Before the pandemic set in, I attended my favorite women's conference that my dearest friend puts on for our community through her church each year. At the end of the weekend, the speaker asked us to pray about ‘one step of obedience’ we could take in our relationship with God. I...did not like this. The phrasing weirded me out, and, frankly, that is a dangerous prayer to pray. It invites change and suffering. I do not like to change, or suffer. So it was with much grumbling that I opened my heart up to this prayer, and asked the Lord, “What can I do?” Softly, clearly, I heard the Lord ask me to have another baby. I laughed. And then the pandemic hit our area, so I figured we were off the hook. As insane as it seems to plan a baby during a global pandemic, once Al and I started thinking about having a third child, the more the idea took hold of us. What started as a hilarious suggestion grew into a deep desire. We were able to conceive our 3rd child in early October, endured 18 weeks of intense morning sickness, learned that he is BOY (I would have bet our entire savings this was a girl baby), and settled on the name Francis Benedict. St. Francis is special to both Alex and me, and we decided early on in the pregnancy that he would be a great patron for baby Pyles #3. During the initial 20 week scan, they noticed one of his ventricles in his brain is enlarged. They referred us to a level II ultrasound to double check the measurements. We were able to get that scan done on 2/8. It was during that appointment that we discovered significant abnormalities in Frank’s growth and development, specifically with his heart and brain. I opted for an amniocentesis; the results from that test confirmed what the doctors suspected. Francis has Trisomy 18, and is not expected to live long after delivery. Called, longed for, created, and joyfully loved, our little Frankie B is the sweetest step of obedience either of us have ever taken. This situation sucks. Certainly, we are suffering, and we will suffer more. There is a tendency when faced with suffering to look for the greater purpose or good that will come out of it. Why is this happening? What is the POINT? Friends, Frankie is the point. His life, however much shorter/more different than we want it to be, is the point. He is an end unto himself. He is good. And there is a great deal of grace to be found in that. We will post a GoFundMe when we have it up and running--we are certain Frankie’s care will be beyond our means, and appreciate any support you are able/willing to give. We are praying through the intercession of Bl. Solanus Casey, and will post specific prayer requests with our updates.
Today we went in for another ultrasound and fetal echocardiogram. The echo went really well! His heart now is only showing a large VSD which won't affect his quality of life for several months. The peds cardiologist was happy with what she saw, and said his heart should be strong enough to withstand a normal labor and delivery. We don't have to make any decisions for a long time. It feels good to put that worry down, for now.
The second ultrasound we had today gave us more bad news than good. His constellation of complications leads them to believe he has a condition in which his esophagus and trachea are growing together instead of with a clear separation. His nasal bone is still absent, and jaw is incredibly small. There is more amniotic fluid than normal, and his stomach is also very small (meaning he isn't able to get amniotic fluid through his digestive system like a typical baby his age, which is very bad news). The placenta seemed to be working within the normal range today, but with his severe growth restriction, doc was concerned about it's efficacy long term. While Frankie could make it to delivery, his size indicates a higher risk than we thought for stillbirth.
We are in the same place we've always been---how much intervention do we provide to reach which goals? Only now our goals are much more modest. Is it necessary for us to meet Frankie while he is living? Do we want to sustain his life long enough to have him meet his siblings? Or do we accept his life the way it comes, without grasping at those milestones we once took for granted? So much of the rest of our time with him will be defined by how we proceed from today's appointment.
Here's how you can help us:
1. Pray! Even if it feels like nothing to you, it means everything to us.
2. Help us celebrate the 12 weeks we have left with Frankie en utero! Feel free to write us messages, send cards, or text us to celebrate each week we get to spend with him. If we make it far enough, we plan to have a pre-birthday party for him before delivery. More details on that to come.
3. Donate! Donate directly to our gofundme instead of the caringbridge site. Caringbridge does not release those funds to us and we cannot use them for Frankie's care <3 ️
Here's how you can pray for us:
1. That we have the fortitude to go to work, care of our two big kids, and love each other well for the next 12 weeks. Today this feels... impossible.
2. That all the big decisions about Frankie's care would be out of our hands.
3. For there to be joy in this waiting period we're in. I cannot stand the idea that his whole life might be SAD. What a bummer. Pray for us to be more receptive to joy!
While we appreciate, deeply, the prayers for full healing, we are asking that you please pray for the three above intentions first. We would love for Frankie to be born without these complications--and are asking for prayers for that through Bl Solanus Casey, but I want to share with you why we aren't begging for that big miracle first:
We sincerely have no doubts that God will heal Frankie B. That is the whole purpose of this week (Holy Week + the Easter Triduum) in our faith tradition, and really the point of Christianity in general! Through Christ's death and resurrection, we all have access to the Divine Healer. Death has no power that lasts. He heals. It's Who He Is.
But we have to ask ourselves, what does healing look like for Christ?
We have to accept that the biggest miracle God will work for our boy won't happen before he dies. Jesus has already given us a "fix" for this. He has already given us everything. The promise of Heaven is enough for us. Although we suffer (more than I can say), nothing is wasted.