Hi all, new, question about feeding tube - Mothering Forums

 
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#1 of 7 Old 01-22-2006, 07:25 AM - Thread Starter
 
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Hi everyone I'm new here. My name is Courtney, and my daughter is Julia (she's almost 4 months, but was a month premature). She was recently diagnosed with Netherton's syndrome, which is a pretty rare genetic disorder, a type of ichthyosis. It's basically characterized by really dry skin and an abnormality in the hair (it breaks off easier than normal hair).

She's FTT, b/c her body needs more calories than a normal baby's, b/c her body's working over-time to produce skin that gets dry and peels off.

We're BFing at the moment, and recently have started trying to suppliment with concentrated formula with a syringe (she won't take a bottle).

We talked to the GI clinic up at Stanford University, and they were talking about having a g-tube put it. I'd really like to avoid that (but of course, if that's the best option, then we'll do it).

I have a question - I'm under the impression that if the tube was put in, we'd feed her thru it during the night, and breastfeed during the day. And that we'd be using either formula or expressed breastmilk thru the tube. I guess I'm not really understanding how breastfeeding thru the night is different than putting breastmilk in a tube thru the night.

Anyone have any answers to this? Any other experience relating to g-tubes (the surgery, care, how much weight is gained, etc) is VERY welcome.

Thank you so much for reading!!
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#2 of 7 Old 01-22-2006, 01:24 PM
 
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My dd has had a feeding tube and it's one of the best things that I ever agreed to for her. It has given us freedom. I don't think you will regret it if you decided to get one. You can see pics etc of Nitara's tube in my sig link below and read her history. It made a huge difference for all of us in a very stressful time. She is currently 50% weaned from it but will probably have it for a year or two longer at least. I have absolutely NO regrets getting her a tube. She is otherwise a healthy, normal baby, but the feeding issues and lack of calories were hurting her growth and development before we got her the tube. Now she's thriving.

With the feeding tube you can do whatever you want, whatever works best for you. Her doctor can give you more of an idea how many calories per day she needs, what percentage is nursing and what percentage is formula. I would encourage the bfing to continue for as long as possible b/c it will help strengthen her mouth, give her sensory input that all babies need orally, and of course breastmilk is really great for babies. A lot of kids get dependant on the tube, especially if there is oral trauma of some kind. If you kee her thinking she has to nurse to eat during the day and not let her see you feeding her overnight, that would be the best thing.

My dd was tube-fed day and night because she couldn't handle much at a time. For night feeds (and sometimes day feeds too) we had a small pump for her that we could program to deliver the feeding automatically all night long. It made life much easier for all of us.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#3 of 7 Old 01-25-2006, 05:51 AM - Thread Starter
 
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Thanks for your quick response! And sorry for my delayed one! lol

I'm still just so reluctant to have a feeding tube put in. I'm horribly worried about the surgery aspect. She's 4 months old (3 adjusted, she was a month early), but only weighs about 7lbs. I know they have to put her to sleep for it.

Right now, she won't take a bottle, as we've been exclusively breastfeeding. We've been giving her concentrated formula (26 calories/ounce) as well as watered-down rice cereal through a syringe after every feeding (and I'm pumping, as well) in an attempt to get those extra calories in her. I don't know if it's doing any good, we have a weigh-in at the doctor on Thursday, so we'll see then.

I'm thinking we might try having a tube put thru her nose first, before we commit to surgery, just to see if it makes a significant difference. I know another mother who has a child with Netherton's syndrome, and she has a feeding tube (the child), and she's still not gaining weight adequetely. Unfortunately, FTT is part of the syndrome, up until about 2 years old or so.

OK, I've babbled enough. Thank you so much for responding. It's nice to hear from someone who has experience with the tube.
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#4 of 7 Old 01-25-2006, 11:37 AM
 
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You don't have to rush into this decision. Did you read my website about NG tubes vs G tube? I'll cut/paste it here for you. An NG tube is a good way to get calories into her while you decide. But it has mixed blessings. I was very against any feeding tubes at first but my dd was losing 4 oz a day in the hospital right before my eyes, even on an IV. Her problem was not wanting to eat at all. After the tube was put in she ate, but then it was really, really hard to cope with the NG. Some families I've heard of have it for a long time with no problems. Others have problems with it after their baby gets old enough to try to pull it out.

A lot of this has to do with reflux kids, so you can ignore those parts.

---------------------------------------------
The Mixed Blessings of an NG tube

If your baby is losing weight and not eating, it will most likely be given an NG tube to help gain weight again while they figure out the best treatment options. The NG tube saved my daughter's life. However it was a mixed blessing. NG tubes are supposed to be temporary. They are not meant to be used for weeks or months and here's why:

* The baby can feel the NG tube going down the back of the throat. The baby may not want to swallow with the NG in place. It can therefore, make the baby even more reistant to eating by mouth.
* The NG tube can make reflux worse. There is a valve on the top of the stomach that will close to prevent food from coming back up. This valve is already weak in a refluxer. When the NG tube is in place, the valve can no longer close fully and food will come back up.
* The NG tube can cause sensory issues to become worse. Think about it. Tape all over your cheek, a tube down your nose that you can feel at the back of your throat.
* A baby can become dependant on an NG tube and not want to eat by mouth. Tube-feeding is much easier, especially for a baby who doesn't want to eat in the first place.

The Benefits of a G-Tube

Asking for a g-tube was the best thing I have ever done for my daughter. I never thought I'd say that when I was pregnant with her! No parent ever wants their child to have a stomach tube. If your child is going to be on an NG tube for more than a few weeks, I would recommend you start to do your research and consider a g-tube. Here's why:

* A gtube does not cause sensory issues. You can work on getting your child to eat again, but still feed them the nutrition they need through their tube.
* A gtube is hidden under clothing and people will not stare, as they would with an NG tube.
* A gtube takes the pressure off the parents. It was my sanity saver! It made me stop worrying about my child's growth and feeding her. I was finally able to enjoy her as my baby and heal those bonds that had been broken through my struggles to feed her and her struggles to fight me. She can keep it as long as she needs it.
* A gtube can help you manage reflux better.

It is important to note that in some children reflux will become temporarily worse after the gtube placement, until the stomach heals and adjusts to contracting around the tube. In most kids it will resolve itself within a few months. Many surgeons will want to do the fundo in order to prevent this temporary worsening of reflux. It is my opinion that it's worth it to wait it out and see. Nitara's vomiting is almost gone now. I'm glad we waited.

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#5 of 7 Old 01-26-2006, 12:28 AM
 
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My dd had an NG tube for a year, after which we transitioned to a g-tube. If I had to do it again, knowing that we needed the feeding tube long-term, I would have bypassed the NG tube. I do think it's fine to talk things over with her nutritionist/other specialists before making a final decision. Having surgery is a big deal, having a feeding tube is a big deal.

Having said that, I am grateful that we have the feeding tube for now. Dd uses hers primarily for fluids (she has a kidney transplant and needs extra hydration), and we are able to give the bulk of that overnight so that the daytime is less stressful and allows her time to develop drinking skills in a low-pressure environment. I think the same kind of thinking might apply to your situation. If your dd got the bulk of her extra calories at night via tube, then your breastfeeding times during the day could be less stressful. You wouldn't have to worry so much about syringe-feeding her after each session, etc. The night time feedings could include both breastmilk and high-calorie formula.
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#6 of 7 Old 01-26-2006, 12:34 AM
 
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I popped in to see if I could offer anything for the OP because I have knowledge of G-tubes from my hospice work as a certified home care consultant. You ladies have covered most of it. I wanted to make sure they weren't telling her to put anything weird in it. I see they are instructing to put the beautiful nourshing breastmilk in for her babe. I hope all goes well. It is probably going to help her in the long run because you won't have to rely on her to get breastmilk into her system all the time. You will be assured she is geting everything she needs. Good luck.
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#7 of 7 Old 02-01-2006, 11:16 AM
 
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Hi Courtney.

My daughter has a rare genetic condition too (glycogen storage disease) so I can relate to the difficulty you must be having trying to find out information on what is best for your child.

We had a g-tube placed shortly after my daughter's diagnosis 4 months ago. My daughter still breastfeeds on demand, day and night. The g-tube just allows us to get a little bit of extra calories in her and is a back-up in case she gets sick.

My daughter is fussing, so I need to run, but feel free to private message me if you have any specific g-tube questions.

BTW, my sister and brother-in-law live at Fort Ord too!
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