October 8, 2009

More pics of babygirl playing......

Hey everyone,

Sorry for not posting sooner, just been trying to spend time with Jenna and getting rest too. So, Jenna did fine through Monday evening and feeds were started again at 5ml Tuesday Morning. They increased her by two every six hours, which she seemed to tolerate through the day. She made it to 20ml this morning and they stopped, per GI request to give her a break for a day or so. Tomorrow morning they will decide if it is ok to increase again and if so, by 2ml every 6 hours until max feeds of 40ml as she tolerates it. She has gone down on her Methadone and Ativan in the last couple of days, which she has tolerated well. She is still on TPN and Lipids, because she is not at max feeds yet. She has not vomited blood since SUnday, just mostly mucous. However, late last night, she had a bowel movement and it had some blood through it. There was not much there, but they still sent it to lab to confirm and it came back positive. She had another bowel movement later in the night, but no blood. At this point, they are just going to watch to see if 1. anything grows from the sample and 2. if she does it again. So far so good. It is possible that she has just had some irritation in her intestine from having the tube pulled back before. Not sure, her blood levels are completely normal at this point. So, we will see. She has been fine through each blood episode, no fever or vital change. Just being Jenna. Yesterday she played great with OT and PT, very happy and active. Today she did well with Speech, she had sort of learned a new sign "all done" when she is finished doing something. This is good! She loves playing with OT, they have a really cool toy bag she loves! She has been doing pressure support trials this week and done well. Today, they decided to try a mist collar trial, she made it two hours. During the trial, she played with OT and then we went on our first wagon ride in almost 3 weeks! She had fun, it was short lived, but she made it. :) She slept after we got back from 3:30 until 9. So, needless to say, it wore her out. But, we have to try to see what she can handle and obviously, she is still trying to get stronger. Hopefully though with sleeping lots, she will go to bed tonight, unlike last night~ Mommy and Daddy were here until after 2am!!! She wanted to play and we just wanted to sleep. So eventually we just left and she was upset, which made Mommy cry, but within minutes, was asleep after we left. Today it was time to change her trach again, it has been two weeks. They gave her Versed to calm her, which made her sleep for 3 hours, go figure, usually it does nothing to her. I was able to participate today, I took it out and the RT put it in. It was an experience, a different feeling, but I am glad I did it. Yesterday I slept in and Daddy came over to with babygirl. Our fav nurse was with Jenna and decided to prompt daddy to do trach care for the first time and not just hold it. So, yay Daddy!!! He is helping every time now which is awesome, we are trying so hard to work as a team! Another step with Jenna they are wanting to do is a CT Angiogram, which takes pictures of her collateral arteries in her lungs, to give a map for Dr. Beekman and Dr. E for her next surgeries to open the arteries. They are trying to determine her next steps and they would like to do this test before she goes home, so it will be done in the next few weeks. Otherwise, she is doing fine. She has fallen asleep now, I was able to hold her today which was great. We snuggled :) Holistic therapy came by and gave me a neck and back massage, which was AWESOME. I am obviously very tense, and this was much needed. So, we are going to try and get some sleep as well. We will keep you updated on her status. Keep praying and thanks to everyone for everything=donations, cards, calls, emails, etc. We are so blessed to have such a wonderful support group! Miss you all and hope to be home sometime soon. Check out pics of babygirl in the last few weeks.

Love, Jenny, Justin and Jenna

What does this button do?!?!?!?!?!
Of course, Jenna is not looking at the camara. Go figure.

OOOOO....bubbles! Look at my cool cat ears someone mailed me!!!!

Is this how this works? Beauty is very important you know.

Cooking some soup....

Yes, I am holding three stuffed toys, I must keep my friends close. :)

What are you looking at?

What?!?!?! YO GABBA GABBA!!!!!

Picking a movie to watch out of my cool DVD box.....

Seeing my trach for the first time, not so sure about it at first, but was fine in 5minutes

Cleaning up before surgery, look at my braids!!!!

Check out my bear that got a trach just like me!


  1. I am so happy things are moving in the right directions. Have a happy weekend! God Bless you all. Jerri Gibson

  2. Jenny, Justin and Jenna

    Yea. More pics. They are so good and we miss seeing her so much. Sounds like she is wearing you and Justin out. Of course, this means she is on her way to recovery. Such wonderful news.

    I love you,

  3. Very happy to see things moving in the right direction. Love the new pictures.

  4. Dear Lil Jenna, If a peace prize for the bravest,most couragerous,person I know, Lil Jenna it would be awarded to you. What an outstanding person you are. To have gone through so much in your young life time, and can still smile. So lil Jenna, you are awarded a life time achievement award for you constant ability to to keep fighting. I would also give an award to your mom and dad, who stand by and see the pain and still able to smile also. Your family is a family of strength to all who know you. Thanks for your updates and ever upbeat presence. best wishes to your family Love Holly

  5. Jenna- you are looking great girl!! i love the braids- they are bananas! i know a little girl named ayla who named her new babydoll jenna- after you! you are an inspiration to everyone- even little girls!! keep getting better because santa has been asking where you will be on christmas! love, aunt stacey

  6. Love the pics! Glad to see you are closer to being "Jumping Jenna" and hopping out of that joint. (But it is clear to see that you are getting top notch care! You can tell Team Jenna that we're praying for them as well as for you and your parents.)
    Sending LOTS of prayers and strong, healthy thoughts your way.
    Love, Ms. Karen

  7. Love the pictures...thank you so much.

    Your Friends,
    Lori, Justin, and Tristan