Monday, February 23, 2009

Highs and Lows

This weekend was VERY busy and there were a series of highs and lows. Kc and I continued to stay in Room 1631 and the nights have gotten a bit better. We're able get a few hours of sleep in between feedings and diaper changes. Speaking of feedings, Noah was eating so well on Thursday that Dr. Fields took out his NG feeding tube. We were able to get a few pictures of him without anything covering his face (the first time since right after he was born).
As soon as the tube was out, however, Noah went on a bit of a hunger strike. He refused to drink anything from his bottle. We tried everything to get him interested — multiple different nipples attached to the bottle (thanks Nana for getting them), waiting longer between feedings, I even switched from breast milk to formula to see if he would like that better. Nothing worked. Unfortunately after 24 hours of very minimal eating, we put the NG tube back in. He is now eating around 30 ml from the bottle and the rest is pumped through the tube.

On a high note, we had several visitors who brought us yummy treats to eat. Noah got to be held by Chris and Lindsay (the future Mr. and Mrs. Overstreet) and Katie (the future Mrs. Torstensen). Our friends Dave and Mary are coming by tonight and Nana and Papa have been here lots.

Kc and I went to church on Sunday. It was our first time since Noah was born. Our church family has been so supportive over the past few weeks. They prayed for us and gave us the encouragement to keep going!

There is a strong possibility that we will be going home tomorrow morning. Yeah!!!!!! It will be a short stay, however, for we will be heading down to Children's Hospital Los Angeles to see a cornea surgeon and hopefully get some more information about the new drug. We'll know more tonight.

11 comments:

  1. Noah is only a few weeks old and already he might get to vacation in LA?!? What a lucky guy. Hopefully the meeting with the cornea surgeon goes well. We'll be praying for you three.

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  2. Yay for going home!! You can count our four hearts among the dozens that will be "packed" in the Jackson family's bags and ready to go to LA with you. All our hearts have a common prayer: A safe journey down south, wisdom for the doctors and continued strength for the three of you. God is in control and that is a true comfort!
    Love and prayers, Debbie, Fred, Avery and Evan

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  3. Wow I am so happy you guys are getting some sleep and that Noah gets to come home soon. I agree with Andrew he is a lucky guy to already get to vacation in LA. You guys can tell him it is where Mickey lives. Love you guys

    Katy Mc

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  4. Hey Little Buddy, it is Sierra here. You gotta up those ml's in your feeding. Whatever mls are. All I know is kibbles and if you need to borrow some of my kibbles I will be glad to share. You have to come home soon. We can be good friends and I will protect you. I look forward to being a family with all of us at home. I will even put up with Miss Kitty for all of us to be together. See you soon little dude.

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  5. Noah is SO SWEET! What a handsome guy! We'll be praying for your trip to see the cornea dr in LA. Safe travels!

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  6. Good luck in LA. I hope all goes well. You all continue to be in our prayers.

    Yesel and Dave Von Ruden

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  7. Good Luck in LA little man. Your mama and papa should show you Disneyland. I just got a text that you went home last night. I would like to be the first to congratulate you and say welcome home. Stay strong we will see you soon. Love Uncle Adam and Aunt Melissa

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  8. Hunger strike - not a good idea, young man! I really do like the "unplugged" look, and am certain you'll decide that's more comortable - so start chowing down and cooperate with your Mom on those feedings. Oooh...so you're heading to stardom in LA. Weren't you aware the Oscars are over for this year? Keep us posted, as you are THE real winner as far as everyone on Noah's Team is concerned.
    Love, Mary Anne

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  9. Finally getting to go home... How exciting! I am so happy for all of you. Noah will be able to meet his four-legged family members.
    I will continue to pray that God is in control and opens more doors for you.
    All my love,
    Shari

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  10. He's a beautiful little guy! I hope that all goes well down at UCLA and I have been praying for you 3. Hopefully you can all go home soon.

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  11. Welcome to the world outside of valley children's! Eat-up. Good luck in LA! We'll be thinking of you guys. I hope the trip goes smoothly.

    xoxoxox
    Amy

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