Yesterday was a great day for Luke. He is a hit at Kosair and everyone that works here stops by to see him. His case is so rare that no one here has seen it...they have seen both issues before, but never both in the same baby...Kristin and I would have the baby with the most complex heart.
One thing I'm not sure a lot of you know is that Kristin and I see our baby's heart every time we look at him. I'm not talking about on a screen or through an ultrasound, but we actually see his little heart. The surgeons left his chest open and put a patch over it to allow room for swelling and other stuff. The patch looks like a piece of saran wrap. It's easy to tell who has seen a baby's heart open before and who hasn't...some of the nurses or students that stop by get very big eyes when they first see it. Kristin and I are so use to seeing his heart that it will be weird when they close his chest and we can't see it. This is the main reason that we do not allow anyone outside us and Luke's grandparents in the room. Not many parents in this world can say they have seen their child's heart.
Luke's lungs will be asked to work hard today. After a great test yesterday, his oxygenator on the ECMO will be turned off and his oxygen in the ventilator turned to 70% for as long as he can tolerate it. If he continues to experience supernatural progress, these settings will stay this way...this is a huge step up the mountain.
As for Kristin and I, we had a very rough day yesterday. One thing we promise to be is open and honest, and honestly, we struggled yesterday. The whole situation hit us both and we felt overwhelmed beyond description. One of the main things everyone tells us it to take care of ourselves, so we left around 7:00pm and crashed at the hotel. It was nice to just be together and to reveal our emotions to each other. We know that God is watching over us, but that doesn't always make it easy. We are going through this test in life for a greater purpose...one which we do not know right now...but what we do know is that God is and will continue to receive glory for His works.
The comments and storys that we hear about how Luke has changed people's outlook on life and how his situation has brought them closer to the Lord keeps us pressing on. Our prayer from day one has been that God is glorified and that people draw closer to Him...that is evident.
Stop by later for a mommy perspective from Kristin.