No More ECMO!

We are off ECMO! 

Ella has been off ECMO since 11 this morning. Dr. Nasirof (surgeon) and the team came in and talked to Matt and I about how they were able to get her off and what the next steps would be. He told us that if she doesn't do well off ECMO he would tell his patients' families that they can't do anything more, the mortality rate of going on ECMO twice is really high. He even said that he has never suggested to a family to go back on ECMO in his 9 years at Sutter. Then he said, BUT when it comes to Ella, she's beaten so many odds that he would actually suggest to put her back on ECMO and go in for surgery on Monday to repair the leak in her aortic valve. She does like to defy odds. I think God is showing a lot of people His power through her.

There has been a significant leak in her aortic valve that they were hoping would go away with the Sano shunt being opened more (which is what Dr. Hill did last night in the heart cath). Dr. Hill told us this morning that it looks like the leak is still moderate to severe even after the cath... we are hoping to postpone this surgery for a while until she gets more stable, but will do whatever her little body needs.

I love that Dr. Nasirof believes in her strength so much. We know she's a fighter, but I don't think we all really realize how much so until a surgeon who does this all of the time says that she is unusually strong. He sat in her room all day long watching all of her numbers asking the nurses to adjust things every so often. He is now going to be spending the night in a pullout bed of a chair that is right outside of her room. How amazing is that? Here's a pic of him sitting outside of her room. Isn't that incredible??

Dr. Nasirof and I had a great conversation about babies with single vents that go on to do great things. He is so dedicated and loves his job, you can really tell. He still calls her "our baby", which I love.

We have made friends with the other family who's baby is on ECMO and have been able to use Google translate more to get to know them better. Eli enjoys playing with their son and daughter and our families pretty much took over the "quiet room" on the floor. They even brought in a TV with a built in DVD player so the kiddos watched movies together.

Eli got to go into the music room today where he gets to hang with other patients or their family members and play all kinds of instruments. They asked him what song he'd like to play and, of course, he requested Life is a Highway from Cars. He sings this song so often that he sounds like a broken record. Ha! It was so cute watching him sing along. I was able to leave him with one of the Child Life workers so I could go with Matt and see Ella for the first time after she was off ECMO.

Eli and I took a long nap together today. We needed it! Matt hung with Ella while we were at the Ronald McDonald House. After we got back to the hospital, Matt told me that one of the music therapists told us that our song was almost ready and he wanted to have us listen to it. This song is a recording of Ella's heartbeat with a song recorded over it. The therapist asked me a couple months ago if we had a special song that we'd like them sing over Ella's heartbeat and I requested "He Will Hold Me Fast". This was the song that we listened to on repeat after the first time that we almost lost her. Matt had already heard the song while we were napping and said I would bawl my eyes out. He was right. It was so special. Then they surprised us with Eli's voice being recorded saying, "I love you baby Ella" at the end. Talk about emotional!!! The things that this hospital does to support its families is incredible. I hope one day to help raise money to help it all continue for other families.

Ella's nurses have been working their tails off. I hope they know how much we appreciate and love each of them. What they see on a daily basis is insane. They are such gifts to us.

So far so good. I will update you all again tomorrow.

Love,
Jillian