Update

Nathan did the car seat challenge yesterday. They put him in his car seat and make sure that he can maintain his oxygen saturation for an hour. Nathan passed! He also passed his hearing screen on Sunday.

Nathan in his car seat.

He got kind of fussy about half way through.

Kaylene, Analisa and Nathan

Becca and Nathan

More Random Pictures

Nathan sleeping the morning after being extubated

Steph feeding Nathan via his feeding tube

Lin bottle feeding Nathan (His first time!)

Steph bottle feeding Nathan

The boys sleeping

They removed all the developmental aids from Nathan's bed
in preparation for him going home.

Kyle holding Jacen

Nathan's new "normal" room

Nathan and Karyn

Nathan and Keri

Photo Shoot #2

Our friend Jonathan was kind enough to come up to NICU and take some pictures of the boys the day after Nathan was extubated. And yes, there are more pictures of Stephanie with the boys than of me. Trust me, you all prefer it that way.

Nathan and Jacen with Lin

Nathan did very well. He was awake and alert through the entire thing. Jacen was another story. He slept through most of it and when he was awake this was his general reaction.



Finally, Jacen had enough and decided to punch Nathan. That's when we decided it might be best to separate them again.

Long Weekend

It was a rather long weekend for Nathan. Friday and Saturday were both very good days. He continued to take 50cc or more each feeding. On Saturday they closed one of the areas in NICU because there weren't enough babies to justify keeping it open. Because of this, they needed Nathan's room for another baby who needed a more isolated room. Since Nathan didn't anymore, he was moved out into the regular area. He seemed to like it. He spent time that day and night looking around and watching what was going on. Dr. Sutter was on call this weekend and she said that with the progress he was making it was likely we would be going home the first part of the week.

Sunday was a harder day. He had several noticeable seizures during the day. I went back up there that evening for his 9pm feeding and he had 3 pretty substantial seizures while I was trying to feed him. In some ways, the seizures are harder for me since he's come off the vent because I can now hear him cry out in pain and fear. I got little sleep that night and called up to check on him several times.

By Monday morning he was absolutely worn out. He was still having seizures but he was so tired he wasn't eating much either. I talked with Dr. C that morning and he said that since his feedings were down, he'd lost weight the last couple of days and the seizures weren't under control we were probably looking at another week or two before we could take Nathan home. Dr. Brown, Nathan's neurologist, came by late afternoon and increased his phenobarbital dosage.

This has actually helped. Nathan's feeding were back up through the night and the seizure activity has decreased to almost nothing again. Dr. C told us this morning that assuming Nathan continues how he is today we will be rooming in on Friday and taking Nathan home on Saturday.

Please pray that Nathan continues to improve and please pray for Steph and I that we can survive the continual ups and downs of this journey.

What a day!

Nathan has had an absolutely fantastic 24 hours! Following his successful extubation at 11:30 yesterday morning, he began breathing on his own so well that Dr. C removed him from the oxygen tent after only 10 hours. The next step in his journey was to take a bottle, which would be his first time to do so. Nathan downed 48 cc's in his very first bottle! That is INCREDIBLE!

Today is a good day! Please continue to pray as God is hearing our prayers!

More Pictures

Kyle holding Nathan after a bath

Nathan with his train sheets

Nathan wrapped up during the 72 hour EEG

Grandpa and Uncle Kelly with Nathan

Uncle Kelly with Jacen

Grandpa with Jacen

Jacen playing on the floor

Meme with Jacen

Lin cleaning Nathan off after being extubated

Nathan's pretty face after extubation

Kyle and Stephanie holding Nathan

Barry and Stephanie holding Nathan
(Barry joined us for the extubation.)

Nathan under his new oxygen tent

God is GOOD!

Nathan did AMAZING during the extubation process! Kyle and Stephanie were able to stand right outside and watch it. He is breathing on his own under an oxygen tent with hopes to only be under the tent a few days.

Our God is GOOD! Pictures will be posted soon...

Extubation

Nathan will be extubated (removed from the ventilator) at 11:30 this morning. Please pray for Nathan, Kyle, and Stephanie during this procedure.

Neurologist Report

Well, the EEG that was originally supposed to last 2 hours ended up lasting almost 72. Dr. Brown had originally extended it to 24 hours but at the end of that time he was still seeing some seizure activity so he extended it so that he could monitor Nathan while adjusting his anti-convulsion medication. The EEG was discontinued Saturday morning and Steph and I were able to give him a bath and change his clothes and bed sheets. After 3 days hooked to that machine Nathan was ready.

The length of the EEG obviously pushed back other things. The MRI that was scheduled for Friday has been rescheduled for 1:00 today. This has also pushed back getting Nathan off the ventilator. That will most likely happen Tuesday or Wednesday.

We also had an opportunity to visit with Dr. Brown about Nathan's condition and long-term prognosis. He was able to review Nathan's EEGs, head ultrasounds and the MRI images. He informed us that, realistically, Nathan will never progress beyond a newborn/infant developmentally. This means that he will likely never be able to sit up, crawl, walk or talk and his cognitive function will always be that of a newborn.

Obviously, it goes without saying that we continue to pray for a miracle for Nathan. Also, please pray for our family as we look to the future and make plans for caring for both boys but especially Nathan once we get to bring him home.

EEG Results

Dr. Brown was able to look at the EEG and confirmed that Nathan is still having seizures. He had Nathan started on phenobarbital to help with the seizures and ordered the EEG continued for the next 24 hours. We'll have a better idea what this means after Steph and I visit with Dr. Brown this afternoon but please keep Nathan in your prayers.

Neurology

We will be meeting with Dr. Brown, a pediatric neurologist, today to get a better picture of what we're looking at with Nathan and where we go from here. He has ordered a split-screen EEG which has just started. Unlike previous EEGs that he has had this one will last 2 hours and will record both brain activity and video of Nathan. This will help them see if any activity they see corresponds to seizure-type posturing.

He will also have a second MRI tomorrow so that they can compare it to the one from last week and see if things are getting better, worse or remaining about the same.

Please keep both of these tests in your prayers.

Ventilator

Well, we got some good news on Nathan today. As most of you know, two weeks ago Nathan had a very rough day which ended in him getting reintubated with a larger tube and his ventilator settings turned up fairly high. Since then, we've been slowly weaning him off those higher settings. We talked to Dr. C when he made rounds today and he told us that if Nathan continues to improve at his current rate we will likely be off the ventilator by this weekend. This is a HUGE step!

Praise God for all the progress that Nathan has made!