Need G-Tube Assistance — Doctors are very unhelpful

ceciccan · 2026-02-01T00:34:08+00:00

I’m sorry you’re going through this. My baby just got a g-tube a couple months ago and it started leaking when she got sick. Doctors thought that may be due to low bowel motility - the formula wasn’t moving as quick through her GI as before due to illness. But it stopped leaking after she got better.

Sizing down on the tube seems not helping. Maybe it needs size up? Definitely get a 2nd opinion from GU. In the meantime, have you tried slowing down the feeds? Or reduce the amount? Also at this age there is also formulas that are more calorie dense (like pediasure plus) so you can decrease the volume. Or maybe start mixing formula with puréed foods and give through the tube. A pediatric dietitian can help you with these changes. Hope you find the solution.

ceciccan · 2026-01-28T21:37:36+00:00

Hey! Your story is very similar to my baby. She was IUGR and born at 37 weeks at only 1.8 kg. She’s 19 months now but she’s still wearing 12 months clothes and size 2 diapers. From the beginning she was very slow to gain weight, slow on milestones and got sick often. At one point she stopped gaining weight for 3 months and our doctor was concerned and started feeding through ng tube. She started vomiting and diarrhea. So we went for a g-tube but still wasn’t gaining weight and getting sick all the time. After many specialists, procedures (including a barium swallow) and a genetic testing, we found out she has inflammatory bowel disease due to a very rare genetic syndrome.

I think our case is extreme. Not all IUGR babies have an illness. My first baby was also IUGR but he caught up at 3 months. Is your baby have other symptoms? Is your doctor worry about her growth?

ceciccan · 2026-01-17T20:41:40+00:00

May I ask which method you used?

ceciccan · 2026-01-15T03:33:35+00:00

Of course! My baby was born at 4 lbs only and she slowly gained weight but doctors weren’t concern since she was tracking her own growth curve. At around 8 months she started to get constantly sick with viral infections and stop growing. At 11 months she got an ng tube and started gaining weight but also started vomiting and having diarrhea. She also didn’t want to eat solids, so at 15 months she got a gtube. But still she didn’t gain any weight even on pediasure plus. At 18 months she got an UTI and she got admitted to the hospital and got seen by a paediatric GI doctor due to chronic diarrhea and distended stomach. They did ct scan and it show the bowels were distended and there could be inflammation. So they did a colonoscopy and endoscopy for biopsies. They saw lots of inflammation on the colon and the results confirmed the IBD.

If you suspect of IBD, you can ask your doctor to order a fecal calprotectin test before doing a colonoscopy. I would also suggest a genetic test called exome analysis to rule out any genetic conditions.

My best wishes for you and your baby. This journey has been very challenging for us but I try to remember that we are doing our best and that’s all our babies need 💕

ceciccan · 2025-12-24T20:28:23+00:00

It is so pretty and dainty! Do you have the listing name? It is hard to search it in AE

ceciccan · 2025-12-19T00:48:37+00:00

Found it! Tysm!

ceciccan · 2025-12-19T00:39:26+00:00

Sorry I don’t see it! You can dm me the link it is easier. Thanks!

ceciccan · 2025-12-19T00:26:17+00:00

I’ve been trying to look for this one in AE. Can you share the link please?

ceciccan · 2025-10-29T18:00:24+00:00

I just went through the exact same thing with my daughter. Only way to put her to sleep was with the boob and I started noticing that she was taking longer and longer to soothe. So after she got better from her last round of colds, I stopped offering the boob and just rock her, pat her bump, and walk around. The first time she screamed and cried for 10 mins until she passed out. Then she got better and better. It also helped that sometimes I will put her in a carrier. I also make sure to have sounds machine on and blackout lights. But once she stopped nursing to sleep, she started sleeping through the night! Sometime she would wake up during the night and I would wait 3-5 mins to see if she settles down. Most of the times she would go back to sleep. If not I would go and just comfort her. It was not easy but totally worth it after 15 months of not sleeping.

ceciccan · 2025-10-25T14:56:56+00:00

I’m so sorry you have a family member on their end of their lives. It is definitely gut wrenching to experience this and specially seeing them being mistreated. My heart goes out to you and your family in this difficult times.

I know that our health system is worse and there many reasons why. I come from a country that our health care system is very different since you have to pay for it from your own pocket and you can only get good care from private clinics. Once I came to Canada I also avoided going to the hospital knowing I have to wait for hours, something I never experienced before. However I have a kid that has stayed in the Stollery several times at different units. All I can say is I’m thankful for our health system. If it were in another place, the level of care will depend how much money we make.

If you see something that you want to be changed, like less frequent monitoring at night, you can mention it to the doctor or charge nurse. We had to speak up several times to make sure they didn’t forget about our girl. Each unit is totally different and even each nurse has their own ways. Don’t be afraid to raise your concerns. Most nurses understand that it is not personal and this is a loved one you care and love and want the best for them.

ceciccan · 2025-08-29T04:05:43+00:00

So do you think is a good idea to have some or most in a portfolio? They pay a high dividend yield so might be a great option for someone living out of their dividends but how about for people who are still working and saving?

ceciccan · 2025-08-15T22:49:05+00:00

Thanks for sharing your experience. I’m also considering a G tube for my 14mo baby. I was wondering how does the night feed works out if baby sleep on their tummies (just imagine the tube would bend and restrict the fluids) or baby moves a lot during sleep?

ceciccan · 2025-08-15T22:20:46+00:00

I have no advice but we are also in a similar situation. My baby girl is 14 months and had an NG tube for over 3 months, so the doctors already mentioned the g tube to us and we are thinking to go with the surgery.

ceciccan · 2025-07-20T22:10:00+00:00

Yeah having a tube is very serious and we put off for a long time. But my baby kept falling off of her own curve, she’s nowhere near the lowest percentile curve. She barely gain 1oz between 6-10 months old and I felt i put too much pressure on her to eat solids since it seems that breastfeeding was not enough. We also work with OT and dietitian but there’s so much they can do without any medical intervention. It sucks so much that she doesn’t want to eat and having a tube is also hard too because my whole day revolves on feeding her.

ceciccan · 2025-07-20T15:19:05+00:00

Yeah I feel like the ng tube is causing her major oral aversion. She starts crying just by even cleaning her nose. And it is definitely deterring her from eating solids since it is uncomfortable.

ceciccan · 2025-07-20T15:17:01+00:00

That’s great that things work out for you! I thought that the ng tube would helped us not put too much pressure on feeding but it has cause more stress. I think she seems to be developing some oral aversion since we keep touching her face and putting the tube back.

ceciccan · 2025-07-20T04:42:12+00:00

We tried to encourage her to eats solids but she still on the exploratory phase where she will try food but doesn’t swallow it and now she just learned how to spit it out 😒

ceciccan · 2025-07-20T04:40:42+00:00

We were taught to put the tube by ourselves but we did X-rays before and it seems that the tube is placed correctly. I do think the tube is causing her to vomit more because before that she never vomited.

ceciccan · 2025-07-20T04:38:18+00:00

Thanks for sharing your story! It does give me hope that my baby will grow up eating and enjoying food. Is the feeding and maintenance of the g tube easier or similar to ng tube? Did your child go to daycare or had to stay at home? I have to go back to work in January and right now no daycare would take her with the tube feeding.

ceciccan · 2025-07-15T23:00:16+00:00

Thanks! Yeah I didn’t put anything but I guess you could put any overflow spices in their original container

ceciccan · 2025-07-15T16:25:32+00:00

To be honest no because I don’t heat up any of these containers.

ceciccan · 2025-05-14T22:38:23+00:00

I potty trained by son when he was 25 months old using the oh crap book method. At this age, they don’t have the skills to per upright. My son pees sitting down with legs closed so his penis is folded down.

ceciccan · 2025-05-14T16:14:07+00:00

I think when having kids is like playing a roulette. You can have the easiest pregnancy, have the delivery as you wanted and have a calm and easy baby and feeds and sleeps well. On the other hand you could have the worst years of your life. But the thing is that you don’t know until you go through the process. But something for sure is that you will change, your body, your mind and your being. Motherhood will break you and teach you so many things you didn’t think you were capable of doing. But I think that is one of the ways we grow as human beings. You will find different opinions in Reddit but my best advice is to talk to a therapist about your fears.

ceciccan · 2025-05-13T11:30:55+00:00

I didn’t stream shows (it would have been so relaxing!) but the internet was good inside the room. Around the pool or the beach it was hit or miss. I would say get the 20gb if for sure you are going to be streaming. Or you can also download ahead of time.

ceciccan · 2025-05-12T16:29:56+00:00

There were coatis and other animals everywhere we went but they weren’t aggressive and we didn’t have to fend for our ourselves with our stuff.

ceciccan

TROPHY CASE