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

Adriana is doing well, she is getting over her ear infection. Of course with help from some antibiotics. She had a Dr appo yesterday, the doctor told me it has not yet cleared but as long as she is comfortable she should be ok. She has been sleeping very well at night, she iwll wake up once thorugh out the night sometimes but iwll go back to sleep. Other times I have to wake up and she thinks it's play time which of course she is very wrong, not at 2 am. Things are still the same with her but of course her BILI is coming down and liver points as well. She has a GI appo tomm and we will see what they say. Adriana has no NG tube or anything right now. They told me to try bottle feeds but of course she does not like the liquid in her mouth and gags. She will acceptthe spoon though, and so I tried giving her baby food. My mom purchased some organic baby food at Safeway, different flavors and told me to try and see if she will eat it. I will tell you it does work better than the bottle. She will taste it and roll it around in her mouth untill eventually she swallows it. I only give her very little not even a spoon full, but it's pretty easy for her to take it. The problem is her GI doctor told me not to give her anything but pregestimil or pedialyte. The thing is I think she just doesn't want a bottle and it is much easier for her to swallow something when it is thick and will go down her throat when she wants, not like th liquid that goes straight down even if she doesnt swallow. She does have GI appo tomm and I think I will let them know what I have been up to. We have become very use to living this life with Adriana, line changes, ostomy care, dressing changes and Iv poles have become another routine in my daily life. I am very confortable with doing Adrianas care and not over welmed at all, I still encounter some problems at times but am able to fix it without having to call pharmacy. As for our equipment provider is great, they are very helpfull when I need it and always deliver things on time. We have our things deliverd from UPS every friday, which is the day I hang Adrianas last bag. Thanksgiving was fun this year, last yer I remember I was pregnant with Adriana and had no worries at all. This year she was home to spend Thanksgiving with us, and she enjoyed the company from the family. She loves the attention and cuddles of course, Adriana has been a very happy baby since she got home from the hospital. She enjoys spending time with me and her dad. She knows when we are at the hospital or when she will be poked which is hurtfull to hear her scream and cry. That has been a part of her life for almost 8 months and I just hate having to put her through those things still. Well as we reach the year 2012, looking back on this year has been a very bumpy ride. Adriana was born March and has gone thought alot since, 5 sugeries thousands of needle sticks, endless blood draws5 or 6 picc lines, 2 broviacs, 3 spinal taps, pre transplant evaluation and of course the best of all Started omegaven. I hope the coming year brings more happiness and less heart aches than this year.