Heck of a Day... More Like a Week...

The procedure that they said probably wouldn't work... didn't, so we were presented with another option... A heart cath. This will be done tonight to try to open the old shunt (Sano) and insert a stent into it to allow more blood flow to the lungs. They clamped the new shunt and her blood pressure did much better but the sats tanked, hence the need for the cath. The surgery that they presented earlier (fixing the leak in the aortic valve) is REALLY risky, so they are trying to come up with other ideas to get her where she needs to be. So we are hoping to get her into the cath lab soon but it's a little difficult when it's after hours and getting a room for her is a bit tricky since it's last minute. 

Please pray for our doctors. They are having a heck of a day... more like week. They have to endure so much stress. 

We don't feel like God is telling us to go the comfort care route (hospice-type) yet. We feel like we can't NOT try. Ella has come so far and we want to fight for her as best as we can. She has been fighting, so we are too. We are waiting for God to tell us otherwise. 

I have been able to be with Ella a lot more this evening which is nice. Even though I'm standing next to her watching her heart beat in her chest (it's still open), I've found comfort in just being with her. Sometimes she gets a little stressed when I am around, but overall she's ok with me being there. Her stress levels have come down since they closed up the shunt so that's a great sign.

We will be able to see if the Sano opening is all she needs to do better, but eventually, meaning one, two, maybe three months down the road, she will most likely still need that leakage repaired. Ugh... But if she is able to recover with just the cath, then she will be more stable and the mortality rate will go down. Right now it's really risky with a 50/50 chance of making it in her condition. So we shall see. We have been praying for God's wisdom in all of the decisions we have to make and have felt like God has been guiding us through the doctors and nurses. 

Here are a few pictures that caption a small, teeny, tiny bit of the chaos that's going on around here... 

My friend, Callie, got me this bracelet for my birthday. It's been a great reminder to hold onto hope. Look at that little smooshy post-op face 😍 It's been kind of helpful that she doesn't totally look like herself. Makes it all a little easier.

Our nurses requested that Ella has a bow and cute socks on so the Child Life program brought some in!
She cannot wear her cute headbands because of the pressure that puts on her head.
So glad I can hold her hand.

Thursday morning... Trying to wean Ella off ECMO. Lots of amazing people right there!

ECMO team gave Ella a little lamb 💜😊.

Saw this at Target yesterday (Wednesday) and it reminded me of Ella.

The view from most of yesterday outside of Ella's room.

The view inside of Ella's room.

That tall thing next to the nurses is the ECMO machine.

Thank you for continuing to lift us up in prayer. 

Eli is coming down to Sac right now and we could not be more excited. We have missed him so much. It'll be nice to get to hold one of my babies. 

Love,

Jillian