May 1, 2008 Feeding Tube is Gone!

I come in bright and early to see the team of physicians at my baby's crib side. Everyone was so happy to talk about the great news from yesterday. They told me that she could come home as early as the beginning of next week if she starts eating on her own. I laughed and made the comment that we should pull the NG tube out and force her to eat by bottle. Her nurse cut in and said that Kaydence had pulled it out on her own late last night, and she had planned on seeing how her feeds went before she put it back in. What!! Her feeding tube is out, and there aren't any pieces of tape on her face?!?! Wow, I was excited but really nervous too. It's like I want her home so bad, but I am scared she will regress once she gets off all the monitors.

Before the team left, they told me that if she did real well, they would consider discharging her Sunday or Monday. Again, that made me so excited to think that she could finally come home, but I am scared that it is too soon. Just a few days ago, they are talking cancer and surgery...and now she might be coming home. I would like to keep her there another week just so she can build her strength and get used to her feeds being all by mouth.

During her feeds today she was still very tired, and I felt like we were force feeding her. She would not nurse on me, and they were doing everything they could to keep her awake for her feeds. She would barely finish her 50 cc's and it would take her up to 40 minutes just to get it down. Again, I want her to be strong with taking the bottle...and a little more alert before she comes home.

I left to head home around 2 p.m. and ran into plenty of traffic. I absolutely dread that drive, but I know that there aren't too many more times I will have to make it. They said that they need to monitor her brain bleed and teratoma through weekly ultrasounds for at least 4 more weeks...so we might have to drive there for those. They are checking into a place in Frederick for me too.

Kaylee was home from school by the time I got there, and she helped me unload the car. I gave her a huge hug and couldn't wait to hear how her week had been. She told me about her fun day with Izzy when the schools closed because of the vandalism, her dinner at the Outback with Larry, and their home cooked meal of spaghetti O's and hot dogs that Larry made! lol.

Larry and I made a REAL home cooked meal tonight and it was nice to have that time together. We watched American Idol that they recorded for me, and then called it a night. All of us were definitely ready for bed.