Since our last post Adriana started to run a fever so we had to take her in, we were out in 2 days she tested positive for influenza A. It w=felt like a longer stay with Adriana running high fevers all during out stay, the only thing that kept her comfortable was Tylenol and ibuprofen around the clock. She came home with both of those and some tamiflu for 5 days. After a week she felt better and got back to normal, she has been doing fine since then. I was not able to play with her feeds since she was putting out more when she was sick with the flu, as takeing meds would not have been the time to increase feeds. I increased her feeds last night to 26 and hopefully she will tolerate it, fingers crossed. It has been a while now that she has just been at 25ml/ hour for 20 hours now. I think its time to keep moving on up but of course its not up to me. That is the only change, she has been gaining weight but they had also bumped her dextrose at our last visit since her weight was flat. Adriana is my little miracle, she has something new to chow me daily and loves to talk, says everything you say and more. She does not walk but crawls like a crazy person as well as cruise. She will soon let go and just take off, then nothing will hold her back and we will have problems. The good thing is she only runs her tpn/lipids for 12 hours so during the night only and comes off in the AM.

Adriana has been doing good, she did have her GI appt not so long ago. Her next one will not be untill March 2 days after her 2nd birthday. Adriana is doing good, she has had no line infections lately and she has been able to stay out of the hospital. Her liver is doing good and healthy no problem with that, her weight has been a little flat for a few months now. They decided to go up on her dextrose just a little, that should help her gain weight but at a slow pace as they want her to. Adriana is not yet walking by herself but does stand of course holding things and cruises while holding on to something. She will walk through the house with her walker but not yet so confident to let go and do it all by herself. In no time she will be walking, she is a very happy baby. She drinks water which she enjoys doing and licking lolly pops which she also enjoys doing. She does not yet eat but does try certain foods and tastes them as well. She will only accept water, anything else she iwll not drink. She enjoys exploreing arount the house and loooking for something to get into. She has learned to open all drawers and at time I find myself picking up clothes around the house that she has decided to pull out. She also loves to meet new people and all the attention she gets. She loves to say Mio for everything, meaning it is all hers. She does share her toys and loves to play with other children.

Adriana is still at 25cc a hour for 20 hours right not but her GI decided to start her on Flagyl. Its suppose to treat BO if she were to trully have any. She has never showed any sign that she may have it but her Gi feels that that might be the reason why we have not been able to advance her feeds. Adrianas last day on Flagyl will be today and then tomm I will check her output and then advance to 26 and see how she does. Cross your fingers and hopefully we go up from there, we have been lingering at 25 for a few months now and I would love to see a new number on our machine. Adriana is doing well other than that, she has not had any issues with anything. I ahve been treating some angry granulation tissue under her gt tube but it has gotten better and as long as being treated it seems to stay under control which is always good. Besides all of her complications Adriana loves life, she enjoys bath time with her Dora mat and ridding in the car in her ar seat. She will always point out the window meaning she wants out or say beep beep meaning she wants to ride in the car. If she seems me or her dad getting ready she gets excited because she thinks we are headed out the door. I will add pics of Adriana as soon As I figure out how to get it working again.

new years

We had a very good Christmas this year, Adriana loved it and watching her was priceless. She enjoyed playing with all the kids and the comotion that was going on. She did not go to bed untill 2:30 am. She enjoyed her gifts and toys of course, she had a favorite one. Her drums, she enjoys banging on things. Adriana is crawling like crazy, she crawls very fast, she also pulls herself up to standing. She enjoys to turn off and on the TV and changing the channel, she also found a new hobby which is opening and closing the drawers. She doesnt yet pull anything out just opens and closes. She can also walk independently with her walker, she walks with it. She will be walking soon and then we will have trouble. lol..... Adriana carries her backpack with her milk which she hates wearing at times, she screams and complains when I am going to put it on her. She doesnt mind other times, she is only connected 20 hours on her feeds so has 4 hours free with nothing on her back. She runs her TPN for 12 hours so only at night when she sleeps. Life is getting easier with Adriana and of course I have this short gut thing down so I know what to do in case of any emergency. Adriana is healthy well for being a short gut kid of course she is medically fragile. I enjoy every moment with her but at times she does drive me crazy. She is a very sweet little girl who loves to be loved and show love as well. She enjoys sleeping on daddies tummy and being hugged and kissed at all times. She is very undependent and enjoys doing many things for her self with no help. She laughs and giggles for no reason at times but it brightens up your day if you feel bad. She has no idea what is going on with her but at the same time she is enjoying her life and nothing puts her down. She may be small but filled with life, she loves bath time and enjoys splashing in the water untill her skin gets prunny and splashes half the water out of the tub. I try to live our life normal but at times its just a little hard, especially when she gets infections or gets sick for any reason. Everyone has a purpose in life and I am not sure what Adrianas is but I enjoy every moment with her. She can turn my frown upside down very quickly by just making funny faces at me or smiling. Adrianas 2nd birthday is coming up, March 6th, i cant believe it. 2 years, of course the first year was the hardest hopefully the rest arent as hard. I will post pics

update

As you can tell by the pictures Adriana has been doing fairly well, we wont be seeing her GI untill Jan. We last saw him oct so that means 2 months without Drs. Adriana is still on 25ccs on her feeds and has been haveing a hrad time advancing, she seems to really be stuck. I bump her to 26 and she puts out more than she should, I also just stopped her benefiber and started to add something else to her milk. I am hopeing this will help with the absorption and lowering her output so I can continue to increase her feeds. It is hemp protein + fiber, she did start to put out a little more than usual on the first day but it is always normal with her when you make a change. I am going to give her a few days on it and see how she does. She seems to be doing fine but I have yet to measure her output and see where she stands right now, that will either tell me I can advance on her feeds or we just have to stay at 25 a little longer. Adriana is a pro at crawling and even likes to kick it in turbo gear at times and flies through the house with her backpack on. She does not mind wearing it and it doesnt seem to hold her back from doing anything. She enjoys takeing down the picture frames I have in the living room and makeing a mess right after I clean. She of course is just a nomal baby I dont think she can get more normal than she is. Adriana can pull herself to standing position and takes steps when holding to things, she is just scared to let go, I am sure as she lets go she will realize she can walk. Hopefuly soon but not too soon I am already chasing her around the house as is. She loves to sit in front of the heater as she knows she is not allowed but does it anyways, once I get up and go get her she starts to crawl in turbo gear and just laughs. Crazy girl.... She babbles like crazy and seems to keep a conversation but of course mostly everything she says does not make sense just a ton of bable. She does say words like mama, papa, bebe, wow wow is dog for her, baby, hi, bye, buh bye those are the most commom ones she says. We will hopefully soon get our christmas tree and I am sure she will just try to get under that as well..... she will love the lights tho, she loves to look outside since mostly all of our neighboord have some kind of decorations on there houses, they all have lights and she loves looking at them when it is dark, besides her just being nosey like she is. Our Goal is to stay out of the hospital and hopefully she doesnt catch any bugs... I would just like a normal holiday.. So lets see what happens...

Pictures

As promised pictures of Adriana...


Guess who?

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...