Charity is doing so well and we are thankful!  She is now breathing room air only since midnight last night.  Her trachea being opened up has been so helpful in allowing her to vocalize a bit and to move air in and out of her body.  She has been pooping with regularity again and seems to be adjusting to her medicines being administered through her G-tube instead of through an I.V.  and she is moving quite a bit, feeling comfortable with wiggling her body again.  It is hard to imagine that she will be in the hospital much longer, although we still need to learn correctly how to feed her and give the medicines.  Any g-tube advice is appreciated :) 

Thank you for standing with our family, you have blessed us!

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Posted by Stephanie Skelly

Hi Elizabeth... our family continues to pray for yours and for Charity. We rejoice in her great improvement! Our James (4.5 with Ds) has a g-tube (for going on 3 years now)... is Charity's tube a g-tube or a g/j-tube? I think you will be amazed how quickly you get the hang of using it to care for Charity, though it can be intimidating at first. It is amazing the grace the Lord gives so we can care for the sweet little gifts He sends!

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Posted by Tricia M.

I agree with Stephanie. There's not much learning curve. There are different types of tubes and feeding methods. Cadenne's had a little medication port for her meds that the syringes fit right into so we didn't have to open up the larger hole. The big thing with those is that you just have to flush them to make sure the entire dosage actually gets to her stomach and doesn't just stay in the tube.

Will you be feeding with gravity or on a pump? I don't have pump experience, but gravity feeds were fairly easy. We learned to let it go in about 10 cc's at a time and pinch the tube off by bending it with our little fingers. It then became a one handed operation. :) The BIGGEST thing is that you need to be careful to make sure the feeding syringe is FIRMLY attached to the G-tube port, as we had quite a few feeding disasters where the syringe came loose and all the milk poured out all over her. NOT a fun thing for middle of the night feedings!

Here is a really great site that answers TONS of questions about feeding issues... both G-tube and relearning oral feeds, etc. It is a message board system, so you can go and just read, or post specific questions. Everyone there is really nice!

http://www.parent-2-parent.com/forum/

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Posted by callmekate

Compared to the above comments from experienced Moms, I am not worthy to leave any kind of advice for g-tube feeding. I can only encourage you that God will give you what you need in order to care for Charity. The hospital staff can help, I'm certain, even if you need to call in the middle of the night. I'd send my nurse husband down south to you to assist if I could! I think you will do fine, with practice and patience. Research all you can, ask questions and just assume you can do it. Because you can.

So glad to hear God has answered two more prayers of mine - Charity on room air! So awesome! And I also prayed for her regularity (to put it delicately) - such good news! Praying for more good days ahead and complete recovery.

- Kate

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Posted by Little Bro

WOW! Words cannot express my thankfulness to our Lord! He deserves all the credit. I can still remember pleading with Him to save her life on Palm Sunday morning. WHAT A DAY THAT WAS! He has not stopped healing and she is almost home! Praise our almighty God! Worship Him! Bath in His Presence! Be Still before our God!

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Posted by Anonymous

A friend of mine is a dietitian and her main thing is g-tube stuff. She directed me to a website for the Oley Foundation which is all things g-tube and more. The site is www.oley.org
There is a newsletter if you're interested and oh so much more. Hope it helps!
Stephanie H

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