On and off, Up and down...

Such is the life of the NICU. Schedules and plans change every hour. So, Paxton did not have the cath lab on Monday. We were there early and at 2:30 pm found out the cardiologists felt he was too sick to proceed that day. We know they know best and didn't want to chance infection spreading. If Paxton continues to get better, he is scheduled for the cath lab next Monday. Right now he is just trying to get through his pneumonia, and so far it isn't getting worse, but better. We are very, very thankful for that! 

We have also learned to be so grateful for what Paxton has and is going through, no matter what. I know that sounds funny. What I mean is, it could always be worse. In the NICU right now, we are sharing bed spaces with a child who is receiving chemo, a child who was born at 25 weeks, weighing 1 lb. 13 oz., and a child whose intestines were on the outside of her body. We have heard about a child there for 4 days who had no skin, and babies who have all sorts of complications and diseases. It is very humbling everyday. Humbling to see these little helpless bodies and their helpless, heartbroken, and yet strong and hopeful parents everyday. Then you see the older, and some bald, children roaming the halls in their wheelchairs and wagons hooked up to their IV pumps. And those are just the ones healthy enough to be out of their rooms. They should be running around outside, enjoying summer with their families. Just like we wish Paxton was home in our arms and in our days 100% of the time. But even though Paxton has not had it easy, and even after this NICU stay his life won't be free from all of these physical challenges, it's just a reminder that we are not alone, and, life could be worse. Much worse. 

It's amazing how you don't feel any less blessed to have a child that has challenges. We are so blessed to have him. I know our boys are just as anxious as we are to have him home and we truly hope everything will go as well as it possibly can so Paxton can come home and be with us. 

(Some pictures:)

Last week we got to put Paxton in his crib for 2 days. It was fun to bathe him and dress him two nights in a row. (Then he had to go back to a warmer.)

Paxton has had a big development this week: he went from hating anything near or in his mouth, to sucking a binky for the first time, to liking a binky! I can't even tell you how much this simple thing has made all of us at his bedside marvel with joy and delight! To see him doing something so innately normal and that it could sooth him so much is such a comfort! Especially if you saw the extreme it went from. He is making great progress.  I also feel this week (one week of life beyond full term) his little body is stretching so much more normal, and he is actively reaching to hold something. It is so cute and fun! He likes to pull on the ventilator and trach tubes though so yesterday we brought in some little plastic baby rings to hold onto to. Hopefully he will like them!

starting to get more comfortable with things to his mouth, so cute!

being okay with a binky! 

sweet awake

teaching him young :)

Unless anything changes, I'll post next week about the heart catheterization results. Please continue to pray with us as that heart examination will be such a huge determinant for little Paxton's life and future. All our love to all of you.