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.