Sunday, November 1, 2009

the H word

Ellis' team has been droppin' the H word ... HOME! If everything stays on course, we expect to bring our son home in a week or two. It is so moving to type those words. Over 5 weeks ago we were planning his funeral, then after coming off ECMO, we considered having him home by Thanksgiving a long shot, with Christmas being more realistic. Ellis’ recovery has been extraordinary.

His feeding tube was removed yesterday and he continues to feed on demand – when he wants and how much. He is either nursing or taking a bottle, and so far, is gaining the appropriate amount of weight. Also, Ellis is down to .1 liter of oxygen, which is low enough to bring him home. That is just a small whiff, where we plan to wean him over the following weeks. So the criteria for coming home are: 1) takes all feedings by mouth; 2) wakes when hungry; and 3) passes a standard car seat tolerance test. The latter insures that Ellis is able to maintain his breathing for 2 hours while in the car seat.

We are so fortunate for Ellis' continued progress and milestones.

Here is Ellis’ inspirational Halloween costume – enjoy!

You can view here below or click on this YouTube link: http://www.youtube.com/watch?v=knbTrOqZr5M
for a clearer and larger version. Thank you again to everyone for your comments, support, and thoughts directed toward our son. We are so grateful to all that has been done for Ellis.
Take care; James, Christine, and Lilah.

12 comments:

  1. well, grandpa is glad to see ellis is looking pretty good. we will be glad to see him come home. grandpa charles.

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  2. So happy for Ellis,he is such a fighter! I want to read that 'Ellis has left the building'! Thank you for sharing this whole journey...Ellis is your real baby miracle! May God continue to Bless the four of you! Kathy

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  3. I have been waiting for his costume post!! How cool is he!! I just know that Ellis is going to continue to beat the odds!! I have known it from the very beginning. God Bless.

    Shannon J. RN

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  4. We are so HAPPY for you THREE and the progress Ellis is making (He's a tough one). We can't wait to read the first post titled "Home with Ellis"!!!!

    -Jeremiah & Glenda

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  5. Love it, love it, love it!!! That just made my whole day! Ellis you are one amazing little guy. Home is right around the corner so keep fighting!

    Aunt Jennifer

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  6. I am so happy for Ellis and your family! When you are settled and home, please let me know, I would love to see you. Congrats and lots of love.
    Julie

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  7. I am so excited! Darby, Sadie, and Evey watched the post with me. We were all chanting, "Go Ellis." We love all of you, and think about you all the time.
    Sarah

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  8. BEST news ever, BEST costume ever.
    3 words: Amazing, amazing, amazing.
    3 more words: God is good.

    Continued blessings to you! ann&crewinkc

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  9. Yay!!!! This is an awesome Halloween video, love the costume Ellis! Can't wait for you to be home with your amazing mother, father and big sister who love you dearly.

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  10. I work with a good friend of Christine's and have been following Ellis' journey. What an inspiration!!! God is so good and I pray that He continues to bless you and your family. We all look forward to the day when Ellis can go home, another of his many mile markers to a healthy life. Bless you!

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  11. Ellis Rocks!!! Praise God and his miracles!!! keep up the hard work. Emily

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  12. Nora and I just watched the video in his Rockey costume!! So cute! We love you guys!! Stl Children’s rocks!!

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