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.