Wednesday, April 30, 2003

Sadly, today is going to be my last day of blogging for a little while. But while here, I'll let everyone know what the plan is. Tomorrow (Thursday) we're going back to Tulsa to learn a few things about how to care for Celes. Luckily enough, we're getting a courtesy room for two days to do this. After that, who knows what. At least we'll be spending time with her.

On to the Atkin's diet we've been doing. Yesterday I bought all the vitamins that the book recommended for people on the diet. They were:

  • Borage Oil (500 mg), containing 200 mg Gamma-Linolenic Acid
  • Flax Oil (1000 mg), containing 585 mg Alpha-Linolenic Acid
  • Multivitamins, containing an array of things
  • Natural Fiber Laxative (Sugar Free) containing Psyllium Husk Fibers (but also 2g fiber, if I'm correct)


These vitamins should help increase the rate at which I loose weight while also supplying me with nutrients that I'll be deficient on while on the Induction Phase of this diet.

So far, on this diet, I haven't been really starving, but at times I do get a bit hungry. I am allowed all the food I want, as long as I keep the carbohydrates below 20g. Not too bad, huh? And this induction is only going to last a minimum of two weeks. After two weeks if I'm ready to move on, I can, but probably not because I want to lose weight the fastest possible. If anybody is reading this and wants a change in lifestyle/health/weight, I would really recommend reading Dr. Atkins New Diet Revolution. It's only $5.99 at any Wal-Mart. It'll change the way you feel about eating.

I'm still a little depressed about everything going on. To be honest, I'm not sure how long Celes will live, and if she does, how good the quality of life will be for her. It's on my mind every day, I just don't show it to Kim, because there's no reason to spread fear around like that. I would give my life for her, without a second thought. I wish I could, but I just can't. The best I can do is just be here for her, but like in the previous blog, being here isn't enough for that social worker.

When Kim and I chose to have this baby, we knew things would get tough. We knew things would get tight, and we would have less time for ourselves. That's what we wanted, though, because Celes is worth everything, and Kim surely agrees. But this isn't under normal circumstances. I never expected to have a child with a need for breathing aparatus or a whole in her throat and stomach. You don't know how much it hurts to not even hear her cry. The closest thing to crying I ever see is a scrunched up "mad" face. Maybe this is a reason I don't like to see her so much? It hurts, deep down where I've never felt hurt before. I'm always looking for ways to get my mind off of it, but it's never enough. It's like a drug... You do it, you feel a little better, but when you're done, the problem is still there, but now you feel worse because you didn't spend that time with her.

Life is getting ever more complex, and making ends meet will be especially hard. I feel like a new me, not the old me that exploited everything with little feelings for others, but a new me with compassion for my family and friends and especially my wife. Without them I'd be lost in an endless void. But life will hopefully get better. It usually does, but I've never experienced anything like this, so I just don't know. My cousin Jamie went through something similar to this, but he didn't have the brain problems that Celes does. If she could just turn out like Jamie I'd be so very happy, but I won't know for a while. Watching her grow up will either be wonderously happy or wonderously misirable. That doesn't mean that I don't love her, it just means it'd be very hard to know she won't know the better things in life, or have to live on all kinds of prescription medications, or whatnot.

Another thing that bothers me is my teeth and my glasses. My glasses are near shot, they look like crap, and make me feel even worse when I look at something. Of course I know that it doesn't matter what other people thing about you, but to me, it matters enough that I get embarassed and look away as much as possible. If I'm dressed the best I can be, as clean as possible, hair styled nicely, I'm still left with that. I've lived with it for several months now, and I can't stand it. It makes me feel like the poeple think I'm just too cheap to buy new ones (which of course I am). Now my teeth is another story. That's been a lifelong problem. I wish I could have had them fixed while I was a child, but my parents never could afford them. It's embarassing to smile, just like how it is with the glasses. I have this one tooth that sticks out, and several others that are just crooked. I would fix all this if I had the money and the insurance, but for a person like me with no college experience, finding a job that pays that good is very, very hard.

College is another thing. I wish I could attend, but I can't. I know there are pell grants, but where I'm from, I don't know any colleges. Maybe I'll ask. But either way, going to college is the same thing as not supporting my family, because I won't be making any money. And God forbid that Rick give us money. Everytime he does, he uses it as leverage against us about many other things. Kim wants to attend a vo-tech to get into medical transcriptioning, but if she did that, who would watch the baby? As you know, Celes has special needs, and only her and I will be trained for it. The options are never enough, and I don't want to be stuck the rest of my life as just another minimum wage person.

So, any suggestions? And by that, I mean suggestions that produce results, not just "hang in there" or "it'll get better."
I'm sorry, but after this blog, I won't be able to blog again for a long period of time. This isn't a good thing in all; in fact, it depresses me. I started this blog with the intent of staying steady with it, but look here... No more blog. It's not my fault, nor anyone's really, unless you say it was Rick's, who decided to cut it off last month. I won't go into the detail of why, but I'm sure that if you're assuming it's about money, you're getting pretty hot... Sizzling, I would say. Anyhow, back to the subject at hand, right now I'm pretty depressed. There's just so much going on that I never planned on, so much traveling, and so much dealing with hospital social workers who don't understand the things I'm saying. Maybe it's just because I get nervous when I talk to people like that. She has all the right to take the baby from us but I don't want that to ever happen. You see, the issue is because we couldn't see Celes over 50% of the time was because of many different individualized problems. On one hand, we could spend much of our day with her, and on the other, we could get rid of stress by seeing the sights of a new town. Well, in all actuality, we went somewhere in the middle of those two. We did see her at least once a day, if only for a half-hour, but many of the times we would see her two or three times a day, being about 3 hours total, except for the occasions where we stayed over eight hours a day for her first surgery.

It's just like when we try to talk to her, she tells us that she just can't (but the reason is usually because we didn't see her over 50% of the time) help us there. If we were to promise to spend time, which to me feels like begging, she could even still say no, but I don't know the truth because I haven't asked. She keeps telling me that, since I'm not required to be up at the hospital anymore, that I should just go back home and get my job back. However, like I asked her, "What's the point in getting a job that you'd leave in a couple of weeks; a number of weeks that you're not even certain of to come back here to learn how to take care of her?" I don't even remember her answer to that question, but oh well.

There are other problems with the hospital as well, but there's really nothing we can do about it. Firstly, the nurses. They're rarely there when we come, so what we do is just stand by her crib. I've counted times as high as 40 minutes before her nurse came and talked to us. It was probably her lunch break or something, and of course everybody needs them, but for God's sake this is Perinatal Intensive Care. It would only take seconds for her to die if she had pulled her tube out, or farther brain damage if she had more seizure-like episodes. Of course machines beep and the other nurses will come, but then what about their babies. Just leave them out to die? One of the nurses also made Kim cry. What happened was it was almost shift-change (where everybody is required to leave the area), she talked to Celes' nurse. The nurse was VERY rude and telling her she had to leave at shift change, and all she wanted to do was ask a question about the baby. See, the question we had we got while in the waiting room. Our nurse told the mother next to us that our baby was probably going to have her breathing tube pulled. She completely failed to mention that to us. When the lady came out, she asked questions about the pulling of the tube. We knew nothing and investigated further to find out the nurse just "forgot" to tell us. That's why Kim talked to her, but she was very rude. When Kim came out she was crying. And, if you knew Kim like I do, she didn't do anything wrong. Now also, lately, since we're hundreds of miles away from Tulsa, we call every day. Three times out of five, when she calls, the nurse has left. How's that for crazy?

So, all in all, it's quite depressing. There's other factors attributing to this, too. Like, if you don't know already, it was accidentally assumed that we had herpes. We thought we did ourselves, even. Turns out we don't. But, Rick and his happy self decided we needed a lecture about how he should have been told because we live in his house. It was a 5 minute lecture that seemed to last forever. He only found out because somebody accidentally told him, and we didn't want to tell him anyway because we knew this would happen. But now we don't have it, and never will. It was a wasted lecture, but it hurt, because it is our privacy, and ours alone, even if we do live with him. If anything like that were to happen again, I wouldn't tell him. It's none of his business, and I hate getting lectures about what I feel is unfair, invasive, or personal. Kim's mom is much nicer, although a little on the silly side sometimes. Thing is, she means well, but she's always asking us to do stuff. Stuff like moving furniture, feeding animals, watering, etc. She doesn't ask it all the time, but sometimes she does, you know? And tells us what we need to do to prepare for the baby, how to care for it, how much of a burden it is... It gets old, real old, and very quick. Especially when every other relative tells you. They all think they're doctors, but what they don't get is that the practices used when they had babies is outdated by better medicines, better practicing, etc.

Oh well... Being sad, anxious, and depressed never really hurt anyone.

So today, check out http://www.orbitz.com/, a nice site for hotel reservations and cheap prices. It's the best service I can find.

Friday, April 25, 2003

Phew, while writing this, I can see my last blog. That was a really long time ago! Well, first of all I don't have access to the internet anymore, which is a real bummer to this blog, but whenever I can get it back I'll try to post more often.

The biggest news is obviously that Celes has been born, but everything didn't go as planned. She was born at McAlester Regional Medical Center in McAlester, OK at 10:00 AM on February 26th. She weighed 5 pounds 4 ounces and was 19 inches long. She was about one month premature. The reason we went to the hospital in the first place was because Kim's blood pressure was up. After staying overnight she was having contractions, so they had to go ahead and take her. When she was out, she only cried very lightly once or twice for a couple of seconds, and she wasn't breathing for quite some time. So, after getting out of the delivery room, they took her out and put her in another room where they could keep an oxygen mask over her. She stopped breathing several times and was having seizures, so later that day they decided to take her to St. Francis' EOPC (Eastern Oklahoma Perinatal Center) in Tulsa, OK. There she has remained, until this date. We're hoping to have her home in about a month or so, if everything goes well.

The reasons for her stay are varied. At first she was having apnic periods and seizures, so they explored all the causes, but the cause was, sadly enough, in the brain. The doctor said it was maldeveloped, and it was the part of the brain that affected movement and motor skills, including breathing. They don't know what this will cause in the long run. She's also had 2 surgery's. The first was a PDA ligation, and the second was to put in a trachea tube and G tube. The first is a hole in her throat to help her breath, the second is to feed her through (since you can't feed a baby with a hole in its throat).

My family has been more than helpful these past couple of months. My mother has raised a whole bunch of money through fundraisers and donation jars, and practically every family member I can think of has sent a card to us or cash or whatever. I've lost my job because I had to spend all my time with her, but they say I can get my job back when I'm ready to come back. I just hope they're not lying (of course they also told me I wouldn't lose my job in the first place).

We were staying at the Ronald McDonald house in Tulsa right beside the hospital, but we had to leave because we weren't able to spend enough time with Celes, but it was just too hard to spend a lot of time with her because she was on the minimal handling protocol which meant we couldn't hold, touch, or talk over her for the first few weeks, and after that, there just wasn't much room beside her bed to see her and remain comfortable. But, even still, we stayed as much as we could and were constantly calling and checking on her.

I taped a lot of what went on on Michael's digital video camera. Sometime in the future I will copy it all and burn it to CD, but for now I have other priorities...

Also, Kim and I have decided to start a diet. The Atkins Diet... From reading the book, and learning why and how a person gains weight, we feel like we can quickly and easily burn off these extra pounds and get to our recommended weights. Its a really good book, I would recommend that everybody try it...

Sorry, but since I haven't been online in a long time, I don't know any websites off hand for the site of the day... Anyway, later everybody!