Posted By Posting
Jan 07, 2009
lchang4
G-tube or not
Hi.. I'm new here. I'm needing advice about giving my baby a G-tube with fundoplication or not. I have a set of twins born at 25 week gestation, with twin to twin transfusion syndrome. They made it through except one of them (Katherine) is not nippling well. They are about 4 months old now but still in NICU working on feeding. Katherine is suppose to drink 72cc of breastmilk within 30 minutes, every 3 hours. Sometimes, she can finish the entire amount but other times, for whatever reason, she drinks anywhere from 5cc to 72cc. She would start out sucking fine. Then she would fuss and don't want it, then she sucks some more. Or she would fight us. Or she would fall asleep. I don't know if she's just a "snacker" like some babies. One time, her gavage feeding leaked all over the bed so the nurse decided to not refeed her and waited for 2 hours. She was so hungry, she drank the entire bottle. I don't know if her fussing is due to gas or not. She's a hard burper and she also usually poops around feeding time. The doctors and nurses think she has reflux and wants to undergo fundoplication and give her a G-tube so she can get discharged. The pH probe test was normal but they said she was off Prilosec for only 24 hours so the test is invalid. The GI doctors don't think she has reflux and wanted to do impedance test but the neonatologists said the symptoms look like reflux and they're not doing it. I think it's because the insurance is pressuring them for discharge. I told the GI doctor that she used to poop every 3 hours but the past few weeks she poops only once a day. He thought maybe she's constipated and put her on laxative. She's off of it now because she's starting to poop more now. My dilemma right now is should I go for the fundo with G-tube, plain G-tube, or NG tube? Any suggestions?
Jan 07, 2009
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
JMHO but I would NOT do a Fundo or a G tube yet.....I am getting ready to run out to the store So this won't be very long.

Again, JMHO but unless a child is having LIFE threatening issues due to the GERD.Reflux I would NOT do one at all. JMHO again. I know many parents at another website that were told that in order to go home form the PICU they HAD to do a Fundo and a G tube and they regretted it with every fiber of their being later.

Please email me at onion95@gmail.com and I will tell you the link to the other site where literally 100s of kids have had the Fudno done and 100s of them have G tubes. Please, wait it out.

We were told Jedd needed one and here he is at 2 thriving with NO issues other than tube issues due to feeding aversion.

I will tell you that the general though it MAJOR children's hospitals is that a child should not get a Fundo until all other options have been maxed out. This includes a GJ tube first.

BTW they can't do the surgery unless YOU consent to it. What the DRs want they don't always get.....Believe me I've told DRs NO before and have NOT ever regretted it. Period.

YOU are your child's best advocate, get all your information and make the BEST decision you can make.

I'll be back later.

Jan 07, 2009
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
One more thing....why can't she just go home with an NG tube for now...and give her time to grow.
Jan 07, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Is she having other complications which indicate the immediate need for a feeding tube placement? Is she aspirating? Failure to thrive? I am wondering why they are pushing for the fundo without additional testing... Is there any way to get a third party to help you sit down with ALL of her doctors? That might help you to get a more accurate idea of her needs right now. It must be so hard to have one DR tell you one thing and another tell you something different. Surgery and tube placement is a tough decision and you are perfectly with in your rights to take a little time (as long as her condition is not emergent) to decide and weigh all your options. There are several moms who have had to make that choice so I am sure they will weigh in as well.
Jan 07, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
My situation seems quite different than what you are dealing with but I will have to agree with Jessica and Jen. I think that surgery and feeding tubes should a last resort and/or in an emergency. What kind of formula is she on or are you pumping? If you are pumping it could be something that you are eating. I am just thinking of my experience. My dd was MSPI, milk soy protien intolerance. It doesn't have to be severe to cause GI issues, like lack of poop, and that can cause some reflux issues too. You could try an elimination diet to see if things get better.

They have wanted to do fundo, g-tube feeding then TPN (IV feedings) and I have refused all of them. Adriane is 19 months and still has issues but they aren't all reflux and food related. She is gaining weight well enough and we are getting things figured out.

I hope you that our advice helps you make a decision on how to proceed. -Amanda

Jan 07, 2009
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
the other ladies asked some great questions that I didn't have time to think about this morning. I'd certainly want extensive testing done prior to a fundo as well.

I ask for extensive testing on the GI tract to make sure it moves correctly as well. A motility specialist would be a great idea at this pint just to rule that all out before proceeding with a Fundo. Jedd's belly moved slower so he would not have done well with a fundo.

Also, I am not sure if this applies to your case or not but, kids with Neurological issues also do poorly with Fundos as well.

YES a fundo is and has been a life saver for MANY kids but on the other hand it, it has caused lots of discomfort and physical issues for others. It is a MAJOR surgery that cannot be taken down once done. So, once it's done, it's done there is NO turning back.

Can you do a Swallow Study to see how well her suck swallow is co-ordinated, that will tell you if she is aspirating.

Feel free to ask any questions. We will answer them with BTDT answers.

Jan 07, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
we have had the fundo hanging over our head for some time...I work with a GI who is so great and wants every avenue and med tried before we resort to something like that. If the fundo had been done when Z was very young it probably would have burst as we didn't know til later that he is a severe gagger and wretcher (which can easily undo a fundo)...i would absolutely wait for at the very least further testing...Sounds like she is eating, just not that well. Z was born at 31 weeks, and he has never eaten great, but he got a lot better after we got him home and he was out of the hospital setting. That suck swallow reflex kicked in about 5 months...Is she displaying a lot of residuals? Is she puking...I'm just wondering why they are jumping straight to fundo!
Jan 07, 2009
lchang4
Thank you all for replying. I have been pumping milk for over 4 months and have enough for both girls (about 5 oz each time). I stopped trying to breastfeed the girls because they can't get discharged without bottlefeeding. Katherine weighs 8 lbs 4 oz and Kaitlin 6 lbs 4 oz. They are on 24 cal and 25 cal fortifiers. Other than didn't want to drink or finish her bottle, Katherine doesn't really have any problems except high blood pressure. She doesn't have oral aversion yet either. She's gaining weight with the NG tube feeding. I do believe that she has some reflux like all infants but is that enough to get a G-tube? She's considered "failure to thrive" by the staff because she can't feed on her own. Her "report card" looks bad for nippling but I think there's many factors for why she's not feeding well. For one, they kept changing her feeding times because the nurses were running late. They have to feed 3 babies within 1.5 hours (30 min each). When Katherine's awake, it's not her turn yet. By the time it's her turn, she's already tired from crying. And because they are rushed on time, Katherine doesn't really have the full 30 minutes to eat, also factoring in diaper change and temperature. The nurse would give up easily "because she just doesn't want to eat" and gavage her milk. Maybe Katherine figured she'll get fed anyway so why work so hard to drink? Sometimes, I get so frustrated with the NICU that I just want to bring my baby home so she won't be rushed or be timed. I am considering an NG tube but the doctors and nurses said they really don't recommend it because of risk of aspiration. I think at this point, because my secondary insurance is dropping out and we don't know how long my primary insurance will pay because Katherine's report card looks bad, the doctors are not going to be ordering any more tests. They are just waiting for me to sign the G-tube consent and send Katherine home to work on feeding. My husband wants the NG tube and gets mad at me when I come home and talked to him about getting the G-tube. He said they try to brainwash me everyday I go to the NICU. He does have a point there. Everyday, the staff say or do things (in a subtle way) to suggest G-tube is better. They also talked about the insurance dropping out maybe to stimulate me to sign the consent. If I want to take Katherine home on NG tube, can they really refuse discharge? Is it really difficult to insert the NG tube?
Jan 07, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
I agree with the others who suggest asking more questions and going through other options before the fundo. My son left the NICU with an NG tube after 2 weeks (due to cleft palate). Reflux was diagnosed at 2 months along with FTT and he has had bouts of aspiration pneumonia. The GI we go to is at a major children's hospital in NYC. At times it has been frustrating because he does try to exhaust other possibilities before moving on and I get impatient for progress to be made. I asked about a g-tube when Charlie was 4 months and he proposed going forward with it because he was not going to have his cleft palate repaired for several months and he considered the NG tube temporary at best. It worked well for us - the g-tube is easy to take care of and with the NG Charlie was sneezing or retching the tube out a lot so we had to reinsert it frequently. (BTW, the tube is not hard to insert, you just need to practice and get comfortable with it). Long story short, if I can get away with not having my son undergo another surgery I will take that option any time. As long as he is not in danger and as comfortable as possible. I think the docs that explore all of the options take a thoughtful approach. Our guy has never suggested a fundo which I appreciate, though other non-GI docs (ER or PICU docs, for example) have asked me about it. GERD and feeding issues are very complex and it is important to cover all the bases before operating on the little ones. FWIW, my suggestion would be start with the NG and do that as long as you can. If your daughter's sucking improves with the NG great. If it doesn't work then g-tube. Good luck.
Jan 07, 2009
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Be a Mama Bear. Tell them you want to go home with the NG tube. I wouldn't do a G yet because she really hasn't been given time to grow yet. being a preemie and all. Preemies are notorious for bad feedings until they get the hang of it.

as far as the nurses feeding her, can you tell then you want to be the one to feed her. That way you can feed her when she fusses, demand feeding, KWIM. Just like you would do with any other infant. I have a friend here in VA whose son was a preemie and the nurses were LAZY!!!!! They would give up after 5 mins of trying to feed him and jsut bolus the rest.

She was told if he could eat on his own for 24 hours then he could go home. She stayed the entire 24 hours and SHE did every single feed during that time. He did fantastic. She basically proved that the nurses were being lazy. KWIM. And yes, an NG is NOT hard to put in. I inserted one at leat every 2 weeks for 8.5 months. I have also done it at a friends house so she wouldn't have to do it on her DD. I did it for her.

IMHO there is not any increased risk with aspirations due to an NG tube. I've never heard that before. Jedd had his from 9 weeks until he was 8.5 months old and never aspirated with it.

Now if she goes home and then slips to 100% NG tube fed. I'd look at a G tube then but not after trying an NG first.

BTW I don't think it's fair of them to drop lines about the insurance co on you. That's just not right and I'd let them know about it. Can you call a patient advocate??? I'd get them involved. It is not the nurse and DR responsibility to push the ins. co. issue on you to get you to consent to things you may not want to do. It's unfair. They are trying to push your hand in a direction you may not want to go, or you could say they are bullying you. Just my 2cents on that subject.

But yes, NG tubes are easy to care for once you get used to it. I will tell you that G tubes are soooo much easier though. But I wouldn't jump right into one. Not unless the child was older.

Jan 07, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
We have not had many great experiences with doctors to tell you the truth and I am sorry you are seeing much the same. I don't know because I am not there to know, but it seems from the things u have said that they are doing what's best for the staff at the hospital and not your child. I am glad you are here and doing your home work.

I have found that when Meggy's doctors want something that we don't agree with, they try to scare us into submission. You are a mother and you have instincts to tell you what is right for your little one's. This is invaluable and can never be replaced by a doctor with 100 patients to busy to tend to your child's needs past the norm.

I have heard so many horror stories about the fundo. When Meggy was 3 months old, they told us if she didn't have it, she would die before the age of 1. When she was 7 months old, they said she must have the fundo and G-tube, or she would die soon.

We did neither feeling, and followed our instincts to know that it wasn't right for our child. Meggy is 20 months, 19 pounds. She deals with a lot of pain, but she is growing, just slowly and not at rate the doctors like to see. She is growing at her own rate, not the standard. Now, we know that she has muscle coordination issues between her esophagus and stomach, one pushing up and one pushing down. The fundo could have been an absolute night mare.

So, while the fundo is a lifesaver for some, it is a nightmare for many others.

I would encourage you to:

1.) Call your insurance to see if what NICU is telling u is actually the

case. It may not be.

2.) They cannot deny you your child's records. You may have to pay for

them, but they cannot deny you. You may or may not be amazed

at what you find there. We found a lot in Meggy's NICU records

that no one ever bothered to tell us. It may also give you new

perspective on what is going on. 3.) Find out if they have a social worker at the hospital or if you have

another local hospital your children could be transferred to for

second opinion. I found out when Meggy was 1 that during her

NICU stay, I should have been given the choice to have her

transferred to the local children's hospital who would have

handled her care much much differently.

4.) If your child's doctors are not involving you in their care, be cautious.

One thing I learned to ask after I had foot surgery and the pain

became greater than it was before and never resolved, is that u may

not be given the full story unless you prompt a doctor to.

5.) Ask what your alternatives would be. Do you have other choices?

What are the other choices? What would the outcome be if you

let her try to manage on her own for a while? Is her life in enough

immediate danger to warrant rushing her into surgery now instead

of trying a few meds, or taking her to a GI specialist outside of the

hospital? Is there a possibility that she would have the same

outcome if they sent her home to try and feed in a less stressful

environment than to do the surgery that she may or may not need.

I am not against feeding tubes. Meggy did use NG for about 1 month and it certainly saves many children's lives, but I do believe in doing everything possible before resorting to surgery. Parenting is a scary world, but a rewarding one. Doctors do not always have your child's best interest at heart and sometimes it takes a few tries to get one you are comfortable with and one that will take proper care of your child.

Consider this, -her nurses deal with her only as long as she is in the hospital. They don't deal with the consequences of their actions good or bad. While most nurses that I have met are known are absolutely amazing and become like part of the family, they don't have the bonus of Mommie instinct. They don't have to go home and care for that child the rest of their lives if things go wrong.

Your journey is not an easy one. The decisions are not easy, but research research research. Even if a doctor tells you something, check for yourself.

When we were in the hospital some time ago, we were asking questions and lot of them. We researched everything for ourselves. One day the doctor exploded on us telling us our research must be wrong and he didn't know where we were getting our information. After he left, the nurse came in to say she heard the doctor yelling and wanted to give us a few tips.

She said at children's hospitals, the librarians may become your best friend. They help you to research what you need to know on the same websites and networks that doctors use. They helped us to work through the same diagnostic system doctors used. We documented all our research and had printouts for the doctor. In our local children's hospital, they use medlineplus.gov

Doctor's and nurses are not our enemies, and we have to count on them plenty. They are our partners in health so to speak, but we still have to look and read for ourselves.

Jan 11, 2009
lchang4
Very sad
Everyone, It's been a nightmare! We met with one neonatologist today and it was horrible. Basically, they (all the doctors) said Katherine's reflux is being controlled by Prilosec and is "recommending" a G-tube because she's not able to drink all 72cc within 30 minutes every 3 hours. They refuse to discharge her on NG tube because they said the risk for aspiration is too great for her level of reflux. He said my secondary insurance has refused to continue payment. The primary insurance is authorizing one week at a time. If we still refuse to go ahead with the G-tube, it may be that child protection services will get involved and the court will make that decision for us. I can't believe this is happening! I'm just so upset and outraged and helpless. I feel so threatened.
Jan 11, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
I am so sorry that you are dealing with all of this. Did you find a patient advocate? Most hospitals should have one. Obviously none of us have your baby's entire medical history but the doctors seem concerned for sure. Is it possible for someone to give you a second opinion or have you tried that already? Is Katherine gaining weight? FTT? Did they do the motility testing like Jessica mentioned? Humn.... Insurance issues are tricky, is there some one from your insurance co you can contact?
Check with your
doctor first!