2 more weeks

I can see the end in sight! She will be in traction for one more week, and then on the morning of the 16th they will take all the pins and tubes out! I am so excited to hold her! She has been such a good girl through all of this. Benny will be here for the "pin removal" and get to hold her. We have to stay about a week after that to watch her urine out-put. They will do another x-ray and an ultrasound to make sure all is good, and then we can fly home. I will be getting on that airplane and not looking back. I am so ready to get back to my life!
Today was a good learning day for me. Dr. Gearhart and Pam Butler (RN) sat down with all the exstrophy moms and had a Q & A session. It just so happens that there are four babies for exstrophy repairs here right now on the floor - NUTS!! It's so common here, which is such a great resource. We all had so many questions, mainly about the future, and he was so great making sure we all understood!!! Pam, who has been here 30 years and taken care of every Exstrophy baby that has been here, was there to answer questions as well. She has been my nurse a few times so far and we will talk for hours about all this. She adopted a little boy with Bladder exstrophy 12 years ago, so she knows her stuff. I am so grateful to be in this hospital with all this experience. I am meeting people from all over the nation with exstrophy. Two of us are from CA, but the other two babies are from Indiana and Mississippi. We have all shared our stories and it's just amazing meeting people with a similar story to mine. It's nice knowing that I was not the only mom who has had to take care of a bladder on the outside of the body!
Well, Lily is still doing fantastic, although maybe getting sick of laying down. She has been so patient with us, constantly getting moved up and down, or taking all of her different medicines. She on all sorts of vitamins and anti-biotics. And, we have to elevate her to change her diaper. It's pretty funny because it's a 3-man job to move her, but she thinks it's fun. Yet again another reason why the nursing is staff is so important! We are starting to wean her pain medication now, specifically the ones that can be addicting. We have to move very slow in changing the doses or she could get very fussy and maybe sick. But so far so good! Thank you all for your continuing support and prayers! Pray that this next 2 weeks will fly by!!!!!

Here are some pictures of Lily's spa session today . . .