Can you tell that I finally got myself a digital camera? I'm loving it. I actually took this little video clip on Monday. I thought her cry was so cute. She was letting me know that she wanted to be held, but I was able to distract her with her little bear for a few seconds. Don't worry though, I held her as soon as I was done with the camera!!!
OK. The doctors have come up with a new feeding plan for Elaina. They are going to give her 60 cc's (2 oz) every 3 hours during the day. The schedule is 7, 10, 1, 4 and 7. They are going to let her eat from the bottle "recreationally", meaning as much as she wants and when she stops showing interest, the bottle goes away. The remainder will be put through her NG tube by a pump at a very slow rate, 1 cc every 2 minutes. Then from 9pm until 6 am, Elaina will be put on a continuous feed getting 30 cc's per hour (again the rate is 1 cc every 2 minutes). The idea behind this is to let her rest while she's getting her nutrition and growing. I've been told that when a baby eats, it's like their body is running a marathon. Well, when a baby with 1/2 a heart "runs a marathon" the outcome probably isn't that great. The doctors think this is why she's throwing up. She's just exhausted. So if this is what we need to do in order for her to grow enough for her next surgery, so be it. The plan is for her to come home on Thursday. One of the Resident Doctors wanted her to come home today, but I didn't think that was such a good idea. I think that this new feeding plan needs to be tried out for a couple of days to make sure that it really is going to work well for her before she gets sent home. Now don't get me wrong, I want Elaina to come home as soon as possible. I just don't want her to end up back in the hospital any sooner than is necessary (like surgery this summer). I'd rather have her spend a couple of extra days in the hospital getting everything right, than come home and have the same or worse problems. I also asked the Resident Doctor to call Elaina's pediatrician to make sure that he is in agreement with the feeding plan. I know from my previous conversations with him that he wasn't too keen on the idea of having Elaina on a continuous feed through an NG tube. He was worried about her throwing up at night and me not being aware. He told me that he would be more comfortable with an NJ for continuous feeds. (An NJ is a tube that goes down the nose and through the stomach and then into the intestine). The Resident said that she would call my pediatrician on Wednesday and let him know how Elaina's first night went. I hope that they can come to a good agreement. Getting this right is such an important thing for this kiddo!
Elaina sure was cute and snuggly today. It is so hard to leave her and come home. Of course, Ben is worth coming home to. He's being so cute. Taking the training wheels off his bike yesterday really grew him up. He's decided that he's a big boy now and so he can do a lot of other grown up things too. He was so fun tonight. We went for an ice cream cone when I picked him up and he wanted to open all the doors for me and get the napkins, etc. He kept telling me that he's grown up now, so he can do it all by himself. What a funny kid. At least he's behaving better at the moment. I'll take good manners and obedience from that kid any time he wants to give it to me!