AAHHHHHH, Bath Time Finally!

Well, this is a picture a long time in coming. I gave Gracie her second bath today (the first being yesterday). She really likes it. I bought her a new bathtub at Target and it has a little sling that sits in it that is really comfortable for her to lay in. Can you imagine your first bath after 3 MONTHS of life? Sheesh! Water was a whole new feeling for her. We were able to bathe her because at yesterdays appointment at PCMC, the plastic surgeon took her stitches out and said it was ok for her to get wet. Yippee for Gracie. Her wound is looking a lot better now and just has some residual scabbing. I don't think I will ever post a picture of it because it is NOT pretty. Her gnarly scar in addition to the lump on her chest from her muscle flap, does not make for a pretty picture. I think Gracie would be mad at me later in life for posting it.
You can't really tell by this picture, but Gracie has about five little sores on her nose and cheeks from her trying to scratch/pull her tubes out. It is her natural inclination to reach up and grab them, almost like it's a comfort to her or something. Hence, the beautiful sock mitten on her hand (which Callie takes off every chance she gets). It is my mission in life to keep that feeding tube IN. I am hoping to minimize the times I have to reinsert that thing because it was such a bad experience in the hospital. You can keep a feeding tube in for up to a month before having to change it.

About our trip to PCMC, we were there for about 3 hours. Gracie first got a chest x-ray where they had to hold her down flat on her back, then pull her arms above her head and get a picture from the left side and on the right side. She of course, did not like it. Then we went into the clinic where they weighed her, did an EKG, took her sats and heart rate and talked about how she was doing. As I mentioned earlier, the plastic surgeon came in and removed her stitches and told us she was good to go with bathing and that we no longer had to keep her bandaged up. Gracie weighed 10 lb.s 10.8 ounces so she had gained weight from Friday. Good news!! She is doing much better on our new feeding schedule. She is not throwing up near as much as she was when I was feeding her 66 mls every 3 hours for an hour. I hope that she continues to improve and put on weight. I think she will. It just took a little tweaking of the feeds. I administer her meds about 5 minutes into a feed so they do not go into an empty stomach, but at the same time it is empty enough that she does not have the urge to throw up, so far it is working. We then had to go to the lab to get blood drawn for a Factor 10A level? I requested the IV team because I knew she was a hard poke. They came and attempted to draw blood 3 TIMES and could not get it to more than just drip out. Our nurse suggested that we request the Life Flight team to come and draw it but they were out on a call so we bagged it and will see what they want us to do next time. Obviously, this was the worst part of the visit. They are hoping to put off her Glenn surgery as long as they can, maybe 3 months or more. As always, we will see what Gracie decides to do.

I have had so much help since I have been home. My family and friends have been WONDERFUL. Thank you to my awesome ward for all the dinners we really appreciate them! Boy is my family going to be bummed when they go back to cold cereal and toast for dinner! Thanks to my neighbors and family for taking my kids all the time (who look truly homeless lately by the way with their mismatched clothes and bed head) Thanks to all of my personal shoppers for the groceries (you know who you are) and thanks for coming into my home and helping with my dishes, laundry, cleaning and care for Gracie. Your service to our family is the ONLY way we are making it through this in one piece.