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.

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.

Celebrating One Year!

Bec and I were just talking about how hard it is to believe that in a few days Lily turns 1 year old.

What a miraculous run it has been and it's only going to get better.

Bec put together a great video celebrating the journey.

Quick Update

I am sorry it has been so long since I have blogged on Lily. The last blog I set up was shut down when that blog server disappeared (long story) and work has been keeping me busy.

Lily is doing incredibly well. As long as she is fed, she is very happy baby and there are few things better than walking into she and Skye's room and see her smiling up at me from her crib. As Skye suddenly seems to enjoy sleep, Lily and I are now the only two members of the Dawn Patrol. But if I don't get in there fast enough, Lily is peeking through the rails in her crib, saying, "Ky. . . Ky!" trying to wake Skye up.

We had a big breakthrough last week as she finally started army crawling. Just yesterday she got up on her hands and knees by herself and thought about crawling before falling back on her stomach. We'll take the small victories as they come.

The picture below was taken by our friend Callie Shepherd last week and I thought it was too good not to post (thanks, Callie!).