Thank you

Brent and I can't express our gratefulness for the many cards, e-mails and notes of encouragement we have received. We appreciate the many people who were able to come out the the service. Everyone's love and support were evident. We had a good Thanksgiving and are looking forward to Christmas. Some days are harder than others and I find myself looking at Matthew and Anna Kate and breaking down because they look like Andrew. But, I am glad that we have a constant reminder of him.

Matthew and Anna Kate are doing well. They both have an appointment at the cardiologist next week as well as an appointment at the Pediatrician. I will be sure to post information on their weights when we have them. But, both of them are doing well!

Obituary

Here is the link to Andrew's obituary from the Greenville News:

http://www.greenvilleonline.com/apps/pbcs.dll/section?Category=OBITUARIES&pagename=obittext&searchdate=2008-11-23

Memorial Service

We will have a memorial service for Andrew on Monday, November 24 at 7:00pm. The service will be in the chapel at Mackey Mortuary on Century Drive in Greenville.

In Heaven with Jesus

Andrew's struggles on earth are over. He went to be with Jesus at 9:45 pm. As difficult as this is, it is an answer to prayer. Earlier tonight, we met with the neurologist and learned that about 3/4 of his brain was gone. The doctor told us that he would be be confined to bed, dependant on a feeding tube and totally unaware of anyone's presence. We prayed that the Lord would sustain his life as long as he willed. We were able to hold him and love him for the last three and a half hours of his life. God is a God of mercy and we thank him that he was merciful to Andrew.

I will post the information once arrangements have been made.

Extensive Damage

We will be meeting with a neurologist and others in the NICU mid-week. With the brain, there is no way to know exactly what the outcome will be. The CT scan showed extensive damage. They are going to try to give us some idea of a spectrum based on the damage they see. We know that God is able to do a mighty work-and we are praying that he does. The doctor tonight said it would not be likely that he will be able to walk, talk or even feed himself. Please continue to pray for healing, strength and wisdom.

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.

Update

Well, I wish I could say that things have gotten easier for Andrew, but that is not the case. They started feeding him yesterday and had to stop last night because his stomach became enlarged. They were able to feed on continuous feeds for most of the day before they had a problem and he has been able to move something through his bowels which are all good signs. They may retry feeding tomorrow or the next day. They did a chest x-ray today and his lungs are not in good shape. Today they have had to increase his rate on the ventilator from 25 breaths per minute to 35 and then to 40. He has a lot of secretions and they have started PT every 6 hours. Basically, they tap on his chest to try to break up the "junk" in there. The doctor explained that they often give steroids to kids who have lung disease like he does. The steroids help the inflammation in the lungs. But, they also can prevent wounds from healing. And since his incision has opened, they don't want to do that right now. Another difficulty is that he can't transition from the ventilator to CPAP because of the air that CPAP blows into the stomach. So, looks like it is going to be a longer road than we thought to get him off the ventilator. When they were doing his chest x-ray, it appeared that his heart may be enlarged. So, they ordered an echo on him-which I have not heard the results of. He is scheduled for an ultrasound of his head tomorrow. I am praying that it is improved. I thank God that we have not had to deal with that while all of the other challenges have been going on. It would be wonderful if it resolves on its own and a shunt is not needed. Right now, he couldn't get one if he needs one. They were able to come down on his pain meds a little today and he seems to be tolerating that well. So, that is good news. Although I haven't looked at it, they tell me his incision is looking better. Please pray that his lungs improve and that they won't need to go up on the vent settings. They are going to do another x-ray on Thursday. Also, continue to pray that his feedings will be successful and that we will see improvement with the hydrocephalus.

Matthew and Anna Kate went to the doctor on Monday and had a great report. Anna Kate now weighs 6.1 lbs and Matthew weighs 7.10lbs. They are both adjusting well to being home. Like many newborns, they are fussy in the evenings-but other than that-I can't complain. I am very thankful for all the help and support we have been getting. Brent's parents have been wonderful and my mom was a huge help when she was here. Almost every week, I meet someone new who knows about the kids or Andrew specifically and has been praying for them. Last week, I saw the cleaning lady at the hospital. She cleaned my room when I was in the hospital and she cleans the NICU. She asked me how the kids were doing at home and then told me that she is praying for Andrew. I was so touched that she knew his name. A nurse told me that another one of the nurses said his name is on the prayer list at her church. To my knowledge, I don't know anyone who goes to that church-but people are praying everywhere. I can't wait to be able to tell him when he is older about the many things God brought him through.