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...

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.