tolerating

....her feeds, so far she is doing good with the food increase to 12, I still do not have the total for the 24 hours but I am sure she will be just fine.

moving to 12 on feeds

Going up on Adrianas feeds to 12 in the am tonight/ tomm, lets see how she does. I hope she does good but I have been watching her ostomy output and it has come down a good amount. I think she will do just fine with 12 but I am not sure to where she will get to untill she starts to have problems. I hope she doesnt have any problems but I know its very possible and most likely she will. She has not had any problems with tolerating her feeds, she did when she was much smaller and her bili was high but I was also told her stomach did not contract but it should now, since she is tolerating her feeds.

increase on feeds= less ostomy out put

The number for her ostomy output for the day with the increase of her feeds is 164. Strange it seems as the higher the number for her feeds the less she has out? Is that normal, as much as I am happy she is tolerating her feeds I want to make sure this is normal her output varies but has always been very accurate. When she was at 7 she had 203, 8=237,9=181,10=198, and now it has come down some. Well I looked for her abdomen being distended or something and nothing it looks normal and she has not been vomiting, once in a while she will spit up but only some saliva. She gags a ton but thats due to her NG tube, I called GI just to make sure, well told them my concerns and hopefully they call me back and re assure me things are ok. Adriana has a emptying of the stomach this coming week on wend and so wee will see what that shows. I guess that will show if anything is not right in her tummy. My theory is her intestines are adapting to all of the milk she is getting so with time as her feeds go up she is absorbing more and more of what she was putting out as waste before makeing her ostomy output come down. I hope I am right and not wrong,well for now I will keep thinking that her feeds are going great and she is absorbing her feeds. That should keep me good untill I get reassured by her GI team. We will be baptising Adriana next saturday just to get her ready for surgery, we have a consultation on the 23rd of june with the surgeon so he will then give us the big date for surgery. I hope everything goes as planned and she is in and out with no complications. All of her surgerys tend to take long since she does have scar tissue from all of her surgeries she has had. Maybe our last surgery will be reconnecting her stoma. She has no large only about 45 small last time we checked, but she does have a full rectum so she does have something to connect her to. If her intestines are adapting now then we will have a big chance to connect her later. Thats later I am in no hurry right now, when her bag leaks and theres a mess all over the place then I feel she needs to be connected soon, as long as it doesnt give me trouble I dont mind it being there.

Information/surgery consultaion/pics

Her feed increase was a success she is tolerating the 10. WOO HOO! Well we have a appo on June 23 to the the surgeon and have a consulation with him, they will asses her and give me a date for her surgery. i am ready to get this thing out of her nose, it has been a big help but also a big pain not just for me but mostly for her. She has been a reatrooper for having it in her nose for all these months. Even tho she has yanked it out I would put it back in and I think she was just testing me. Here are some more pictures of my little Pinata!!!

up to 10 ccs on feeds and doing well......

So far so good, Adriana seems to be tolerating the increase on her feeds. She is now up to 10 and doing good with it. I'm so happy she has been doing good with that.... at least something are going good. I will have the results tomm, I will finish measuring it today at 2:37 am well tomm early morning. The next time I will bump her feeds will be Friday and she will go up to 11.

moving on up to 10 ccs on her feeds

So tomm am when her milk beeps and tells me her dose is done I will bump her feeds to 10. She did fine on 9 and had no problems whats so ever. So far so good with her feeds this is the best news I have had so far with her feeds and being able to tolerate it. I thought she would never get passed 1 but looks like being on 1 for 2 months or so really helped her gut get use to feeds slowly. Well I will let everyone know the results once they are in. Cross your fingers that she is able to tolerate 10 and pass it without any problems!!! Wish her luck!!!

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.

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.