Thursday, November 4, 2010

Day 4

Today was day 4 of him being alive. What a tough life he already has. He is such a strong boy to be able to withstand what he's been through. Not only that the challenges he will have in his life but all the poking and the prodding he has to go through daily. Not EVERYONE could do that. I spent that night at my parents last night so that I can rest and be able to take care of myself. Let me tell you how many times a day I hear from my parents, hospital people, my mother in law and just from people in general 'you need to take care of yourself so you can take care of those boys..' I know this. I'm just so use to doing it all that I try to do to much. We got there about 10:30am or so. We thought we would get there early so we could spend time with our little family and than at 1 we were going to talk to the neurologist. No big deal, right?

We met someone there and decided that we'd take our time spend time with him so on. So I went back with the two people we were with and than since they are close to Alex I let him in and decided to take over the Justin duty. The nurse Ginny told us that the neurologist wouldn't be there till FOUR! UGH! We thought it would be hard to keep our 21 month old occupied for a few hours from 10:30am till 1pm when they were having our meeting. I had no idea. So we decided to stay and went down stairs to eat subway. We ate and talked with our vistiors and my parents said they were coming up there with my grandma Kiyo. So I'm like we'll stay instead of trying to find something to do. 

So the three of them show up when our visitors were leaving. They all go up to see him and I spend more time with Justin. I than find out that the lactation consultant is looking for me because she called me and had been looking for me when I was down getting something to eat. Apparently my son was ready to start feedings by tube but they needed breast milk! I hadn't brought the stuff I had EVEN THOUGH it was very very little they were only starting him off 3ml through his tube every 3 to 4 hours. So I did that and got to Kangeroo care. At 4:10pm finally the neurologist comes down so Alex goes and gets my parents and his mom from the waiting room. Leaving Justin with my grandma for a while. 

So the neurologist said that it looks like there are several parts of his brain that are effected by the damage. We had thought it was moderate to light damage but it looks like it's moderate to severe damage which we hoped didn't happen. So that means that he will have delayed movement and so on. She said she can't tell us if he won't be able to ever walk or anything like that. We can only tell that in time. And part of the brain that was damage also could be why his gag reflex isn't working properly since the brain has to tell you to swallow.. She said in the next week we will be able to tell more! 

He also had 2 dry diapers and 1 diaper that had 3 tsp of pee in it.. Not good:( So she was going to have to cath him. Poor guy. That's update for now..


  1. i am so sorry. I will keep little Austin in my prayers an ask god to make him stronger

  2. Awww. he is a fighter and strong little man. I hope that he keeps fighting this and proves the doctor completely wrong. Hang in there Mama, praying for you all

  3. *hugs* I will keep him in my prayers. Don't listen to EVERYTHING the Dr's tell you. They said my little brother (who also has had hydrocephalus) would never move his legs, eat/drink, etc. and he can do all of those things. Keep your chin up Mama, he's a strong little guy! <3