Welcome to our Caring Bridge website where you can receive updates about our sweet baby girl, Ella.
Over the summer, Ella was diagnosed with a genetic disorder called Trisomy 18.
Trisomy 18 causes a wide variety of life-threatening and disabling birth defects including neurological issues, congenital heart defects, respiratory and feeding problems, and anatomical abnormalities. This news was and is tough to bear as not many of these babies make it to term and those that do have a very short life expectancy. I am currently 35 weeks pregnant, proving that God is good and merciful and our Ella is a fighter and a miracle!
Over the course of the last few months we have learned a lot about Ella's condition. We have had good news and some not so good. I want to share with you a little of the evolution of Ella's condition as testimony to the power of prayer and God's ability to heal and perform miracles. Some of her "symptoms" have stayed the same, some have gone from severe to mild, and some have disappeared completely! Originally, Ella was thought to have legs that were deformed and unable to function. At our next visit several weeks later, the ultrasound showed her legs to be normal and she was kicking like a little soccer player! When we returned home from the ultrasound, I shared this good news with my mother-in-law, who then showed me a text she received earlier that day. A family friend had been praying for our family and suddenly felt led to text that Ella would have full use of her legs! Chills and tears of thankfulness came as I witnessed the healing power of prayer!
Ella's stomach has also been an issue from the beginning. At first, parts of her digestive system were protruding through the umbilical cord and outside her body. Over time, the severity of this seemed to lessen until at about 31 weeks, there was no longer a protrusion but her stomach looked "like nothing the doctor had seen." It was oddly shaped and appeared to have several blockages meaning Ella would not be able to eat after she was born without surgery. Surgery of any kind for Trisomy 18 babies is dangerous and life-threatening. This was very hard news to handle as it brought up some very difficult decisions that we would ultimately face as a family. Again, God has shown his merciful nature and at our 35 week visit (yesterday), Ella's stomach appears "almost normal" and does not appear to have any blockages! I am so thankful to God and all of our prayer warriors that have continued to think of our little girl.
Her heart defects, of which there are several, have also gone from the "severe and complicated," which would have made labor and delivery trying and perhaps unbearable for Ella, to much more manageable. We have now had a consistent diagnosis from cardiologists that her heart should withstand labor and that her defects will not immediately cause her harm. We ask for continued prayers for her heart, that God will heal her body, that the hole in her lower chambers will get smaller or close completely at birth and that the doctors will provide us with their wisdom in how to treat her condition.
We also have known since the beginning that there is a cyst at the base of the placenta to the umbilical cord and that the cord has one less valve than it should. Both of these things make it more difficult for Ella to get nutrition. Until very recently, her growth and development have seemed within "normal" range. At our last visit, it appears that she is receiving less nutrition and the risk for still birth has increased. For this reason, I will be induced on December 27 following a version procedure in which my doctor will attempt to flip her in to the right position (did I mention she is breech? little stinker!).
Ella is currently about 4.5 lbs and has over a week to grow before she meets the world. Please pray for her to continue to grow. Pray for her to put her head in the right position! Pray for my doctor's hands as she attempts the procedure. Pray for Jason and I to have wisdom and compassion as we tell Adriana and Charlie about their sister's condition. Pray for Adriana and Charlie that they will have faith and not be afraid. Pray that Ella meets the world and is able to breath and eat on her own. Pray that we get as much time with Ella as God wills. And pray that Ella's life will be one of comfort and not pain.
Thank you all so much for the love and support you have shown us! We are so blessed to have the family, friends, teams, and church and school communities that we have in you. Your prayers have made all the difference in this very difficult time.
Love you all so much. Please sign up for updates or check back at this website for updates.