My favorite things to do:

....pinching my mom's arm, tearing up the baseboards with my walker, fighting my mom during trach care, sitting up scooting on my but going in circles, round and round, and round, getting hyper over my siblings, ( they are so much fun and I cant wait to see them in the mornings!) blowing and giving kisses, pulling on trach ( I actually pulled it out once and threw it across my crib while my mom was changing it, Im getting fast! ;p) waving bye bye, yanking daddy's beard, and playing with my fisher price mailbox on my play mat! ( btw, my mom loves every bit of this except the trach part =p)

Why arent we gaining this week??? That is the question of the day. =( I just weighed him and he actually lost an ounce this week(now at 18.8) and we have been fortifying all the milk. Guess we'll have to add more. I cant believe how hard it is for him to gain and all the extra calories he has to burn. So, Im going to start adding another tsp to everything, because he is already getting enough liquid.

With the new year I have decided to get super aggressive with the bottle feeding and it is going better than I thought it would. At first I was debating on the bottle, but he tolerates a small nipple over a sippy cup nipple. If he eventually gets good with a bottle and gets over some of this aversion it may be an easy change to a sippy cup down the road. He isnt getting much down, maybe a few mls, but he isnt gagging and is sucking on and off. It is a huge chore and takes time and patience....but every time I just pray that will be the time were I can actually "see" the milk in the bottle slowly going down. He fights a bit, but he isn't crying and will actually play with it at times. I am making it extra thick with cereal so it isnt so runny, dripping straight back to his throat.

I am still pumping but with him turning a year old soon, I am thinking of stopping in the next month or so. I want him to get breast milk as long as possible. It is also a bit emotional for me. I have known he wasn't going to breast feed ( or even bottle feed ) for a long time with his awful oral aversion, but it is really "over" if that makes sense. I havent had my hopes up and I accepted it( as much as you can try to ) months ago, but as I pump less and as he approaches a year old I am sad yet ecstatic. Sad because I feel like I missed so much of the "normal" things with him, but overjoyed that he made it to a year and that I was able to experience Camden's "normal"!!!

My nursing situation is this for now: Every night from 11p-7a and then Wednesdays, Fridays, and Saturdays 8a-4p. I have told them to not send any new DAY nurses and have kept one of my original day nurses who we all love. She knows Camden's needs, Camden loves her, and I dont feel comfortable starting with new people at this point. He just hangs with us all day on nurseless days. The kids love it. That way when Norma does come in I can get a bit more accomplished and know he is being watched. Most importantly she loves Jesus =)
They BAD news is that medicaid is stinking right now. =s Camden has medicaid back up for whatever my private insurance wont pay for and they only paid for one month of nursing, so thankfully medicaid kicked in for the rest. Well, now they say that they are starting to cut my nursing hrs back to practically nothing in a few months.( they even said 2 hrs a day... really? Do they honestly think a nurse will come out for that short of time? ) Well, if he still has a trach that just cant happen, so I'll have to fight that. It just boils down to people working in an office not knowing what a trach is, clueless in the medical field, and people who have never had a special needs child. =( You need an eye on a trach baby. So, hopefully things will work out to where I will have at least 8 hours of night nursing so I can sleep. God will work it out....he always does.
So sorry to vent about this, but I haven't posted about the nursing situation in a while, so I thought Id give an update =)

We go see the ENT next week to get a trach update, and to the pulm. That is it so far, but I am thinking we will be due for a nutritionist visit too.

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!!

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.....

Well......

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!

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

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)

Teefers and weight gaining

First of all Camden was a gem for his first Thanksgiving. The night over at Papa and Nana's place went just fine. He is such a good babe!! Was overwhelmed with different people at times, but once again did much better than I expected. :) For a minute there we thought he was interested in my plate during Thanksgiving dinner. Come to find out he worked up enough nerve to touch the food so he could throw it off my plate. Still hating the feel of the food. Any food, although he licked a graham cracker last night before getting angry at it. Ya never know...

We have teeth! Last week they started poking through on the bottom. One on the bottom is officially in and the one next to him is on its way.

The fortifying my breast milk is working, and maybe too well. He went from 16.13 to 17.3 in a week. Im going to weigh him tomorrow to see what he has gained this week. He is getting breast milk through the day, and I am giving half and half through the night. Im just going to do a slow wean through the winter months.

Hasn't needed any o2 since that last episode, and continues to do well off the vent. Tuesday will be 3 weeks off....I believe we are DONE!! Praise God....