April 22, 2008 Almost out of milk

So my little nap from last night turned into 13 hours of sleep! I didn't wake up until early this morning. I never even got up to pump, so that was one of the first things I did to relieve some pressure.

I listened real hard and took notes this morning when they did rounds on the baby. I wanted to hear something about the blood test and I also wanted to get an update on her brain ultrasound. The brain ultrasound wasn't done until after I left yesterday, so I never got to hear if her brain is getting better or not. Her brain bleed is getting a little worse, her ventricles looked more expanded, but they are not categorizing it to a grade 3 yet...it is still a grade 2. Then they started talking about her AFP being high and that they requested another test to be run. I let them finish everything and then I asked for answers. They came clean and told me that her blood came back from last week saying that she was anemic and that she has abnormal tissue. Anemia is common in preemies, but the tissue is not. The AFP will help detect if there is going to be some kind of abnormal growth, and they think that her SCT might be trying to grow back. Some tests can be wrong, and before they go sending her into exploratory surgery, they wanted another blood test done. The blood tests are sent off and takes about a week for them to come back. If this next one comes back high, then they don't know what they are going to do next. They were very honest with me that they don't know why her SCT would grow back if her coccygeal bone was removed. They assured me that her coccygeal bone was removed during her surgery, so my understanding of all the research I did during the pregnancy is that it can't grow back. Also, her SCT was cystic and did not have any mass in it other than fluid...so what does this "tissue" have anything to do with a new SCT. When you look at her butt right now, it is perfect and it is not swelling or even appear that something may be trying to form. So I think that all of us are very confused at this point, and we are all hoping that the first test was wrong. I am nervous about it because I do not want her to go into surgery again, but all of this is in God's hands and he will make sure she is safe.

After rounds, my social worker came up to me to talk. I have not talked to her in over a week, and when she approached me when I was crying on Friday morning with Paula, I told her I was fine in a very blunt way. She knew in the tone of my voice that I wanted her to leave me alone. So when she came up to me this morning, I could tell she was a little leary of what to say. We had a nice, calm discussion and I came clean and told her that I was very disappointed in the way she has handled our case. I told her how I felt about everything, including what she told Consierge Services about me staying in their apartments. In the end, I told her that I would like to start off with a clean slate with her, and put everything behind us. She apologized and admitted that she conflicts with Consierge Services, and realized that it has affected her cases (like mine) in a negative way. On a great note, she did tell us about some things that may help us pay or some...if not all of her medical bills. It is a waiting game, but I have all the time in the world if there are grants out there to help. Trust me, Larry and I got the bill for the helicopter transport....and WOW, we will be paying $5 a month for the rest of her life just on that one! lol.

So Kaydence did great without her nasal cannula, and they don't think she will need it again. Her saturation is perfect, and she maintained her stats all day long yesterday. She has also been moved back into an open crib and she is now responsible for regulating her temperature. I came in this morning to see the new crib, and they even had a little sleeper outfit on her. Everything they have is huge on her, and the nurse asked me if I brought outfits for her. Uh, I don't have any preemie outfits! I know that I have maybe 3 or 4 from what people have given me, so I will have to bring those in when I come back for next week. That's exciting that I can put clothes on her everyday.

Overall, she really struggled today compared to how she has been doing. I personally think that they put her in an open crib too soon, because she could not maintain her temp today at all. While I was at lunch, she got real cold and vomited all over herself. The nurse said that they can have an upset stomach when they are burning calories to try to keep their temp up and being unsuccessful at it. They pulled up a warmer and put that over her crib to help her out...but I would like her to go back into her isolette for another week. I told the night nurse that I would not be upset if she moved her back into the isolette after I left, hoping she got the hint.

I knew it was going to happen, but I did not think it would happen so soon...but they have informed me that they are almost out of the frozen breast milk. I just can't produce enough, no matter what I try. I called my OBGYN and they called in a prescription for Reglan, and it is supposed to help me produce more milk. I will pick up the medication tomorrow night when I get back into Martinsburg. I'm bummed because I doubt what I brought in from the apartment will last her until Saturday when we come back.

The physicians said that they would like me to try to breastfeed twice a day, so that is just what I did today. This morning, she didn't want a thing to do with it. She would not do anything, and the nurse was working really hard and trying to get her to latch on. This afternoon, she woke up around 5:15 p.m. and she was rooting and sucking on anything she could get in her mouth. She wasn't supposed to feed until 6, but Jackie let me try to nurse her. That little baby sucked for 40-45 minutes like she was a pro. She was wide awake, and did everything perfectly. I felt bad for her because I can only pump 1/2 of what her full feed is right now, so I know she was still hungry. The breastfeeding time was nice though...she was so cute and she wanted to hold both of my hands the whole time. It was hard because I had my hands full...but I made sure I had an extra finger to give her from each side.

So I was at the hospital from 9 a.m. to 10 p.m., and I have concluded that I really don't like to depend on other people. I was so ready to go back to the apartment at 7:30, but I have to wait until they are ready. With as exhausted as I am now, I don't want to be waiting on anyone. I can't be mad because then I would be ungrateful, but I just feel like I need to have control over something when it comes to being here...and being able to leave on my terms sounds like a good start. I think next week I will be driving myself around DC...as scary as that sounds! lol

Goodnight everyone! I'm hitting the shower and going to bed.