Feeding Tube?

zoeyandsummersmom · February 2012

DD is not eating enough because of her reflux. We have her on elecare and bm, but she is not taking enough at all. On a good day she maxes out at about 12 oz. The gastro and the pedi are now talking about putting in a tube for night feedings. Has anyone had to do this?

I want the best for my daughter but the tube brings me back to our days in the NICU and would like to have a clear plan with milestones to determine the length of time we do feedings through the tube.

Would love any experiences others have had with having to feed via tube at home (either NG or G).

ijustcantthinkrightnow · February 2012

Hi!

I am so sorry to hear your DD is struggling so much.

Our DD is G-tube fed, and has been since we came home from the NICU. She had severe reflux and never really learned how to bottle feed (she also has a cleft palate so that plays into it a little bit as well). The doctors highly encouraged us to place a G-tube and perform a Nissin Fundo to help prevent the reflux. An NG tube was not an option for us.

I won't lie the first few months post op I hated her g-tube and questioned why we went thru with it. To be honest, part of this was just denial that she actually needed this in order to survive and thrive and part just learning how to manage it. Now things have gotten much better and we are much more comfortable with her G-tube/button, I don't worry about her button coming out, I've changed it a few times on my own and over all it's just beceom part of our lives. I am so glad we did it. I had very high hopes that she was just going to start eating one day and that would be it, but it's not worked out this way for us.

She received feeding therapy once a week, and both our therapist and GI are hopeful that she should be able to have her feeding tube removed by age two. By that time her cleft palate will also be repaired so that should also make things much easier for us.

It sounds like you may just be doing continuous feeds over night to make up for what she isn't getting during the day... We did a combination of bolus during the day and continuous at night until we were eventually able to compress her feeds to all bolus during the day, again that's what worked for us and for DD.

There are a few other moms from this board with older preemies and feeding tubes, I am sure they'll chime in and share their expeirence as well.

There is an article on the Preemie Resource Blog regarding feeding tubes and please feel free to email me if you want to talk furthur or have any specific questions ( omfootballchick at yahoo dot com). Also you may want to check out Feeding Tube Awareness, <--- They are also on FB as well. They cover a lot of information and offer other expeirences as well.

HTH!

lwmooney87 · February 2012

Sorry I don't have any advice but bhilyer's LO just had a tube placed for night feedings. Maybe she will be around to answer some of your questions. I think he's doing really well with it.

ETA: Have you tried giving up the BM and just giving her the Elecare for like a week? My DD has reflux and I'm assuming a milk protein allergy. We started by mixing her BM with Alimentum and that didn't help...when we completely stopped BM and just gave her Alimentum, it was a miracle. Before I could barely get 14 ounces in her a day and literally within less than 24 hours of the Alimentum she was eating double that.

Medtwin · February 2012

My DD got a gtube & nissin done while we were still in nicu on 11/7/11.. and both me & my dh weren't very sure about it.. well, I'm GLAD we did it.. my dd is now 10lbs.... & doing great!! I know the bottle feeding or sippy cup will come eventually, but for now the g-tube works & she is growing.

My DD is on bolus feeds during day & night.. she takes reflux meds too..we used to do continous at night, but found that she gets full & more irritable when she's full.. sooo we get up for bolus & it works.

My only recommendation is..if it's to help your LO grow & gain some weight.. like everything else, it's not forever.. and it's a good step in that right direction!!

Good luck.. we're here to chat with you.. the PP's are all good resources.. I asked ALOT of ?'s from these board members!! I'm avail to chat as well.. send me an email thru my blog.. www.babyblueberriespacella.blogspot.com

ChickensFive · February 2012

My daughter has a NG tube. She has been on continious feeds since Oct and we are just now working to get her off of it which will be a slow process. She came home from the NICU with it (though not on continous feeds at that point) because bottle feeding wasthe only thing keeping her there. She ended up in the PICU a month latar due to lung/heart issues and was vented for a few weeks which caused her an adversion to anything in her mouth and thats what started her on continious feeds. When she was in the PICU for her lung/heart issues the Dr said that had she not had the feeding tube she would have been in worse shape because she would not have been eating (she stopped taking a bottle completely a couple weeks before she went to the PICU). So the feeding, while not idel,l can be an assest to ur LOs thriving, obviously. She does like to pull it out all the time so that makes for a fun day. Good luck!

kaylaaimee · February 2012

I had to put an NG tube down for night feedings for Scarlette for about a month. It really wasn't that bad. I learned to insert it and it was easier than I thought it would be. The hardest part was keeping her from pulling it out

Want a personalized experience?

Feeding Tube?

Re: Feeding Tube?

Choose Another Board

Search Boards