moving up on her feeds

Adriana is now up to 9ccs on her feeds, she is doing good and it looks like her normal output. It has not gone up but slightly come down so far, she is averaging the same output every 3-4 hours. The good thing with Adriana is she usually puts out the same may very but very little, so I know what is normal for her. I will finish checking the output tomm at 3 am, that will be 24 hours and I will get the number so fer she has 180 I believe. I will bump her next feeds on Monday to 10ccs cont. Lets see how far we can get on her feeds so far so good, thank god. There is no more news I haven't gotten a call from the surgery clinic to set a date for her gt tube but hopefully I get it next week. I can't believe it just looking back on pictures of Adriana when she was smaller and very sick, who knew she would be here now and be doing so good. The surgeons gave me a grim chance when she was small but I guess I can just rub her in there faces now. She hasn't been transplanted or anything just yet, it looks like she has a good change of coming off tpn someday.

Our GI appo went well today... they went down on her tpn, she will be getting less and also they went down on her dextrose. She was at 13 and they are going down to 10 I believe but as she advances on her feeds she will even out. Right now she is at 8ccs an hour and advances weekly. Her GI doctor wants me to advance her feeds by 2ccs each week, monday and friday I will bump her 1cc each day. As she tolerates the big number is 350 as long as she is under she is good. As for the NG tube it is coming out she will be getting a GT tube.... her GI doctor said he agrees with me and so he put in all of the papers and requests. Now all I have to do is wait for the surgery clinic to give me a call and set up a surgery date. It will be done labriscopicly by a peds surgeon, but I am sure they have really good surgeons there. It has been 8 months since she has had a surgery, the last one she had was in sept to get a new line and remove her old one. Her GI doctor also wants a upper GI done and a emptying of the stomach as well. I will also be recieving a call for a date for those 2 exams. He told me the last exam of the emptying of the stomach she had it showed that her stomach does not contract but this was in october. She hasnt had any new exams done since then. Her doctor told me he is sure that her stomach does contract now since she is tolerating her feeds and now vomiting it. Well that is all the good news that we got for today... they did not decide to disconnect her for more than 4 hours but thats ok.. I am very satisfied with what happened today.

pics and pics

We are getting closer to our gi clinic day... tomm yay. Ugh another thing is I left Adriana on the bed with some toys and went to the back to put in a load of laundry and when I came back she was laughing and giggling, with her NG tube in her hands. She yanked it out of her nose and had some blood on her cheek. She tore her own skin and htought it was just funny for the NG not to be where it should of been. I guess I will just have to place a new one when she wakes up from her Nap. I have pictures of Adriana a ton more I took of her but I will just post some.


She loves seeing the trees sway back and forth...


She still wanders what that is at times.....



She thinks shes stylish...


Just relaxing on the chair


Up close and personal


Playing dress up with Adriana is fun....


Ready for her photo shoot..



Are you talking to me ?

8CCS and advancing

Well I went up on Adriana's feeds on Friday, she went from 7 cc cont to 8ccs. At first she started to put out some high output but later as the day went on it seemed to slow down. After the 24 hours I got about 230ccs. It is consist ant with her output daily, it is a little more but its normal....as she gets more in she should put more out. Nothing new with her... she did vomit a good amount yesterday but it was just milk. I had a problem with her NG tube yesterday night, I was trying to change the milk bag and the little tube broke in 2. Of course there was only one thing for me to do.. change her NGtube. I pulled it out last night and of course measured the line to her tummy and placed it.... may I remind you this is the very first time I place it on my own with no one watching or helping me. I am proud of myself...... and then I listened for placement and it seemed to be in the right part. That means that when we go to clinic on wend the NG tube will not need to be replaced. It was time to change the tube anyways.... it had already been a month. We have clinic wend and lets see what happens... maybe I can get a answer of to when she might get her GT tube placed. I hope it is soon... it has been a while sine i have been able to get a picture of her pretty face without any lines, tapes, or raw skin. I know she would love to get it removed as well.... she loved it yesterday for the few minutes it was out of her face. Well she seems to be advancing on her feeds little by little and seems to be doing good so far.

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.