A day in the life....

I decided to take a few pictures of some of our daily routines.

After Luke goes to work, at least one of the kids get in bed with me. This morning (Friday), both did.

We start with a round of meds. Lasix and Aldactone to get rid of extra fluids, Zantac for stomach acid, and asprin to keep blood from clotting around his shunt. We do this twice a day.
Next up is the antibiotics (every 6 hours). We hook an iv pump to his pic line and run them for 30 minutes. With the flushes before and after, this takes about 45 minutes.

On Wednesday, Maddox's feeding tube was moved from his intestine to his stomach. We are now giving him bolous feedings every 2 hours. They take about 30 minutes. We were very happy to hear that he can stay on continuous feeds through the night until he begins feeding on demand. The red back pack holds his feeding pump and bag.

Now that he has food in his tummy, we get to do the baby spit up thing. Luckily it hasn't been as bad as I expected. But we do have to change clothes and blankets a couple of times a day. The next step will be bottle feeding. We have to take Maddox to a speech therapist before we can bottle feed him. When he swallow's the milk goes in the right place, but he really doesn't know what to do with the milk while it's in his mouth. It'll just take some time and practice.

Check out how nicely that scar is healing! It looks great, especially considering it had to be re-opened when he got the infection. The smaller scars on his belly are from the various drainage tubes he's had. Definitely has an outie belly button! (no thanks to the rt lines that were going in there for the first several weeks of life)In between all of Maddox's routines, I still have a vibrant 3 year old. Bailee is a wonderful big sister, and such a big helper. She has been so patient with all of the attention Maddox needs. She often will pull out a game to play or her newest love, polly pockets (thanks Tami and Tressa), and play while I'm taking care of Maddox.

Honestly, her new love is her Ballet outfit. She wears it constantly! Bailee gets to go to dance class once a week with her best friend McKinley. I'll have to get a picture of them together next time. So adorable!
It's a good thing Luke is such an amazing dad and husband! He has been so great about helping with all of Maddox's needs, playing with Bailee, and taking care of things around the house as well. I'm so grateful for all that he does!

Next post.....remember how we've been house hunting this summer?? We're about to seal the deal. Pics and the story coming soon.