Thursday, June 12, 2014

Postponing an NG Tube

Excited about the good news! :)

There is BIG news after Savannah’s Cardiologist appointment today!! I thought it would be easier to write it on my blog (more room).

(For my sweet readers I haven’t been on in almost a year!! In that time I had a sweet baby girl, but I will update you all on that later.)

Savannah weighed in at 8.5 lbs!!!! That means she at least gained an ounce in one day (the doctor’s scale is usually lower then the visiting nurse’s, so it might be more). The cardiologist was VERY happy to say the least! She kept thanking me for my hard work.

For those that don’t know, Savannah plateau on her weight gain, then started to drop (she was labeled failure to thrive, like Josiah) and we found out she need’s to weigh at least 10 lbs for her open heart surgery, yet she was having a hard time getting to 8 lbs.

The cardiologist wanted me to pump and supplement my milk with formula, since you can’t physically make more than 20 calories and they wanted her to get at least 24. She is burning too many calories when she breaths due to the hole in her heart (it’s like a work out every time she breathes).

Soooo…I saw a feeding specialist twice and we tried various ways to get her to take fortified breast milk. Various bottles, a new device they use (it sort of looks like a rubber medicine cup), and an SNS system (it hangs around my neck and I tape a tube to me, so when she nurses it drips into her mouth for her to get both.) Any hoo, she is so smart and doesn’t want anything but mom and has refused all of our efforts. 

Attempting Rubber Cup

I have been trying over and over again for about 3 weeks. I finally decided to use a syringe to feed her with. I figured if she takes her medicine that way, why not milk?! It’s slllooowww going and I spend a good chunk of my day just slllooowwlyyy squirting 1 oz in her.

Syringe Feeding
But between nursing and that, it’s working!! Praise the LORD!! She has gained weight! She averaged out at 34 grams a day (they want at least 30 a day).  That being said, Savannah does NOT need an NG feeding tube put in!!

The cardiologist said she would go ahead and present her case the surgeon board next Tuesday and so we could move ahead with setting up her surgery in a month or two (so that right there is good, they wanted to do it immediately at 3 months originally). Then she decided to send us in for a cardiogram so we could she where the hole in her heart was at (same or smaller).

MORE good news….the hole has gotten SMALLER and is trying to heal itself!! Praise be to GOD!!!!! Joseph and I have been asking the Lord to spare her the surgery, yet we trust HIM if He chooses to heal her heart through the surgery.

That being said I don’t have to go back for another 3 weeks. Our nurse will continue to come twice a week to weigh her. If she continues to gain we then don’t have to go back for another 2-3 weeks and….we can plan of PUSHING THE SURGERY OUT until she is 5-6 months (as long as she continues to gain.). If that happens we will at that time look at heart out again and possible push it out further or even cancel it all together, if the Lord heals it on it’s own.

Trying to smile at mom.

We want to thank everyone for their continued prayers! And ask for weight gain and healing for our sweet Savannah Rose. 

For HIS Glory,

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