Wend night Adriana was running a fever so I decided to call the GI doctor on call and of course he had me bring Adriana in. We slept the night in the ER and the next morning we had a space waiting for us in the nursery. They did take some blood cultures from Adrianas line and sure to say we got posotive results she had staph and I cant think of the other one right now. She was started on vancomysin and that will help clear her line. We only have one neagtive culture right now and need 2 more in order to go home on antibiotics wich I already know how to give to her. I am more scared she will catch something here and take it home with her. So we had a nurse that honestly is nice but seems that she has no idea what to do, she did many things wrong like picing up lines from the floor and wanting to use them, to laying out all of the alcohol pads on a chair w/o being in there packets and wanting to use those too.It was like she was trying to contaminate Adrianas line I don't know what she was thinking or where she went to nurisng school. I need to watch the nurses like hawks here, so have some good news. Friday we disconnected Adriana to see if she is able to tolerate being tapered off of TPN, and if so for how long without her sugars dropping. We have tried many times and have not succeded but this time to everyones suprise she was able to tolerate 7 hours 1/2 and then her sugars dropped and they drew a lot of labs. I was told that her liver does not have enought glycogen stored so tht is why her sugars drop. 7 1/2 hours is amazing to have her disconnected I would of been happy with 1 or 2 since she has been running at 24 daily anything would be great. Last time we tried tapering her, her liver was much sicker and bili much higher but thanks to omegaven her bili has come down a lot and is almost normal and she is able to come off of tpn. That is the only good thing we got from being here, I can't think of anything else.I hope we are abe to go home soon, this Saturday March 6th is Adrianas birthday she will be 1 year old. I hope we are out by then for her birthday so we can throw her a little something and celebrate with the family. I would hate for her to spend it here in the hospital. I will keep everyone updated with what happens and when we are able to go home from here.

Adriana is doing well just being herself. We started her back on feeds at just 1cc an hour. I placed her NG tube on Monday in clinic. I did not enjoy making her cry but I have to learn to place it myself. In 2 weeks we will bump her to 2cc's as long as she doesn't dump. So far so good, 300 is our number for ostomy, it would be the most her GI would like to see. Well nothing new with her we have pt therapy once a week and ot not as often, but she is getting better with eating. Of course she doesnt know yet but is learning little by little. The other good news is she doesnt qualify for a transplant anymore, the GI dr told me she is doing too well and would not qualify right now. That's good news, because she is getting closer to 20 pounds which is transplant weight. Well let's just see where things go. This coming month she will be a year old. It is very sad looking back at our year with her but just to know she is doing great right now it was all worth it. She has suffered a lot but if you were o see her she is the happiest baby I have ever seen. She is nothing but smiles and giggles, you would of never guessed what she has gone through.

Things are going good with Adriana, she is 11 months now and almost a year old. She is behind on her gross motor skills but is trying hard to catch up. She does sit with a little support and is able to catch her body when falling over. She does not crawl or talk all she can say is mama and papa of course in spanish because that is what we talk to her in. She is the happiest baby I have ever seen and loves to laugh and giggle all day if you let her. She loves to play patty cake with me and loves to make faces at us or noises and then laughs. She is now up to 18 pds 4 oz and pretty long, she is growing at a good pac but stretching pretty fast. We had clinic yesterday with our GI doctor and he is very satisied with her and how things are going. She is learning to eat and we have feeding therapy and physical therapy as well. Her bili is coming down, it is still elevated but not as much as it use to be, we are at 4.1 right now and her liver enzyme numbers are coming down. Thats always good news to hear, I mean after all I use to hear was that they were going up. Adriana had been on Ng feeds for about 1 month or so and I was suppose to go up to 2ccs cont but she decided to remove her tube. I of course did not feel confortable placeing it so we had to wait untill clinic. I placed it in clinic with a little guideness, it's ot as bad as I thought, I just don't like makeing her cry her little eyes out. We started her back at 1cc and in 2 weeks we will go up and see how she does. Cross her fingers that she can go up and do well. Our number for her ostomy output is 300. Her GI doctor doesn't want to see 300 or more. If so I need to give him a call and if she reaches more than 300 I have to bring her in. I also asked him what his plans are with her since she is reaching tranplant weight. He told me that right now she doesnt qualify for transplant because her liver is not as sick and she hasn't lost line sites or had many line infections. That was something nice to hear since he does know how I feel about tranplant. I am not againts it but would only do it if there was no choice for Adriana. 3 months ago she qualifies for transplant and now she doesn't, so he told me we will just keep working on getting her to learn to eat and of course getting her feeds up on her NG tube. He said he doesn't really have a time frame on how long he said only time will tell. Which is true because one minute she is fine and the next she is sick. Well I will be adding more picture of Adriana and her summer clothes which she loves because basically is naked.

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