There is a lot of pain here on the 12th floor of the Children's Medical Center. I see parents in the ICU waiting room red-eyed and tired. Extended family members come and go bringing food and support. On Anne Marie's first day here there was an Asian-American family in the waiting room who had a son two doors down from us. I couldn't really tell how old their little boy was because he was surrounded by machines and covered up with blankets, but I'm guessing he was about four. His mom and dad would come and go and his older sisters would sit in the waiting room ... just waiting. On Saturday there were lots of tears and his family members were just clinging to each other. His dad stood by the bedside, shoulders slumped, head down. Early Sunday morning before church I came in to see Anne Marie and the little boy's room was completely empty. No bed, no machines, just an empty room waiting for another patient. Yesterday another patient arrived. So there is sadness here. It's a place where one might wonder where God is. Doesn't He see the pain of these families? Is He here? Is He listening?
And yet, I see God everywhere here. I thank Him every day for the ECMO machine, the terrible machine we hoped to avoid but which is now keeping our baby alive. It's a miracle that God would give someone the wisdom and knowledge to invent such a machine. I thank Him for the nurses and ECMO techs who watch Anne Marie all day and all night. And I don't mean they just sit and watch. They are constantly checking numbers and stats. They are monitoring tubes and connections. They are checking medications and levels of fluid. I thank Him for the doctors who are caring for Anne Marie. Brilliant people who are here day and night. I look past the countless tubes and wires Anne Marie is connected to and see her beautiful face. A combination of all our kids -- Lincoln and Mary Margaret's face, Jack Henry and Lillie's dark hair. I see her perfect fingers and toes. I stand and stroke her little fingers and ache because I love her so much, and then God reminds me how much He loves her. More than I can possibly imagine. God is here. There is no doubt about it. He is here in all this pain. Pain that is impossible for us to understand, but through which we learn to trust Him more.
Yesterday the doctors began to increase the ventilator pressure to try to slowly expand Anne Marie's lung. There didn't seem to be much improvement, so today they were a little more aggressive, increasing the vent from a 12 to a 13 (just a small increase so they don't "blow out" her lung). They did a chest X-ray this afternoon and did see some improvement. It was just a tiny bit of lung that showed up, but it was progress. They also propped her right side up a little bit, and to treat her pulmonary hypertension they gave her some medicine called Sildenafil (perhaps you've heard of it as ... Viagra).
The goal here is to "recruit" (expand) her right lung. All of the numbers they monitored today looked good. Please pray that Anne Marie's lung would continue to expand each day so that she will be able to be weaned off ECMO and be prepared to undergo the surgical repair she needs.