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.

The bad news is that Adriana has a ear infection. She does not handle antibiotics orally good at all so they decided it was best to give her the shot. It will be a series of 3 doses, which is today tomm and the next day. This will help fight her ear infection. The strange thing is she hasn't had any symptoms of any sort, no fever or anything. We have a follow up app on Monday to see how she is doing. She is sleeping right now since she has had a very lond day and a shot to top it off.

Adriana is still not over her bad bronchitis, her symptom is a very moist wet cough. She will cough a lot just to try to get her secretions out. She has a very hard time sleeping at night due to this, and of course I do too. I also have a cold which is most likely because I am the one that takes care of her and always with her. She has a doctors app today and we will see what they say. I do not like taking her to the ER because they do things that are not necessary and sometimes don't know what they are doing or what to do. i would rather have her see her pediatrician and let him decided. Nothing new with Adriana all her medicial things are the same, still tpn/omegaven dependent and some oral feeds but not enough for it to be measurable. Hopefully we will get feeding therapy for her soon. I will be adding some pictures of her so you could see how her yellowness is fading away. She still is a little yellow but not as much as she use to, which we are very happy with. She is also outgrowing her clothes very fast which sucks because that means new clothes.

So here is the latest scoop on Adriana, she is doing better but her cough is still the same. It is also a little better but now she has secretions which seem to be hard to get out. She will cough a lot until she is finally able to vomit and get it out. It does take her a while though and I know she is very uncomfortable. We will be seeing the doctor hopefully tomm and see what he thinks. We went to her GI appo on wend and everything looks well, they did go down on her sugar in her TPN bag and up on her omegaven. She is now down to 13% on her sugar and getting 70ml of her omegaven. She also weighs 15 pounds 5 oz, they just don't want her to grow too fast so they had to adjust some things. Well her bili is at 10 right now and was 9.7 last time but since she is fighting this cold the Dr thinks that is why. They also told me that her other liver numbers have come down 200 points which means everything is going in the right direction and soon her liver will feel much better. I can tell her yellowness is going away, not just in the eyes but her face and legs are becoming more pink and less yellow. She has been doing good other than this nasty cold, bronchitis that she has. I know it will take time to get over this but she is a very strong baby. The Dr also feels we should put the NG tube back in her nose to see what she can handle with feeds. We will most likely wait until our next appo to do this because since she does have this cold he doesn't want it to plug up her nose even more. He also feels that in the future as we advance on her feeds which hopefully will happen they will need to put a GT tube in her belly. It is another surgery which has many complications but it is one more thing to help heal her. We will see what happens with time only time will tell. I will keep updating everyone and add more pics of her soon

So nothing new with Adriana we had a Dr's App yesterday and everything went well, the Dr told me she sounds better and looks good. That was a relief, she looks much better to me as well. Tomorrow we have a GI app in Stanford, we will have some blood drawn and the GI doctor will check her out. Adriana is doing well after that scare of Bronchitis, she is not weezing as much and her lungs sound clear now. Nothing new with her but tomm I will update you on the lab work.

So here we are back at home, we got home on Thursday afternoon. They decided they wanted to keep Adriana in the hospital for 2 days just to make sure she is getting better and not worse. So she was we went home with some tamaflu and albuterol every 4 hours. She is doing good, she still has that cough but her respiration is getting better and no more of that vibrating noise she use to make while breathing. She is very happy to be home, as soon as we walk her through the doors of the hospital the first thing they want is her blood and an IV. They decided they needed one and they did not use it for anything but to draw blood. As soon as Adriana felt they grabbed her hand and started feeling around she started to cry, she knew it was coming. Of course I was not able to do anything but I let the nurse know you only have once chance to get it in, if not don't touch her anymore. The nurses will keep trying until they get one in, it doesn't matter if that means 3 pokes, so I made sure I was watching. We also decided we needed a heater in the room, since Adriana is sleeping in the room with us I had her dad go out lat night and buy us a heater for the room. She is sleeping comfortable right now in our room. Adriana has been on omegaven for a little over a month now and is doing good. Her color is improving but of course she still is yellow, her eyes are but her legs are getting pink. She is not great with drinking her milk, so if you have any advice on how I can make it better please help. She does not like the bottle, and the only thing she drinks are the little drops I can get in.

So Adriana was admitted into Children's Hospital last night. Since last week on Friday I realized that she had this really ugly cough, it got worse over the weekend and the wheezing and rapid breathing also started. I took her to a Doct appo on Tuesday and they decided they would like to take an x-ray of her chest, so they did. I got a call later that day from the Dr's office, they told me that the tech that read the x-rays said that she was having heart failure, so the Dr though that she might just have sever bronchitis. We came to Children's later that day and they put her on some oxygen to help her not work as hard. They gave her a lot of breathing treatments which also helped her alot even though she really hated them. They also decided that they would need to put an IV in her, which I argued about. They don't need one, she has a central line and that is enough for her. They were not going to give her antibiotics anyways so why an IV, I told them that they had one shot to get it i, if not then that's it. So they did try once and they were able to get it in, they drew some blood and ran some test. All of her numbers came back just fine, nothing out of the ordinary which was very good. They said Adriana has bronchitis, they they felt like they should monitor her over night and see what happens. She did very well over night and did not need any oxygen. She has been doing fine since, I set up her tpn/omegaven last night and I will do it tonight as well. I would rather not have so many people mess with her line, I can do it all for her, well i have been doing it. The Dr told me she would have to stay one more night and if all goes well she will be discharged tomm. I hope she will because staying here is so boring and she is in isolation just in case. The Dr also told me that the pharmacy would have to inspect her omegaven to make sure it is appropriate for her to use. I told them it didn't matter what they though, that it was her lipid and it was prescribed to her from her GI doctor so if they had a problem with that to give her GI doctor a call. So they decided that she could use her omegaven here in the hospital. Well I will keep everyone updated I am going to go back upstairs with her since I left her alone and if she wakes up she will cry because she does not know where she is at. Also when you leave your baby alone in the room someone always comes in and decides they need to draw some of her blood. Why? I don't know they don't even need it. She has bronchitis not something alse.

I got a call and I was told that Adrianas blood cultures have shown no growth in 2 days , so far so good. On the other hand I am sure Adriana has a cold, I have a cold her dad just got over one and she has this very nasty cough. Other than that she has been doing very good. She turned 8 months yesterday and on the 9th it will be one month on omegaven. Like I had said her bili is coming down. She had an appo with the thyroid doct yesterday and I was told Adriana might not even have hypothyroidism. The problem is since she was premature so was her thyroid gland, by now it should be mature but since she is taking medication there is no way to tell. They don't want to stop her medicince because it's too risky, If she were to really have it and they stop her medicine it will affect her brain developement. So she will have to wait untill she is 3 years old to know for sure and check it. Takeing the medicine will not do her any harm if she doesnt need it though. We are also not sure why her sugars drop very fast and she is not able to be cycled of her tpn. They thought it was her liver but other children with sicker livers do fine with cycling and not her. There might just be something else to Adriana but we are just not sure yet. It will take some time to find out exactly what is causing this. The doct ordered some labs and we will see what happens from there. Adriana loves to watch tv, she likes Tom and Jerry and also sponge bob squarepants. She also enjoys playing with the toys her dad has bought her but most of all she enjoys nap time.

Adriana has had a very busy week, this whole week she has had app the only day she had off was Monday. Yesterday we went for her clinic at Palo Alto and saw her GI, things are going good with her but she was running a low temp fever Monday so we decided to draw some blood cultures. They also did lab work, so her platelets are back up and her bili is coming down which is very good the direct is 7 soemthing and total is 9 something. The blood cultures have not grown anything, I am pretty sure that she is just trying to fight a cold. Her dad had a cold last week which is is just getting over and I am starting. So she might just be starting to get a cold as well, hopefully no infection. Her GI doctor decided she does not need the NG tube anymore and just to keep giving her the bottle so she can learn and finally take it. She is doing well she will actually open her mouth and accept the nipple of the bottle, but of course will not suck on it. So I just put the nipple in her mouth and let it drip a little milk and then she swallows it. I on't think it is measurable yet, what she drinks but soon with time it will be. She is doing good and I am too, I think I am pretty use to doing her care and feel very confortable with it now. I got into a routine now so things are going good. They also decided to go up on her omegaven, she will now be getting 6.5 of the bottle. As she grows she will get more eventually. Adriana weighs 14.10 pounds right now and her last GI app she was 6.2 kilos and now 6.6 kilos. They did cut down her calories and she is doing better.

HAPPY HALLOWEEN from Adriana and Family. She decided she wanted to be a monkey this year, what a good choice, don't you think?

Adriana has been doing good since she has come home. Only one problem she decided she did not want her NG tube any more and pulled it out. We had to take her to the emergency room to get it placed in again and the next day it was out again. She really does not want it, I wouldn't blame her, plus it makes her sneeze alot and her nose itchy. I let her GI doctors know and we will see how we can get it back in without having to go to the emergency room, there are too many sick children. I have been offering her milk by bottle but she will not suck on the nipple, she will play with it for a little while and drink the few drops I can get inside her mouth but that's all. Of course the milk is just for rehabilitation her main calories come from tpn/omegaven. She is doing good on omegaven, I can actually see her color setting in, her eyes are less yellow and she looks much better. She almost has 1 month on omegaven already and her labs have been good. The doctor is happy with it, I am getting use to hanging a new bag daily and can do it without thinking about it. Of course the hard part is connecting it to her because she does not like to stay still she will wiggle like a worm. Thank good she has not had any fevers or anyhting, she will get fussy sometimes but it is easily fixed with picking her up or rocking her to sleep. Knock on wood that she does not get an infection that is th elast thing she really needs. I will be adding some more pictures of her and we have a GI clinic appo on tuesday, her last one was about 2 weeks ago. The doctor said it was fine she was doing good no reason to see her weekly. We have not taken Adriana out so much for the flu season but when we have gone out I also get those stares like what is wrong with your child. They tend to ask because they see her NG tube and ask why? It's a long story I tell them but she just doesnt know how to eat yet, she's learning that's what I tell them. Then they saw ahh like if it was that bad, they don't know the whole story because that is much worse.

Adriana is enjoying being home with us. She is a lot to handle at night since she decides she does not want to sleep untill late. She takes a lot of naps through out the day and at night I have to fight to get her to sleep. She is the last one to go to bed and the last to wake up the next day. She loves watching cartoons and playing with her dad. I enjoy playing dress up with her and she hates it. If it were for her she would be naked all day but I can't let that happen. So our new shipment day is friday, they decided to switch it since clinic is on wend and the shipment day use to be wend. The doctors want to see her and if they make any changes they want to be sure that she gets a new shipment. So friday it is, we have a Pediatricion appt tomm, it is very hard to find one for her since alot of them just don't want to deal with children like her. So why are they doctors? well anyways I will be adding a couple pictures of her.

Wow, It has been so long since I have updated Adriana's blog. Well here I am Adriana has been home for 1 week now but has been under my care for 2 weeks now. She is doing good and I am getting the hang of doing all of her care. It is alot to remember and do but I seem to be doing good. She has been fine lately just loves to be held, watch T.V and loves the attention. Adriana is on HA for 24 hours and I run her omegaven for 12 hours. She has had 2 clinic appo and they drew blood as well. Her bili started to rise and now is coming down and all of her numbers look good. The doctor was satisfied with all of them no worries for now. She enjoys being home but she is not easy to put to sleep at night. I hook her new bag up at around 9:30 and her omegaven as week. We then take everything to the room to go to bed and she just starts talking and talking. She obviously does not want to go to sleep. I get her to sleep and lay her down and 20 minutes later she starts to cry. I get up and try to get her to sleep and she is talking again, of course in the dark until she finally falls asleep. I wake up about every 4 hours to change her diaper and empty her ostomy because if I don't she will get her blanket wet. She has an appo with her padiatricion on Monday, and next week on Mon with her surgeon. Next Tue she has clinic which is more blood draw. I did have a problem with the line change on Monday when I had to change her blue max plus cap. It seemed that the blood was flowing back from her broviac into her line and I had started her infusion with her TPN and there was an air bubble. I don't know how that got there because I had primed the tubing and there was not air at all. I now hook her up every night with her new bag running so it will push against the blood when I connect her. I just get a little jumpy because Adriana cannot go without her HA for a few minutes due to her sugars dropping. We will also be seeing her thyroid doctor and they will be running some test to see why her sugars drop so fast, we will go to day hospital or something, we wont get admitted but we will spend all day there. I am getting use to doing all of her line changes daily, it's just another routine I added to my life.

I cam home for the weekend, as you know Adriana will be discharged Monday. That is the plan I think I am doing very will with all of my learning to take care of her. I get the hang of all the regular baby stuff and I think I have almost conquered doing the pumps and tubing as well. So here is the scoop Adriana does not tolerate being off her HA so I will be taking home an extra pump for that reason. The home pharmacy will give me 2 TPN pumps and 1 lipid as well as 1 feeding pump. That's a lot of things, plus all the supplies and ostomy supplies too, oh and broviac. Wow, so that is the reason I decided to come home for the weekend. To get everything together since Adriana's room is a mess and need to get things organized. I also have to buy her stroller, some diapers, baby wipes, one of those white plastic dressers well 2, 1 for supplies and other for her clothes. I also need to get a diaper bag for me to carry with me which I do not have yet and some other little things. Her Dad and I are both so excited that she finally will be coming home. Adriana is now getting omegaven and her second bag was hung last night. Things should get better for her now, even though I know the first few weeks her bili will go up and then come down and her color will come back. I can't wait to see that happen. Well we do have to stay locally for a few days just in case anything were to happen, and I think until our appointment which they will tell me all of this on Monday. I am so excited we will finally have our little girl home after spending 7 months in the hospital. She has never come home since and this will be the first time. I might now even know what to do, I will be so excited with her home. I know flu season is here so we might not be taking her so much right now. The only medication we will be taking her home with is her thyroid medicine which she gets orally. Then tpn/omegaven and her NG tube for her feedings. She is taking pregestimil since my breast milk ran out but right now they decided to stop her feeds because she started to dump. They will most likely start them back up for Monday. She is getting very little but every little milk counts. So like I promised the pictures This is Adriana's new crib in StanfordAdriana after her long trip from Children's in Oakland to Stanford. Adriana's 2nd day at Stanford playing with her favorite toyYes that's Adriana with her summer bow the flower is bigger than her headAdriana after her bath, she like her pink lady bug robe

Good news everyone, Adriana was approved by the insurance to start omegaven yesterday. She received her first dose yesterday night and they ran it at a rate of 1.2. They said that's there protocol, so far so good she has not had any reactions to it. I will post pictures tomorrow

I am back, since I am staying at the hospital I don't have much to do here. Adriana loves to just sleep, so what do I do. I spoke to the doctor she kind of just went over Adriana's test results. She has been pre evaluated for a transplant and so they had to run many exams on her. I was told they did not measure how much bowel she has but they are just going with what the surgeon said. Which is about 45cm of small. I know it is not much but we will see what we can do with it. Well Adriana is not yet receiving omegaven but the doctor told me that the NP that is in charge of that has been talking to CCS, and they might have an answer for us today. All I know is they need to hurry I thought she was going to get it along time ago but I guess it doesn't work that way here. The home health company has been coming by daily showing me how to do work the pumps, and do the tubing. It is fairly easy like everyone was telling me. Adriana will be discharged soon, we do not have a date yet because Ronald McDonald house is full and we are on the waiting list.They want me to go there for a few days so I have the feel of things and feel very comfortable that I can do everything myself. I realized today that it is alot I have to learn and do for her at home. Her broviac care,ostomy care,feeding pumps,NG care,TPN care and last but not least the regular baby care. It seems like alot but the only thing I would be doing daily is her TPN, lipids and feeds. When Adriana goes home we will work on trying to go up on her feeds slowly and we will also try to cycle her off TPN for a while to see if she tolerates it. We failed at it yesterday so I will also be taking home one of those machines that reads your blood sugars after you poke your finger. I would only use it in case of an emergency and I needed to check her sugars. I guess I will just accommodate everything to fit Adriana's needs at home. I thought being a mom was hard, but being a mom to a child with special needs is alot harder. I will keep you updated when I get a chance to sneak away from Adriana. I will also be adding pictures of Adriana when I get home. I am not able to add them here because the computer does not let me.

Adriana is doing well. We are still on the waiting list for a room at the RonaldMcdonald house, so we could be discharged from the hospital. We finally finished evaluatng Adriana for a transplant. I am not sure of any results yet but the doctor told me she would be by today to let me know what they are. They tried to cycle Adriana yesterday for 2 hours but of course her blood sugars went down. They were at 62 the first time and then went down to 39, the doctors werent so excited about that. They restarted her TPN right away and checked her sugard again. They then came up and she was fine, while her sugars were low she was not acting any different, she looked fine but they were worried she might go into shock, Well Adriana is not yet on omgaven we are stil waiting for an answer from the insurance but hopefully we get one today. So I am learning how to take care of her at home, the home health care comes almost every day to show me how to hook her up and how to use the pumps. They are not as hard as I thought. Well I will keep everyone updated as we get farther down the week. Hopefully next time I update you guys I will have the good news that Adriana has started omegaven let's just see.

Today we should be getting a response from the insurance regarding omegaven. Adriana also turns 7 months today. Well she went down at 10:00 am for a gastric emptying test. They will put a certain amount of food in her stomach and see how long it takes for the stomach to empty into the intestines and intestines into her bag. I was also told that they are getting ready to discharge Adriana from the hospital. She will be coming with me to the Ronald McDonald house which is about half a mile form the hospital. We will be staying there for a couple days so we can come to her appointements and check ups. It also gives me some time too make sure I feel confortable doing all of her care myself. I am very excited but scared at the same time. I don't want to mess up.. well after they feel I know what to do and she is doing good then we will be coming home. We live about 1 hr 20 minutes away from Stanford so if we were to have a problem it would be a long drive. I also have to get some last minute things for Adriana before she comes home. i am very excited but kinda scared like I said. I know I will do my best that I can and be carefull with everything I do. I will keep everyone informed with what is going on or what will happen with us. Adriana will go home on feeds, I am not sure how we will work with that or how we will go up on her feeds or anything.

I have been staying with Adriana is Stanford since Tuesday. I came home last night to take a little break but hopefully will be going back today or tomorrow to spend the week with her. She is doing very well, and it's just to see what the plans are for her. Right now Adriana is being evaluated for a transplant, which does not mean she needs it right now it's a just in case thing. The transplant doctor feels it is a good idea to evaluate her right now that she is doing good, just in case down the road she gets sick and she needs a transplant. All they would do is add her to the list because all of the test have been done. I had to make it clear to all of the doctors and team that came in with me that we are not there for transplant. We are there to get omegaven for her and see what happens. Adriana has had some lab work done on her blood, and has her stool checked daily. In the stool they are checking to see if she is absorbing all of her calories from her milk or just dumping it. The good news is that she is absorbing all of her calories from her milk. She is only getting 2cc's ever hour continuously right now but is doing very well with it. She is only been putting about 74cc's from her ostomy daily. The GI doctors feel she is doing fairly well with the intestines she has left. They have given me high hopes that we would be able to rehabilitate her gut with time. They know how much she has and they are not exactly sure how well it works but hope that with time and feeds it will grown and adapt. Right now she has had the barium study done and we found out she has all of her rectum. Which means she has the muscles in the rectum that would allow her to hold it it when she had to use the bathroom. That will help her in many ways if she were ever to get reconnected. One day I hope she will but right now that is the least of our worries. The plan for right now so far is to run her lipids for 12 hours and continue her feeds at 2cc's an hour continuously. They will continue to take daily ostomy output, and do blood work daily, hopefully on Tuesday the 6th we will have an answer from CCS. We are waiting for them to give us a yes on omegaven and she will get started. They will continue to check her feeds and either make them go up or down depending on how well she does with it. She was at 3cc's yesterday but they told me today that I guess they found too much sugar and fat in her output meaning she was not really absorbing it all at 3'ccs. So they brought her back down to 2 which is ok. Adriana continues to be a sweet loving baby that enjoys spending the day with her mom and watching tv. I like to lay her with me on the little cot that I sleep on which is right next to her big crib. She will take naps with me and loves it as much as I do. Hopefully we will be out of the hospital soon, the sooner we get omegaven the faster we will be home.

So Adriana finally made it Stanford yesterday, they were there to pick her up around 2:45 or so and made it here at about 3 or so. She was no admitted into the nursery she got her own room. As of right now she does not have a roommate but hey someone can always come at any time. She has this big bed, which they like to call a crib although it is nothing like her old baby crib she had at the other hospital. So anyways she likes it here because she also has a t.v to watch which she has never seen one in her whole six months of life. I was also able to walk her around the hospital halls, which she enjoyed and of course was really tired and fell asleep. They did lab work today the normal blood work they usually always did once a week. So Adriana might be getting started on omegaven tonight, I hope so. The transplant team will also come by and talk to me regarding what there plan is. As of right now I am not thinking about transplant of course, I mean who really would. Well I have pictures of her but This computer does not have any connections so when this trip is over I will be able to put them up. I might be staying here in her room, there is a day bed for me to sleep on or If I'm lucky I will be getting a room at the Ronald McDonald house, I am not sure as of right now. We will see later on in the day. I think Adriana really enjoyes being here everything is much different than at the other hospital. She has more privileges here than the other place which I really like. I know they do there things differently but I will just let them know the way I like things done. I will continue to update everyone as we continue on this journey.

So Tomm is the big day. We will be going to Stanford and get omegaven for Adriana. She is doing good for someone who just got over a line infection. I packed all of her things and took them home from the hospital. It came out to 6 bags of all of her things. I had to pack a bag for her that I can take to Stanford. It includes some clothes, socks,head bands, and a nail clipper. Everything is ready for her ot go tomm, they put all of her papers for her transfer in a big yellow envelope. She looked so cute today in her purple dress. She was awake when we got there and finally fell asleep on me. She would stretch and move, and wiggle but not wake up. It looked as though she was having a bad dream or something. She was very confortable but makeing me very hot, she was laying on me and breathing down my neck. Adrianas ostomy output has come back down to her normal numbers, and she is still on her feeds. She get's 2ml every hour for 6 hours 3 times a day, so once a shift. Watch out Stanford Adriana will be there tomm. Adriana and my mom

As you may know I have been waiting for the call telling me whether or not it's a go on Monday. If Adriana will be transferred to Stanford and receive omegaven or if she will just not go at all. Well that call just came in not to long ago and WE ARE GOING ON VACATION. Yes you read it right Adriana is going to Stanford MOnday and will be getting omegaven. I am so excited I am about to pack my things because I too will be staying out there with Adriana. I will be staying at the Ronald McDonald house across the street from the hospital. She is suppose to only be there for a week but let's see what happens. I have to make sure to bring enought clothes for her because of course a baby get's dirty easily, and especially when you have an ostomy bag. Whoo ho, I am so excited I will be away from home for about a week but it is so worth it. Her dad will not be staying with us because he has to work but he will go with us on Monday ot get to know the hospital and doctors and just to find out how to get there.

Wow so we finally come down to the end of this long week. Adriana is acting herself and of course feeling much better. So her cultures came back negative for the infection which is the good thing. That means they have cleared it from her blood but she still needs to finish up her antibiotics. Her infection this time was gram rod + and gram rod -. Last time she has MRSS which is a staph infection. So I did Adrianas line change yesterday which I think I did pretty good, I am getting the hang of it. I am more worried about being as sterile as possibe and clean as possible. It helps when I have someone there playing with Adriana while I do the line change. It's also easy to do her broviac change when someone is holding up her little arm and playing with her. That is the only way we can get her to stay still. So far the best person on doing all of that is her dad. She adores to play with him and he is the only one that can get her giggling and laughing. The nurses too but she kinda just stares at them all wierd. Anyways her feeds were restared and she is getting 2ml for 4 hours every shift. So 3 times a day only for now. Monday is the big trip to Stanford I hope we get to go. I recieved a call yesterday afternoon from the nurse coordinating the whole trip. She told me that she had talked to the GI team in Stanford and told them all about her infection and how it was cleared she just needs to continue her antiniotics and she should be good. Well Stanford said they will have a YES or a NO answer for us today. I really hope she get's to go, we have always been so close and been held up for some reason or another. The nurse told me that Adrianas liver test have improved a little which i am really sure it has been because her feeds. The reason is she has been on feeds for about a month and so that must of really helped her. That doesn't mean she won't benefit from omegaven. Cross your fingers hopefully I get the call with good news today.

Adriana has been through a lot this week. She came down with a fever on Sunday or Monday so they took some blood cultures and urine from her. The urine came back negative and blood cultures came back positive for bacteria. They then took another culture to see what kind of bacteria it is exactly to know what kind of antibiotics to treat it with. Right now she is being treated with antibiotics, the doctors think the infection came from her GI tract and not the line but they are not 100% sure. So she hasn't been feeling great with this infection and fevers, they are giving her ibuprofen orally which is helping her fever. She was also acting very fussy the other day and they thought her neck was stiff. They decided they wanted to do a spinal tap on her, you heard right a spinal tap. They tried that yesterday and were not able to get any spinal liquid, the only thing they got was blood, and her platelets were low so they needed to infuse her. They then did an x-ray of her left thigh where her broviac line up to be to see if they could find any bacteria in her bone and they found nothing. They also tried to put PICC line in her head but were not able to because of her little veins being all beat up. Yesterday they did another spinal tap and were able to get some spinal fluid. They told me they only saw 3 white blood cells in the sample and that was good. They did not see any bacteria in there under the microscope, and they felt very sure she did not have meningitis. Which was a big relieve for us, so she is septic but it did not get to her brain or anything. So they also made her NPO because she had a big residual in her stomach the other day but just started her feeds again today. The nurse told me she looks much better and seems like she is getting better. I believe they also told me that they drew another blood culture and the results were negative so far, they are not sure if the infection is gone yet but she is still being treated with antibiotics. Monday is her big day Adriana will be transferred to Stanford and receive omegaven. So Adriana is getting better right now and just fighting off her infection.Adriana is our little fighter and has proved it to us.

Adriana has come down with a line infection again.This really sucks she just got over a infection and had her line removed and a new on placed. Well last night when I went to visit Adriana she was acting herself but the nurse told me she had spiked a fever, they gave her ibuprofen orally and her temp came down. Her Dad and I gave her a bath and she loved the water but as soon as I took her out of the water she started to fuss. I knew she was cold and tired. I dressed her up and as soon as she was all dressed I picked her up and she fell asleep in my arms. She did feel a little warm, but her feet were cold. So they took some blood cultures from her yesterday and they also took some urine to check. Well I was told today that bacteria did grow on the blood cultures. I am not sure how many but they kinda gave me a list, I think it was like 3. I am not understanding why all the sudden she is getting these line infections. This is the 2ND time and she had never had any before, but I did realize that when some nurses do the line changes they are not as sterile as they should really be. That really bugs me, I was taught to do it one way sterile and they totally do somethings wrong, which they could contaminate the whole line. I hope this line infection does not stop her from going to Palo Alto this coming week. She is scheduled to go on Monday but is on antibiotics and last time they didn't want her to go while she was being treated with antibiotics. Ugh this is getting very hard for me and very frustrating. I just hope they get rid of the line infection and she gets omegaven on Monday. That is her set date the 28Th, the doctor will be back into the country on the 26Th and he will be ready to treat her. Adriana is still on her feeds, she is at 2ml every 6 hours and stops for 2 and back on for 6. So she gets 12ml every 6 hours and takes time to digest her food for 2 hours. She has been having residuals but is processing the food, so it's not like nothing is being precessed. She just takes longer to process it due to the stomach being squished. We will have a new doctor on service today, I just hope they don't take her feeds away. Every time a new doctor comes on board the plans change, I know she has short gut but she is tolerating her feeds even with residuals, she has been on feeds for about 2 weeks or so maybe even almost 3. I am not exactly sure what date she started but is doing well with them. Many doctors come on board and think just because she only has 45cm of small intestines that she just cannot eat, you never know what she can really do until you try, Right? Well look at her now she is not dumping her food, I know it is very little but hey before she was getting less milk and her ostomy output went way up. Now she is getting 18ml over 24 hours and has a lower ostomy output, her normal right now with feed is any where from 93-120 but last night she had 130 out, I am not sure if maybe it's because she has a infection or something. Well hopefully Adriana will get over her line infection and be on her way to Stanford on Monday. Here is a picture of Adriana yesterday, she is wearing her flower headband which looks really cute, I know it's big but the nurses couldn't help but put it on her and take her picture for me. I made her this headband and some others.

Adriana has been doing well she continues to get her thyroid medicine orally and is taking it. Although she makes faces and just want's to spit it out we manage to get her to swallow it. I have not yet tasted her medicine to see if it is bitter or if it just her. When I was giving her a bottle with breastmilk she did the same, she acted as if it had a very bad taste and would try to spit it out. Adriana's ostomy output continues to come down, they also changed her feeds. She was getting 2ml every hour all day but she had too much residuals so the doctor changed her to 2ml for 6 hours and a 2 hour brake and back on feeds for 6 hours. She seems to be doing better with this but she still has residuals like 5 or 8. The rule still applies, if it is less than 10 just re feed it to her and start her feeds. If it is more than 10 most likely they toss the residual and start her fresh on her new feeds. I hope that as soon as she get's on omegaven she will be able to tolerate her food better. This will help with the liver function and spleen so it would be easier for her stomach to digest and brake down the food much faster than now. Right now she can not be on feeds every hour because she needs some time to pass her food down. Adriana will be takeing her trick to Palo Alto on the 28th, the day she will be started on omegaven. Soon I know we have been counting down the days. Adrianas ostomy output has varied but it came down to the lowest she has ever had it which is 93 in 24 hours and that is with feeds. I don't remember what was her lowest without feed but I know it might have been around 150. I hope her body is doing what it should be doing and like I said hopeully omegaven plays a big role in her feeds. I am not sure if we will have to put Adriana through another surgery, most likely we will but I don't think it will be any time soon, at least I hope not. So keep your fingers crossed that she continues to do well.

So yesterday we got the BIG news. As you all know Adriana has been taking her thyroid medication orally to make it easier for when she comes home. It would help so I owuldn't have to brake into her med line at all and it would make it better for preventing infections. Well I was told they would give it to her orally and after a week of that check her levels. Yesterday her levels were checked and they came back NORMAL. I was so excited when I heard that, especially knowing she is taking it orally and it's working. I never thought Adriana would be able to take her medicine orally, well the absorbing part. Things are turning around for Adriana and getting much better. She will continue to take her medicine orally and we will continue to check her thyroid levels to make sure things are normal. She continues her feeding but now is at 2ml everyhouur all day. She constantly is getting 2ml everyhour and never stops. I hope she does well with this, the doctor told me to knock on wood, we are trying to see what she can tolerate. She has never done this well with food since after she got part of her bowel removed. So if she is absorbing her medicine she must be absorning her milk too. I just know it, I mean her ostomy output use to be high without food it owuld range 150-170 and now with food it has come down to 110-120. It has been like that since her feeds started. As you may all know she continues to have residuals, if they are greater than 10 the doctor decides what to do with it. It works best with her to just dump it and start fresh, because if you just keep adding to her residuals it slows down her digestion and she will just have more to digest. I mean how could you really expect her to digest fast when her liver and spleen are squishing her stomach

Adriana and her Dad as you can tell she is yellow but soon that will change. She is on her way to get omegaven which as you may all know will really help her as it has helped other kids.

This will be my new place to blog, Adriana has a caring bridge page but you are very limited to what you can upload so I decided it's time to move on up to this. From now on I will continue to write about Adriana's journey on this page. Adriana is doing well for now, she has not had any problems lately. The last one was with her line infection but thank god we had that removed and a new one placed. She finished her antibiotics on Monday so right now the only medications she is taking is her thyroid and iron. I was told the iron is because her hemoglobin is a little low and there is also a study showing that taking iron may also help with absorption. That Is what I was told, I hope it does help her. Her hemoglobin has been low and I was told it was due to her liver. The liver has many jobs and since it is not in tip top shape right now due to her TPN it is not doing everything it should be doing. Adriana will be going to Stanford on the 28th of this month. On that day she ill begin Omegaven. As you may all know I have been trying to get it for her all of this time and now she will finally be able to join the club. Her bili is at 6.4 that was from her lab work yesterday. As for her feeds are at 2ml an hour for 4 hours, they are giving her trophic feeds. This is the best she has ever done with her feeds, they have tried many times feeding her and all she has done is dump. It looks as she is not dumping right now, although it is not for nutrition reasons she is taking it very well. Her ostomy output has changed, it varies day by day but it comes down and goes back up to her normal number. Her urine as well is good and it seems as her body is responding to her feeds. The doctor feels as if we are headed in the right direction with her feeds. Only time will tell how well she does or what she is capable of. Adriana is being seen by a PT and OT, hopefully they can help.