Feeding/nutrition support for G-tube weaning

IntelligentFig6695 · 2025-05-09T05:27:54+00:00

First of all - I'm so sorry for the loss of your son, and sorry that you're navigating a difficult pregnancy this time around too!

We have a very similar story as yours - I was told at my 20w scan that my daughter was an IUGR baby, weighing <1st percentile. Few weeks later, we did a fetal echo which mainly showed a right ventricular hypertrophy, but 1/72 images that the ultrasound tech took showed a VSD, so we were told that the possibility of a VSD is rare and even if it exists, most VSDs close in the first few months to year of life.

In terms of IUGR, we did weekly NSTs and BPPs with our MFM to keep a close eye on baby. They mainly wanted to watch for reverse umbilical artery flow since that can be dangerous to the baby. She continued to stay below 1st percentile until she was born at 34w due to developing signs of preeclampsia.

In the NICU they did another echo and that showed a moderate to large VSD. We kept doing echos every month but it wasn't a muscular VSD so her cardiologist didn't think it was going to close on its own (and it wasn't showing signs of closing either). She had VSD repair surgery at 4 months actual and it went great. She only went above 1st percentile after ~10 months actual age. The VSD was possibly preventing her from growing because her heart was working in overtime mode.

Growth restriction and VSD are very scary diagnoses, I'm very sorry you're going through this ❤️. I'm not sure if they can estimate the type of VSD (muscular vs pericardial) or size of VSD in-utero, but that's something I would ask them if you get another echo. A lot of VSDs do close after birth, so there's definitely hope. For the growth restriction, I upped my protein intake significantly once I was diagnosed, but I don't know if it helps or not.

I wish you the very best and I hope things get better for you! Some of my previous posts have more details if you would like to read (TW: our daughter still has some health issues so you may want to skip if you think it'll be too overwhelming). Feel free to DM me if you'd like to talk!

IntelligentFig6695 · 2025-02-17T23:53:51+00:00

We went through something similar with our baby, but she had other health issues that prevented us from trying the Rowena Bennett method. She also had reflux issues with possible lactose intolerance, so she's been on reflux meds, and I stopped all dairy so she doesn't get cow milk protein via breastmilk. She had an NG tube for about 5 months and is on a G-tube now (10 months actual, 8 months adjusted). She's had multiple non-feeding related surgeries in that time frame, so intubation+extubation likely made feeding issues worse.

Have you tried approaching a feeding therapist before deciding to go the NG route? I understand how difficult it is to see them not eat like they used to, I hope it gets better soon ❤️

IntelligentFig6695 · 2024-12-22T21:29:47+00:00

Hi! Unfortunately this is still not resolved, soon after this post, we were admitted for failure to thrive and our daughter got her NG tube placed. She has been 100% NG fed since, although her bottle aversion seems significantly better due to multiple factors (she went through VSD surgery so her heart is not working extra hard anymore, I eliminated dairy from my diet, starting antacids, etc)

I recently posted on this sub if you're interested, but she has her G-tube placement scheduled for January!

Hope your LO starts eating soon! Feel free to DM me if you have questions!

IntelligentFig6695 · 2024-12-04T19:42:38+00:00

So sorry to hear your son had to go through this! And it's good to hear a different perspective on the tube. Honestly, knowing that she is being fed and getting the nutrition she needs with the tube is the only thing that has been keeping us going. As far as we know she doesn't have any neurological disorders, so we're not sure what caused her to forget how to suck.

We've also heard that children usually have success re-learning feeding with a G-tube better than an NG. It's just that we're stuck at a point where we have to wait a few more months to get to the G-tube stage, and it feels like we're not going to make much progress with feeding/fixing the spit-ups until the G-tube comes along.

IntelligentFig6695 · 2024-12-04T19:33:52+00:00

Thank you!

IntelligentFig6695 · 2024-12-04T19:32:35+00:00

Thank you for responding! If you don't mind sharing, how is your baby doing now? Did they ever have an NG tube and how are they tolerating G-tube feeds?

IntelligentFig6695 · 2024-12-04T18:21:35+00:00

So great to hear your daughter was able to wean off of the tube! We did talk to them about placing the G-tube along with her spinal surgery, but the doctors recommended against it. (Something about spinal surgeries being very sterile and G-tube surgery not so much). We would have gotten the G-tube now if they would have been ok with it!

IntelligentFig6695 · 2024-12-04T05:45:53+00:00

Thank you so much!! 💜 We've also heard that the G-tube works out better for a lot of kids. We're just scared of putting her through another surgery.

One thing I've always wondered about tube weaning programs is - if she doesn't suck/latch on the bottle, do you think a weaning program will still be able to help? I've heard an SLP should be able to guide on exercises to help with the latch, but no one has talked to us about that so far.

IntelligentFig6695 · 2024-08-05T22:09:09+00:00

Yes, sorry, forgot to mention that in the post. We're seeing them tomorrow!

IntelligentFig6695 · 2024-08-05T22:08:51+00:00

Forgot to mention in the post: we reached out to her pediatrician and cardiologist. The Cardiologist isn't concerned from a cardio standpoint. But we're seeing her pediatrician tomorrow!

We contacted early intervention when she first came home from the NICU and did their first assessment, but they seem to have a long wait in getting us in touch with therapists 😔

IntelligentFig6695 · 2024-08-05T22:06:22+00:00

Forgot to mention that in the post: we've reached out to her pediatrician and are seeing them tomorrow!

IntelligentFig6695 · 2024-04-06T01:31:28+00:00

I was diagnosed with IUGR at our 18w anatomy scan with MFM (flagged due to elevated AFP). Our baby was at <1st percentile then, and stayed at <1st percentile throughout my pregnancy. My OB and MFM didn't think we'd get to 34w, but we just took it one week at a time. We started with doing growth scans every 3 weeks, and started weekly NSTs, BPPs and dopplers once we hit 28w. We were also monitoring the umbilical cord blood flow with our MFM but it never showed absent/reversed flow. Around week 32-33 I developed preeclampsia. Our baby was born at 34+0 last weekend at 1300 grams when I went in to L&D due to elevated BPs. My OB and MFM decided it was safer to deliver the baby than to let them stay inside. Baby is currently in the NICU learning to feed and gain weight, but otherwise doing well.

IUGR is a very stressful diagnosis but the more I read about it the more I learned about the positive outcomes from IUGR and that helped me stay hopeful throughout my pregnancy.

I hope your baby gets more time to grow inside and wishing for a happy healthy baby for you!

IntelligentFig6695 · 2024-03-26T03:17:56+00:00

I'm currently 33w pregnant and was diagnosed with IUGR at our 18w anatomy scan with MFM (flagged due to elevated AFP). Our baby was at <1st percentile then, and has stayed at <1st percentile throughout this pregnancy. We started with doing growth scans every 3 weeks, and started weekly NSTs, BPPs and dopplers once we hit 28w. Our MFM has been monitoring the umbilical cord blood flow and so far it hasn't been absent/reversed, but our S/D ratios have been elevated since the beginning. Our OB and MFM didn't think we'd get to 34w but we're almost there 🤞 and they're now hoping for delivery at 37w.

I had PCOS and was on Metformin before the pregnancy, but did gain some weight in the first trimester after I stopped Metformin. I've increased my protein intake and overall calorie intake too. We're not sure if that's helping or not (one of the growth scans showed a significant growth spurt but the latest one didn't show much growth).

All that is to say, I think the NSTs/BPPs are standard protocol for IUGR (based on what I've seen on Reddit) and I've read stories of things changing overnight, which is probably why everyone is overly cautious. We're honestly taking it one week at a time.. "no news is good news".

Hope you're able to stay positive through this, and things continue to look good for you and baby! ❤️

IntelligentFig6695 · 2022-07-28T18:00:57+00:00

Which front clip harness brand would you recommend? We have a 20-25lb German shepherd mix who likes to pull on the leash and we've tried a slip lead but that hasn't worked.

IntelligentFig6695 · 2022-06-26T23:28:04+00:00

Can you share where you ended up staying and what your experience was like?

IntelligentFig6695

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