Friday, February 26, 2016


Sophia's mother posted this today on Facebook. How heartbreaking. Please pray. 

Sophia has yet to wake up. She coughs but has no gag reflex. So on Sunday afternoon we will be extubating her. She can breathe on her own, her lungs and everything are working...But since the bleed injured the brain stem which controls gag...her gag reflex may never come back. Plus the tumor could be pressing on those nerves. 
Without a gag reflex she cannot control her secretions. They will be putting her on everything they can medically to keep her comfortable. Meds to keep her semi sedated and try to control her mouth secretions. 

Medically she is stable now and the doctors believe this is the best time to do it. Otherwise being on the tube longer presents a whole new host of problems.

Of course there is no magic ball to know what her body can do...But without a gag reflex it will likely be a matter of days until she passes...weeks at the most. 

It was not an easy decision...But given her injury she has no quality of life. Plus, the tumor is aggressive and fast growing and without chemo to slow it down she would probably pass soon one way or the other.
This way we can at least hold her. Talk to her, comfort her, soothe her...say goodbye without all the tubes and wires connected.

My arms ache to hold her again.
We are not giving up. We believe God can do a miracle still...But ultimately, though it's hard, our prayer over the past few days has been for His will to be done.

Monday, February 15, 2016

Fighting for her Life

I've been on a hiatus from my blog since New Year's Eve.  My husband pulled through open heart surgery wonderfully, by God's grace. That's a blog post in itself that I've tried to write but felt so overwhelmed, I avoided the blank screen.  I hope to find words soon.

Right now, though, the baby Sophia (14 months old tomorrow) for whom I made the quilt in the previous post, is now fighting for her life. The mother and her parents are dear friends of ours, so this is very personal to us.

Yesterday morning Sophia  was fine, babbling, saying "mama," playing with her feet. Her parents were able to celebrate Valentine's Day together with their little sweetie.

But by naptime she was unable to get comfortable, her mom thought it was nausea, so gave her Benadryl. She fell asleep, though would wake up agitated again. Suddenly she had trouble breathing, then she went limp in her mother's arms .  

The ambulance rushed her to Hopkins and did a CT scan. It showed a massive brain bleed. The blood was filling the cavity where her tumor used to be.  Her platelets were dangerously low. Doctors gave them three options:

1. administer platelets, which would only buy her time
2. do surgery to remove bone to release pressure on the brain
3. hold her and let her go

They  chose surgery. They said the doctors were frank in their discussion: no guarantees she'd survive surgery, and most likely if she did survive, the brain damage would be so severe than little Sophia would most certainly not be herself again.

She pulled through, but it's now a waiting game. Doctors have classified her as "fighting for her life." One doctor even admitted he was praying for her. In this politically correct world, it's rather telling when a medical professional says he's praying.

I ask for your prayers .She needs a miracle .