August 13, 2009

A huge milestone.....

Today started out a little rocky.....they attempted to take Jenna off the ventilator around 9:30 am. At first it was a struggle, but after being patient and seeing what she could do, they were able to keep her off the machine. YEAH!!!!! Big step for babygirl!!! After trying various options on what to do, finally around 12:30p they had her settled on the Bipap machine, which provides high pressure of oxgen through a mask, but requires her to breathe on her own, placing her on 100% oxygen. Also, they placed her back on the Nitric machine because this seemed to help expand her lungs some. Her xray looked fine at the time, but showed her right side was shorted than her left, which indicate two things. One her liver is pushing her diaphram up since it is enlarged still (btw-this could take a few weeks to go down to regular size) or two the nerves in the diaphram can sometimes become damaged in surgery and cause her to not breathe as deep as she should. This should heal over time. Her oxygen levels tolerated well for the afternoon. She had her foley catheter removed this evening. They now have her just on the Dex still to keep her calm and methadone and ativan every three hours alternating still. They have stopped her feeds through her ng tube right tube and pulled the tube because being on this high oxygen, it opens her airway and cause her to aspirate the food into her lungs and this is not good. So we are holding on that until she is down to a regular flow of oxygen, so they increased her tpn and lipids. So no food for her right now :( Later this evening she seemed to become more agitated and was not calming for Justin and I so they decided to try another option for the breathing apiratus. They decided to attempt changing her over to a regular nasal cannula that most people wear who are on oxgen and administer high flow at 12liters with the Nitric to see if she could tolerate it. This worked well and she seemed to calm some. So that it what we are wearing right now and if she can make it through the first 24 hours of being off the ventilator, her chances of not being re-intubated are looking good! Cross your fingers! She finally had a bowel movement -more than once today :) which is good since it has not happened in two weeks. Yeah! Her blood pressures have been going up this evening, but they feel that it is due to agitation. She is kind of at the point where she is between being asleep and awake and not completely sure what is happening. She is experiencing some effects of withdrawl at this time, even though she is on the medicine to prevent this. She just mostly moves her head back and forth like she is having a bad dream. It is so sad to watch, and we hope that it is over soon. I thought at first she was in pain, because she was grimicing in the face, but they said that it is just the effects of not being on the narcotics anymore. They said that she will probably be on the withdrawl medications for a few weeks, and could possibly have to go home on them. It turns out that she had been on those high doses for about a week and a half. So, it will take a while for her to come off of them. So, right now the plan is to just rest tonight, not make any changes. In the morning they will decide when it would be best to start tapering down on the some of the oxygen and nitric. Hopefully by morning her blood pressure will be staying balanced and she will be less agitated. We will see. In the midst of everything today, we ended up having unplanned visitors come to see us. Brent and Lisa, friends of ours came all the way from Wheeling to see us and brought us a care package. We were so surprised to see them, because we had not planned on seeing anyone today. This was nice to visit and luckily Jenna was calm at that point and we were able to see and talk to them a little bit. So, we are glad that we made it through today, but we are still not out of the woods. Hopefully she will still be making little steps tomorrow and we will see what it holds for us. Thanks to everyone for the love, support, prayers and thoughts. Also, thanks to everyone so far who has sent us cards and packages in the mail, these are great and make us feel special to receive gifts from home! Also thanks to everyone who comments on her and her support page on facebook. It means so much to us! We will post soon on her status tomorrow.

Love, Jenny, Justin and Jenna


  1. Discovered your blog via Lesli who posted a prayer request on Jenna's behalf over at My Charming Kids.

    I will most definitely be keeping little Jenna in my thoughts and prayers as she recovers from this latest surgery.

    I spent a few minutes reading thru some of your archives and older posts so that I could get a better understanding of Jenna's diagnosis.

    Unfortunatlely, my sister finds herself in a similar situation. My nephew, Eli, 17-months was diagnosed with a congenital heart defect two-weeks ago. He is scheduled for open heart on Friday, Sept. 4th.

    Eli has atrioventricular canal defect. Basically a giant hole in the center of his heart where the 4 chambers meet. In addition, his mitral and tricuspid valves did not properly form and so they will be doing valve repair as well.

    We are all in shock as the only sign/symptom that Eli had a heart defect was his small size. In hindsight, he did display other symptoms, but b/c they presented individually they were not considered big issues. It wasn't until a murmur was detected last week (b/c his one valve is beginning to fail) that we even knew he has a heart defect.

    Eli is a fighter. AV Canal defect can be fatal in infants if undiagnosed by 3-4 months of age.

    Jenna and Eli are survivors for sure!

    Many Blessings to you and your loved ones,

  2. Jenny, Justin, and Jenna,

    It is wonderful to read updates on Jenna everyday and we are so thankful that God is taking her in the right direction. We can't even begin to imagine how difficult everything is for the three of you, but we know that seeing your baby girl progress in the right direction has to be a huge relief for the both of you. We will continue to keep all three of you in our prayers and pray that Jenna continues to make these babysteps forward. Thanks again for the daily updates!

    Your Friends,
    Lori, Justin, and Tristan :)

  3. Hello, Meadow's Family!!
    I am April (Arpil to some) & I worked with Justin's Dad for a while!! I just wanted to let you know that I am praying for Jenna's fight, as well as for your all's strength!! I have been trying to make sure to keep up with your updates, and I truly appreciate that you guys take the time to write them!!
    I know that they have been trying to get Jenna off the vent for a while, and I must say that I let out a big WooHoo when I read Cliff's status this morning & then again when I read it in the update!!
    I pray that all continues to go well!! Jenna is such a beautifull little girl, and such a strong fighter!!!

  4. Great, I am leaving town and will not be able to keep up with the postings. I will keep PRAYING and so will our church family.
    Roberta Wilson

  5. Hello,
    Even though the circumstances, we had a great time visiting with you yesterday. We are proud of all three. You have gone through so much, but have stayed so positive. May God continue to bless Jenna with baby steps. We are glad to hear she has stayed off the ventilator.

    Your Friends,
    BRent, Lisa, and Slaton

  6. Wonderful news on this update. Praise God! CASCI has been following this journey on a regular basis and many prayers have gone up for all of you. God Bless you all! Linda's friend...Jerri Gibson : )

  7. We are so glad to hear that Jenna is getting stronger! Two year olds certainly are tough! Thanks for taking the time to update us! Continued prayers, thoughts and well wishes coming your way!
    Lots of love,
    Janessa, Brian, Chloe, and Jillian Grace Noel