Adriana continues to do well on her feeds, through her NG tube. She still continues to be on 1cc an hour for 24 hours. Hopefully this week we will bump her up to 2 and see what happens. If Adriana can tolerate her feeds going up without dumping then we will be looking at a gt tube soon. How soon I am not sure but it will be something we will start to think about. It all depends what her GI doctor says. I am not sure how her bili is right now but at our last GI app it was down to 4.7 which was almost 1 month ago. We will have her blood drawn on the 24 of Feb and lets see how low it is not. She ocntinues to be on TPN 24 hours because of her sugars dropping. We still have no answer as to why they drop but we will see her endricin this week and they might make her come to day clinic and stop her TPN and draw her blood when her sugars are low to see what is going on. The Ng tube does not seem to come out anymore, well of course I have to almost retape it every day. She does gag a lot with the tube in her nose but it's the only way to get food into her belly right now. She is almost 18 pounds and growing, her color is much better, not yellow at all, her eyes are very little she looks like a totally different baby. I am enjoying her a lot , the only things I dont enjoy is she wakes up ever night at 12 am and wants to play. She will scream untill I get up and get her out of her crib. Which she will not go back to sleep untill 3 am, thats what I call crazy. Adriana will be 11 months in a few days and almost a year old. Can you believe it, she cannot stand or crawl but is almost sitting. She loves cartoons and to play and of course her dad is her world.


Adriana sitting


Adriana was in her tub of course it was bath time


She is nothing but cheeks and smiles


She loves pictures especially of her


This is her real skin color, no more yellow


Adriana and her dad. don't they look like tourists?



Adriana loves going hat shopping

Everything has been going good with Adriana, of course she has her NG tube back in. It was placed yesterday and we started her at 1cc an hour continuously. In 2 weeks she will go to 2 and on and on if she tolerates it. She hasn't been complaining much about those teeth but continues to chew on everything. I am going to buy her a high chair because the ot therapy told me she should have one. So she can sit in it and play with the food, which I think she has a point. I am not a big fan about the messy part or of having food in her hair but anything to keep her interested in food. Nothing new with her, all is stable so far I hope it stays that way. I have tried not to take her out too much due to the cold weather, unless I must take her with me. I will be adding pictures, I know I have said it many of times but I will this time hopefully today.

I just layed Adriana down for a nap so I have some time to catch up on things. Lets start off with Adriana is now teething, she has her moments of sudden crying and I put some ora gel on her teeth which just makes her more mad. Give it a minute or 2 and she stops and feels better which is good. I only see one tooth already nut a big white bubble next to it so it might be 2 teeth. I took Adriana to her GI appo yesterday in Palo Alto and she now weighs 17pds 3 oz and measures 24 inch so she gaines 730 grams since her last visit and grew an inch as well. She is doing well and we are still trying to feed her baby food which she will take only when she wants of course. I have more sucess and different times it all depends on her. The Gi doctor was happy with how she was doing and looks. We also did lab work yesterday and her bili has come down to 4.7 thats the total we started omegaven when she was up to 13 and now has dropped alot which is very good. She has been on omegaven 3 months now and also turned 10 months yesterday. Her GI doctor told me that she looks like a happy baby which is what he wants. So we have ot thereapy on tuesday and lets see how that goes. Hopefully this helps Adriana more with her feeding. She does not have a oral aversion because she will alow things in her mouth she is just not the best eater either, so we will continue to work on that.

Im back I know it has been a very long time since I have poted on here but Adriana came down with a line infection. She was admitted in the hospital and we were there for almost a weel. We were able to bring her home the 23 of December. She was able to spend Christmas at home but of course her antibiotics came home with us as well. They showed me how to give it to her at home, I gave it to her three times a day which I had to get use to because I would forget at times.She was getting vancomysine and we finished antibiotics on the 3rd. Well christmas was fun we had family come over and spend it here due to Adrianas connections, which they all understood that it would be hard to do the connections somewhere else besides home. We also had a good new years my mom came over and spent it with us, it was fun. Adriana has been doing good acting herself of course and we will see her GI on wend, we have clinic lets see how low her bili has come since our last visit last month. I will be adding pictures of Adriana very soon so you can see how well her color looks here eyes are still a little yellow but not much. Plus her hair is starting to grow and get longer, we have a ot appo on the 12th of this month.I will be takeing Adriana up to the NICU that day to visit all of her old nurses and her old home. I wander what they will say, shes bigger and beautifull what else can they say? Well the pictures are coming soon

Nothing new with Adriana she continues to do well and act herself. She is getting bigger and bigger I can't believe it that at one point she was 1 pd 10 oz. If you were to see her now you would not believe me. Everyone is so impressed with how well her color is coming back and jaundice is going away. We have entered the baby food world. Adriana will swallow some of it but not much to say, at the most would be a baby spoon full. Of course not all at one time I mean in total. So far no cold or flu or anything like that, we have been good on keeping it out of our house. She sees like she has finally overcome her bronchiolitis and the ugly cough and secretions are gone. She has been able to sleep all through the night without any problems. We will be seeing her GI in a month and I will bring up the idea about a NJ tube. I feel like we need something down there in order to rehab her gut. I will still continue her feeds but it's not much and I don't think it's really rehabing. Well we will see what her doctor thinks about that and how things go with her. I would like to get through the holidays without any trouble. Hopefully Adriana is able to stay healthy and have a good first Christmas. We were also able to put up her tree and of course she likes the lights.


This is what you call a pink panther


Adriana under cover


Adriana getting ready to make herself over


Adriana stunned with her new make over

So we we made it to Adriana's Gi app on time on wend. We went down to do blood work which of course she screamed and cried and most likely scared the rest of the kids waiting outside to get there blood drawn. She was then complaining the whole time after we left the lab. We then went up to her app and saw her GI doctor. Dr. C was there and they weighed her which she weighs 15Pd's 12 oz and is not growing as fast. may I remind you they had gone down on her sugars from 15% to 13%. I told Dr.C that I was trying to feed her baby food and explained why and he told me that I could continue if I would like. He told me it's best to keep her interested in food and to eventually get her eating. He told me just to watch her ostomy output. Of course he told me her ostomy out put is low so he would not be worried if it went up to about 200'cc a day. Right now she is putting out about 100 a day which is not much according to him. He told me to get her feeding therapy which I am working on. He said her Bili is coming down the so are her other liver numbers. He told me she looked great and that we did not have to come back until a month. So it went good but I also told him I was frustrated because she does not eat much and I felt like it wasn't getting her any where. I mean I wouldn't really consider this rehab because there isn't much food getting into her stomach. Of course she did hate the Ng tube but I think it was really helping her. He didn't bring up placing it back in but I sure will ask him because I know it would really help. She was only on 1cc continuously but of course her liver was much sicker at that time so I am wandering how much can she tolerate now? It has been in the back of my mind for a few days now.

Adriana and her dad, I wander if they look alike?



Adriana playing with her blanket, she is still a little yellow but her color is much better



After almost 2 months on omegaven


Before omegaven

Can you tell the difference? Plus her hair has grown as well