We are still here but its hard to update when you have a childr crawling all around the house and getting into things she shouldnt be getting. Adriana is doing great, she was in patient last week for a infection, well that is what they like to call it. She only had one positive culture in the ER and then the rest were negative including peripheral stick. I am sure she never had a infection and that they contaminated the blood draw. Well we were in for 4 days and then came home with a week of antibiotics, her last day will be sunday. She has been doing well other than that, she is trully growing up and just doing more things each day. She is crawling like a pro and nothing holds her back. Adriana carries her feeding pump and milk in a little back pack that was a Gift from Louise and Juliana.. Thank you again she loves it. Adriana is learning more words each day and loves to say Bye to everyone. She can say many words and just loves to talk all day long. She tastes all sorts of food, she will grab everything in her plate and just taste it all, she will bring out her tounge and start licking it all. She will not chew any of it of course but she has made a big advance in just bringing food to her mouth and tasteing it.

Adriana is doing ok on her feeds, she is still at 25cc cont, well for 20 hours but I like to keep her at 24 hours so she will get those extra calories. She has gotten to 26 and then starts to put out too much so back to 25, we are stuck for now. I know it is not perminet so I am not worried. She advanced very quickly on her feeds from 1cc to 25 so she is now 50% calories. Her GI doct is very impressed on how far she has come and how healthy she looks. He said she is doing very good on everything and has advanced very quickly. She is headed the right direction and for me just to keep playing with her feeds and trying to advance. Adriana was running her TPN for 16 hours but since her GI said she is very active we cut her to 14 hours and if she does well then next Tue she will be down to 12 hours. That means she will run all night and be off all day, Adriana is very active and tugs her lines to the limit. She really needs to be off all day now, as for she is learning to walk and will walk with help. If you hold her 2 hands she will start to walk like crazy, In no time will she be walking, then there will be major trouble. There were no more changes, That wad the only thing her GI changed. I will keep trying to advance her feeds and see how she does. Adriana is in the 85-88% tile for her weight, but she is evening out for her length and weight. She looks great and healthy and is growing on her own curve as well as her weight she has her own curve on the chart. She started not even haveing a spot on the chart when she was born.

Adrianas mickey was replaced with a smaller one since we were haveing major leakage from it, she had a 14fr 2.0 and now she has a 14fr 1.7. A smaller one, at the time Adriana got her 2.0 it was a snug tight fit but since now Adriana is longer and muck skinnier she needed a smaller one of course which is normal. So we got a new one placed and this one is a snug tight fit as well so we have no leakage or problems as of now. As for her ostomy she has great skin right now and the bags stick very well, they last her a week and when I change it its not because of leakage its just so the bags arent too old.

I will be adding pics of Adriana soon, other than that Adriana is doing very well and her health is under control. We hope to have good Holidays and stay out of the hospital as long as possible.

Oh may I add one more things Adriana had her line repaired while we were inpatient. A nurse popped her line, he was trying to flush it and pushing agants pressure so they repaired it. We have had 2 repairs both due to nurses not knowing what to do or care for the line. May I add I have been the only one doing all of Adrianas care and touching her line and have never broken it nor has she and she sometimes gets her sticky hands on the line and pulls it with all her strength. She has only ever had 2 repairs and both a nurses fault at the same Hospital. May I add she does not go to that hospital for her care we go to Stanford so she will not be going back there again......

Things have been getting better in our household.Adrianas cold has gone away. She has no more bad cough and is able to sleep all night.She also sleeps in her crib again, and not in our bed.She has been doing good and advancing in everything. She says mom,dad,baby,and some other stuff, she is just ready to talk. She also doesnt want to be treated like a baby anymore, she has her own big attitude. Her feeds have been going good, I actually advanced her to 26 yesterday and she is doing good with it. Not dumping that I can tell so absorbing it, she has already reached 50/50 calories for TPN and feeds. She is doing great and hopefully continue to dvance on her feeds so we can get rid of TPN. It will take time but I am happy where we are right now from where we started we have come a long way. We have clinic this coming wend and hopefully she gains weight. She had stayed the same for 3 weeks and not gain anything so she has to gain weight this time. The other problem as well was she had this really bad cough she just got over and she was also vomiting alot so when she was inpatient the scale showed she had lost 2 oz but its a different scale so not always as accurate as the scale she usually gets weighed on.I would really like Adriana to start getting real food via gtube since of course she wont take it orally. I am going to ask GI about that when we see him and see what he thinks. We will be starting benefiber tonight after I get the total for the 24 hours of her output. I just dont want to do too many changes at once and not know what is what....The other good news is Adriana is starting to drink water, she will accept it when I offer it. She also goes crazy opening her mouth when I have a frozen gogurt in my hands, she tries to take it from me and put it in her mouth. Food she is starting to bring to her mouth as I show her I do so she is mimiking me.

Halloween is coming up and she will be going trick o treating for the first time. She will be a pink panther this year and will most likely go crazy when she sees other kids. Her dad will be takeing her and i will be staying home passing out candy. I will put some new pics of her as well as her with her costume on. She is much bigger and alert than ever as well as looks great and is doing great...

Very long time no post...wow I cant remember when. Adriana is getting over a really bad cough..She is starting to feel much better and my sleep has been getting better of course. She has had this for a little over a week now but its almost gone. She did take a visit to the ER the other day and they started Iv fluids on her since she had been vomiting alot. She did have high pancreas numbers so she was admitted. We were in for 2 nights and were free to go home after that. She still vomits but not as much, not exactly sure why she continues to vomit If I have not messed with her feeds or anything. She is on 23ccs cont, she has gotten up to 25ccs and had been doing fine but with the vomiting I decided to bump her back down for now. Hopefully once this bacteria/cold is over I can get her back up to 25. Lets see how things continue to go with her, She enjoys drinking water..maybe not a whole ton but is drinking and not chocking. Other than that there is nothing new with her.. she hasnt had any line infections or anything else.

Halloween is coming up and she will be a pink panther and will be going trick o treating this year. Adriana came home from the hospital last year on Oct 12 she has officially been home for a year now. that of course means a year woth of line ocnnections for me and dressing changes as well as bag changes. Wow it has been a whole year and Im still not crazy. Never thought it would be possible the day she was discharged I was scared to take her home even tho I had been dying to take her home. She is still here and doing good, she has not had many line infections and is only on her second line which her Gi told me she is doing great. A year ago she could not tolerate any feeds and now she can tolerate 25ccs cont so far. I am sure One day she will be TPN free but I am not sure how soon that will be. She has also been on omegaven for a year as well and is doing great. I am sure omegaven is what has helped her get this far.. I am not sure where she would have been right now if she had never gotten omegaven.....

Reaching the end of the month already..it came and went fast. Adriana is doing good just being her crazy self of course. She loves to get into just about everything you let her get into. I started her on Pectin 1 week ago, the ingredients were 12ml of pectin and 500ml well 495 ml of formula. She started to have a little more out in her output but within a few days it settled back down. I did not notice a change in her output, it was not any different nor did it have more of a form since she is liquid y. I then asked if we can go up on her dose, maybe it wasn't strong or enough and I bumped her Pectin to 15ml now and seems to be doing fine still no change in output concentration. I did bump her feeds to 22 a few days ago but her output went up to 450 which is more than the 350 they wanted to see. I bumped her back down and just bumped her nack up to 22 and she is doing fine, I dont think she will be passing the 350 mark this time.

Adriana is doing a lot of babbling, believe me if you talk to her she will answer you in her own language which I dont seem to understand. Only she knows what she is saying of course....she is getting much bigger and brighter each day. She is now weighing in a little over 23 pounds and I am not exactly sure how long.We bought her 2 pjs yesterday one Dora and the other Spongebob square pants she was so excited. I put them both out in fron of her and asked her which one she wanted to wear and she choose the Dora bottoms and Spongebob top, so she wore that to sleep last night. She was so excited that she stared at her pjs and giggled, she knew who they were. She now does not lay flat in her crib, she sits when you are not looking and turns herself on her tumm in crawling position. From there she does not know what to do so she starts to scream...silly her of course. She lifts up the bumpers in her crib and says mama and papa because our bed is right in front of her crib so she can see us if she wants to.Adrianas feeds are now up to 20ccs cont and she seems to be tolerating it so far, tomm we have a GI appt in Stanford lets see what they say. As for her skin her ostomy bags has healed. She has no more raw skin or anything like that which is also great we sampled a lot of ostomy bags and have finally found some that work great for her active self. They are bigger than the newborn ones I am use to putting on her but she is too active so they just dont cut it any more.Adriana is getting bigger its just a normal part of life. She cannot stay still anymore she just wants to go and is very talkative.She is doing good nothing new with her just being her.

Adriana is doing good, it has been a very long week, with nothing but runny bags and very raw skin. Last week her skin was so raw that her bags would not even stick to her skin. I tried not bagging her and catching her output in a diaper which just made things worse. So much for that, I also tried letting her skin dry and nothing worked. I tried just about everything with her and nothing worked...It was a very long and exhausting week. This week is getting better and her bags are sticking much more and staying on much longer to give the skin enough time to heal. She still has raw skin but it seems to be getting better.As for everything else is all the same, she is still running her feeds well I bumped her to 19cc cont.She is putting out a little more than before but that is always normal with her. As for the good news Is I realized that when I stopped Adriana's feeds she got hungry and accepted the food I gave her. I gave her some fruit for her to taste of course she did not eat it but she did open her mouth every time I offered it to her. That just made me that much more happy. I think things are starting to look better for us.It was about time

It has been a while.... well we are all doing well Adriana is doing good.Aug has been a very busy month for her, she had a lot of hospital admits this last month. She was in with a line infection for a week then back to check gtube placement. Before that she was in for a week since she had just had her gtube placed. So far so good right now, yesterday she finally got her mickey placed. It beautiful compared to her high profile mic...not as cute. I will post some pictures of it... Adriana is now down to 16 hours on her TPN and 12 on omegaven. She is growing really fast and looks great, she is advancing and every day has something new for me to see. I will bump Adriana to 18ccs on her feeds today, that is where she was before surgery.. we finally made it. Now we will continue to advance and see how she does with more than 18, hopefully she does well. I cant wait untill we can start her bolus feeds, she will be line free during the day at times, wow How I would love to have my daughter line free. The smallest things can make a person very happy...Adriana is also starting to drink water...I will give her some drops on her lips and she will suck them in, as for some ice cream which she only takes from her dad. She does not crawl yet but will just rock and really just wants to go....she does stand but not yet walk or cruise, she is scared to.Adriana has been doing great and she has come a long ways.. from now being able to be cycled from her TPN running 24 hours to now 16 hours and not being able to tolerate 1cc to 18ccs....my true miracle.