I just wanted to post some updates and ask that you continue to please pray for Miss Grace.
I spoke with a neurosurgeon today, who basically gave me the only positive news that we have received since Grace's diagnosis. Let me preface this by saying that I am a very realistic person. I am also a planner. Throughout all of this, I have wanted and continue to want to prepare for the worst possible outcome. My faith allows me to believe in miracles and to have hope. But today, I received reasons to believe in miracles and to have hope from a medical perspective.
The neurosurgeon basically said that because Grace is and will continue to develop throughout the remainder of my pregnancy, we will not know for sure what we are dealing with until after she is born (she will have an MRI after she is born to determine exactly what we are dealing with). He also said that Grace's encephalocele is small, and it contains a small portion of her brain, (her cerebellum) as well as cerebrospinal fluid. He said that the amount of brain involved in the encephalocele can change, meaning the amount can get smaller or it can get larger as Grace develops.
The current plan for Grace after she is born is to have surgery to repair the encephalocele, and most likely to have a shunt to correct her hydrocephalus.
The neurosurgeon said that Grace could have up to normal functioning (today was the first time I have been advised of this possibility). His advice was to prepare for the worst, but to hope for the best. Now I know--from a medical perspective--what the best could be.
Please pray for the best outcome...
-that the amount of Grace's brain involved in the encephalocele will get smaller, even that no amount of brain will be involved
-that the part of Grace's brain that is involved in the encephalocele will be functioning
-that Grace's functioning will be normal
-that our God will heal Grace, that He would continue to fulfill His purpose for her life, and that He would continue to draw us and others nearer to Himself
Thank you so much for joining us in prayer for our baby girl. We are very thankful that you would choose to pray for us and to love our baby girl. Thank you is not enough.
I am thankful for Grace's medical "team", reasons for hope, the prayers of so many family and friends, my supportive husband Chad, and of course our very special baby Grace. We are so blessed.
Please also pray for us as we have another appointment with the ADU tomorrow. I know we will have another ultrasound (!!!) and will meet with the palliative care team. I'm not sure what else our appointment will involve.