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Failure to thrive NG tube to a G tube or ?

jessica2006 - 06:34pm Jan 27, 2007 EST

My name is Stephanie, I am the mother of baby Jessica. I have posted things about Jessica and her kidney and Heart conditions before and the fact that she also has failure to thrive. It is the failure to thrive that I am typing today. We got the call yesterday that they want to go ahead and put her back in the hospital on Tuesday and run some more studies and possibly place an G tube or another form of a tube that would go into her stomach. They said that her having the NG tube is not doing everything that it needs to do and she still is not gaining the weight that she needs to gain. Jessica does tolerate taking the bottle but only can take 2 ounces at a time or 60 ml by bottle 2 maybe 3 times a day. They want her to gain 30grams a day or 1 ounce a day minimal. She is on 30 cal formula which is a combination of alimentum, polycose and microlipid. She got an upper GI and that came back ok besides some reflux around her NG tube. The problem that Jessica has is that she can tolerate only so much volume and if we push her to much she throws up. I am so concerned about her. I am not sure what to do. She does ok with the NG tube only pulls it out maybe once a week. Before almost everyday but found a taping trick that works so that helped. I just need some input and also the docs say that she will gain weight better with a G tube or another tube that goes into her stomach than with the NG tube is this common or what . Jessica has the heart and Kidney conditions already with a kidney surgery already schedule for April I hate to put her through more surgeries than she has to go through. Help I dont know what to do. Thank you in advance for all your input.

GradyGabbyAbby - Jan 28, 2007 4:46 pm (#1 Total: 17)

*One miracle with us,Gradon is now 10 years old. His sisters Gabrielle Lynn & Abigail Marie, watch over us in heaven.*

Thank you for your update on Jessica. Unfortunately, I do not have any personal experience with your childs condition, but will forward your post to other members of SHARE that may be able to offer some support. You may also want to ck out in our parent to parent section (located above) "medical conditions of our children." There you may find other parents that have walked in your shoes and give you some additional information that may be of help.
I will be keeping your precious Jessica in my thoughts and prayers and hoping that she will continue to thrive.
Best wishes,
Colleen

2 here 2 in Heaven - Jan 29, 2007 3:38 am (#2 Total: 17)

Surviving 26 week triplet...2 angels, & a 36 week singleton.

Hi Stephanie. Thank you for again describing Jessica's conditions so well for us.

I can imagine how frustrating it is to be looking at another surgery for your daughter. If your doctors are recommending a G tube, I would very much consider their professional opinions. While it is hard to think of a surgery before the one in April, it may be the best thing. Failure to thrive is something not to be taken lightly, if a G tube is what is needed for her to gain more weight at a quicker pace, then it is what you probably need to do.

My son had to remain on oxygen until he was 15 months, in large part because when it was removed, it worked to hard to breath...thus burning too many calories. Even though he seemed to be eating fine on his own, we couldn't risk discontinuing the oxygen because his weight gain was too important. Today he is almost 4 and still weighs 27.8 pounds. Trust me when I say I would do anything for him to gain weight.

-Shonda

jenmccarter - Jan 29, 2007 5:23 am (#3 Total: 17)

Mom of 26 week blessings jackson and josephine

I know this is hard

I have been in your shoes and didn't know what to do. My twins were born at 26 weeks and my daughter developed kidney and liver problems in the NICU. We put off a feeding tube as long as we could, but she would not gain. Because of her enlarged liver she could not have a G-tube, instead she had a J-tube which runs into the intestens not the stomach. This was the best thing we ever did. She started gaining and growing much faster than her brother. The hard part was not giving up on the oral feeding. She only had the tube for 8 months and because we kept oral feeding her the older she got the more interested she became in feeding. They are 2 now and she is the better eater and weights more. Let me know how it goes. -jen

Replies to this message

jessica2006 (Jan 29, 2007 5:28 pm)

jessica2006 - Jan 29, 2007 5:28 pm (#4 Total: 17)

Replying to: jenmccarter (Jan 29, 2007 5:23 am)

I know this is hard: I have been in your shoes and didn't know what to do. My twins were...

Re: I know this is hard

Jen,

Thank You for your reply. It is nice to have the support from everyone and also the support from people that have walked in the same or similar shoes. What a blessing your little ones must be. Congratulations. How is your daughters liver and kidney doing know? What was her diagnosis for her kidney? I am sure that it has been a long road already but I wish your family and your twins the very best and for your twins continued growth and good health. Hey keep in touch and let me know how they are doing.
Hey how was the recovery of her J- tube placement? That is one of the other options that they are seriously considering. Hey also do you remember the volume that they wanted your twins to get each day? the docs want Jessica to get a minimum of 600 ml or 20 ounces a day. Is that normal?

Stephanie

[Last Editor: jessica2006, Jan 29, 2007 9:31 am. Total Edits: 1]

jenmccarter - Jan 30, 2007 2:09 am (#5 Total: 17)

Mom of 26 week blessings jackson and josephine

Stephanie, Thank you for caring. They are doing better now but we still have feeding problems. I am lucky if I can get 24oz a day in each, and very little solids at all. I try not to stress or they are going to have a crazy mother. the feeding specialist we see wants them to have 1100 calories daily

. Josie had a fungal blood infection that caused her kidneys to fail and the medicine they gave her to help caused her liver to become 4 times its normal size. That is why the J-tube there was no room in her abdomen for her stomach to have any food. She was on 21 hour continuous feeds when she came home, it was one of the worst things we went through. She had this when she was not very active and she pulled it out twice, I don't recommend the J-tube unless the feeds will be limited and that is usually not the case. She pulled the tube out Nov. 05 and because putting it back should be considered cruel and unusual torture I wouldn't let them put it back unless they took her back to surg. She didn't eat much at first but now she is my better eater. Please let me know how yall are doing and what you decide to do. It is always nice to know that we are not alone in a world filled with 40lb 2 year olds .

jessica2006 - Jan 30, 2007 7:38 am (#6 Total: 17)

Hello Jen,

well we are going to have to wait a few more days to find out what the new plan is going to be. Thanks to my husband everyone has colds my three year old son has it the worst so far with a double ear infection and bronchitis and my daughter Emily just the normal head cold and Jessica well she is just beginning to get the cold she has been more congested to day and starting to cough more than normal so we will have to see. When I called her doctor this am she said that she will talk to Jesscia's team of doctors and make a new plan and give her time to see what direction her cold is going to go and that we were just to see her GI doc on Wednesday and she will let me know what the new plan is. At least they are being smart and giving Jessica time and finding out if her cold will stay the same or get worse and give some time to recover and give me some sanity time

sorry for going on and on just a little bit frustrated with everything today. I wasn't looking forward to going to the hospital but I was looking forward to maybe getting more answers and going on to the next step.
Thank you for your continued responses. Hey if you want to talk some more sometime please feel free to email me emily33198@yahoo.com Thank You,

Stephanie

Mariea - Feb 1, 2007 9:51 pm (#7 Total: 17)

Good to hear you

I am a mother of a 1 lb. 12 oz 25 weeker and this is my first post. I am tearful reading these messages. I have been doing feedings alone for over a year. My son is now 13 months. I have been struggling with feeding ever since he was in the NICU. When he started teething things got really bad, Failure to Thrive. He had a NG tube for 6 weeks and now we are trying to do all feeds orally with Pediasure. He takes no solids. We were averaging 22-23 oz. a day, but today it is early evening and he has only taken 6 oz! I AM GOING TO GO CRAZY!!!!!! He is slowly refusing to eat again. I cannot stand the idea of putting that NG tube in and out again. My doc. asked if we want to meet the surgeon and discuss the G-tube. My son is over 18. 5 pounds at 10 months corrected?

jessica2006 - Feb 2, 2007 2:25 am (#8 Total: 17)

Mariea,

Hello and Welcome!
I think that meeting with the surgeon and exploring your options is not a bad idea. I am finding out that being equiped with as much information as possible really helps in many ways and also can give you a chance to ask some questions that you may not have thought of before hand. It has taken me some time to relize this myself. This website is so good to be able to come here and share with others it has really helped me. A lot of friendships can also be developed here with others that can relate to your situation or just be there for support. I wish you the best. If yopu need someone to talk to feel free to email me.

Stephanie

Amazing Alexis' Mommy - Feb 3, 2007 5:06 am (#9 Total: 17)

G-tube

Stephanie and Mariea:

My daughter, Alexis has a G-tube and has since she left the NICU 2 years ago and I would strongly reccommend it. Alexis didn't bottle at all and so we didn't have much of a choice. We were skeptical about getting a G-tube because we did want her to learn how to eat and with a lot of therapy, she eats anything and everything now. She only has her G-tube for continued growth and we hope to have it out by her 3rd birthday.

If the surgery is what you are worried about, it is a fairly simple surgery and quick recovery. When it is time for the g-tube to come out, they can just do that in the office without surgery. It is a worry, I know, but the G-tube is well worth it!

Amy

eroddy - Feb 3, 2007 11:06 pm (#10 Total: 17)

Taping Trick?

I wish you the best of luck with everything......
I am curious about your taping trick??

The tape just does not stay on my son's face......and I hate puttin it in and out. I would love to hear your suggestion.

momglenda - Jul 10, 2007 6:48 am (#11 Total: 17)

Want to know your taping trick

Hi Stephanie,

How is Jessica? I am a new member and just read your story. Thank you very much for sharing. My son, Max, was born in Singapore at 30 weeks with severe IUGR and Inspissated Meconuim Syndrome, which required surgery 4 days after he was born. Max stayed in the hospital for 5 months and was sent home with NG tube. He did really good eating for about a month and then for the last 3 weeks he just doesn't want to eat. We don't like the tube because he keeps pulling it out and he also vomits sometimes. The doctors really want him to gain weight but is has been really hard. I really would like to know what is your taping trick. This may help us deal with the tube better.

Thank you,

tjmarcum - Aug 16, 2007 4:08 pm (#12 Total: 17)

Right there with you

My 24 weeker had the exact same problems. She's now 10 months corrected. I refused the G tube and just kept gradually increasing the amount in her NG. We also got her on Reglan (helps empty stomach) and Zantac and that helped. She now gets 2 bolises of 8 ounces each over an hour or so at night. Originally we couldn't go over 30mls!!! Just be patient, try medicines, and increase slowly and you will eventually see results. We also REALLY pushed the bottle and fed her the 45 mls she would take every 2 hours. Just some thoughts but if you need moral support please let me know as I've been there and am now having my own issues with solids.

Amity - Aug 28, 2007 10:39 pm (#13 Total: 17)

I went through the exact same thing. But I wasnt offered he choice of Addison getting the Gtube or not. Even with her g-tube she was still on 15lbs at 15mnth. One thing that the doctors did have me start giving her is Pediasure. It was working very well.

One more thing I don't want to scare anyone just to warn mothers. My daughter passed away on 08/20/07. She had a g-tube with continous feeds at night. When you have continious feeds(which from what I know they have alot of failure to thrive babies do) you are given what is called a kangaroo bag that holds the formula, the bad has tubing which connects to the mic-key button. The tubing CAN strangle a baby. It happend to my Addie. If you child is rolling PLEASE BE CAREFUL. Make sure to hook up a pulse OX monitor. I didn't have one. No one ever told me we needed one.

Replies to this message

jessica2006 (Aug 29, 2007 12:03 am)

McTriplet Mommy (Aug 29, 2007 12:13 am)

jessica2006 - Aug 29, 2007 12:03 am (#14 Total: 17)

Replying to: Amity (Aug 28, 2007 10:39 pm)

I went through the exact same thing. But I wasnt offered he choice of Addison getting the Gtube or not....

Re: Failure to thrive NG tube to a G tube or ?

Amity,

I am so sorry about the loss of your daughter Addison. I cant imagine what you are feeling or going through right now. But I hope that you know that there are many parents out there that are very thankful and greatful for you sharing your story to us and I am sure even saving other childrens lives. I simply think that some things get over looked or not thought about as much as they should be especially in circumstances such as this. I pray that you find comfort and peace in this time of grieving and that the loss of your daughter draws more awareness to others and saves other childrens lives. I think it is so hard for a parent to have something that could potentially save there childs live actually take it. And even though there are man children that must have continuous feeds your story will absolutely save and draw awareness to others.

Stephanie

McTriplet Mommy - Aug 29, 2007 12:13 am (#15 Total: 17)

Lorne (23 wk), Isaac (26 wk) and Sullivan (26 wk) - my four-year miracles!!

Replying to: Amity (Aug 28, 2007 10:39 pm)

I went through the exact same thing. But I wasnt offered he choice of Addison getting the Gtube or not....

Re: Failure to thrive NG tube to a G tube or ?

I am so sorry about the loss of your sweet Addison. When Lorne was on oxygen - I was terrified of something like this happening. I am so sorry that you had this experience. I hope that your warning with help someone else.

Take care,
kara

BearHugz - Sep 2, 2007 4:47 am (#16 Total: 17)

My Quinnie The Pooh

Amity, I'm so sorry about what has happened. I took Quinn off the tube feedings a while ago. Not because of this, but because she kept throwing up and was choking on vomit at night and I came in to a baby with blue hands and feet one too many times. But I was so afraid of this happening to Quinn. I came in there one morning and she had the tubing around her neck and it was a little tight, but not enough to choke her. I was wondering if you would allow me to post this in another forum to help spread awareness that kids who are on continuous feeds at night should have a pulse ox machine.

I'm thinking about you in this very difficult time.

-Sarah

BearHugz - Sep 3, 2007 5:58 am (#17 Total: 17)

My Quinnie The Pooh

Just coming back in to reread this.... I meant that I took Quinn off the night tube feedings. Left out a word, sorry. Quinn is tube fed everyday.

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