GI app

We went to our GI app on wend and all went good. Adriana now weighs 19 pds 2 oz and is 25 1/2 inches long. She will be starting ethanol locks next week with our next batch of delivery and they also went down on her dextrose and up on her liquids. They seem to mess around with what her tpn bag contains, a lot. Well her bili is down at 2.5 that is the total and it's still coming down. They also went up on her omegaven and she continues to be at 2 ccs an hour cont. Her GI wants to make sure she can handle 2 before going up to 3. He doesnt want to have her start dumping, which so far she has not been. I had a scare the other night, I am not sure what I was thinking but I had her running on 2 tpn pumps. So her lipids were on her tpn pump as well. So by 11:30pm her lipids were beeping saying air in line and thats when I realized she had finished all of her bottle, in 3 hours. I called GI and they told me she should be fine, it is not deal of course but she was fine. I made sure I put away our back up TPN pump, so this wont happen again.

Adriana after her birthday

highlight of Adrianas year in pictures

New pictures

Adriana turned 1 on March 6th which was a Saturday. She is a big girl now and just loved when we went out for lunch and they sand her happy birthday. I cried I couldn't help seeing her eyes just light up it was the best moment for me and she loved it. I wish it was her birthday every day. Well we have clinic on wend and lets see what they think. I pumped her feeds to 2cc an hour on Saturday. I checked her and she isn't dumping it did go up just a tad bit but not a lot. I will be adding pictures of Adriana and her birthday dress.


Adriana before going to visit grandma on her birthday


Mom I wasn't ready yet


Big Girl of course shes 1


Adriana ready for summer


Adriana styling a new hair do


Adriana and Daddy at the Oakland Zoo

So everything is starting to get back into what it use to be. Adriana finally came home yesterday well we both did. She was excited when we got into the car and was just happy to leave the hospital. She will be off of TPN for 2 hours a day and as time goes by she will be off more. So yesterday they wanted to double check her sugars after a hour of ebing off she was at 81 and after 2 she was 94 those are great numbers. Just thinking of how far she has come gives me goose bumps. She will be 1 year old on Saturday. It's been a whole year of tears and sadness of how sick she was, whether not she was going to get better, so many things. Look at her now she is a very happy baby she doesnt hold any grudges with anyone no matter what. She enjoys her life and laughter. Thank you to omegaven Adriana is living a healthy life, does not need to be trandsplanted at this moment and gives her the time to get her gut to start working. She will be going up on her feeds and see how she does.

So we are still here, another day in paradise. Well we will be going home today after Adriana is tapered off her tpn. They will taper her off for 2 hours and check her blood sugars, and after that we can com home. She will be takeing vancomycin home with her and her last dose should be the 8th, next Monday. She is doing good has been since we have been here, and I know she wants to just go home. When Adriana is home she will be off her TPN for 2 hours daily and with time I was told we would have her diconnected more often. I guess we will see, 3 more days untill her birthday. She will be the big 1, and eat lots of cake, well not really eat but sure will let her try and take lots of pictures.

So yes we are still here in the hospital as inpatients, the only bacteria that grew on Adrianas blood culture was staph the good thing is it could of been worse. It is the exact same thing that grew the last time we came in with an infection. We will hopefully be out by tomm and she will continue her antibiotics at home, for about 10 days. The countdown for her birthday starts she will be a year old on Saturday