We're Still Hanging in There

Most of you have probably given up on us actually posting a blog entry. I know it's been a couple weeks. We've had some challenges with Caden's sleep and it seems to be getting worse every day. I know all parents out there have an idea of what sleep deprivation is like. However, we feel ours is compounded even more by all we've been through already. It seems like there is a cumulative effect of all the stress for the last several months and now with the sleep deprivation, we are completely maxed out. Caden's lack of sleep has to do with really bad gas.

In connection with the g-tube surgery, they also performed a “nissen”. This is just a procedure done at the top of the stomach to prevent any reflux up the airway so there is no risk of aspiration. However, in addition to preventing any milk from going up the airway, it also makes it impossible for him to burp like a normal baby. So, that means all the air that enters his belly must exit through the bowels. This definitely causes him pain and discomfort. He fusses during every feeding during the day and night. Sometimes it passes quickly and other times it takes a couple hours to move things through. And, there is nothing we can do to help him. He usually wants to be held all the time. During the day, he often won't sleep unless he's being held. And, even then, it's usually only for about 15 minutes at a time. At night, where he used to sleep from about 8:30 pm to 4 am, he is now only sleeping from about 8:30 pm to 11 or 11:30 pm without fussing or crying. Then, after that, we are often up with him the rest of the night. Needless to say, Greg and I are exhausted!

It's hard to even write this down because we know how blessed we are to even have our baby home with us. We feel guilty admitting we are maxed out and can't handle it. But sleep deprivation and stress are worthy opponents and we often feel they are winning the battle. So, we ask for your prayers as we try to find a way to ease Caden's gas pains. We are giving him Mylicon as well as probiotics in order to help aid in that area. But so far we haven't noticed much improvement.

On another note, we were able to celebrate Kyler's 3rd birthday on Friday. It was a little bit late but we didn't plan anything until after we got home because we weren't even sure when we would get home from Stanford. Also, we didn't want to have a bunch of germy three-year-olds at our house because we didn't want to expose Caden to them. And, we didn't want to take Caden with us to wherever we had the party for the same reason. So, Caden's primary nurse, Amy, from the CVICU at Stanford offered to come babysit for us so we could celebrate with Kyler. This was such a wonderful gift for us because we had absolutely no qualms about leaving Caden with her! We could just show her where the milk was and the medication and know that he was in good hands. Thank you Amy!!!

We celebrated Kyler's birthday at Chuck E Cheese's with 6 of his friends. We chose this location because they took care of all the decorations for us and we didn't have to do any shopping to prepare for it. The only thing I did ahead of time was purchase a cupcake cake with a railroad on it. I put a couple of Kyler's Thomas the Train's on the top of it and that was that. The party was lots of fun for him as he and his friends got to run all around and play games, etc. It was great.

We continue to be blessed by our wonderful friends. They bring us meals and take Kyler to and from appointments as well as watch him at home while I take Caden to doctor appointments. And, they are willing to come hold Caden while I get some sleep. It's a wonderful blessing to have such incredible people in our lives! Thank you everyone for your love, support and prayers!