No storm can shake my inmost calm, while to this rock I'm clinging.
I have not always, in these past few days, felt like I had the energy to pray. I feel God's presence, and His peace. It is the prayers of other people that have carried us. I am astounded to learn how many people are praying for my sweet daughter, Sarah.
I have been having trouble forming my thoughts. Not just here, but everywhere. I have questions for my doctors, but I do not know how to express them. When Lily asks where I am going, or when I will be home, I do not know how to answer. When the doctor asked this morning when Sarah last ate, I knew the answer but blanked on the words. This is one of the reasons that I have not kept up with this blog. I have been out in the waiting room, drinking my coffee many mornings (no coffee in the rooms!!) staring at a computer screen wondering what to say.
We have wonderful doctors caring for Sarah. They are the best. We have been speaking mostly with the NICU team and the Neuro team in the past few days. Sarah's brain needs surgery to relieve pressure. There is already damage.
There is some confusion about what decisions we have discussed and how we have made decisions. The confusion stems from my own confusion. The NICU team, when we met on the Friday after our daughter was born, recommended that we let Sarah go peacefully. They assured us that they could make her comfortable. We resisted the idea, and wondered whether they were basing their recommendation on quality of life concerns or on whether or not she had a chance to live. We did not want to send her for surgery if she could not survive it. We do not want to give her unnecessary pain.
The neurosurgeon, also at the meeting, wanted an MRI. We hung our hope on the MRI. It was not the right thing to do, but we wanted to hope. An MRI was ordered and days later we got a report. The young doctor who met with us showed us some frightening images and told us that the recommendation was that we let Sarah go peacefully. So, we decided to let her go. We thought that the Neuro team had reiterated the NICU team's recommendation. We thought the surgeons had said don't do the surgery. Word quickly spread that we had decided to let her go- though we did not know when she would go since we refused to turn off the ventilator.
As it turns out, the young doctor was a member of the NICU team. When I realized my mistake, I quickly insisted that we meet with the neurosurgeon that we had come to trust. He expressed confidence that this, the first of many surgeries, had a very high chance of success.
Surgery is scheduled for this Wednesday morning at 7 am. We expect that it will take five hours, including time to sedate and prep. We are confident that we have made the right choice. We are praying for our doctors' hands, Sarah's health and our own peace. We are feeling peace. Whatever happens, we know that Sarah is in God's hands.
It feels unnatural to be at peace now. Then I think about how many people I have asked to pray for wisdom and peace for Josh and me. Prayers work. As crazy as these days have been, we are calm. We are tired and I'd be lying if I said we were not afraid. But we are peaceful. Praise God!
Other small victories of recent days:
Sarah is eating more and seems to be tolerating it well. Sarah's ventilator was weaned a few times this weekend. Sarah has charmed everyone who has met her. We are told that she has nurses requesting her care now.
We are asking for prayers on Wednesday. Pray with confidence- God is listening and we have already been uplifted by your prayers. Pray with joy- it is often through the hardest time that we come closest to our Lord. Pray for strength for little Sarah and us. Pray for peace for Lily. Pray for our doctors- especially her neurosurgeon who will be performing the surgery this Wednesday.