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7/6/08
It's the little things you miss when your away from home. I miss my bed. I miss being able to sleep next to my husband every night. I miss being able to go to the cabinet and get the nail polish I want. Now I have to call Shawn and try to describe to him the exact color pink I am looking for among a sea of pink polish then wait for him to bring it down on his next trip. I miss having immediate access to all kinds of things like my hair straightener. I dread having to pack all this stuff up again so I make do with out a lot of it. I miss my Kitchen Aid mixer and my food processor and my blender. Don't get me wrong- I'm glad I am able to be down here close to my daughter. I get to spend 8 hours a day with her and I don't have to feel so far away from her when I go back to the apartment at night. The long term housing from the Ronald McDonald house has been a godsend but it doesn't make being away from home any easier. It's been ok till now, but today I am a little down thinking about the road ahead. I was talking with our daytime primary nurse Gail about Kennedy's feeding issues and how long she really thought it was going to be before we could bring her home. She says another 2 months. September- two more months away from home for me if we can afford it, and 4 months after Kennedy was born. When I left my house it was still spring and when I get to go home it will be fall. Crazy. Ok, well enough of my pitty party- How about what you really came for- The news on Kennedy.

Kennedy has been doing pretty well. She is low on her vent settings so she is not requiring too much extra oxygen, only 28 to 35%. (room air is 21%) She has been NPO (no food) for the last few days. She is still having feeding issues so they are trying to get the surgeons to consult on her; they being my primary nurses. Thanks to my primary making a huge fuss they are letting her start on .5cc every three hours (that's almost 8 days before she would bet a full ounce of milk) Its not much but we take what we can get around here.

7/11/08

Today Kennedy is 2 months old. 9 days from now will be her original due date. Well a lot has happened in the last 5 days. Kennedy was doing so well the put her back on a regular nasal cannula last Saturday but yesterday they had to switch her back to the Hudson prongs again since she has been having a rough couple days with her oxygen needs (around 60-70% sometimes as high as 100%). We thought that they were finally going to give into our fighting and have the surgeons do a consult on Kennedy, but they decided to try something new first and put her feeding tube down further. Now instead of being in her stomach it goes past the stomach and into her small intestine. They have her on .5cc/hour continuous feeds to see how she does with it. If that doesn't do it then I don't know whats next. They have to get this girl to eat. She is developing cholestatic jaundice from being on TPN for so long so they are giving her Phenobarbital which is made to treat people who have seizures, but its off-label uses include the treatment of cholestatic jaundice. One big milestone happened on Thursday this week. She moved from her isolette into an open crib. Miss Kennedy is a big girl now and can even be swaddled. One of the nurses taught me how so now I love to wrap her up. She is getting much bigger, but is still so tiny when you try to wrap her in a blanket. As of Tuesday night she weighed about 4 pounds 10 ounces (2100 grams).

Shawn and I would like to thank everyone who continues to help us out. We would especially like to thank my Mom and Dad who have been there for us and helped us with everything from feeding the cats to emotionally and financially helping to support us. Also since I know many of you want to help but aren't sure how, we are in need of grocery gift cards. The only stores I have found so far are Stater Brothers, Food 4 Less, and Costco. Also since it looks like Kennedy is going to be in the hospital for a while longer if you would like to help us to stay at the Ronald McDonald house a little longer you can send check made out to either me and Shawn or directly to the Ronald McDonald house. Its $15 a day and $105/week so even a check for one day would be very helpful.

Thank you again to all of our family and friends for all of your love and support!

Katie & Shawn