Seraph has a G-tube for food and meds. She has lots of oral aversions and doesn't eat orally yet. You can read about her G-tube here.
Before her G-Tube, Seraph had an NJ-tube which is a tube inserted through the nose and threaded down to the tummy. (NG-tube is to the tummy, NJ-tube is threaded all the way down to the small intestine. This must be placed under floroscopy at the hospital)
Many preemies have an NG-tube. It's fine when they're tiny. But as they get better at grabbing things, they're always taking it out.
When the doctors started talking about a g-tube for Seraph, I searched the blog world for pro's and con's. I didn't find much. So, I wanted to weigh in on the subject.
I LOVE LOVE LOVE Seraph's G-tube.
-her oxygen stats are noticeably better without the constant tube in her nose.
-she used to get nosebleeds all the time when she had the nasal tube. (Blood thinners are common for CHD kids, so the bleeds would be hard to stop.)
-it was impossible to suction out her nose for colds (which did lead to worse colds)
-We can easily vent her tummy (this is like burping - but easier to do! plus Seraph can't actually burp now that she's had a Nissan to correct her GERD.)
-easier to place the g-tube--faster and you can do it at home!!! (Yes, you have to carry the kit with your baby all the time, but after you do it the first time you realize it's not that big of a deal - like putting a ointment and a bandaid on a ouchie)
-her oral aversions have lessened (but not completely disappeared) since giving up the nasal tube.
-no more taping her face -- red, raw, weeping skin on her cheeks
-once she learns to eat orally, the g-tube hole closes up naturally very quickly :)
There have been a few bumps in the road. Here's some tips to help you avoid them
G-Tube Problems and fixes:
1-Dehydration. When Seraph was learning to crawl, she was flat on her tummy a lot. She was more mobile, so she gained muscle and lost an appropriate amount of weight. Result: the g-tube was too big. It leaked while she was sleeping on her tummy. She lost all her fluids all night long. In the dark, I just didn't notice the crib sheets were wet. It cost us a trip to the ICU to get her re-hydrated.
Prevention: Check g-tube size. It only works if it's snug against the underside of her skin. If it's snug with 4 gauze pads, that's OK. If you need more than 4 gauze pads, it's too loose. You can GENTLY pull up on the g-tube to see how far it comes up. (You'll notice when you're cleaning the site, anyway.)
IF it's too loose, you need to get a new size. If you can't (like there's a wait-time for how soon your insurance will cover it, or while you're waiting for delivery)....instead of gauze, you can use 2 pieces of toilet paper or ½ a piece of a tissue, rolled up like a cigarette, and then wrapped around the tube. The idea is to lift the tube enough so it's right next to the under side of her skin even when she's on her tummy. (don't pop it out) Wrap the rolled tissue around several times and then tape it down. The kleenex/tissue won't get wet because the site won't leak.
ALSO: ask your doctor if you can replace spilt feeds with an equal amount of Pedialyte. This will prevent dehydration and keep your baby out of the hospital. (Pedialyte has powder mixes now, too.)
2-Granulation tissue--raised, sometimes painful, red tissue which can develop at the hole in the skin. Granulation tissue can bleed and promote leakage of stomach contents through the stoma onto the surrounding skin.
fix/prevention: Mix 20ml water with 2 drops Eucalyptus Oil. Use a cotton ball to clean the site with this Eucalyptus-solution every time you clean it. You can use this instead of soap because it's a natural disinfectant and antiseptic. The skin will heal, the site will work better.
Write "G-TUBE ONLY" on a tube of your favorite diaper cream. Use it only for the skin around the gtube. This protects the skin if some of the stomach acid leaks.
I know it sounds crazy, but it's really so much easier than before. Plus, she's happier and more mobile.
So if you're in that "should we really get a g-tube" boat, worry less and just go for it :)
Showing posts with label Nissan Proceedure. Show all posts
Showing posts with label Nissan Proceedure. Show all posts
Thursday, February 25, 2010
Why G-tubes are better than NJ-tubes
Labels:
G tube,
GERD,
gtube,
gtube problems,
gtube tips and tricks,
NG tube,
Nissan Proceedure,
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Wednesday, June 10, 2009
Seraph's GI Surgeries done!!
Here's Seraph at 5am in the waiting room. Usually her trips to the hospital only have one parent. She was thrilled to have both of us with her.The early hour didn't bother her one bit.
Note the redness on her cheeks. That's from repeated retaping of her NJ Tube. That cheek will heal up soon. The NJ also gives her a huge gag reflex. It bothers her nose, and she feels better after she pulls it out.
Seraph had HUGE smiles for her daddy. OK, she always has huge smiles for her dad. It's hard to be jealous when I get to see her being soooooo sooooo happy.
More huge smiles for Daddy. Huge smiles for all the nurses, too - even while they were checking her blood pressure.Not so happy when they placed her IV. ...but a few minutes with her dad and she was happy again.
They were NOT able to do the surgery laprascopically. The pressures in her heart were too high. So, they made an incision just below the scar from her heart surgery. They expected the surgery to take 3 hours. It took 5 hours. We took turns trying to sleep in sleep-resistant chairs. Next time we're going to sneak up to the couches by the piano for naps.
Part way thru, we jumped up and donated to a blood drive. They had free grape juice after!! I hadn't given blood since college. I got up too soon after and got dizzy. I had to lay on the floor with my feet up listening to cool stories about wolf attacks. Anyway....

Seraph's surgery went well. Her NJ tube is gone for good. Her reflux should be gone, too.
Now comes the tricky part - getting off the vent. They had to intubate her for the surgery. They kept her sedated over night. Today they're easing off her sedation so she can start to breath a bit on her own and get rid of extra fluids around her lungs. Her lungs are very wet today.
Seraph has always been slow coming off the vent. Please keep her in your prayers.

Labels:
G tube,
GI Surgeries,
hospital,
Ladd Procedure,
Nissan Proceedure,
Seraph
Thursday, May 21, 2009
June 2 - Seraph's Intestinal Surgery
Seraph's intestinal surgery is scheduled for June 2nd. Because of her heart history, any surgery (being put under general anesthesia) is more risky. So, they'll be correcting several intestinal problems all in one surgery: nissan fontifcation for GERD, placing a G tube for feeds, and Ladd procedure to fix her intestinal malrotation (this includes removing her appendix).
We expect her to be in the hospital for less than two weeks. Immediately following the surgery (while she's still sedated), they'll do a full echo cardiogram on her heart. We hope to hear good news about her heart.
They will have to intubate her for the surgery. It breaks my heart to put her through this again. I know that getting rid of the reflux and being able to eat normally will be worth it. But, there's no way to convey this to her. During her recovery, I plan to be at the hospital with her as often as I can get away.
This is a good step forward for Seraph. Thank you for keeping us in your thoughts and prayers. *hugs*
Labels:
G tube,
Intestinal Surgery,
Ladd Procedure,
Nissan Proceedure,
Seraph
Nissen Fundoplication (Surgery for GERD)
Because she was born early (and maybe other factors), Seraph has GERD. The valve between her throat and her stomach is weak. She often spits up stomach acid.The Nissen is a surgical correction for GERD. They take the stomach and wrap it around the bottom of the esophagus. Then they stitch it into place. This wrap puts pressure on the esophagus so that liquids from the stomach don't go back up her throat. When she swallows, her food will be able to go into her stomach but it won't come back up.
Currently, all of Seraph's foods and medicines go through a tube in her nose directly into her small intestine. After the nissan, she'll be able to start learning how to eat normally :). Her mouth won't be so dry all the time. Her lips won't be chapped from the acid. She'll be more comfortable. Her risk of choking on the reflux will go down.
We're very excited for this surgery (scheduled for June 2nd).
They'll make 5 small openings (about 1/4 inch long) to do the surgery. We expect her to be in the hospital less than 2 weeks.
Labels:
GERD,
Intestinal Surgery,
Nissan Proceedure,
Seraph
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