Friday, August 14, 2009
Two Steps Forward, One Step Back
Everything is still going well, but we're running into another race against the clock. As we have stated before, Karsie is being supplemented her food while she is not getting full feeds of breast milk. Even with the breast milk, Karsie is needing to be given something called TPN (Total Parenteral Nutrition). It has the nutrients that she needs to survive and does not have to be digested. However, the TPN is a necessary evil as long term use starts to hit the liver hard. Karsie had some labs done today and on her liver enzymes her bilirubin was trending higher. This is expected, but we are needing to get Karsie off of this as soon as possible. The way to fix this is to have Karsie able to handle much higher doses of breast milk. The more she is able to handle, the less TPN she will need to get all of her nutrients. Right now, she is on a good pace. Her long term goal is 15 mL an hour. She is currently at 2.5 and being increased .5 mL every day. For every mL she increases on breast milk she is reduced a mL of TPN given. She is currently at 10 mL an hour of TPN. At this rate she will be at 15 mL in about 3 weeks, give or take. If there are no setbacks, there is no problem, and even if there are some setbacks, the liver can repair itself. However, this cannot go on for a whole lot longer. She is also being given medication to help those levels.
The rest of the news is good news. She is being "sprinted" on her nasal cannula which means she is being given the cannula 2 times a day for 2 hours to see how she handles it. She did great today. The video we posted earlier is during her time on the nasal cannula and you can see she is alert and happy (until the end...but she calmed down quickly after that). We came in tonight as well and she was reduced on her CPAP to a rate of 5, which is less pressure than 6, and she was, for the first time, at room air, which is 21%. And handling it!!! She troopin' along.
Her patch looks good still. It's very close to looking like skin. The green color is turning much lighter and looking thicker. Now that she's not able to hit herself even though it hurts to do so (can't babies just use reasoning to stop doing that?) she doesn't go through that downward spiral making her so mad, so she's been much more pleasant lately.
Finally, Grandma Turner was able to see her today. We are still very sad that Children's makes us choose only 2 people to go in other than us, which essentially makes this Grandma's only visit to see Karsie until she's out of the NICU. However, we also realize that an exception was made on our behalf, and while we do not at all agree with the rules we are all very thankful that we were given this gift. We spent a lot of time with Karsie today, most of which she was awake for. Grandma read her Bible stories and we held her hand and talked to her. It was a magical time.