Sunday, May 6, 2012

Reesa Gets a G-Tube

Happy That This NG Tube is Coming Out!
We recently had a  planned, 5 night stay at Phoenix Children's Hospital. The main purpose was to have a g-tube placed in Reesa's stomach, along with a couple of other secondary procedures.  Krabbe disease has diminished Reesa's ability to suck and swallow which puts her at risk of aspirating on liquids, food, mucus, etc. This development is frustrating because, since the day she was born, Reesa has been a terrific eater and has always loved sucking on her pacifier. Over the last month Reesa has been fed via NG feeding tube which goes in her nose to her stomach.  The new g-tube replaces the NG tube and is a more convenient, comfortable and permanent solution for feeding. It is basically a quarter-sized hole through her belly into her stomach where we attach a feeding machine. We also administer medication and even burp her through this hole. For the first few weeks Reesa will be fed continuously via the g-tube at about an ounce/hour for 24 hours. It makes moving around pretty tricky since Reesa is always trailed by a tube, feeding machine/bag and an IV pole. It's amazing how we have gotten used to this crazy routine. You just adapt. Although no hospital visit is fun, Phoenix Children's Hospital is an unbelievable place with wonderful doctors and nurses.  They've created an environment that makes hospital visits comfortable for the patients and their families.  As usual Baby Reesa was a trooper. No matter how many times she was poked, prodded, awakened, examined...she always had a smile for mommy and daddy at the end of the day!
Getting Ready for Surgery

Recovery...Puffy from the IV Fluids

 
Daddy & Reesa
 

Auntie Heather & Chris

 

Reesa Loves Uncle Houston


12 comments:

  1. She is such an angel. I love her so much and her parents are the most amzing people I have ever met. She is blessed to have been born to Jamie and Sean.

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  2. Thank you for keeping us updated ,as you know your family is constantly in my thoughts and prayers . Your optimism and courage are inspiring and I am happy to see everyones smiling faces through what I know can't be easy . I am glad your little angel is able to be more comfortable with the g tube . Much love.

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  3. You all are still very much in our thoughts and prayers. We pray for baby Reesa every night. Again, please get in touch w/ us when you are able. We'd love to get a petition started and tell baby Reesa's story. Love you guys!

    Katrina & Jules

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  4. Reesa is truly a little trouper and amazing little angel! And I agree, she has awesome parents (and relatives!) May God's blessings be with you all always! Much Love, Liz (Chris' cousin)

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  5. This breaks my heart. I will keep you all in my thoughts and prayers. What amazing strong ppl you are. Very inspiring. Ur little girl is absolutely adorable <3

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  6. My thoughts and prayers r with you and your family! May God place his healing hands on Reese heal her I do believe in miracles. May God lift and hold you all through this time. God bless you all.

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  7. Thinking of you always! Baby Reesa is such a strong Beautiful girl, just like her Mommy. Always praying for all of you. GOD BLESS and Love Always!

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  8. I don't know if you saw the news about averys blog. I know that besides their beautiful lives brunch cut short their diseases are not the same. I just love that they call the g-tube her "gland tube" and I think that fits reesa perfect! If you by chance missed it I think averys bucket list is amazing to check out! Prays and love!

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    1. " Lives cut short." Glam tube... Auto correct gets me every time!

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  9. Do you have G-tube huggies for Reesa? If not--they are AWESOME!!! You can get them off of etsy.com. They are absorbent, cute & washable ;)

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  10. You are an amazing family. This story has really touched my heart. My twins have also had g-buttons and they are definitely something to get used too. Button buddies also has some super cute patterns for her gbutton!! God bless u baby reesa!

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