Day 12

The power supply on my laptop died yesterday. Thankfully Shanon let me borrow her brand new laptop (she's a fool). It took me a lot of the early morning to get it working (the first time I used Windows Vista) but its doing the job now and I've been able to work this afternoon. Hopefully our power supply will show up this week.

Taylor's road has been a bit bumpier the last couple days. We keep being re-assured that its to be expected, but I just wish it was smoother. Her oxygen sat levels have been all over the place at times and they have been giving her oxygen at times. Its been odd. There are times when she is perfect and is on room air and has no problems whatsoever. Other times, they have her on a lot of oxygen and she's having difficulties. It sure seem like the CPAP is a big part of the problem. When it seems to be working fine, she's fine. When its not, she's not. Its such an imperfect piece of equipment, and it seems like somebody really smart could make a lot of money by perfecting it.

There are other factors as well, we know. Sometimes its something going with Taylor (perhaps an upset stomach, or hiccups, etc...). The doctor is still concerned about her ductus arterious. She said 2 nurses have reported hearing possible heart murmurs, but she doesn't think so. Taylor is sounding great too her. She's just concerned because of the increased need for oxygen.

Taylor's PIC line was removed today! This is a big step for Taylor and a relief for us. As previously mentioned, we didn't like the PIC line being in there and were concerned while it was (if infections happen with it they can be bad). Taylor doesn't need it anymore. Besides caffeine she's completely on breast milk and fortifier. She still has her feeding tube and will for a quite a while still. But no IV!!!! One less thing on our baby! Now if we can just get off that CPAP!

Taylor was doing great weight wise. She climbed up to 2 pds 9 oz yesterday morning. Unfortunately, or fortunately however you look at it, she's been pooping like nobodies business. She had several eruptions yesterday. Anyway, she's down to 2 pds 7.5 oz (weighed last night). I made the mistake of saying I would take her temp and clean her diaper this morning. Yuck! It had leaked out all over the bed. As Michelle would say, the nurses have gloves. I should have let them have it.

I got to hold her this morning for a couple hours again and it went well sort of. I've told Michelle that lately I'm beginning to doubt myself a bit and wondering if I'm doing something wrong while holding her because it seems like she's had a lot of issues during those times. Deep down, I know most of the problems are the CPAP (nurses have usually verified that it is not working correctly) but I just want to be sure I'm not causing distress (like I do when I am around most other people).

Anyway, this morning's transfer to me was... how shall we say... not very textbook-like. Essentially the CPAP came off almost completely (the little Velcro mustache that holds it on came unstuck from the left side of Taylor's face) and the only way we kept it running for those couple hours was by placing the Penguin stuffed animal that Beth got her on top of the CPAP pipes (almost on top of Taylors face). Now I'm sure that McGiver would have been proud of our Penguin Pressure Point, but something tells me this is not how CPAP is supposed to work. The doctor wasn't very impressed either. She kind of gave one of those CPAP pep talks to the nurse and RT and myself, about how we need to find something that works. Uh yeah, couldn't agree more. Can you do that soon? "We need to use our standard approach", she said, almost implying that Michelle and myself were at fault for having some of our suggestions implemented. The RT basically said there were no standards, and that they are still trying to figure out what works best with this setup (they've only been using this setup for about a month). So I guess we are free to continue to make suggestions that will screw it up.

So Taylor was basically handed to me with a malfunctioning CPAP and a cute little Penguin where half her face should have been (for the record, my CPAP suggestions would never go so far as using Penguins). For the most part, we did quite fine thank you. Unfortunately she needed to be on oxygen during that time, so who knows how much was it or how much was my superior child handling skills. I'm in a relatively good mood tonight so I'm going with the later for no particular reason.

Taylor had a rough start to the afternoon. After the holding, I mentioned to the nurse how much better Taylor seemed to do on her stomach than her back. "Well maybe later.." was the response. I hate that rejected parent feeling... Anyway, she was on her back for the first part of the afternoon and did horrible. She needed oxygen and her sat levels were bad. Once she moved to her tummy things dramatically improved and she's had a great evening on room air with only a few drops.

She did burp up some milk one time when she was on her back. That wasn't pretty. It was leaking out her CPAP nose "thingy" and she was gagging and about every alarm that could went off. After the nurse sucked out all that precious milk, she recovered and things were ok again.

For whatever reason I'm in a fairly good mood tonight. I'm sure its because Taylor is doing better this evening. But maybe its because I got a pretty good night of sleep the last two nights (all things considered), and maybe its because Taylor is almost 30 weeks, and maybe its because I got some work done, and maybe its because I could joke around with Michelle on instant messenger for awhile and it felt almost kind of normal, and maybe its because I had a much needed shower this afternoon. I don't really know but it feels weird. I hope to go find my office (we've recently moved) and my desk and be at work for a couple hours tomorrow. That will be nice. Its nice to think about those things again.

There's a big part of me that's worried though. Because of the past couple months, I am almost afraid to feel good. Stupid, but unfortunately true. But what can you do? You gotta enjoy things while you can. I'll get to hold Taylor again in about an hour, and I plan on enjoying every moment of it. We can do 2 sessions of Kangaroo care a day, and go as long as we want as long as Taylor is tolerating it. There was just a mis-communication the other day.

BTW, I added some pictures to the slide show. Michelle's Grandma Burnice took them. There are a couple really good ones that I like a lot. One has Taylor with her eyes open. The other is Michelle looking at Taylor and Michelle looks happy.