
Now for the shocker. Little Lilly has been having a rough time so far. The doctors have been a little concerned about a few things they have noticed and decided to do a little poking around, literally. Lilly has been pricked over and over and has little bandaids all over her. She has had both her heart and her head ultrasounded. As the doctors feared they found some problems with her heart. A few holes to be exact. Fortunately she has a very strong heart beat. Lilly has been unable to keep her temperature up and has had jaundice(not sure on spelling). This means she's had to stay in the nursery under a special light and a heater and has been off limits to everyone but Mari and I. She is also a little floppy. Along with that she also has a little slant to her eyes, some extra skin on the back of her neck, and her pinky fingers have a little curve to them. The test results won't be back until next week but the experts are telling us down syndrome. Yeah. Take a minute to soak it in. It took us a few days.
Mari and I have been having a tough time with people telling us that Lilly isn't perfect. I don't feel like for me there is any way to understand why Lilly is the way she is. Not now anyways. She is what she is. But, what is she?

She is beautiful. She is a quick learner. She is very independent already. She isn't very fussy at all. She has been amazing everyone with how well she is eating now. And to be honest, I think she is all of the nurses' favorite.
Lilly pad has been getting the hang of this eating thing. She is getting very good at breast feeding which is better than a lot of babies. She has lost only a couple of ounces of weight and even gained one back already. The Dr said she is getting less floppy already. Our one main concern is her heart right now. We need to meet with a cardiologist next week to learn a little more and get a better picture of her heart. She may end up needing surgery but maybe not. One thing we've come to realize over the past few days is that her heart is something to worry about, not her down syndrome.
The other day I put together a post on Lilly's mom and how amazing she is. Well, I was way off. I easily undersold her by a hundred times. I don't know how she is still going with so little sleep she has gotten since pushing a baby from her body. Actually I do know, she is in love with little Lilly and is going to be a kick-butt mommy.

The last thing I wanted to mention is the team that has come together to rally behind Lilly. Her grandmothers are going to have a nervous breakdown if they can't get their hands on Lilly soon. Her grandfathers are there for us for whatever we need. Her aunts and uncles have been amazing as well and have been super supportive. We have an amazing pediatrician that we've got lined up for her as well. There's also Rebekah and her mom Judy that are long time friends of mine. Judy has a son with down syndrome and they have already come to visit Lilly and do a little counseling with us.
So, from now on, only tears of joy are allowed because we have a lot to celebrate and be thankful for. Lilly is going to make us super happy and we are already very proud of her.
As her very wise uncle Michael(13 years old) said, "What's the big deal?"



















