Feedings moving up to 8....

Adriana is doing good... I will bump her feeds to 8 tomm and lets see how she does for the 24 hours. hopefully she does well, we will also be seeing her gi doctor in clinic next wend. Lets see what her doctor says.. may she possibly get a GT tube soon..lets see what he says.... I will keep everyone updated

7ccs was a success

Adrianas feeds went up on Friday she is now at 7ccs cont, she did good, it was a success, she had out from her output 203 for the 24 hours. She had 210 or 215 when she was on 6 so she came down a little which is good news. By the time we go to clinic she will be up to 8. We see them in 2 weeks and lets see what they say, I am sure they will be surprised on how good she is doing with her feeds and how well she is tolerating them and advancing. Well nothing new with her, oh she was also accepted in the little heroes project as well, we are just waiting on a date and the photographer who will be in charge. well Happy mothers day to all you wonderful moms. I know what it feels like and is to have a child with medical needs. At the end it is all worth it, but you have to have a big loving heart to get through the day. I will leave every one with the cute text I recieved the other day.

"I traded eyeliner for dark circles, salon hair for ponytails and braids, long showers for hairy legs,late nights for early mornings, new purses for diaper bags, and I wouldn't change a thing! Moms don't care what we gave up and will continue to give up for our kids!

HAPPY MOTHERS DAY

Results are in.........

Nothing fairly new with Adriana I got her results from her CT scan yesterday. The doctor told me they did not find anything wrong with her head, her sutures are not closed. Hey maybe she just has a weird shaped head, her dad has a head identical to her just bigger of course. Well they will continue to monitor her head growth at her app and if it continues to not grow then they will most likely do a MRI. I was told it would give them another type of picture of her head. Nothing else with Adriana she ha been fine, but of course it has been hot lately and she hates that. She takes really refreshing naps in her crib, since her dad put the a/c up in our room. I will be going up on her feeds on Friday, she will come up to 7ccs. Hopefully she continues to be doing this good and only time will tell when we can get rid of these lines. I don't want to get to ahead of myself either. Well for now nothing new, same old boring stuff, which is good.

210 for the whole 24 hours

All went good with Adriana's feeds being bumped up. They went up to 6 on Friday morning and for the 24 hours her output was 210 which is really good. She was putting out more just a few weeks ago and now as her feeds go up her output has come down which is very good news. That can only mean her intestines are absorbing and getting use to all the food and doing what they should be doing. I will continue to bump her feeds us weekly 1 by 1 hopefully she does not get stuck or have any problems cross your fingers. This is the farthest she has ever been able to get on her feeds since her first surgery. Hopefully one day she will be line free, I am sure it wont be that soon but who knows maybe she will surprise us, she has been so far. we will be going back to Stanford May 19Th which is our Gi app, we will be seeing everyone in clinic that day and I am sure they/we will bring up the gt tube talk. I guess we will see where things take us. No more news so far we still haven't gotten the results of the CT scan so I am hoping that no news is good news, lets see if nothing later on in the week. If nothing I guess I will have to give her pediatrician a call to see what he says.

more news

Nothing really new with Adriana she is doing good and we had her ct scan done on wend we still dont have the results but all went well. They gave her anestesia and she was asleep in 20 seconds, we were then removed from the room and 10 minutes later they let us in the recovery rom where she was asleep. It took 30 minutes for her to wake up, well they woke her up she could of slept more if they would have let her. I also bumped her feeds today to 6ccs an hour cont, lets see how she does with that. I am bumping her feeds 1cc every week as tolerated. so far so good, i will be measuring her output for the 24 hours. Yesterday was the day I was suppose to do ethanol lock on her and I was trying to push out the bubble in the syringe and spilt all the alcohol, so that didnt go so well.

food play

Adriana playing with her food








Adriana was just loving playing with her food, she got more all over her body than in her mouth of course, after this she went straight into the tub and after her dressing change, osotmy bag change and straight to sleep. Of course then it was time for me to clean up

20 hours

Nothing new with Adriana today she will be off for 4 hours from her tpn, so she will start running for 20 hours from now on. I had to check her sugars last night right before connection and they seemed to be fine, 81 was our number. I have to check them tonight 2 times just to get a number and range of where she stands. I dread poking her and making her cry, I just hate it. Other than that Adriana has been having some yellow liquid come out of her NG tube when her feeds are disconnected. It doesnt have a smell or anything but its yellow, what could it be? I think bile is green right? anyone have any suggestions or had anything similar to tis happen? could it just be stomach juices, like acid? well for now I am not too sure what it is, I just hate the NG tube. The connection part gets very wide and its hard to just shut it, it starts to leak and you have to tape it, but then when you want to connect the feeds you have to untape it. I just hate it, ugh well Adriana is doing good