Almost 35Weeks/ 60 something days

We’re feeling pretty drained these days. Tuesday both kidos had their third eye exams. We didn’t think too much of it since we were told that the last two exams were fine… well turns out that we were misinformed. Taylor actually had developed stage two retinopathy of prematurity (ROP) by the time of his February 14th exam. So it wasn’t a really huge surprise to the staff that he failed this exam and required laser surgery to prevent retinal detachment and blindness. To us, however, it was news since were not informed of this development two weeks ago. So in 48 hours we had to digest the fact that our child not only wasn’t “fine”, but required a pretty major surgery in order to give him any chance of getting out of this with sight. Since the surgery isn’t done at our hospital, we had to digest the idea of a transfer to another hospital, getting used to a whole new environment (where only the doctors and RTs are familiar since they rotate between both sites) and new nurses (all of which I believe are convinced that I am clinically depressed and neurotic). So Taylor was transferred early on Thursday morning… I always thought that his first outing would be with us… but it looks Bell Ambulance gets that honor. We spent the whole morning with him, and not just staring at his box either. I held him for nearly an hour before the transfer, and then for several hours after at the new hospital. Jon also held him for a couple of hours. I was pleased that no one told us that we could not… because it was very important for me. I think I would have blown a gasket if someone had told me that I could no longer hold him. Anyway, sometime around two they took him to the “procedure room” for the surgery. We left there feeling ok about things, but still pretty nervous. Since ten minutes before they took him was the first time we actually were able to speak with the surgeon about what was going to happen, we had a lot of risks and information to digest. The worst part was being told that in a few minutes our son was going into a surgery that would essentially destroy any all peripheral vision. If we didn’t do the surgery, then he lost all vision, if we did then he lost all of his peripheral vision. Lets talk about damned if you do and damned if you don’t! We also left there knowing that he could end up on the ventilator if they could not keep him still for the surgery. Since Taylor has a history, and is known as “the wild man”… we felt pretty confident that this would happen. Much to our surprise, he made it through the surgery on nasal cannula! We took one of those forbidden sighs of relief… only to be called back nearly ten or fifteen minutes later and informed that he had to back on the respirator. I felt like a pig being fattened up for the kill. Stupid, I know, but the word respirator is to us as the atomic bomb is to Japan. It stings and floods our minds with all the awful thoughts and feelings of the babies earlier days. They keep telling us that it won’t be for very long, but this no longer comforts us. When Alivya went back on it “not for very long” she came off a week later… When Taylor went back on the special vent “not for very long” he came off two weeks later… as you can see, we have not had a great history with the term “not for very long”. Besides, these nurses go home and live their lives… these babies are our lives. So maybe a week or two is “not for very long” to them, but to us it is a tenth of their lives. If you think of it that way, their week is equivalent to two and half years in our lives. It’s an eternity!

So Taylor will be at the hospital for at least a week (2.5 years) in order to have follow up for his surgery. Alivya has been moved into an open crib and had her IV removed today! HURRAY. She also began nippling in order to learn to coordinate eating and breathing. I like to think of this as the home stretch since that is pretty much the only think keeping her from coming home. So I guess we will just have to see how she does.