Laura is doing very well here in the hospital. She's here for a bunch of tests and is enduring blood tests, hearing tests, eye tests, and visits from the doctors. We are so thankful for such amazing health care and such great doctors! The cardiac team of 8 was in to see her earlier and we are confident of their good care.
At this point, we are looking at heart surgery in October or November. The doctor doesn't want her going through a winter with possible infection from things like RSV with such a big hole in her heart. Surgery and recovery will be a 7-10 day stay back here at Riley. Surgery should fix the holes and allow Laura to start growing much faster.
Right now Laura is on several meds that help the heart work better and take fluid away that may be causing problems. She will continue on meds after her surgery to help with the myopathy. There is a possibility that she could completely recover from the myopathy. This is what we are praying for. In any case, the most likely prognosis is that she will be able to do well on meds that help to manage the problem.
Thank you all for your prayers and concern and help. God is definitely upholding us with His peace and we are thankful for no more complications thus far. Going through trials is part of life, and this is the next trial God has seen fit to put in our path. We believe that God is sovereignly in control of everything and works all things for the good of those who love Him.
Providentially, the two sermons last Sunday from Galatians first and then Judges focused on 1) the fact that we can know God as "Abba Father" (Abba being the Aramaic term for something akin to "Daddy"). That is a comfort in these kinds of situations, knowing that God is personally involved in every detail and loves us more than we can imagine. 2) Walking in complete trust of God in difficult situations rather than doubting God (Gideon doubted God in the face of enemy armies and asked for two signs to "prove" God would give victory). I'm thinking of these sermons this week and the lessons they teach.
I'm hoping we might be able to go home tomorrow. If not, then Saturday. I'm going to be more nervous than normal of Laura, but must try to live life normally. I am very nervous about open heart surgery on a tiny baby, but everyone here thinks the surgeons are amazing and that things usually go just fine. We can keep all this in prayer.