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!

Six Weeks

Wow, it's hard to believe it's been 6 weeks already since the boys were born. In some ways, it feels like just yesterday and in others, it feels like an eternity. Nothing has really changed with Nathan. Still waiting on his kidneys and liver to start working fully. He will be having a second MRI this week to compare with the first and make sure he isn't getting worse. Please keep this in your prayers. We took Jacen to church for the first time today. Below are pictures of that in addition to some other random ones.

Aunt Laci and Amanda visit the boys

Jacen's first trip to church

Steph and Keri after his bath

Steph singing to Nathan

Nathan sleeping

Jacen likes his bouncy seat a little better now

MRI Results

We received the MRI results late yesterday afternoon. It told us a lot of what we already new from the head ultrasound. There has been some tissue deterioration in one hemisphere of Nathan's brain. It's hard to say how much deterioration. The other hemisphere looks almost perfect. He does have a small subdural hematoma. We aren't sure if this is actually blood or a pocket of fluid from the earlier edema he had.

Several encouraging things that weren't evident on the ultrasound before. There doesn't appear to be any bleeding in his brain. Obviously, this is a good thing. There also doesn't appear to be any further deterioration from what we saw on the earlier ultrasound. This is also good because it means he doesn't appear to be getting any worse. Just holding stable. The big piece of good news is that there doesn't appear to be a midline shift in his brain. This would have been an indication of continued swelling and it can lead to not only brain but brain stem issues.

So, what does all this mean for Nathan developmentally. Unfortunately, we just don't know. There is still so little that medical science really knows about the brain. He does have his youth going for him. So few of his neural pathways are actually formed right now. So, we are just going to wait, pray and see what happens.

We continue to draw strength from the words of Jesus in Matthew 19:26, "With man this is impossible, but with God all things are possible."

MRI Done

Well, we're back in Nathan's room after the MRI. It's been an interesting morning. Today was the first time he has been out of NICU since he was born. While he was being wheeled downstairs he spent a lot of time looking around trying to figure out what was going on. He got a little fussy when they moved him from his bed to the MRI machine. He managed to pull his IV out. Other than that, the test was fairly uneventful. He is just resting now and we are waiting for the results. We'll post more info when we have it. We weren't able to take many pictures but here are a few we did get.

Attaching the leads before the MRI
(because the MRI is a giant magnet they have to attach him to their own monitors instead of the one he's normally on)

Placing him in the MRI machine

Settled back in his room.

Random Pictures

Jacen wasn't too sure about being swaddled and put to bed.

Nathan's cord finally fell off
(because of the central lines he had for the first two weeks this took longer than normal)

Nathan in his new Snoopy sheets.

Penguin twins for our twins

MRI Update

Nathan's MRI will be tomorrow. Not sure on the time yet. This will be a rather involved procedure because he will have to be moved from his room downstairs to the MRI machine. This will be done using a special transport bed. Also, the ventilator in the MRI machine won't work for him so he'll have to be bagged during the test. Please pray that this procedure goes smoothly and that the test results are positive.

MRI

Nathan has an MRI scheduled for either Wednesday or Thursday of this week. Dr. C wants to get more information about what is going on in his brain so that we can start planning for any therapy that may be necessary. Please pray for the results of this test and please continue to pray that his liver and kidneys begin fully functioning.

Update

Jacen is continuing to grow. He still has his nights and days confused. The closer he gets to his original due date, the more he stays awake and likes to look around and be talked to. He is such a joy.

Nathan was weighed today. He weighs 7lbs 5oz. We gave him a bath and Stephanie got to hold him for about an hour. He continues to be more alert especially while Stephanie held him.. His new tube has been great for his breathing. They continue to go down on his vent settings. His edema continues to decrease. Also, as you can see in some of the pictures, he is now sleeping swaddled and under a blanket. He was able to sleep for the first time yesterday without the bed warmer and he is maintaining his own temperature perfectly. Please continue to pray for his liver and kidneys to start fully functioning as well as his blood pressure to decrease.

Grandma (Steph's mom) came again this weekend to run errands and watch Jacen. Thank you! Pawpaw and Meme (Steph's dad and stepmom) came to see both boys on Saturday.

Kyle and Keri giving Nathan a bath Thursday evening.

Pawpaw and Meme with Nathan

Pawpaw with Jacen

Meme with Jacen

Grandma feeding Jacen

Steph and Kristie giving Nathan a bath

Steph holding Nathan after his bath

Nathan in his new sheets (Grandpa loves them!)

Jacen in his bouncy seat (He still isn't too sure about it)

UPDATE

Nathan has had a pretty calm Tuesday and Wednesday after his rough day on Monday. Late Monday his vent tube was switched out for a larger tube.

The bleeding in his mouth and stomach have stopped, but he is still having a small amount of blood suctioned from his lungs, most likely due to being re-intubated.

Nathan's blood pressure has been good the past two days and he is resting comfortably.

Thank you for your continued prayers, thoughtfulness, and kindness for this family- Enjoy the pictures of Nathan's clean little face!

Saturday

Monday

Tuesday

Rough Day

Nathan is having a rough day today. He breathing is labored and he is having some bleeding from his mouth as well as his lungs. They have suctioned his lungs in efforts to reduce the bleeding. The doctors and nurses are not sure what the source is or reason for the bleeding.

Please lift Nathan up to God and don't forget about the prayer pager- (806)721-3126.