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.

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.

It has been a while.... well Adriana is doing well she was in for a line infection at the beginning of the month. She was just in again for the gt tube. They checked for placement to make sure it was still in the stomach which it is. She was discharged yesterday and just took a bath and a nap as well. They were not able to switch it out for a mickey quite yet because she has granulation tissue and most likely will not let the mickey sit correctly. We will hopefully get it s/o on sept 1st lets just see how things go. Adriana is not at 14ccs and our goal is 18 well she can tolerate 18 so past that to hopefully get rid of her line and tpn.

Adriana got a line infection the day before her GI appt. We took her to the ER and she had blood drawn and we were admitted. It came back positive for gram rod posotive cocci. Well she was on vanco and her fevers stopped they lasted for 2 days and she looked miserable. As her fevers went away she started to feel much better and act like herself. We were there for a week and finallu got out last Tue. i was so happy to get out we had some very crazy and horrible things happen to us. Adrianas broviac broke, well it didnt brake a nurse busted it. How? I am not really sure she said she was flushing it and it busted she may have been flushing it with too much force for it to brake, of course it was the skinny part that broke. They repaired it and her line is fine as of right now but of course I was really mad. I have been takeing good care of her line for a nurse to bust it in 2 minutes. We also had some nurses that did not know what to do with Adriana or her broviac. Next time when we get there I am going to ask all her nurses have you ever worked with a broviac? I am really tired of all these nurses that think they know what they are doing with her and really dont. Ugh it makes me mad and frusterated because they dont want me doing Adrianas care in the hospital. When I asked for some Saline flushes to flush her line the nurse gave me a blank stare and asked me why do you need them? i told her to flush my daughters Central line.... she then said Oh no no I will let your nurse know. I told her you know what my daughters infusion has finished 5 minutes ago and we yet have a nurse to step foot in the room and I dont want her line to clot. I then told her I do it all the time so I didnt need a nurse. She would not give me a line flush..ugh I had more experience working with the line than she has so whats the deal? Dont you just hate when that happens. Well we are finally out and running antibiotics at home... She is on Vanco the eclipse balls so since I already have taken those home it was easy. Adriana is on 12 ccs cont but I will bump her to 13 today and hopefully by the 18th we will be to 18ccs. On the 18th we have a GI app and will also see the surgery team, they will give Adriana a mickey that day and take a look at her gt tube site. It has some dreadfull granulation tissue. I am putting some Hydrocortosol I think it is called which will help it not be so inflamed.

Adriana after getting out of the Hospital

It has been a while since I have posted anything on here. So here we are now with a gt tube all going good with it. I love it makes everything easier from her not tugging like she use to on her NG tube. She does like to play with the line but does not tug on it, weird huh??? well anyways I am working on advancing her feeds back to 18cc where she was before gt was placed. I just bumped her to 9ccs and lets see how she does. 8ccs was fine so lets see 9, her ostomy output is a little higher than when she had her NG tube which is weird I dont know why but we have clinic this wend and we will see her GI doct and also the surgeons. Her GT is fairly wasy to care for, I turn it once a day and clean it 2 times a day. It is a very good fit so she does not have a lot of leakage around the site. Maybe a little milk but not much so I dont have to put a gauze or anything I just take it so it doesnt come out. She will get a button in 6-8 weeks I think they had told me once. Well Adriana got a bathing suite and a pool and we decided to out her in in. Our GI doctor was ok with it.. no questions asked. I changed her put some tape arounf her tegaderm and in she went.. she splashed for a while and played she loved it. The best part for her was when her dad got in with her. She went crazy but then it started to get a little cold so it was time for her to come out. It was a success so she can continue to swim.... I then changed her dressing even tho it did not get water under the dressing and also changed the cap.

Before and after surgery

Thought I would post a little something filled with some pictures of Adriana...


Yes before NG was removed..




Adriana taking a nap without her shorts but kept her sandals on..





Adriana now.. NO NG tube...

long time

I know it has been a while since I have posted anything on here but our life got kinda crazy for a while. Adriana is doing good she got her gt tube placed last week on the 6th and not all went as expected. They tried lapriscopicly but due to her haveing too much scar tissue they were not able to. They had to make a insicion in her tummy and they had to seperate her stomach from her intestines. the surgeon said they were fused together by a lot of scar tissue. In order for him to place the gt tube he had to seprate them or if he would have placed it he could of punctured something. That would then suck even more... so surgery went well and healing too. The gt tube was a set back for feedings tho, when she went into surgery she was able to tolerate 18ccs cont which is about 14 oz 4 ml a day of course. Now she is only able to tolerate 6ccs cont which is about 4 oz or so. I was told since they did mess with her stomach and intestines it seems to slow down makeing her not able to tolerate much feeds right now. It is not a permanent thing but I have to slowly bump her up to 18 like I did before. With some time and enough healing time she will be back at 18cc. We know she can tolerate 18ccs so moslt likely she can tolerate more little by little. They altered her TPN to adjust the calories that she can tolerate thru tube feeds and so she will continue to gain weight of course just get a little more from her TPN than milk. Other than that she is doing great and I am starting to get a hang of her GT tube it is not as hard as I thought. The hard part is to watch her to make sure she doesnt get her hands on the tube and yank it out. It is still fresh so I wuld have to take her to the ER to get in fixed and checked for placement.

18ccs went ok

Like I had mentioned Adriana went up to 18ccs on her feeds which is 14.4 oz a day. She seems to have put out a little more than when she was on 17 but its not a big difference. I am going to keep her on 18 untill next week and then bump her to 19ccs. On our last attempt at 18ccs she put out a lot all of the sudden so it got better this time lets just see what happens. Adriana is doing good but she just cant stay still at all. Any where you put her or sit her she finds something to tug or play with, which is usually her milk tube. She will bite it and play with it. I put it behind her and just some how she manages to get it so I need to make sure to keep a eye on her. She is now being cycled for 6 hours which is great so i dosconnect her at 3 and shes off till 9 pm. I enjoy it and it makes it easier for me to put tank tops and stuff like that since her line is taped down and disconnected at that time. I run her line over her shoulder and across her bag since her ostomy bag is also on the left side just under her central line. Why the surgeon placed it there? who knows only he does why he did, but I've learned to manage. She will be getting her mickey placed on tue so lets see how I manage to do that, just something else to add to her. We will get rid of her NG tube ( the yellow line in the nose) is feeds her milk. That I am sure will make her much happier to not have, since of course it bugs her when she sneezes and coughs. She has been a trooper with keeping it in these past few months. I replace it 1 time a month and it doesnt come out untill Its time for me to replace it. Of course she scratches the tape untill its almost off but then I know its time for new tape.

surgery date

Adriana has been doing good, we are working on her standing. She thinks its funny to stand in front of the mirror and see herself. She has a blast with that, her little legs are getting stronger and stronger and she is able to stand a little longer each time. The only thing is she does not have good balance so if I let her go she will fall to the side. She's working on all of that I'm sure withing the next few months she will be walking, she has been wanting to do it since she was much smaller but of course not possible. I'm sure when she starts walking nothing will hold her back. Adriana's surgery has been scheduled for July 6Th, she will be getting her gt tube placed (mickey) in Stanford. She will have a great surgeon very nice as well, its hard to find a friendly surgeon. He told me the surgery would take 30 minutes but gave me a estimated time of 1 hour 30 minutes just in case. It will be done lapriscopicly if possible if not he will make a little cut. Hopefully no cuts, she has plenty of that. I bumped Adriana's feeds to 18 last night at midnight and so far it looks like she is tolerating, lets just see what the 24 hours show. At our last attempt at 18ccs she started to dump like crazy I hope that is not the case this time. Her GI told me we will move a little slower on her feeds maybe she just needs to slow down a little but he told me it doesn't mean she will be stuck at 17. She has been moving pretty quick on feeds so its OK to give her a little break. Everything else looks good with her, she also has a appo with the eye doctor to get her eyes examined on July 14Th. When she saw her pediatrician he felt that her left eye was a little weak, so he would like to have them checked out. He said most likely she has nothing it could be the that her nose is narrow so its a false image but just in case. I agree so lets just see what happens with that, I haven't noticed that, she sees just fine but we will see.

long day.....

Yesterday was a very long and over welming day for Adriana and me too of course. She had a upper GI done yesterday and things look good. They just wanted to see the first part of the small and it looks fine nothing wrong. From there we went to clinic and that went pretty well. Adriana is not getting 45% of her calories from her milk and the other 55% from her tpn. She is no longer tpn dependent but of course still needs it. She is gaining at a good rate, not too fast but of course just enought for them to be happy. She will now be cycled off her tpn for 6 hours now she was 4. I will keep increasing her feeds 1cc a week, it was going up 2 times a week 1 cc each but she has reached a number and kinda needs to slow down. Her gi told me to keep increasing but lets give her gut a break and do it a little slower, he is sure she will continue to advance. From clinic she went to see the surgeon he explained the procedure, whe he would do and how long it would take. He was a very friendly surgeon the only one she has had was not at all. This one was very nice and even spoke to her and made her smile. I was not able to set a date for surgery since we were running late and the coordinator for the surgeries was busy helping some one else. I was told she would call me and then we would get a date. Fom there we took our long drive home and of course it was bath time for her and dressing change. By the time I finished all of that it was just about time to connect her and put her down to bed. She fell asleep quick there was no playing in her crib this time. Adriana is doing well in everything, she is starting to stand. She is not standing holding onto things but for a very short period of time before she feels like sitting. We are working on it with her and her chubby thighs are getting stronger. She also says mama and papa pf course, nothing else but babbles as if she was haveing a conversation with you. Nohting else with her for now, our goal is to get her tpn down ro 12 hours and eventually little by little get rid of it of course. Adriana will be getting a mickey placed, the surgeon told me she will come right out of surgery with one.

18 and podssibly dumping

It looks as If Adriana has reached her maximum number for her feeds. She went up to 18ccs cont last night as has bit putting out a good amount. I called her GI doctor and he told me If I wanted to , to go ahead and bump her back down to 17 or to let her be for a little longer as see if things slow down. I think I will let her be for a little while more and see what happens. Our number was 350 to watch and she might just get there today so far she has 133 and I bumped her feeds at 1 am and emptied her back at 3:30 am for the first time. Lets just see what happens, she has been moving pretty fast on feeds which is great I hope she doesnt stay stuck here for a long time.

reached our number

17ccs

Adrianas feeds were pumped up last night to 17ccs she is doing fine nothing new all looks the same. It looks as if we havent bumped her feeds in a while but thats good.

more news actually Great news!!!

So Adriana's feeds went up to 16 and she did well, nothing new she is absorbing it all. Her output actually came down from the 15ccs to the 16ccs. She is great, perfect I just can't believe how well she is doing, how her tummy listens to me when I tell it to get better and to do what it needs to do with the food. I know I'm weird...... I just got off the phone with the NP from Dr. Castillo's team, our GI team and she told me that Adriana is absorbing all of her food and not to worry. She told me that our next GI appio has big things for us coming, which is next wend. I can't wait, she told me that by then Adriana should be up to 18ccs, they might want to have us try bumping her 2ccs each time I bump her feeds since she is doing so well with 1. She told me they might also put her on bolus feeds in the day and have her running her drip feeds at night so she might just get hungry and want to eat as well as she will be disconnected from her milk too!!! Thats great news to be able to carry her from place to place without carrying a backpack too. They will also look at dropping her hours of TPN down so we can cycle her more hours. We will have our upper GI done that same day just earlier so they told me they can kinda just look at it and give me the rough draft news, which of course is not as accurate as the final reading but it is something. Oh I just cant wait...... that is all the news she told me when she spoke to me but thats a lot of news!!! Great News.... I just hope everything goes right with Adriana, i am so use to her doing good and then make a turn and not do so great. I am just not use to haveing good news with her, I know she can do it. I know she will loose her lines and probably have a gt tube in for a while but that ok I can deal with that..

up to 16ccs

15ccs went well of course she did come up a little but nothign drastically within the normal range. Adriana is now up to 16ccs and so far so good, I wander how far she will get on her feeds? Anyways nothing new with her all is going good. No news is good news better than bad news right? She of course is doing new things daily and just realized she can yell. She hollers all day for no reason at times but she seems like she is dying to talk and cant just yet. She can say mama and papa and that it but she can yell your ears off. She thinks its ok to yell at just about any place, wherever she feels like it. It better to not even tell her anything because if you tell her no she will do it worse.

increase feeds...

Adriana's feeds went up today in the am, I will finish at 5am tomm morning. So far so good, it does seem like she is putting out a little more but I have to wait until the 24 hours are over to really know for sure. Her output might just slow down during the night like it usually always does. She puts out more in the day and less at night. June 23rd we will be seeing her GI doctor and we also have 2 other appoi that day. We will have our consultation with the surgeon regarding a gt tube and also a upper GI studdy that day. Adriana has a long day ahead of her, lets just hope we get good news for every appo. Hopefully we will cycle Adriana longer than just 4 hours that she is being cycled right now. Lets see how that goes, as for her upper GI study she had one way back, I am not sure when exactly but I was told it showed that the ink reached her bag in 15 minutes, I dont think that is what it will show this time. Lets just see as for her feeds she is up to 15ccs and so far so good, when we see her GI doctor if all goes good she should be up to 18ccs. Here are some pics of her today.....


Always wants to yank the camera from me


You say "Bravo" and she begins to clap


no comment


Cheese


She likes her fingers


Just Adriana being curiouse

Picture fun!!!

Mommy and Adriana

delivery

We got our new delivery today, tpn and tubing. They went down on her dextrose since she did gain 10 oz in 1 week. As you all know she is moving up on her feeds pretty fast. I bump her feeds up 2 times a week and she tolerated the increase to 14cc cont on monday so friday I iwll bump her to 15cc. Its so great to see her thirving and getting better. She has come a long way from where she started but I always knew she could prove everyone wrong. It was just a matter of time...

moved on up

... to 14ccs, so far so good. I bumped her feeds and lets just see what happens. She gaines 10 oz in 1 week which is way too much so lets see if they alter her TPN, we will not be going to clinic untill june 23 which we will also see the surgeon and make plans for surgery. Adriana is fighting a ciold, which she does not yet have but is either getting or fighting it off. She only has a cough and of course runny nose, ugh I know she will get better soon. I am still waiting for radiology to call us and set up a appo for her upper GI but no call just yet. I guess they might just be booked or something. Well Adriana was baptised on Saturday and she had a party. She had fun and got to see a lot of kids which she just loves of course. Lets see how the 14ccs go and I will have the rsults later,......

gastric emptying and feeds advance

We got the results back for Adriana's gastric emptying, its NORMAL. Normal is not a really a word for her since nothing about her is normal but I was told the gastric test showed that everything is working. In a hour she showed nothing in the stomach meaning it does what it should do. The last test they did was way back in october and it showed no movement in 3 hours I believe. That was why she was not able to tolerate her feeds, I guess now I know. Well she is doing basiaclly amazing and seems like she might be getting a little cold. She has been coughing the past 2 night and a little ocngested here and there but hopefully she fights it off and doesnt get sick. She needs to be well for this saturday which is her baptism and her big party. Well we will have a upper GI done as well and lets just see what that shoes. Hopefully it also shows a big inprovement like this exam. She has come a long way and is a amazing little girl, I always knew she was capable of more than the doctors credited her for. She also gained 10oz in 1 week so they might also alter her tpn or lets wait and see. She is absorbing all of her feeds and is at 12 so far but tonight in the am I iwll bump her to 13 lets see how she handles that. Shes been a trooper through all of this and has plenty of things to show off, includeing her broviac, iliostomy, and a NG for now. People do stare at her especially kids and I also get a few adults that just cant take there eyes off of her even if you look at them. Weird huh? I guess not it's something Im use to the only thing that bugs me is they look at her as she were from another planet. Anyways lets see how her feeds go.

tolerating

....her feeds, so far she is doing good with the food increase to 12, I still do not have the total for the 24 hours but I am sure she will be just fine.

moving to 12 on feeds

Going up on Adrianas feeds to 12 in the am tonight/ tomm, lets see how she does. I hope she does good but I have been watching her ostomy output and it has come down a good amount. I think she will do just fine with 12 but I am not sure to where she will get to untill she starts to have problems. I hope she doesnt have any problems but I know its very possible and most likely she will. She has not had any problems with tolerating her feeds, she did when she was much smaller and her bili was high but I was also told her stomach did not contract but it should now, since she is tolerating her feeds.

increase on feeds= less ostomy out put

The number for her ostomy output for the day with the increase of her feeds is 164. Strange it seems as the higher the number for her feeds the less she has out? Is that normal, as much as I am happy she is tolerating her feeds I want to make sure this is normal her output varies but has always been very accurate. When she was at 7 she had 203, 8=237,9=181,10=198, and now it has come down some. Well I looked for her abdomen being distended or something and nothing it looks normal and she has not been vomiting, once in a while she will spit up but only some saliva. She gags a ton but thats due to her NG tube, I called GI just to make sure, well told them my concerns and hopefully they call me back and re assure me things are ok. Adriana has a emptying of the stomach this coming week on wend and so wee will see what that shows. I guess that will show if anything is not right in her tummy. My theory is her intestines are adapting to all of the milk she is getting so with time as her feeds go up she is absorbing more and more of what she was putting out as waste before makeing her ostomy output come down. I hope I am right and not wrong,well for now I will keep thinking that her feeds are going great and she is absorbing her feeds. That should keep me good untill I get reassured by her GI team. We will be baptising Adriana next saturday just to get her ready for surgery, we have a consultation on the 23rd of june with the surgeon so he will then give us the big date for surgery. I hope everything goes as planned and she is in and out with no complications. All of her surgerys tend to take long since she does have scar tissue from all of her surgeries she has had. Maybe our last surgery will be reconnecting her stoma. She has no large only about 45 small last time we checked, but she does have a full rectum so she does have something to connect her to. If her intestines are adapting now then we will have a big chance to connect her later. Thats later I am in no hurry right now, when her bag leaks and theres a mess all over the place then I feel she needs to be connected soon, as long as it doesnt give me trouble I dont mind it being there.

Information/surgery consultaion/pics

Her feed increase was a success she is tolerating the 10. WOO HOO! Well we have a appo on June 23 to the the surgeon and have a consulation with him, they will asses her and give me a date for her surgery. i am ready to get this thing out of her nose, it has been a big help but also a big pain not just for me but mostly for her. She has been a reatrooper for having it in her nose for all these months. Even tho she has yanked it out I would put it back in and I think she was just testing me. Here are some more pictures of my little Pinata!!!

up to 10 ccs on feeds and doing well......

So far so good, Adriana seems to be tolerating the increase on her feeds. She is now up to 10 and doing good with it. I'm so happy she has been doing good with that.... at least something are going good. I will have the results tomm, I will finish measuring it today at 2:37 am well tomm early morning. The next time I will bump her feeds will be Friday and she will go up to 11.

moving on up to 10 ccs on her feeds

So tomm am when her milk beeps and tells me her dose is done I will bump her feeds to 10. She did fine on 9 and had no problems whats so ever. So far so good with her feeds this is the best news I have had so far with her feeds and being able to tolerate it. I thought she would never get passed 1 but looks like being on 1 for 2 months or so really helped her gut get use to feeds slowly. Well I will let everyone know the results once they are in. Cross your fingers that she is able to tolerate 10 and pass it without any problems!!! Wish her luck!!!

moving up on her feeds

Adriana is now up to 9ccs on her feeds, she is doing good and it looks like her normal output. It has not gone up but slightly come down so far, she is averaging the same output every 3-4 hours. The good thing with Adriana is she usually puts out the same may very but very little, so I know what is normal for her. I will finish checking the output tomm at 3 am, that will be 24 hours and I will get the number so fer she has 180 I believe. I will bump her next feeds on Monday to 10ccs cont. Lets see how far we can get on her feeds so far so good, thank god. There is no more news I haven't gotten a call from the surgery clinic to set a date for her gt tube but hopefully I get it next week. I can't believe it just looking back on pictures of Adriana when she was smaller and very sick, who knew she would be here now and be doing so good. The surgeons gave me a grim chance when she was small but I guess I can just rub her in there faces now. She hasn't been transplanted or anything just yet, it looks like she has a good change of coming off tpn someday.

Our GI appo went well today... they went down on her tpn, she will be getting less and also they went down on her dextrose. She was at 13 and they are going down to 10 I believe but as she advances on her feeds she will even out. Right now she is at 8ccs an hour and advances weekly. Her GI doctor wants me to advance her feeds by 2ccs each week, monday and friday I will bump her 1cc each day. As she tolerates the big number is 350 as long as she is under she is good. As for the NG tube it is coming out she will be getting a GT tube.... her GI doctor said he agrees with me and so he put in all of the papers and requests. Now all I have to do is wait for the surgery clinic to give me a call and set up a surgery date. It will be done labriscopicly by a peds surgeon, but I am sure they have really good surgeons there. It has been 8 months since she has had a surgery, the last one she had was in sept to get a new line and remove her old one. Her GI doctor also wants a upper GI done and a emptying of the stomach as well. I will also be recieving a call for a date for those 2 exams. He told me the last exam of the emptying of the stomach she had it showed that her stomach does not contract but this was in october. She hasnt had any new exams done since then. Her doctor told me he is sure that her stomach does contract now since she is tolerating her feeds and now vomiting it. Well that is all the good news that we got for today... they did not decide to disconnect her for more than 4 hours but thats ok.. I am very satisfied with what happened today.

pics and pics

We are getting closer to our gi clinic day... tomm yay. Ugh another thing is I left Adriana on the bed with some toys and went to the back to put in a load of laundry and when I came back she was laughing and giggling, with her NG tube in her hands. She yanked it out of her nose and had some blood on her cheek. She tore her own skin and htought it was just funny for the NG not to be where it should of been. I guess I will just have to place a new one when she wakes up from her Nap. I have pictures of Adriana a ton more I took of her but I will just post some.


She loves seeing the trees sway back and forth...


She still wanders what that is at times.....



She thinks shes stylish...


Just relaxing on the chair


Up close and personal


Playing dress up with Adriana is fun....


Ready for her photo shoot..



Are you talking to me ?

8CCS and advancing

Well I went up on Adriana's feeds on Friday, she went from 7 cc cont to 8ccs. At first she started to put out some high output but later as the day went on it seemed to slow down. After the 24 hours I got about 230ccs. It is consist ant with her output daily, it is a little more but its normal....as she gets more in she should put more out. Nothing new with her... she did vomit a good amount yesterday but it was just milk. I had a problem with her NG tube yesterday night, I was trying to change the milk bag and the little tube broke in 2. Of course there was only one thing for me to do.. change her NGtube. I pulled it out last night and of course measured the line to her tummy and placed it.... may I remind you this is the very first time I place it on my own with no one watching or helping me. I am proud of myself...... and then I listened for placement and it seemed to be in the right part. That means that when we go to clinic on wend the NG tube will not need to be replaced. It was time to change the tube anyways.... it had already been a month. We have clinic wend and lets see what happens... maybe I can get a answer of to when she might get her GT tube placed. I hope it is soon... it has been a while sine i have been able to get a picture of her pretty face without any lines, tapes, or raw skin. I know she would love to get it removed as well.... she loved it yesterday for the few minutes it was out of her face. Well she seems to be advancing on her feeds little by little and seems to be doing good so far.

Feedings moving up to 8....

Adriana is doing good... I will bump her feeds to 8 tomm and lets see how she does for the 24 hours. hopefully she does well, we will also be seeing her gi doctor in clinic next wend. Lets see what her doctor says.. may she possibly get a GT tube soon..lets see what he says.... I will keep everyone updated

7ccs was a success

Adrianas feeds went up on Friday she is now at 7ccs cont, she did good, it was a success, she had out from her output 203 for the 24 hours. She had 210 or 215 when she was on 6 so she came down a little which is good news. By the time we go to clinic she will be up to 8. We see them in 2 weeks and lets see what they say, I am sure they will be surprised on how good she is doing with her feeds and how well she is tolerating them and advancing. Well nothing new with her, oh she was also accepted in the little heroes project as well, we are just waiting on a date and the photographer who will be in charge. well Happy mothers day to all you wonderful moms. I know what it feels like and is to have a child with medical needs. At the end it is all worth it, but you have to have a big loving heart to get through the day. I will leave every one with the cute text I recieved the other day.

"I traded eyeliner for dark circles, salon hair for ponytails and braids, long showers for hairy legs,late nights for early mornings, new purses for diaper bags, and I wouldn't change a thing! Moms don't care what we gave up and will continue to give up for our kids!

HAPPY MOTHERS DAY

Results are in.........

Nothing fairly new with Adriana I got her results from her CT scan yesterday. The doctor told me they did not find anything wrong with her head, her sutures are not closed. Hey maybe she just has a weird shaped head, her dad has a head identical to her just bigger of course. Well they will continue to monitor her head growth at her app and if it continues to not grow then they will most likely do a MRI. I was told it would give them another type of picture of her head. Nothing else with Adriana she ha been fine, but of course it has been hot lately and she hates that. She takes really refreshing naps in her crib, since her dad put the a/c up in our room. I will be going up on her feeds on Friday, she will come up to 7ccs. Hopefully she continues to be doing this good and only time will tell when we can get rid of these lines. I don't want to get to ahead of myself either. Well for now nothing new, same old boring stuff, which is good.

210 for the whole 24 hours

All went good with Adriana's feeds being bumped up. They went up to 6 on Friday morning and for the 24 hours her output was 210 which is really good. She was putting out more just a few weeks ago and now as her feeds go up her output has come down which is very good news. That can only mean her intestines are absorbing and getting use to all the food and doing what they should be doing. I will continue to bump her feeds us weekly 1 by 1 hopefully she does not get stuck or have any problems cross your fingers. This is the farthest she has ever been able to get on her feeds since her first surgery. Hopefully one day she will be line free, I am sure it wont be that soon but who knows maybe she will surprise us, she has been so far. we will be going back to Stanford May 19Th which is our Gi app, we will be seeing everyone in clinic that day and I am sure they/we will bring up the gt tube talk. I guess we will see where things take us. No more news so far we still haven't gotten the results of the CT scan so I am hoping that no news is good news, lets see if nothing later on in the week. If nothing I guess I will have to give her pediatrician a call to see what he says.

more news

Nothing really new with Adriana she is doing good and we had her ct scan done on wend we still dont have the results but all went well. They gave her anestesia and she was asleep in 20 seconds, we were then removed from the room and 10 minutes later they let us in the recovery rom where she was asleep. It took 30 minutes for her to wake up, well they woke her up she could of slept more if they would have let her. I also bumped her feeds today to 6ccs an hour cont, lets see how she does with that. I am bumping her feeds 1cc every week as tolerated. so far so good, i will be measuring her output for the 24 hours. Yesterday was the day I was suppose to do ethanol lock on her and I was trying to push out the bubble in the syringe and spilt all the alcohol, so that didnt go so well.

food play

Adriana playing with her food








Adriana was just loving playing with her food, she got more all over her body than in her mouth of course, after this she went straight into the tub and after her dressing change, osotmy bag change and straight to sleep. Of course then it was time for me to clean up