stress

So its official.. Edward never wants to come home.. Every day he keeps getting worse... he is takiptnic (fast shallow breathing) and is looking really pale and tired all the time. His oxygen has been up to 40. the lasix are sort of working but he is getting another dose tonight so hopefully things start to improve. They are also going to check his red blood cell count in the morning to see if he is anemic and if that is causing everything. so please pray for my little man! he is 5 pounds 13 ounces! good night all! pictures tomorrow (i will post pics every other day) !

~Misty

PS. he now has a bouncer seat that he gets to sit in and I think he really likes it!

pictures!

hey everyone! Edward had a pretty good day yesterday he is still gaining tons of weight on his diet! he weighs 5 pounds 11 ounces now! other than that not much to report.. we took family pictures yesterday! I will post them below! plus many more!!
~Misty
"nooo I dont wanna be clean!"
a face that breaks my heart!
"i give up!"
"this is not as fun as you would think!"
"are we done yet?"
getting all dried off
I love you forever!
all clean!
"hey give me some clothes!
where is the baby? lol we found a matching blanket and outfit
"i am not amused!"
all tucked in!
what is with the crazy hats?!?
"fire power!"
"doing my exercises!"
"are you talkin to me?!?!"
"you don't wanna mess with this!"
"they put me in a straight jacket!
"hello someone get me out!"
"loving my mommy!"
"ready for my close up!"
mommy time!
talking to mommy!
teaching Edward how to give high-fives!
our family
proud parents!
so happy together!

16 May 09

Not a lot to report today. Edward is doing better overall but still not a lot doing great with his bottle feeding. The good thing is he is still gaining weight. He is now 5lb. 11oz. and has been put on a diet. He is now getting 24 calories rather then 26 calories. That's about it I need to get some sleep because of church tomorrow. I will upload pictures tomorrow.

Misty

Daddy is back

Hello everyone, Dad here back in town. I returned to work this week and will continue making the trip back and forth each weekend until Edward returns home. My work is still being really good about everything and is allowing me to work Monday-Thursday thus allowing me to have three day weekend here in Denver. Edward is doing ok overall. He's still back high flow and hasn't really been taking a lot from the bottle. But beyond that he is still gaining weight now 5lb. 9oz. and everything else look pretty good for now. He is growing so fast that it looks like they will have to move him out of his little baby bucket and in to a crib. Not a whole lot else to report. Please continue to keep Edward in your prayers. Thanks

David

overnight

hey everyone! sorry again but I ended up staying the night at the hospital because Edward kept having bradys. they think it is reflux but if it continues they will have to do some blood work to see if he is sick so hopefully it is just reflux! speaking of reflux... Edward had some massive reflux yesterday afternoon and he spit up all over mommy! I guess that's just one of the many joys of being a parent! the results from Edwards tests are partially back and it looks like he is doing better than before producing his own hormones so now they are going to wait till next week and do it again and make sure his cortisol levels continue to improve! Edward is getting so big! he is now 16 inches long and 5 pounds 7 and a half ounces! Boy do they grow quickly! its hard for me to imagine how small Edward really was! well I'm gonna go I need to head back over to the hospital! Sorry again!
~Misty
Edward and his girlfriend Lola!
ahhh!
oo cute!

sleepy!

sorry

sorry everyone for not posting last night I came home from the hospital cleaned my room and crashed! I almost don't remember going to bed! any way Edward is doing about the same as yesterday he is up close to 40 on his oxygen. he is still 5 pounds 6 ounces. the only thing new today is that they are doing a blood cortisol test to see how he is doing with out the steroids for his lungs. they are also trying to find out if his pituitary is working right. I will update you with the results tonight! sorry again!
~Misty

sadness

so today was kind of a rough day for Edward. He started off the day @ 50 cc's of oxygen on low flow and by 5 o'clock he was u to 125cc's so now they had to put him back on high flow to give him a rest. So hopefully tomorrow he will be back to low flow. other than that we tried feeding him with the haberman bottle again and he did pretty well (18 cc's) so now we are bottle feeding him 3 times a day. He also gained alot of weight! he is now 5 pounds 6 ounces! well that's about it I will post pictures tomorrow night because I really need to get some sleep (I'm not quite over being sick and I haven't got much sleep lately so m not really getting better) well good night all! pray for Little E!
~Misty