When we went to bed last night, Nicole and I were so exhausted from the setbacks and frustrations of the previous two days. We needed something to lift us up. We needed 24 hours without a crisis. Twenty-Four hours later, we are almost ready to exhale a little bit. Evie has made good progress. Her blood pressure has remained very good--to the point that she is on a minimal dosage of medication. With that the care team has been able to drain off much of her excess fluid. Though I hate to say it about my beautiful baby girl, her appearance since the surgeries has been grotesque due to the puffiness, paleness, and the extensive machinery that supplies her life. Now that she's down over 600ml and has some pinkness back to her complexion, she's beginning to resemble herself again. So a whole day without crisis and a notable improvement to her appearance has been a big lift to Nicole and I. More importantly, this is good for Evie. We will never be able to attempt to wean her off ECMO without draining her fluids and stabilizing her blood pressure. We're now well on the path to doing that, but do note my word attempt. There is little way to predict if and how well she will be able to come off the machine. Only time will tell.
I know that many of our close friends who are far away feel helpless right now as they are not able to be with us. We want you to know that though separated by distance, your prayers and encouragement have helped. We also are very moved by the kindness of our local community; the seminary, university, and our friends here in Chicago. I am told that frequent evening prayer services have been held at North Park to remember Evie. Students and staff gathered to pray through the Psalms. I cannot think of anything more appropriate. Just as our family has experienced the gambit of emotions; elation, betrayal, gratitude, and anger... so do the Psalms reflect the full range of our human experience. We offer to God thanks for the blessings we are visited, but we also offer to God our desperate and furious laments. God is big enough to take what we have. We have been reminded of what the Apostle Paul says, that when we feel like we cannot pray the Spirit intercedes for us. Additionally helpful was the reminder from a friend last night that even the Lord Jesus felt abandonment, sadness, and anger and it was not at all wrong of him to do so.
Many people have demonstrated and pledged their desire to be a real tangible help to us. We've been blessed by deliveries of clean laundry and snacks, comforted by the company of visitors, and gladdened by many other genuine caring efforts. Some have approached us about wanting to contribute some way to help us with the expenses of medical care. A few individuals are currently working on setting up a fund, so if you are interested you can email me and I will hopefully soon be able to point you in the right direction.
If Evie is to ever leave this hospital, there is still a long road ahead of us. For now we are grateful for a boost of strength to get us through another day. We have no other choice but to press on and fight for Evie as long as she has fight in her.