>> Saturday, June 27, 2009
First, let me apologize for not posting yesterday. We have invited all of you into our lives and know so many of you are walking with us daily as best you can from a far. I fell down on my responsibility to all of you yesterday by not posting and for that I apologize. I made myself a promise to not leave you all hanging and I won't going forward.
I didn't post anything yesterday because I am honestly a bit overwhelmed right now. Our little girl has been so strong, but she has stalled out on progress. The medical team has been trying different strategies to get over this hump, but haven't had success. I asked them today, maybe begged is a more appropriate word, to just chill out on jacking with her. They wanted to try feeding today. I appreciate that the longer we wait to feed, the harder it will be for her to feed. I get that, but I also know that she is stressed right now and if she rejects the feeding, it will only add to her unstable condition. I haven't interjected on any strategy up to this point, but I couldn't hold back today. I begged to just let my baby rest today and get back on track in the right direction and I think he saw my pain and agreed.
Kamryn isn't as sedated as she has been in the past. This is good to have her moving around as it will help her get rid of some of the fluid and work the muscles she will need to breathe on her own one day. At the same time, she becomes more aware of the tubes down her throat. She wants them out so badly. She tugs at them and looks at me for help. I'm her dad and am supposed to protect her. I am supposed to take the pain and discomfort away and I want to just pull them out. I feel like I am letting her down because I won't help her. When she looks right at me, it feels like she is asking why her daddy won't lift his hand to get her out of there. I spent most of my time explaining to her why I couldn't help and we need her to keep fighting. It was the first day I've shed a tear since all of this started. I'm tired and the journey has only just begun.
Let me assure everyone that we haven't really taken steps backwards, we are just not moving forward really. We're just stuck. There is some good news to report. She has had a couple more bowel movements. Her heart ECHO yesterday was completely normal and this was the first ECHO that showed her pulmonary pressure has come down. She is off her dopamine which means she is holding her blood pressure steady all by herself. We have though been moved out of the isolation room which I am not crazy about.
So the gameplan today is to let her rest, try to get her numbers back in line, and then tomorrow see where we go from here.
We are still eating the unbelievable food that our friend Jackie made for us when she came to visit for a few days and help out with EVERYTHING! Last night our neighbors came over with a small pink bucket and inside were gift cards to different places that looked like flowers coming out of the bucket. We were just stunned with their generosity. Our good friends Scott and Amanda are in town to visit and they took Hollie to the water park today with their daughter Jaycee. We are going to hang out with them tonight at the house and we are really looking forward to that. Next week our Sunday school class will be coming by to bring us food and it will be great visiting with them each night. We really can't get over the kindness and generosity of our friends and family. They have just been amazing to us. It's overwhelming to receive this much support and we would be a disaster right now without all of it.
We continue to hold out hope that Kamryn works this out and gets over the hump very soon. I hope I have a great report for everyone tomorrow.
Thank you for the continued support and prayers for our little princess!