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.

Continued Progress

Another great day here at the CICU at DC Children's and with it continued progress by Lily.
Bec spent the night with her and said that it was pretty peaceful and when Lily woke up this morning she looked around and asked, "Dada comin?"
During the morning rounds, Dr. Jonas swung by to chat with Bec and she said he was very pleased with Lily's progress.
Later in the day, the doctors began removing some of the lines from her chest and even let her sit on Becca's lap (where she promptly fell asleep for almost two hours).
She's drinking apple juice and this afternoon I fed her some chocolate pudding, her favorite.
I have the bedside shift tonight and Bec is going to finally get some sleep.

The End of a Good Day

Bec and I are switching out nights at the hospital, so she's there tonight and I am about to jump into bed and catch up on some sleep. I am continually amazed at how strong Lily is. Right before I left the hospital the nurses extubated her which is fantastic for the day of surgery, so she's breathing on her own. It was great to hear her voice again, albeit was a little raspy from having a tube in it all day.

Dr. Donofrio swung by and chatted with us for a while. She said the key indicator of Lily healing is the chest tubes and how fast they drain the "muck" from her chest cavity. She said it could be days, it could be weeks, but so far everything looks really good.

So glad this day is over and that it went well.

Success

Lily's surgery is done. We met with Dr. Jonas a short while ago. As I have noted before, he is a very calm, direct man. He says what he needs to and that is it.
He walked in to the consultation room (where we had been sitting on pins and needles for 20 minutes) and said, "It went well and it went exactly as we talked about the other day. Do you have any questions?" We really didn't- I asked about being on the bypass machine for 70 minutes, he said that was much shorter than her first surgery.
We are in the CICU waiting room. Lily is being cleaned up and is in her old room from her previous surgeries. We get to see her in about 30 minutes.
To say that Bec and I are relieved is an understatement.
For all of you who were praying, thank you. The next 24 hours is critical to see how her body handles the new bloodflow pattern and how well it gets rid of the fluid caused by surgery, but Dr. Jonas noted as he left, "If she was going to have any major problems over the next 24 hours, we likely would have seen something during surgery."

Lily is on the bypass machine

Has been for 45mins. Should know something soon.

Praying, sitting, periodically checking how my man Ryan Hall is doing at the Boston Marathon. In the lead last time I checked.

The first incision has been made

Just got our first surgical page: "First incision was made at 8:50am."

Here we go!

Sitting with Ned, his Becca, my mother-in-law and my dad.

We just handed Lily off

Now the waiting game begins. Should have an update in an hour or so.

We're at the hospital. It's 6:05am. Lily is sitting on Bec's lap as we wait to be called back for anaesthesia. It was a short night again. I don't think any of us slept well.

Found myself humming my favorite stanza from We Rest On Thee again as we drove to the hospital. Don't know why, but it seems to be the song that comes to mind as we head to surgery: "We go in faith, our own great weakness feeling/ And needing more each day Thy grace to know/Yet from our hearts a song of triumph pealing/We rest on Thee and in Thy name we go."

Almost there now.

One more day to go

It's been a good day here. Long night last night, though. Lily kept waking up screaming, so I am guessing she was having bad dreams. We spent most of the afternoon hanging out. Bec picked up her mom late in the afternoon and now we're back at the Ronald McDonald House. Bec just wiped Lily down with pre-surgery wipes and I put her in bed with a bottle. Alarms are set for 11pm, 3am and 5am to make sure Lily gets enough fluids. We head for the hospital at 5:40.
The day is almost here.

A nice slow day

We had a nice slow day today. Lily got up and was still a little swollen from yesterday, but that dissipated by noon. Other than that, we napped, I went for a run, we took Lily to the swing set here at the Ronald McDonald house and we had a quiet dinner, just the three of us. Tomorrow is another down day with Bec's mom coming in late in the afternoon. It's kind of nice just to relax and gear up for what could be a long two weeks starting Monday.

Long Day

Up at 6am this morning for a 7am cardiac cath, we just got back a short while ago from DC Children's. A 12 hour day becomes even longer when two hours after we were supposed to get out of there we are taking blood and having to give Lily the other kind of cath as she retained 250cc's of fluid after her morning cath. The poor baby looked like a prize fighter as her eyelids became swollen. Even as we sit here a few hours later, her left eyelid is still looking like it took a few right hooks.

But all in all it was a very good day. The cardiac cath took under three hours and that included the anaesthesia. Think of the procedure as a map of the heart, complete with pictures and a little touch up if need be. Dr. Kanter, who had performed the previous cath on Lily, said her heart looked perfect and he didn't need to do a thing to get it ready for Dr. Jonas to operate on it on Monday. That is great news. Prior to the Glenn, Dr. Kanter had to insert a balloon into Lily's aorta to widen it. Didn't have to do a thing this time.

Around noon we met with Dr. Jonas. He was very upbeat and walked us through the entire Fontan procedure. Oddly enough, the central piece of the Fontan surgery will be a permanent tube that connects the inferior vena cava just underneath where the bidirectional Glenn attached the superior vena cava to the pulmonary artery. That tube is made of GoreTex, the material many top notch running suits used to be made out of-but I digress. So if you think of the Norwood procedure (the first one) as making the heart operational, the bidirectional Glenn (second surgery) regulates the blood flow of the upper body and the Fontan regulates the blood flow of the lower body, thus completing the three step process of rebuilding Lily's heart. It's amazing what guys with a gift like Dr. Jonas can do.

Because things went so well today, we did not have to spend the night at the hospital and get tomorrow and Sunday off. Then it's up at 5am, at the hospital by 6am for the 7:30 surgery slot, the first of the day on Monday.

April 15

We had a great day doing, of all things, the DC tourist stuff. After taking Lily to our favorite breakfast spot on the Hill (Le Bon Cafe), we plopped her in the stroller and took her to see the Smithsonians. She was not a huge fan of the National Gallery of Art, but loved the Natural History Museum and got to pick out a small stuffed giraffe to take home with her from the gift shop. After swinging by to grab some pizza and say hi to everyone at my old job, the American Center for Law and Justice, we headed home.

Tonight we checked into the Ronald McDonald House that is near DC Children's. Starting at 11:30 tonight, we start pumping Lily full of fluids as she can't have anything solid on her stomach for the pre-surgery cath. So Bec's got the 11:30 shift, I have the 4am one and at 6:45am we head to the hospital and will be there all day and overnight. We get Sunday off and then Monday morning comes.

5 Days and Counting

We are in Washington, DC now. Today was one of two pre-surgery days and we spent all morning at DC Children's doing a cardiac echo, x-rays, a physical and blood work. One of the best moments was when Dr. Donofrio ran into us in the hall (she was the very first cardiologist we met with and the one who told us about Lily's heart condition). She couldn't believe how good Lily looked and how big she was. Remarkably, Lily greeted her with a smile, something she does not do with doctors these days.

Tomorrow is an "off" day and as Skye is out with Uncle Ned and Aunt Becca, we're going to take Lily on a walking tour of Washington, DC and seem some of our old haunts.

Friday we are back at DC Children's for the pre-surgery cath and will spend the night there. Right now we know we have one of the two morning surgery slots for Monday and will find out which one on Friday.

5 days and counting. The Norwood was the first surgery, the second was the Glenn and on Monday Lily will have the Fontan, the third and final surgery needed to repair her heart. Almost there.