"Independence Day"

I'm going to steal a line from a friend of ours (Thanks Erin!) and call today Lila's "Independence Day," for reasons other than to celebrate our nation's independence. Today we are celebrating Lila's first full day free from hospitals, monitors, tubes, doctors, etc. It was a wonderful day. I don't think the Fourth of July will ever just be another holiday for us. Lila spent the majority of the day sleeping while we entertained Brody (or maybe it was the other way around). She made her first trip to the Giant Eagle and spent her first afternoon by the pool at my parents' house. I don't think she was awake for more than 20 minutes, but it was so nice just to know that she was right there with us. She slept right through our mini fireworks display. I think she has been desensitized to loud noises already between having to put up with Brody yelling and screaming and the dogs barking all the time! 

Here are some pictures from last night when we watched the "fireworks in the clouds," as Brody kept telling us, and from today. 

Brody and Lila with their Aunt Amy and Uncle Craig:

Brody kept stealing Uncle Craig's hat!

Brave Brody jumping in the pool from the ladder!

Lila slept well last night, although I had to wake her up to feed her which made me a little nervous. We've added some extra feeding sessions during the day so I feel like she is getting enough volume to let her sleep longer at night. She continues to do well with the breast-feeding, but it is obviously much more difficult to know how much she is taking when we aren't using bottles. The surgeon did tell me to treat her like any other baby when we took her home and feed her on whatever schedule worked for us. A home nurse will be coming 1-2 times per week to weigh her starting early next week so hopefully we will know Monday or Tuesday if she is gaining weight. We also have our first visit with our pediatrician on Wednesday so we will at least see by Wednesday how she is doing. We also have a visit with our surgeon scheduled for the end of the month as a follow-up. I think Lila will be followed for at least a year - we will find out more specifics at that appointment with Dr. Burns. 

Just so that everyone can see the progress and changes Lila has made in less than 4 weeks, here is a reminder of how she looked when she was about 12 hours old:

And here she is tonight, after her bath (not too happy at first):

You can see how small her scar (if you can call it that) is. It actually just looks like a regular belly button, if not just a little bigger than normal. Dr. Burns did an amazing job. The bandage is just a regular band-aid covering where they removed her central line. We can get rid of that in the next day or two. We do have 1 picture of her right after birth with her intestines showing which I debated posting, but decided against. If anyone really wants to see it, let me know, but, for Lila's sake, I will keep that non-public and let her decide how much she wants to make that picture public when she is older. The size of her actual defect (the hole in her abdomen) was about the size of a half dollar, a relatively small defect according to the nurses. She did have a significant amount of bowel outside, but that was the only organ that was out. I am still amazed how the doctors were able to fit all the bowel back into her tiny belly. We are so thankful that everything went as well as it did. Thank you again to everyone for all your support and prayers - they truly made all the difference.