Baby Steps.....

Hello everyone,

Just wanted to write a quick note on how Jenna did today. This morning the new attending Dr. Marino came on for the week, he is very familiar with Jenna, he has known her since birth. So we of course were comfortable with him. This morning she was no longer on the Milrinone drip, yeah!! He also stated that it would be fine to take out the femoral access line in her groin and her foley catheter, which were both taken out this evening. Two more lines gone!! The fellow Dr. Derrick had his last night with Miss Jenna. She did very well for him and slept most of the night. He and Jenna have been through a lot together, and he told us today that she has challenged him more than once this month with his skills, but enjoyed every moment with her so much. He is so thrilled to see her sitting up in bed, waving and playing some. He complimented on us that we were a wonderful family, very caring and understanding. We let him know that we appreciated everything that he has done for us, and are so glad that he was with us through this whole process, even though Jenna gave him so a hard time, haha. I told him that she was only doing this to him, because she liked him, do not take offense. He said none taken and he will never ever forget her. She is very special to everyone, which of course we agree. We will never forget him either and are so thankful for him and all of the staff and other doctors here on the unit. They have gone above and beyond for our babygirl and we could not ask for better care. We were definately in the right place throughout this whole process.

So, that said today they decided to 1. lower her pressure setting on the bipap and 2. start a trial on hi flow for an hour every four hours. So, the first test this am went ok, they did her vest therapy, along with putting her on the hi flow oxygen. The second test she did fine until the end of the session and she became tired and her heartrate went up to 160. It was obvious that she was tired and working a little harder to breathe than earlier. It took a little bit for her to calm down and her breathing and heartrate to slow, so they decided to change her pressure setting back to what it was. Also, she started to cough quite a bit and ended up vomiting mucous. They said that maybe doing the every four hour trial and the change was too much. Maybe if she is doing ok tomorrow, they will make the change then, one step at a time. So the next test she had physical therapy and occupational therapy stop by, this was nice because they moved her arms and legs around. Jenna liked this because she was able to move. They said that they would be coming about 3 or 4 times a week, because they felt she would benefit from the exercise to get her strength back. The next test went ok again, but she again got tired at the end, and ended up vomiting mucous again. By this point she was tired, so Justin and I stepped out to meet with friends who live close by, Chad and Jana. This was great, we were able to go to dinner, talk, catch up. We had not seen them in so long and it helped get our minds off of being in the hospital so much. Thanks you all! By the time we returned they had done her next trial and vest therapy. They said she was so tired, that she slept through the entire thing. So, the fellow tonight said to let her rest and not do the next trial in four hours. She has had a very big day, very exhausting for her. But she is trucking right on through. They said that she is also doing well tomorrow, they may lower her withdrawl medicine a little, but it depends on how she does. If it does not go well, they will just go back to what she was. The dietician also stopped by today and let us know that the feeds they started her on is Peptimum Junior, not Pediasure. The reason for the change is because it is easier on the stomach and breaks down in her body better, and since she had issues with her stomach from all the bleeding, this is a better option. So, she also let us know of her goal of milk intake per day, 36oz. This is a considerable amount more than at home, but due to everything she has been through, she needs to play catch up with her calorie intake, plus it helps with healing. If she does not tolerate the amount, then they will make adjustments. So, we will see.

Not much else has happened today, so baby steps still. We just hope that she keeps going in the right direction. No crazy changes, no big hurdles (other than making it to stepdown). It has been a wild ride and we can only hope that it is nearing the end. But only time will tell. We would like to thank everyone for everything and keep praying for Jenna. The prayers have been answered so far! We will keep you posted on her status.

Love, Jenny, Justin and Jenna