Yesterday we had a "care conference" with some of the doctors in the NICU. It was a very disheartening meeting for me. First of all, they (or just this one doctor) said that we aren't allowed to touch Ezekiel. He is on "contact precautions" because he has MRSA, and so to hold him, touch him, straighten his blanket, stick his paci back in, we have to be wearing a gown and gloves. He can't have any skin to skin contact. I can't tell you how much this absolutely breaks my heart. And it infuriates me. Kangaroo care (skin-to-skin contact) is one of the MOST IMPORTANT thing for any baby, especially a preemie. There is this new doctor (We will call her Dr. Know-it-all, or Dr. Kita. I don't know her real name) who thinks she can come in and change everything around, and so she is the one who told us no more skin to skin contact. Before she came around the doctors just said to be very sure to scrub our hands well before and after holding him, and not to touch anything else in the unit with "dirty" hands. But now she is apparently the new final word. She tried to act comassionate saying things like, "I want you to be able to kangaroo your baby as much as do". But obviously that cannot be true.
Here is the story with MRSA. At least 50% of the general population has an MRSA colonization (ie they carry MRSA but are not infected by it). The percentage is higher in hospitals, because MRSA is mainly found in hospitals... it's a hospital disease. Being infected with MRSA is a totally different thing. Being infected makes you very very sick, and Ezekiel was infected. Now he is better-- he has had 3 negative blood cultures saying he is no longer infected. However, he still has a colonization. Here's the double standard: if most people in the hospital are colonized with MRSA, as Ezekiel is, why is he on contact precautions and everyone else isn't? I'm going to ask the doctors today. And the only right response is for them to either take Ezekiel off or to put themselves on contact precautions. Am I right? I'm right.
The worst part of the conference, though, was when Dr. Kita explained to us that our NICU experience is just the beginning. She told us that for the next 3-5 years Ezekiel will have to see all sorts of therapists. Speech therapists, physical therapists, sensory therapists, every kind of therapist. She said we would have to take him in for therapy multiple times a week, or sometimes people will come to our house. We will have to have home health care help with his oxygen at home. (according to Dr. Kita he will "definitely" come home on oxygen. Pray that he won't need to do this!). This is all just because he was premature. There is nothing specifically wrong with him that they currently know of on which Dr. Kita is basing these statements, other than the fact that he was born early.
Now, I had a nebulous idea floating around in my mind that raising a preemie would be a little different than raising a full term baby. I've at least read a little bit about it. But I kind of thought that it wouldn't be that different. You know, a few extra doctor appointments, maybe he would need glasses, he might be a little shorter or smaller. According to what we were told yesterday, we are in a whole different ball game. We have a "special needs" child. We need to have "early intervention". I absolutely felt slapped in the face. I know some of you are familiar with some of these things. I know very little about what it will be like to have to live with all this. And of course, it could just be that the doctors are giving us the worst case scenario when they emphatically say he will need all this therapy and help.
This is all about perspective, too. Daniel has a different perspective. He was a "special needs" kid. He was in the special-ed classes in grade school. He was diagnosed with several learning disabilities. And now he is incredibly intelligent, as most of you know. He says that all of the one-on-one attention he got as a child helped him a lot. Of course I want to give Ezekiel the best chance possible, and if that means therapy then I want him to have therapy. I just had always thought that Daniel and I would be able to give our children the best care without "prefessionals" intervening. One more thing lost.
The other worst part of our care conference yesterday was Dr. Kita confronting us on the things we had apprently been doing wrong. A little slap on the hand for breaking rules that no one had told us about. That was incredibly frustrating and I don't want to write much more about it. Today Dr. Guerra (aka Dr. Russia from previous posts) apologized to Daniel for the manner in which we were confronted about these things. So that at least makes me feel better. Dr. Guerra is wonderful. We really really like him.
Obviously I am very frustrated today. Most of the doctors have been wonderful, and we have had a great experience so far with the exception of just a couple of nurses. But Dr. Kita is making things a lot more uncomfortable for us. We don't feel very comfortable in the NICU anymore. But anyway I need to go pump so no more writing for now.