We have been here a week now. Hundreds of offers of help and promises of prayer later, we are relatively peaceful. A few notes on recent days:
Sarah is on a ventilator. She cannot breath effectively on her own. A few days ago we were assured that she was becoming more dependent on the vent every day, when they hoped to wean her off slowly. Yesterday and today showed improvement. We cannot say that the trend has definitively changed, but we note hopefully signs of progress.
Sarah's little heart seems to be working well. It has to work harder than it should. I still have questions because I do not clearly understand. For now, it looks OK, though enlarged, and it is stable.
Sarah was started on food yesterday. She seems to be tolerating it relatively well, but we do not know for sure yet.
Sarah has been looking at us. It seems to me that she has begun to focus her little eyes on things, sometimes us. Josh took a beautiful picture of her looking right at him yesterday. She is a normal, sweet, precious little newborn in most ways. If you put your finger in her hand, she will grab it, though her fingers are fused together, so it looks like she cannot. If you sing to her, she cheers up. She likes to be held and talked to and swaddled up tight in her blankets.
Her brain was damaged by pressure. The MRI images are a little scary. She has spinal fluid that has not been able to drain properly caught in the front. We will talk to neorology tomorrow and hopefully get a clearer idea about what is happening and what, if anything, can be done.
A week ago, we were faced with an enormous amount of information, most of which felt new to us. We were asked to consider how aggressively we would like to try to find solutions. Surgical options yet unclear, we were given the recommendation to let her go peacefully.
Sarah was baptized. Our wonderful pastor came all the way from Leesburg to bring her this beautiful welcome into the Church.
When Sarah was born, the whole world seemed to us to be in uproar. There was an impressive storm which lasted for days. The first we saw of the sun, was just after we heard from the doctors with their disturbing recomendations. Later, Lily came to the hospital to visit. She spent her time in the waiting room drawing pictures. Lily brought us a beautiful picture of her baby sister, Sarah, under a rainbow. Josh first noticed and described this sequence.
"God said: This is the sign of the covenant that I am making between me and you and every living creature with you for all ages to come: I set my bow in the clouds to serve as a sign of the covenant between me and the earth" Genesis 9:12-13We are praying for wisdom, peace and joy. We are praying for Lily and Sarah. We are praying for our doctors.
There have been many small moments of revelation and hope. I'd like to share them, but for now, I miss my daughter.