Aubrey Judith

Well we have a date and time that Aubrey is going to surgery for the 3rd time… April 7th and 8am. Dr G looked at Aubrey the other day and said she looked really good then we got the news that she was going in. He was glad to see that both ends were out and and that ment things were loose and that makes it easier to connect. They shouldn’t have to really cut her any it’s going to more of pulling the ends out, connecting them, and pushing them back in. She has stooled a few times and things are looking like they are working the way that they should.

Well today Aubrey had her very first actual poop out of her butt!!! Yesterday they decided that they were going to collect her “output” from her ostomy bag and feed it through the rest of her bowels and out her tush and it seems to be working. The point of this is to get the rest of the bowel working and for her to absorb more from her food. They are still planning on April 15th to put her together and Dr. G said the bowel looks really good and that it’s a good thing it is sticking farther out because that will make it a little easier to put together. To put her together it shouldn’t be a large cut like the last time it’s going to be a smaller cut (if they have to at all) and pushing the bowel back in. They want to go up on her feeds and get her off her IV feeds totally but we will have to wait and see… right now the lower bowel can’t take all of her output because it has to get used to working again then they will be able to put more through that also. So congrats to Aubrey who can now poop out her butt!!

For Easter the nursing staff got Aubrey a black sheep because she is the black sheep of the NICU. She also got a pink bunny but that is no fun. Today she is going up to regular milk it is no longer spun down. Tomorrow is our big meeting with her medical team to find out what they are going to do and what their plan is going to be for after surgery and what we are going to do until then. She is gaining weight again for a while she was on the skim milk and lost some weight. Yesterday when I came back in she was working the front desk… she has been there so long they are putting her to work. Her belly is alomost closed up maybe then her ostomy won’t leak so often. That is all the news that we have and don’t forget to donate to TEAM AUBREY for the Great Strides walk donate under Carrie at  http://www.cff.org/great_strides/Carrie  or  Matt at http://www.cff.org/great_strides/Matt

Well today was the day that they ran a contrast to see if Aubrey was really a double barel or if she has a fistula… they put the contrast through this morning and it was good news… it is the other end of the bowels. They are going to try to make a temporary connection to test if it can run all the way through and she can get more of what she needs from her food so she can gain weight. They are talking about a meeting some time next week with all her “people” so they are all on the same page and have a plan. Right now they are thinking the 15th of April for her surgery but that can change… anyway here are some pics. The second pic is not poop, but the left over contrast showing that it entered the top half and exited out the other end.

Well yesterday the doctors were saying a month till they put her together and we about died when they said that. We didn’t really get to talk to the doctor till today about it and we asked why. He said that if they put her together too soon she could pull her stitches out if that happens there can be complications such as a fistula, that would be another section of bowel that her body makes that would go to the surface and make it’s own way out. If that happens she could be a “short gut” for life and pretty much have her ostomy bag for life. In other words a month of healing time sounds pretty good if it means that there is a better chance that it’s the end of our problems. The doctor said that he has seen a baby put back together too soon and it can become a real mess… so we are willing to wait a month.

It has been a slow couple of days we are still waiting for her wound to heal up so they can go back in and put her together. The tissue under the skin has filled in but still waiting on the skin. Aubrey is totally off the pain med drip and is doing good with that they haven’t had to give her any spot doses either. Her feeds are set to 12 cc’s an hour and she gets enough that they can start her enzymes which they give with apple sauce. They started her on an inhaled med at the end of last week to see if it helped her breathing in case she had a secondary pneumonia and now she sounds so much better and her chest x-rays look more clear also. She gives her nurses a hard time sometimes because she wants to be held all the time but it’s also only a few that she wants to be held by. She knows who she likes the best. That is really all the news that we have we just have to wait… which we don’t like.Â

Today when we came in we were told that Aubrey could get a bottle… she only gets 5cc’s in the bottle but still a bottle. Her tube feed is up to 9cc’s an hour today so every days she gets more and more food. We haven’t gotten any word yet on when she goes back to surgery but we hope it’s soon. Her belly wound looks better every day and once that is all better then they will think about going back in. Thank you everyone who has donated to Great Strides already hopefully together we will raise a good amount… and please remember that we are greatful for any amount that you can give for CF and remember that $.90 of every dollar goes toward research.

  

Hey everyone I signed up for the Great Strides walk also… GO TEAM AUBREY!! If you want to make donations that would be great and if you want to join us on the walk that would be great also.  If you want to donate to my goal go to http://www.cff.org/great_strides/Carrie … thank you all and also thank you for your thoughts and prayers.

Carrie

Nothing major is really going on with Aubrey the last few days. She is now getting fed by a tube so she has something in her little tummy. It started out at just 2cc’s an hour and has been raised to 3cc’s now. They are taking x-rays of her tummy every other day to make sure she is tolerating it well. We also played dress up the other day and made her put on two Easter dresses. We used a little bunny to hide her PICC line so she almost looks normal. Of course I have also joined Team Aubrey for the walk in Indy, my link is below.

http://www.cff.org/great_strides/Matt

Hello everyone! I just wanted to let everyone know that a few of us are going to be doing the 2008 Great Strides walk in Indianapolis on May 17, 2008. Great Strides is a Cystic Fibrosis fund-raiser to collect money for advancements in Cystic Fibrosis research. we will be walking under “Team Aubrey”.

To learn more about Great Strides go to this website.

http://www.cff.org/Great_Strides

If you would like to donate to this great cause you can go to either of the following webpages and click on the “Click To Donate” button at the bottom. If you would like to join us for this walk please register under “Team Aubrey” for the “2008 Indianapolis - Military park” walk. You can click on the “Join My Team” button.

http://www.cff.org/Great_Strides/Lindsay

http://www.cff.org/Great_Strides/Wendy

We love you Aubrey and will be fighting with you all the way!