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.