Unexpected Surprises

We got up all night last night with Owen to feed, diaper and change our little man. Each time he was alert...ate like a pig...and filled our hearts with joy. I feel bad that he is sick and has to go through such lengths to keep mom and dad from losing his mind...but he is doing it.

The night nurse was very nice. Since she was on all night, she reviewed Owen's records and thinks it is nothing short of amazing the way he is reacting and behaving. She reminded me to be cautiously optimistic because he is very sick...but thinks he is a wonder. The nurse was so nice to him but she had it so dark in his room. She explained that part of the reason his head is so floppy is because he probably has a killer headache (like the worst migraine you could ever imagine). She said she keeps the lights dim, any strong smells or loud sounds at a minimum so that it does not aggravate him. That made perfect sense. His milk intake has been increased and he will be taken off the IV that gives him the sugar water if he continues.

That was the good news....now for the unknown. This morning we headed up to see Owen. They measured the circumference of his head and found that he has not swollen anymore which is good. His billy score (that measures his jaundice)...unfortunately it had increased from 9 to 11.2 so he will need to remain on the blanket. His breathing pulse, temperature and breathing were all excellent. None of his blood tests reflected anything horrible so he is holding his own.

We met with the neurosurgeon shortly after his feeding and it was a reality check for us. He started by taking us to see the different scans of Owen. We had only seen one of these before and even as I looked at it, it seemed like I had never seen it before. The blood fills a large amount of the right side of his brain. My heart hit the floor when he asked us to come with him to see the scans because I don't ever want bad news...I have had my fill. But he wanted to show it to us as more of an introduction to the conversation. Once he got us back to the room he explained that this bleed will most likely cause encephalitis (fluid on and swelling of the brain). Right now he feels that there is a 95% chance he will end up with this condition. One other option he suggested was trying to drain the blood which would involve drilling a hole in his skull and tunneling through a small amount of brain tissue with a tube to remove the blood. He said the procedure is fairly common but the effect is unknown. He said that they have all been researching and debating Owen's condition for days and that his condition is so rare that they cannot find any literature on it at all. So they cannot give us numbers or statistics...it is all "I don't know what will happen". The neurosurgeon felt that with this procedure Owen would have an 80% chance of getting encephalitis. The problem is, they just don't know the advantages or disadvantages of anything because everything is a risk. They just know that the blood and the fluid are not a good thing. The doctor said that until they know for sure if Owen has a clotting issue they would not do the operation because if he did...the blood would only return after it was drained. In which case, it would be better to just leave it. He told us we could talk and we would just take it from there. April and I were both a little quiet and frightened as we let all of this sink in on our way back down to the room. That was going to be the end of this blog....a little disheartening and worrisome....until....

BREAKING NEWS: The nurse came into April's room to tell us Dr. Elmo needed to speak to us and he would be coming to the room so we should stay put. We had just ordered breakfast and were trying to figure out how we would be able to consume it if he said something awful. Dr. Elmo came in with his intern and sat down and said Owen was looking good today. He said that he was alert and eating like a champ. His legs were very strong...his arms could be stronger (but he has also had arm boards and IV's hooked to them for days which makes it kind of hard to strengthen them. He asked if we talked to the surgeon and we said we had. He then went on to say he thought it would be pointless to have the surgery to remove the blood at this point because the risks equal the benefits. The surgery could be risky and the outcome may not be that different. All I was thinking is...scary stuff and started to go numb just listening to the jargon. But then he went on to say that outside of the blood concern, he is a healthy little boy and..........wait for it.........there is a strong possibility that they can send him home soon!!! I think I may have lost my bladder at that point because it was not what I was planning to hear. I immediately asked....what about the blood?...what about encephalitis?...what the heck? Dr. Elmo said that the blood would be a bit of a process to absorb back into the system. While there was a risk of encephalitis...it would be something that would happen gradually and if we saw symptoms we could bring him in. He said he would order regular ultrasounds to track the blood and keep track of possible fluid. If encephalitis occured, a shunt would be needed and he would be readmitted at that time...but right now he is very stable. He explained the road ahead is a long one but we can only take it one step at a time.

WOW! Breakfast tasted a whole lot better than anticipated. I think we both have a little spring in our step....and keep that positive energy coming because it is working and Owen may be coming home soon! HURRAH!!!!! And we will top it all of with some pictures for yesterday. We are heading back up for his 11:00 feeding. They may let him try nursing this round.

His first feeding with nurse Babbles...



Just chillin' with Dad


His first bath



This was his first feeding with Dad. When you use the flash on him, his skin looks horrible. You can see how sore his little cheeks looked from the tubes and tape that were covering his face. All that is gone today.