So we used ethanol lock last week as well. It is not as easy for me to pull back the alcohol as I thought it was. If anyone has any suggestions please give them to me. I would be very much appreciated. Adriana is doing well but seems to be catching a little of a cold. Her dad gave me a cold which I feel and have been feeling very yucky and of course it was just a matter of time for her to catch it. I have to suction her nose 3 to 4 times a day because her nose gets very stuffy and she get's mad. We will be seeing her GI doctor on April 14th and maybe most likely going up on her feeds. She seems to be doing fine but of course she get's very very gaggy and I feel horrible when she get's like that. Here are some pictures of her that I took when I did laundry the other day. she is my little helper.


She watches her hamper for me



Watching me from the little hole


She loves laundry days, but I dont

Thursday was the first time I started Adriana on ethanol lock, it was a very long day for both me and her of course. So at 7 she was off and I started the lock and at 9 I was trying to pull back the ethanol from her catheter which was hard. I pulled and pulled and moved her head side to side which at this point she was not happy and it did not make things easier. I was able to remove all of the ethanol from her line. I then tried to flush her line to connect her TPN but to my surprise was not able to flush, I tried to pull back and then flush and nothing it wouldn't go in. I tried a couple times and no luck I called one of our home pharmacist/nurse she told me to take her to the ER that most likely her line had clotted. We got to the ER around 10pm and on our way there I called the GI on call and let him know we were on our way to the ER and for him to update our GI when he had a chance. When we reached Childrens in oakland I explained to the triage nurse what was wrong with Adriana and why she had a broviac and she took us in and then about 20 minutes later a nurse came by and took a chem stick to check her sugar levels, she had been off for about 3 hours and was at 81 they were happy with that. They did not feel they had to start a IV on her, so they tried to flush her line with no luch and then they tried to flush it with TPA med which is used to dissolve blood clots for many different reasons. He tried pulling back and flushing many times untill he was able to get the med in, he let it sit for probably an hour and then came back to remove the med. It seemed to have fix her problem, her line is now still working and she seems to be fine. I tried to explain to the nurse what I did and asked if there was something I did wrong of course I felt it was my fault. I felt horrible but he told me not to beat myself up for it. He said it was not my fault things happen no matter how carefull you are. He said unfortunately not all babies come with broviac catheters so of course your body is just doing what it is suppose to, which means your blood clots. We were discharged at around 1:30 am and were home around 2:15 or so. Things went the best way they possibly could of gone, in worst case the line wouldnt be able to unclot and they would have removed her line and placed a new one. That line is her second one and fairly new, it was placed in sept so its about 6 months old. That is how long her first one lasted, they couldnt get it to unclot and it was infected as well. Well I will update later since its time for Adriana to get up.

Adrianas fun in the backyard

Below are some pictures of Adriana enjoying being outside. Since it has been cold lately she hasnt been able to really go out but its nice today.

1 year well check

Yesterday I took Adriana to her 1 year well check with her pediatrician. It all went well she looks good and is growing both her height and weight. The only concern he had was her head size. He said it has not grown much since last time he saw her in Dec. In Dec it had a circumference of 40 and now in March its 40.5, so it has only grown .5 in 3 months which is not what it should have grown. Of course her head will be smaller compared to other babies but it should be much bigger than it is now. He thinks that maybe one of her sutures in her skull might be fused together. The sutures are the parts where the skull brakes apart, well divides so your brain can grow as you get bigger and eventualy close when you are an adult. In Adrianas case it should be open but he would like to have a ct scan of her head to see if it is fused or now. He said it might just be nothing or it might be something, he didnt want to jump into conclusions but of course it's something that has me worried. She has enought to deal with now and to just add something to her would not be ideal. I have so many things that I do right now that I don't even know how I remember to do all of it but I just do. Hopefully it's nothing and she's fine but I will update as soon as I know.

read this article:
http://mdn.mainichi.jp/mdnnews/national/news/20100311p2a00m0na012000c.html?inb=rs

This is really amazing just to know that one day it will be possible to transplant a kid with there own stem cells. That might just be the day I would feel more comfortable transplanting Adriana if she needed it.

watch this video too
http://link.brightcove.com/services/player/bcpid34762914001?bctid=71090509001

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