Tuesday, December 29, 2009

Weekly Camden update and Christmas time

Christmas morning started out with Camden pooping through his cute Christmas PJs so he couldnt wear them. Doesnt that always seem to happen? So small in the scheme of things, but come on! ;)
He basically just sat at his Nana's feet ( my parents spent this year at our house) watching his siblings. Wanted no part in his gifts, and actually kicked them all away. Once they were opened he loved playing with them. During this season I cant begin to tell you how many times I have thanked the Lord that I had my baby here for his "first Christmas". That was one of the greatest JOYS of this year along with celebrating our Savior's birth and how he came to save us!

Did you know that having Camden NEVER gets boring? ;) The other night we had family over and we were having scrabble wars. Yes, major geeks and we were really getting into it so we were all passing Camden around in between hooking him to feeds, suctioning, playing our turn, breathing treatments, etc. Later that night I had him in his room and my husband brings me Camden's mic key button feeding tube, still inflated with water. Camden either stepped on it, his brother accidentally pulled it out, or he stepped on it, but the hole in his tummy for it was pretty much closed. I dont know when it had happened but it was somewhere in a 3 hr time frame. ( the last time it happened I watched it pop out and I slid it right back in) I got it back in after about 5 minutes of trying and it not budging until I used a thermometer to re open it. ( gosh I really hope his doctors arent reading this ) but it worked and I didnt have to go to icky ER. Camden did great during all this. We normally do not leave extensions attached to it, but we did this time. We just cant do that anymore with him being so active.

His pediatrician brought his RSV shot on Christmas day. I was so sad for him, but glad he didnt realize that I was mean to allow that to happen on that day. ;) She called and was on her way to the hospital and wanted to get it to him, and he needed it. So we did it. He did well and had no side effects.

He is a whopping 18.9 pounds as of today. I was surprised because while he was sick he lost a few ounces. He is still on oxygen during the night so Im not quite understanding that unless the common cold just kicks his butt like this. He does great during the day, but as soon as he goes to bed his o2 levels drop. He sometimes just hangs around 88. We are just giving albuterol here and there again and o2 as needed.

He is tearing up the hallways with his walker and it makes me laugh so hard. So interested in crawling, just still so nervous and not quite strong enough. He just pivots in sitting position and eventually gets to the toy he wants as long as it is somewhere in a 2 foot range.

Happy New Year 2010 to all!!

Monday, December 21, 2009

First sickness

this stinks! ....but it had to happen one day, right?
Sick free for the first 11 mths of his life. I am extremely thankful.
He had fever off and on yesterday which broke on its own and he is very runny so we are suctioning A LOT. Not quite himself but being a trooper as usual. ;)
He has needed oxygen the last 2 nights also. I am hoping we can lower it tonight to .12. He hasnt needed it through out the day.
Gaining weight like a champ. Over 18 pounds now. Loves his walker too. It is taking him a while to get the full hang of it but it is pretty hysterical watching him. I'll have to make a video of that soon.
Not getting anywhere in the oral eating department and with being sick, I havent done much of anything with him in the last few days.
Looking forward to my baby celebrating his first Christmas! Thankyou, Jesus.....

Saturday, December 12, 2009


So I took Camden in for an xray today. Lately he hasnt been himself, but it is off and on. Not his normal happy/active self. He hasnt been sick, no fever, secretions normal....Been going on for maybe a little over a week and I kept wanting to call, so today I finally did. I just wanted to make sure he didn't have any lung/diaphragm issues going on. Everything looked ok, so Im not sure what it is. I felt kind of silly, (of course relieved though!) when I got the call that the xray didnt show anything. ( does that make sense? ) He has been wretching much more since his surgery, but that could be from the nissan wrap. I wish he could tell me how he feels. Poor little man =( He seemed more himself today, so we shall see.

A few updates =)
we have worked up to 112 mls an hour and he gets 180 mls, three x's daily and 560 mls continuous feeds through the night.

We are fortifying the breast milk and formula and he has reached 17.11 so finally gaining again!

Thursday, December 10, 2009

Got oral aversion?

thought Id share a little clip of our oral aversion world. This video is mild. ;) He sometimes goes into screaming fits and wears himself out. The OT came last week and she is wanting to help in the oral area. It did not turn out so well, but we must keep at it. ( as much as I want to just run away from it at times! ) He usually hates the highchair, associated it with food, so I am putting him in it more. Today I just dropped a spoonful of applesauce on it and he wasnt happy. I made him taste it ( you wouldve thought I gave him straight up lemons ) then dipped some toys in it. He basically "ignores" the toys. lol Wont touch them with food on them. After a about 5 minutes I cleaned it and put clean toys on it. Then he was a little booger, happy in his highchair again. I want so badly for him to eat one day, but it is hard to watch him get upset. I feel like Im torturing him! ;0s

Thursday, December 3, 2009

It's official

The medical supply company just called and asked to come pick up the ventilator. It is really that time. Camden is off "life support" all together. He was on this vent for the first 9 months of his life, and now it is really over. It has been almost a month since he has been totally off the vent, and he hasn't needed it again. I am so very, very thankful to God at this moment....

Right after he was off ECMO

After trach surgery

Tube free!!! ( well if you dont count a trach as a "tube" ;p)