If you don't want to read this Momma's honesty, then don't read this post!
First of all, I just want to ask that you continue to pray with us as we prepare for Grace. We are praying for wisdom with decisions and that we will make the right decisions for our baby girl. I've written it before, but the amount of responsibility we feel for her life is indescribable and overwhelming.
I had a doctor's appointment with Dr. B yesterday. Stats: I've gained 16 pounds total, we measured 30 weeks, and Grace's heart rate was in the 140s. Everything looked good.
Our minds are set on Grace's quality of life, and this is what we are trying our best to base our decisions on. Because everything is really unknown, we are basing these decisions on what we know from Grace's medical team: the doctors, nurse practitioners, and nurses. We learn more and more with each ultrasound, although we won't really know everything we need to know about Grace's quality of life until she is born. I hope I'm making sense!
During our meetings with our palliative care team, we have been discussing doing everything for Grace versus no heroic measures for her. Our thoughts are if Grace is probably going to have poor quality of life, then why would we do everything? Why would we do everything to keep her alive just to be alive, living and breathing? I realize for some, this is quality of life. This is very much a personal decision, but for us, just living and breathing is not quality of life.
So, doing everything means having Grace via C-section delivery, having surgery to repair the encephalocele after, and anything else that Grace will need to live. It is so unknown. No heroic measures means we can try to have Grace via vaginal delivery, not having surgery to repair the encephalocele if it will not improve her quality of life, and taking her home as soon as possible probably with the support of home hospice. There are also other variations and decisions to make for either of these options.
I guess I feel like I am ultimately deciding between an unknown life possibly full of suffering, or merciful death for my baby. Just writing that brings intense emotion and many tears. Feelings of guilt and selfishness live there also. Please pray with us as we will live with this for the rest of our lives. Sometimes I find myself thinking this will all be over soon. But the truth is Grace will always be with me for the rest of my life, either in her life or in her death. We continue to also pray for a miracle, and for healing for our baby girl. My whole life has been changed by Grace's precious life.
"Forever, You are the God of my story. Write every line for Your glory."