagnosis, and for his sweet heart as he processes what’s likely to come

• Induction to go smoothly 

• Fear and anxiety of all the unknowns to not take hold of us

• Peace and joy to prevail between now and the 23rd. We want to be able to savor the last days we have with Alva safe in utero as a family.

• All the plans to get loved ones here to meet Alva to come to fruition