"Not flesh of my flesh, Nor bone of my bone, But still miraculously my own. Never forget for a single minute,
You didn't grow under my heart - but in it"

Wednesday, March 2, 2011

Hope. There is always Hope.

Thank God for God my friend Nina always says and oh how true that is. Without God today would not have gone the way it did. Without God I would not feel the way I feel. Without God I would have no hope. But, I do!

I pleaded with God, "Please just give me his birthday! We didnt get Christmas, please!" I thought if I could just talk to that one woman who has a child with Trisomy 8, maybe I could make a decision.

The gastro doctor called, then the surgeon. The surgeon said he doesnt think the nissin is for Noah. He said it is for refluxers not retchers and he feels Noah is more a retcher than refluxer. I agree. He told us flat out that GJ tubes were nuisances. When they work good thats great but when they don't which happens often then that can be trouble. Then he told us about a surgery that is for retchers but he doesnt recommend it. It is a 3 hour surgery, they have to open the child up. Then they detach the esophagus from the stomach and have it drain elsewhere. Noah would never be able to eat by mouth ever again, but the retching would be cured. UM? No! That may be good for some folks but I am not there yet. I ask him, if Noah were yours, what would you do? He said out of the choices given it would be a GJ.


I skyped with Nancy and told her our options. There would be no way I would take away Noah's ability to one day eat. I know he can do it, Nancy knows he can do it, Paul believes he can too. So at that moment it was a GJ.

Then God worked his awesome-ness. I went to check my email and there it was. An email from the women who has a son with trisomy 8. PTL! She left her number and I called. I never call people but this time I called. We talked for an hour at least. There are so many similarities to her son and mine. We then chatted again later and again it was fantastic!

After her and I spoke I felt more at peace. I realized that I do not have to do what everyone tells me to do. I need to get rid of some of the doctors. I need to do what my motherly instinct tells me to or aka the Holy Spirit tells me to. Noah has had no damage to his esophagus by retching. He has never once shown any signs on tests that he has reflux. Reflux meds can cause vomiting. Noah is growing well and gaining and sustaining. He has delayed gastric emptying and vomits in the morning everyday. Paul suggested we cut the overnight feed a few hours before 9am and see if it helps. We do not need a GJ tube.

The dr refuses to let us stop his feed but agreed to let us go to 20mls for 4 hours in the morning and we can pick the time. He says if this doesnt work we get a GJ. No. We dont. I trust my doctor and respect him, but if his vomiting isnt affecting his health and it is a T8 characteristic then we can deal with it as long as he stays healthy. Also if we chose to cut his feed for 4 hours and it makes 20 hours of feeding better we will. We wont do that at first though. We are also weaning him from his prevacaid. If anything happens we will put him back on but the 3+ months he has been on the meds nothing has changed.

So after a morning of crying and yelling at God like a 5yr old He listened and answered and we now have perfect peace. Thank you Lord.

Be blessed

1 comment: