August 30, 2009

Leaps and Bounds....

First of all, sorry to everyone for not posting before now. I know that everyone is anxious to know how she is doing, and we appreciate all of the support. Sometimes, time gets away from us and before you know it, it is time for bed. I have been extra exhausted this weekend, and I am guessing it is because I am coming down from being so stressed this week due to her surgery and coming off of the ventilator. Please know, that usually here in the unit, "No news is good news". So, if it takes a little longer to post, usually Jenna is doing well.

So on that note, I will tell you how this weekend has been. Saturday she did very well, considering she had been taken off of the ventilator just the day before. She is wearing her bipap mask well, and today they started her on breaks with the hi flow nasal cannula in her nose at 8 liters for an hour three times a day. She did very well with this, her vitals stayed ok, along with her oxygen level. The only difference was that she was working harder when she breathed. Yesterday and today they have continued the vibrating vest therapy to help with her secretion build up in her lungs, this is three times a day also, when she is on the hi flow oxygen. During this time, she also has mouthcare down. This was pretty comical, when the nurse attempted to clean her mouth for her, Jenna wanted no part of it. She insisted on doing it herself, go figure Miss Independent! I was so proud! She continued the same today also, insisting on doing it herself, even though she was having trouble strength wise holding onto the brush. I just tried to guide to her mouth instead of on her face, who wants a minty fresh face? Also, today they decided while on the hi flow cannula they would help to expand her lungs by letting her blow bubbles and blow on a pinwheel. She tried so hard to blow bubbles, but instead enjoyed watching Daddy do it. We helped her along the way. She also said "mama" and "bubbles" at this point, which just melted Justin and I's hearts. It was so exciting to hear her talk!!! This evening she decided to try the pinwheel, which went ok. I helped her blow on it to get it to move, but instead she decided she wanted to "joust" with me and act like we were sword fighting. She was really getting into it and swinging fast. At one point she decided to "joust" the respiratory therapist. We all laughed so hard and she tried smiling because it was so funny. I was so thrilled to see her trying to play! So, motor skills and speech wise, she has done very well today. But is now very tired, and is trying to rest with Daddy. Earlier today she decided that she wanted to get out of bed, in which she was trying to swing herself out of bed, a little difficult when you are attached to multiple things. So, the nurse decided to let her up, and I got to hold her again!!! This time, we napped together for over an hour, and I pulled her even closer to me and did what I call, snugglebugged. It was so nice. Daddy is getting his time now with her, snugglebugging.

So, over the course of yesterday and today a few things have been changed on her. That started her feeds yesterday, and she is now taking 6ml per hour. By tomorrow they hope to have her at half of her goal amount. I let the nurse know this evening what she typically drinks at hour per day of milk and she discussed it with the fellow. He is going to bring it up to the diatician tomorrow in rounds about what amount should be the goal so they do not over load her with fluid. So, we will see on that. Also, they lowered her Milrinone dose down, hoping to get it off if she tolerates her trial on the hi flow cannula. This helps her heart relax when working. Once this is off, the iv line in her groin should come out, and then the foley catheter for her urine also. So, we will see how she does over the next few days. Also, they hope to get her arterial line out by the end of the week, since it was basically used after surgery and while intubated, which is over for her! A new attending, Dr. Marino starts tomorrow, so we will see what his plan for her this week will be. Once she moves off of the bipap to hi flow, they have to get her liter level down to 3 to move to regular oxygen. She cannot get to the regular floor (stepdown) until she is on regular oxygen, the arterial line in her wrist is out, and she is off of the milrinone and very stable. They are being extra cautious with her, but are so happy she looks so great!! We are so proud, we are making headway!!!! Her chest xrays are looking ok, she still has a little haziness in her right upper lobe, but they are watching and giving her extra water medicine to help push fluid off. Also, the attending increased her ativan medicine yesterday, since I spoke up in rounds and expressed concern that she was uncomfortable and could not rest because she was so jittery. So, now she is doing much better and not as near anxious as she was. She is getting so pain medicine because she is hurting from her surgery, which is to be expected, I just hate to see her cry. But we are making baby steps. Also, we were able to bathe her today, which was fun.

So, hopefully tomorrow will be even better! It is crazy to think how excited that she is doing all of these things again, it is almost like it is the first time she has done it, like she is an infant. But it has been sooooo long! Seeing her trying to smile and play today, was wonderful. It meant so much to us to see her being happy and waving and trying to play. Hopefully this will continue. :)

We had visitors this weekend to see babygirl. Nonny came, along with Uncle CJ and Sammi, Aunt Missy and Uncle Stu, yeah!!! Everyone got the chance to see a partial view of the old Jenna, trying to play and be happy, it was great!! It was so nice to see everyone and we hated to see everyone go. Thanks to everyone for the support. We continue to receive cards, gifts, donations, angels, etc in the mail and it means so much to us. The support we are receiving is amazing. God is so good to us. Keep praying for Jenna's recovery and we will keep you posted.

Love, Jenny, Justin and Jenna


  1. This is so great hope to see Jenna on tues

  2. Hey guys! Things are sounding great! I remember when I was a PICU nurse and things were moving along as well with my patients. It so rewarding to hear how well Jenna is tolerating new challenges! When you are a nurse of a long term child like Jenna, you get very attached to the whole family. I can see that they take the time to do what is the best plan they can have for her, to make it as easy a transition as possible. It also great the God puts these people in the right place at the right time. YOu all have been so blessed. Hang on tight, it might be a bumpy run, but it looks as if you may be over the worst of it. We, the whole family, have been keeping you in our prayers everyday. I keep seeing the smiley little girl in my mind and keeping the faith that she will return to her full self. Know that many are watching over Jenna and her family. Stay strong and true, God bless, The Dunns -- Greg, Suzy, Alex, and Katy also the Leadmons -- Don and Connie

  3. You made our Monday when we read your post this morning. We are so happy that little Miss Jenna is recovering and starting to talk and play a little. I am sure you were so happy and excited to see your baby girl starting to be her normal self again. We will continue all of our prayers. Hugs and kisses sent your ways.

    Your Friends,
    Lori, Justin, and Tristan :)