Tough News to Hear

They got the results of Andrew's head ultrasound yesterday, and we got some tough news. Andrew has PVL (periventricular leukomalacia) which is a form of brain damage that can be devastating. Periventricular leukomalacia (PVL) is characterized by the death of the white matter of the brain due to softening of the brain tissue. It can affect fetuses or newborns; premature babies are at the greatest risk of the disorder. PVL is caused by a lack of oxygen or blood flow to the periventricular area of the brain, which results in the death or loss of brain tissue. The periventricular area-the area around the spaces in the brain called ventricles-contains nerve fibers that carry messages from the brain to the body's muscles. This was most likely caused by the brain bleed. But, the doctor said he also has it in other areas of the brain that they would not expect. So, they did a CT scan yesterday to see if there may be another problem that is causing the brain tissue to die. We need to meet with the doctors in the next few days. The doctor I spoke with yesterday gave me the impression that the damage was pretty extensive. He said he is at very high risk for cerebral palsy and decreased mental functioning. They said that we really won't know what the damage is until later when he should start walking/crawling, talking etc. What I have read is that kids with significant damage often can't walk or talk.

All of that said-I am brought back to the lesson I am constantly learning in the journey-despite what the doctors say and the tests show-GOD is constant. He is the unchanging piece of this puzzle. Brent and I prayed that we could have kids and that God would enable us to raise them to serve Him. That has not changed and we know that Andrew will be able to do all he things that God has for him in his life. He has touched so many people already. We pray that God will do a mighty work and that he will not see significant impact from the findings and that he will not have lasting complications from his other "issues". However, despite all of the "imperfections" that the doctors keep finding-he is perfect in the sight of God and he loves him and wants only good things for him.

He is feeding and has been doing well with that so far. He is getting a small amount of milk continuously through his NG tube. He has come down a little on his vent settings. His wound is continuing to heal and hopefully in the next week or so, they can give him steroids to help with his lungs.

Matthew and Anna Kate are perfecting the art of crying and screaming. So far, they are both pretty skilled in this area! But, all in all, things are going well with them.

I am encouraged by the many people praying for us and for our kids. This is not an easy time right now-but God's grace is sufficient. I have never been good with "unknowns". I am the type of person who wants to know what the end destination is so I can map it all out. For me, that is the toughest part of all of this. But, God in his wisdom only allows us to see what we need for the moment and promises to give us the strength to sustain us.