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.