OUR FRIENDS AND FAMILY ARE AMAZING....

There is so much to update on. Since I am not sitting at the hospital all day with nothing to do, updating the blog is much harder than it used to be. So Wednesday was my first day back at work. The morning went relatively well even though Cooper puked his feeding tube out shortly before I was ready to head off to work. We got that put back in and I headed to Lisa's. This was her first full day with the kids and my first full day without them. Neither was easy for either of us. Things were going along until Cooper's noon feeding when he pulled his feeding tube out. I headed to Lisa's to put another one in. (2nd one of the day) We got that all situated and I headed back to work. I had planned to take my lunch hour around 2:45pm so that I could go back to Lisa's to walk through the 3pm feed and massive amounts of meds. We gave the first set of meds and then were getting ready to start his feed but there was something blocking the passage in the feeding tube. We tried and tried to fix it but ended up having to put yet another tube in (3rd one of the day). I got it in just fine but then could not get the wire pulled out. So I had to pull that tube and try yet another (4th tube of the day). Finally we got that one in. We were so off on our schedule by this time, Cooper was completely irritated and I was frustrated. I headed back to work about 4:30pm. I called Apria to send me more feeding tubes when they informed me that insurance only covered one. Are you kidding, we just went through 4 in 1 day!!! Cooper also was starting to throw up more often and in larger amounts. We made it through the evening and night and headed back to Lisa's this morning. Other than the fact we could not make it through one single feeding without Cooper throwing up, things went really well today. I called our pediatrician to discuss the throwing up issue and he was gone til morning. However, his wonderful nurse helped me decide to switch Cooper back over to Nutramogen, a formula we had him own when he was first born. Dr. Kelley had mentioned to us when we met with him that this is what he would try first if the throwing up became more often. Jill provided me with some samples and I took them over to Lisa. Cooper made it through his 3pm feeding without any problem on the new formula. He also did much better with the 6pm feeding as well but I did pick him up to soon after his feeding which we have learned is a big mistake. All in all though, things seemed to go a little smoother today. I am just very worried about the constant stomach problems and Lisa agrees it breaks our hearts to watch him because it is so evident that it hurts him. When he is not being sick though he seems so happy. He smiles and plays and it is wonderful to watch.

Tonight has went very well. Once again I did not have to rush home and prepare a meal because we are still enjoying the food Jenny brought over. This has really made a big difference in the nightly chaos. I am extremely tired due to the rigorous night schedule but feel so fortunate that things seem to be getting a little easier. Lisa is doing fabulous with everything and continues to just love on little Cooper as if he were her own and never letting me feel like this is as stressful as I know it is. Mom and my sisters are up this weekend to help Sherri prepare to move so they stopped by to visit this evening. It is always great to see them.

As I have mentioned before, there are some extremely thoughtful, helpful and amazing things being done by our family and friends in order to continue supporting us. I had mentioned to one of my friends, Amy, that I was going to make blankets to donate to CMH. The nurses are fanatics about the blankets they use on the babies beds in the PICU. The literally fight over and hide the cute ones. It is hilarious! Well Amy told her Mom, Michelle who lives in Utah, what I wanted to do. Michelle took it upon herself and made several wonderfully perfect blankets and sent them directly to me. I got home Wednesday, after having a rough day, and there was this box full of blankets. I was so excited and wished I could just hug her through the phone. They were all perfect and it meant so much that she would do this so quickly. On top of that, as I have said before, there have been some fundraisers being done and others being discussed and this has just brought tears to my eyes every time I hear about it. In addition, today Tom pulled me aside to tell me that he had established a trust account in Cooper's name for us to help make sure all the fundraising comes together and donations can be more easily made. Once again I sat in amazement at the kindness and thoughtfulness being shown to us. Oh I had thought about how I was going to separate things and such but had not had time to do anything more that think about it and now it was all taken care of.

As long as I live I will never forget what I have learned in the past month about myself and life in general nor the love, support and genuine kindness of our family and friends. If only each of you could crawl into my heart and feel what I feel, only then would you know how very grateful I am for each and everyone of you.