Lily: Champion

Okay, I just had to add this video. One afternoon as we sat frittering away time in the hospital room last weekend, she and I started bantering back and forth. I'd say something, she'd jabber something back. For someone who had just had her sternum sawn open and her heart restructured, she was in amazing spirits. This was literally a first take and it is way too good not to post.

Home!!

Things have moved really, really fast the last few days. Monday morning, the nurse practitioner walked in and said, "Time for her wires to come out. When they are out, you have 4 hours of observation and you can leave."

Bec and I were stunned. We thought we might get out Monday, but we were thinking it would probably be Wednesday. A few hours later, Lily had an EKG, then a cardiac echo-and then we sat for a few more hours waiting for the results. Then at 5:45pm, the nurse practitioner walked back in, "One of the cardiologists has looked at her echo. Her heart looks fantastic. Your nurse is finishing your release paperwork."

Around that time, Dr. Donofrio walked in. It was one of those flashback moments-when Bec was five months pregnant with Lily, it was Dr. Donofrio who broke the news to us regarding Lily's heart condition. As she stood bedside with us, she said, "This is amazing. I cannot recall a baby ever recovering from the Fontan surgery this fast. It's amazing."

So I dropped Bec and Lily at the airport this morning. They are already home. I have business here in DC for a few more days then Sunday, Skye and I will drive home together. What a miraculous last few weeks it has been. We're not totally out of the woods yet, but the highest hurdles were the three surgeries and as amazing as it sounds to me, all three are done.

I couldn't resist adding this video. Lily loves listening to music in the car with me and she loves this song by Aaron Shust.

Tubes are coming out!

The nurses just gave Lily her morphine. In about 15 minutes or so (about 12:35pm EST), her chest tubes will be pulled. Unless there are any major hiccups over the next 24 hours, we're out of here tomorrow afternoon!

Photo and Video of Lily

Here are a few videos and photos.

The other day, Lily was just hanging out. Note the relaxed style. The crossing the legs thing just started in the hospital:

Yesterday, mom and dad came by to see her:

Quick update

Dr. Jonas just swung by to see Lily. Again, very upbeat and thinks things look so good he is confident her chest tubes will come out tomorrow. And he said, "If they come out tomorrow, I don't see why we can't have you out of here by Monday afternoon."
This is just unbelievable. We were told to expect 2-3 weeks recovery here at the hospital.
But as I noted a few days ago to friends, Lily is healing so fast it's as if we are watching it happen before our very eyes.

Saturday at DC Children's

It's a slow day here at DC Children's, made even slower by the fact the cafeteria does not open until 7:30am instead of 7 on the weekends. And trust me, after a night spent either on the couch (think 5 feet long, 24" wide) or in the chair (that works against you every time you shift), Bec and I needed a gallon of coffee-apiece.

It's been a good last few days. Very much routine at this point: meds given, IV lines cleaned, x-rays taken at 6am every morning, fluid/food intake jotted onto dry erase board, chest tubes drained, "muck" measured. Lily is very happy, chatting up a storm with the nurses she likes. She took a particular shine to Craig, a young black nurse who is new here in heart and kidney. The other night they were talking up a storm at 3am as he changed her diaper and took her vitals.

Several of our weekday nurses came to say goodbye to us yesterday-"We might or might not see you on Monday!" So, we're trying not to get our hopes up, but everyone is indicating we are close. When she first came out of surgery, Lily drained over 250cc's of "muck" from her chest cavity over the span of a few hours. Over the last twelve hours, she has only drained 40cc's, so we are very much headed in the right direction. When the tubes dry up, we are out of here.

I will try and get some photos and videos up later. There is no wireless Internet here, so all updates have been off my iPhone and it refuses to let me upload from my Photos.

Moving Fast

As I sit here with Lily in my arms, I am amazed at how fast things are moving. I just chatted with Dr. Jonas at length 30mins ago. He already wants to know how we plan on transporting Lily home. He wants us to fly she and Becca home so we don't get stuck on the road if complications arise.
We were moved (rather suddenly, actually) out of intensive care this afternoon to the heart/kidney wing. Next step is checking out. I still think we have another week here and there is no rush. But it is amazing how fast she is healing.
I know Bec and I are feeling more relaxed, that's for sure. I got out this afternoon and stretched my legs for a run in the rain.