Medical Update and the Disappearing Act

Today I took my dad to Weston's noon rounds. He is doing well and was thrilled to meet Pappy! He had gained 4 ounces two nights ago, but I didn't get too excited about it because he had been given so much fluid. But I called his nurse last night and then discovered today that the weight gain stuck, so he continues to weigh in at 1 pound 7 ounces!

 Weston had his picc line placed yesterday and then underwent several x-rays to confirm good placement. The picc line is indeed well placed, so they were able to remove his umbilical line last night. His vitals are stable, and his oxygen is back down to 27%, which is great! When my dad and I arrived, he was getting his third blood transfusion, this time through an IV in his foot (blood products can't go through picc lines).

 I have not met the night nurse who had Weston for the last couple of nights, but I talked to him on the phone last night, and he seems like a really good fit. He encouraged us to keep a positive attitude and to take breaks for date night every once in a while. Don't get me wrong: that's not the main reason why I like him, but I just got a good feeling about him. I am going to request that he be Weston's night nurse when he returns tomorrow, so Shannon and I can go meet him in person and make a decision whether we want him to be one of Weston's primary nurses. We have selected one primary nurse already, but he is only there three days a week (as they all are), so we need to select several more.

 I was a little frustrated at today's visit, and last night's. Until yesterday, at every single visit without fail, I have been allowed to touch my son. We always go to his noon round and at least one other time every day, but our second visits are usually not during rounds. Yesterday was no exception: Shannon and I visited at noon, and I returned around six with my mom (rounds are every 4 hours). So I showed up at 6, and the nurse wouldn't let me touch him! She explained the concept of cluster care, where they limit their handling of him and try to do other procedures during his rounds. He needs to rest so he can grow, and I certainly understand that, but it was quite a change from last week. Parents' presence and touch is crucial to preemies' well-being and development. He slept a lot yesterday and did look snug as a bug in a rug while we were there.

 Today Weston had a different nurse. As per my routine, I called when I was on the way and asked them to wait until I arrived to start his rounds. I LOVE being there for rounds for two reasons. First, I get to directly participate in his care (change his diaper, take his temp, wipe his eyes and mouth, do colostrum care, and help reposition him if necessary). So if he has to get poked and prodded, it is with his mama's touch. The second reason is that, if they are doing something uncomfortable or scary, I can comfort him with my touch and my voice. In other words, DO NOT keep me away from my son's rounds!

 Well, guess what: they did his rounds at 11:30 today. It was because he needed the transfusion, and of course they wanted to cluster his care, but couldn't they have waited 30 minutes to start everything?? Maybe not-I don't know much about blood products. And then they only reluctantly let me touch him. So I put my hands on his back and head and DID NOT MOVE for 30 minutes. He was so calm the entire time and opened his little right eye just a bit further! His vitals were very stable. As soon as I took my hands away, though, he got a little fidgety, and his heart rate went up and he de-satted (oxygen in his blood dips). So, I'm a little frustrated.

Please don't think I'm substituting my judgment for all the wonderful, competent medical professionals working so hard for my son. It's just hard when I have expectations about my visit that are not met, especially when I don't understand why. But every nurse is different. Just as I had my favorites when I was on bed rest, I see that Shannon and I will have favorites when it comes to the care of our son. I am glad we are meeting so many different nurses so we can get a feel for their different philosophies and then make an informed decision about who we want to take care of our son long term.

 I would welcome any comments from medical professionals or folks who have walked in my footsteps. This is all very confusing. Don't worry, I won't get offended if it turns out that I am being a total nut job about this. And, I thank God that things are going well enough with Weston right now that I can complain about other things. ;-)

 So, the disappearing act. So many of you have sent the sweetest comments, messages, texts, emails, cards, poems, Bible verses, etc., not to mention the tangible help: meals, picking up groceries, etc. Some are from people I have never even met! I have probably mentioned this before, but I truly cannot express how grateful I am for all your prayers and encouragement. But I am not really up to responding to most of them at this point. Part of it is because I am physically exhausted (I only blog while I'm pumping). But I am protecting myself emotionally too. I cry at the drop of a hat. In fact, I cry (in a good way) almost every time I get a message from one of you. If you ask me how I'm doing, I might just burst into tears. As time goes on, I think I'll be able to ease my way back into responding, hanging out with people, chatting at church, etc. I just hope you all realize how much your support means to me. It has been one of the biggest unexpected blessings of this journey. My silence to personal messages definitely does not equal a lack of appreciation. I promise that I will re-enter society someday. Until then, know that you have blessed me beyond what I could have ever imagined.