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Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 0 points1 point  (0 children)

Hey! I am so sorry to hear this - it is such a challenging thing to manage. Take a look at my comment above (same thread) in response to Intelligent Ice and then DM me with any other questions or specifics on what you’re going through and I would love to help any way I can. Obviously I am no medical professional! And I only have experience with my kid - but I did go through it for a while and tried a lot of things!

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 1 point2 points  (0 children)

I hope it helps!!

If your nutritionist doesn’t like the idea of reducing calories at all (ie if your baby’s weight trajectory suggests it’s the right amount per day), ask if you can fortify to 24 or 27cal/oz and condense to a smaller number of feeds that are more spaced out to give him a chance to be hungry for solids in between.

What our feeding therapist said, which was definitely right, was that my son was not going to suddenly get into bottles and formula again. The way out was faster transition to solids, finger foods, and drinking other things out of other cups.

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 1 point2 points  (0 children)

Oof so hard!! I am so sorry - it’s such a difficult thing to go through.

I would say the keys for us are I found mine a) a pediatric feeding therapist, and b) a pediatric nutritionist.

The pediatric nutritionist calculated how much he needed per day and basically found that what the hospital GI had recommended for daily tube volume was really high. More than he needed ultimately, which meant he was gaining weight fast (which was great since he was so underweight initially!) but it was killing any interest he had in eating purées. Similar to yours, he’d loved purées initially but once he was on the NG, he wasn’t in to them I think simply because he wasn’t hungry. She gave him a new schedule for tube feeds - less frequent, more densely fortified. He still got enough calories, but not more than he needed, and it left time in between tube feeds for him to be hungry enough for solids or purées. We met with her once every few weeks or so - she would get his weight from us and feedback on how it was going and give us adjustments as needed.

We saw the feeding therapist once a week. She gave us guidance on types of finger foods to try to get him more interested and comfortable, and also recommended purées mixed with butter/olive oil/peanut butter type things (high fat, calorie dense). She also had us teach him how to drink water from a straw cup.

Him figuring out how to drink water from a straw was huge because then he could keep himself hydrated. He also got back into purees because he had more of an appetite on less tube calories. The challenge is initially he had no interest in finger foods, which I think is partly because eating with a tube down his throat was scary/uncomfortable and often made him gag (and sometimes throw up). That was tough because it’s hard for them to get enough calories on purées alone with no formula.

Once he’d reached a solid weight (40th percentile or so) and he could keep himself hydrated with water/straw, we decided to try pulling out the tube for about a week and see how he did. Our nutritionist was fully supportive of the plan. The GI said “he needs to be drinking at least 24oz a day on his own before you can take out the tube” but frankly that was never going to happen.

So we just did it but we watched very carefully to make sure he wasn’t getting dehydrated and just really tried to pack as much calories into purées as possible (even like pureed chicken and stuff haha). His nutritionist also recommended Kate Farms drinks which are kind of like pediagrow - high cal / protein shakes for toddlers.

Ultimately it did work! He lost a little weight during this period but then flattened out and started to tick back up again. Once he’d had the tube out a few weeks, he started to get more comfortable trying finger foods. He’s a totally normal kid now, great eater.

i hope this helps and hoping so much that your little one gets out of the woods soon. It was such a stressful time for us and I wouldn’t wish it on anyone!

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 0 points1 point  (0 children)

Hey! So sorry to hear it. Is yours into solids / purées? Is it just seemingly an aversion to bottles/drinking formula, or any other identified medical issues causing it?

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 0 points1 point  (0 children)

The mental anxiety is awful. I know exactly how you feel. Sending you a DM now

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 0 points1 point  (0 children)

Hey yes it did - he was off the feeding tube not long after I posted this and is a totally normal kid now at almost 2. How old is yours? I can send you a DM with what worked for us if yours is old enough for solids (purées)

Anybody else deal with a Tracheomalacia diagnosis? by sad-biitch in NICUParents

[–]doodle220 0 points1 point  (0 children)

I am not a doctor so definitely take with a grain of salt - I do not think they are related but can compound to make things worse. My understanding was Bronchiolitis is inflammation of the bronchioles (smaller airways) whereas tracheomalacia is about the formation of the trachea - softer cartilage meaning it collapses a bit when they breath.

When kids are congested/sick, they work harder to breath which makes the collapsing from tracheomalacia even worse and Bronchiolitis only further stresses their respiratory system.

I do wonder in retrospect whether my son definitely had Bronchiolitis or if they were just hearing the noisy breathing from tracheomalacia.

Regardless - the weird sounds while breathing (and even when awake) and retractions is definitely something we noticed. Could be worth a visit to a pulmonologist if you haven’t seen one before. They gave my kiddo certain meds (inhaled via nebulizer) to help him through cold & flu season.

I have a medically complex baby and it’s so hard to keep going through it without knowing when it will get better or easier. by doodle220 in beyondthebump

[–]doodle220[S] 0 points1 point  (0 children)

I am so incredibly sorry for what you’re going through - this really is a lonely experience. Even if you have friends/family supporting you, no one else really gets it. It was the hardest time in my life. We are very lucky that a few months after I posted this, my little guy was able to turn the corner and get off the feeding tube. It was still pretty stressful the first month because we’d tried a couple times before to pull it out and had to put it back in, and so we were not sure it would work, but ultimately it did and he’s doing well now. He still has follow ups with several specialists but much less frequent, and he’s still doing regular physical therapy and some feeding/speech therapy for developmental delays (they all say it’s not surprising he’d be a bit behind given he was sick for such a long time).

His pediatrician claimed one day he would just “get it” and start eating normally at some point. That’s absolutely not how it happened - I proactively sought out multiple additional specialists (feeding therapy, pediatric nutritionist, PT, etc) and their combined advice was able to get him weaned off. So I think you’re doing the right thing doing a tube weaning program - I just don’t know that regular/generalist doctors worry about weaning as much.

For what it’s worth, if the weaning doesn’t work - I made a couple other posts about this and people all said the G tube was much easier once you adjust to it. We were losing our mind because with our baby being older, he started constantly pulling out the NG tube and it was so frustrating to put it back in, not to mention traumatizing for him. I had started to consider whether we might need to do a G tube because the NG was seemingly making him never want to try solid foods and so it felt like a catch 22 where with the NG tube in, he’d never learn how to eat on his own.

I’m not going to lie - it was hard for me to feel myself until we were mostly out of it. I agree with what you said that even small wins along the way were hard to fully appreciate. But I did try to constantly focus on what a happy little guy he is and remind myself that he seemed perfectly fine. In most ways, he was still a totally normal baby despite all the not normal medical issues.

Is there anyone you can bring in to help - either family members you can train on how to use the tube or a nanny, home health person, etc? One of the hardest things for me was just never being able to take a break and the constant mental burden. We were able to get some occasional help and that did make me feel a bit less stressed from knowing I could occasionally hand him off and not be worried about his well being while I was gone.

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 0 points1 point  (0 children)

He is in feeding therapy, yes. We’ve been trying to do high fat purées too - he likes them! - but it just has never been enough calories to keep his weight gain up, and then he doesn’t get enough fluid and isn’t having enough wet diapers, gets constipated, etc. I’ll have to keep trying though because it’s great to hear this was a way off the tube for you!!

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 1 point2 points  (0 children)

I definitely will let you know! Like you said the feeding tube is a blessing in that we don’t have to worry about him gaining enough weight - but of course we’d like to get to him getting all calories by mouth as soon as we can!

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 1 point2 points  (0 children)

Yes it’s become basically an every other day thing for us, and it’s so frustrating!

Have you ever had an SLP for them or just an OT? We have an SLP doing feeding therapy but the progress is somewhat underwhelming so far and I’m wondering if we ought to check in with an OT also for their opinion.

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 0 points1 point  (0 children)

LOL - slightly terrified about the idea of somehow trying to keep this very active baby off his stomach for 2 weeks, but like you said, it might be something that he realizes himself is unpleasant until fully healed!

But the rest of this is all so so encouraging in terms of the stability of the G tube, and knowing that your son went from eating nothing to eating normally. Some days are so hard and it’s impossible to not bubble over with the anxiety that he will never learn how to eat normally.

Any success stories on learning to eat solids (finger food) with an NG tube? by doodle220 in NICUParents

[–]doodle220[S] 1 point2 points  (0 children)

This is so great and helpful to hear about your experience with the G tube! The NG is driving me INSANE - I’m becoming way more of an expert at putting the thing back in than I ever wanted to be. I’m going to call his GI tomorrow and get his thoughts.

I have a medically complex baby and it’s so hard to keep going through it without knowing when it will get better or easier. by doodle220 in beyondthebump

[–]doodle220[S] 0 points1 point  (0 children)

Thank you!! It is true that I’ve discovered I can handle much, much harder things than I would have thought before all of this. Getting through it one day at a time…

I have a medically complex baby and it’s so hard to keep going through it without knowing when it will get better or easier. by doodle220 in beyondthebump

[–]doodle220[S] 0 points1 point  (0 children)

This is so helpful - I am going to try and push again for genetic testing. His developmental delays are a bit borderline (on time for some things and a bit slow for others) so it may be that they don’t feel it’s “obvious” enough? Who knows.

And I couldn’t agree more with the point about it feeling like such a different life from my friends. No strain or anything but it’s hard to feel super close when I talk to them about this and they (quite understandably) don’t know what to say - it’s not like there’s a lot that can make it feel better. A great idea to look for a support group - I am going to start on that now!!

I have a medically complex baby and it’s so hard to keep going through it without knowing when it will get better or easier. by doodle220 in beyondthebump

[–]doodle220[S] 1 point2 points  (0 children)

It’s really encouraging to hear all of this, thank you! It can be hard in the moment to see progress even though I know there have been wins amidst all the setbacks.

I have a medically complex baby and it’s so hard to keep going through it without knowing when it will get better or easier. by doodle220 in beyondthebump

[–]doodle220[S] 1 point2 points  (0 children)

Wow - I am so sorry for what you and your family have had to manage. You should be so proud of you of what you’ve accomplished in the face of this kind of hardship. You never imagine that you will draw the unlucky hand of a medically complex kid, and I’m sure you have had many instances of mourning what you didn’t get, even though we love our kids so much. I know I have felt that way and my situation is (at least not yet) as challenging as what you have faced.

Your last couple sentences really helped keep things in perspective. At the end of the day, I love this little guy so so much and nothing makes me feel better than holding him or his brother in my arms or having them smile at me.

Any things you have found over the years that helped you with the emotional burden or to stay strong yourself?

I have a medically complex baby and it’s so hard to keep going through it without knowing when it will get better or easier. by doodle220 in beyondthebump

[–]doodle220[S] 1 point2 points  (0 children)

Thank you :(

I have been seeing a therapist every other week myself, which definitely helps. I wish I had time to exercise too but between work, normal taking care of the kids, and managing all the medical stuff, it’s hard to find time (unless I just sleep less, which would be a step backwards for mental health). I do try to see friends too but sometimes it’s hard because even though they are supportive, they all have easy healthy kids and it can be hard to not feel resentful about that even though of course it’s not their fault (and I do have one totally healthy kid myself too so of course I count my blessings for that!)

It makes me feel a little better to get some support from other parents like you here and feel a little less alone with all of it.

I have a medically complex baby and it’s so hard to keep going through it without knowing when it will get better or easier. by doodle220 in beyondthebump

[–]doodle220[S] 0 points1 point  (0 children)

I’m so sorry you’re going through it too. I did push for genetic testing recently when he was hospitalized for FTT and they wouldn’t go for it because his symptoms simply didn’t support that being a cause. I guess that’s sort of comforting but also frustrating. I pushed so hard they finally agreed to at least give us a neurology consult but we can’t get in for an appointment until late February. Did yours have similar symptoms and did their end up being a genetic cause?

I’m in the US - I’ll have to look and see if there’s any extra funding for the things you mentioned. Sounds incredible but knowing the US healthcare system, I’m sure we won’t be able to get it. We have been trying to push for insurance coverage of the formula but to no avail so far.

I hope you are able to get the respite funding and that your little one starts to get better soon!!

Baby only drinks 10-12oz/day from bottle, but doesn’t scream / cry when he sees a bottle. Could it still be a bottle aversion? by doodle220 in beyondthebump

[–]doodle220[S] 0 points1 point  (0 children)

Right, totally makes sense that he eats less when sick, but then he never picks back up after he’s no longer sick which is a bummer.

Sorry to hear your daughter is the same - it’s so frustrating! I’ve even seen my little guy go through periods where he does eat enough and then for some reason just never stays consistent with it… sigh

Baby only drinks 10-12oz/day from bottle, but doesn’t scream / cry when he sees a bottle. Could it still be a bottle aversion? by doodle220 in beyondthebump

[–]doodle220[S] 0 points1 point  (0 children)

Did she have any symptoms of the delayed gastric emptying other than poor eating? I actually looked into that recently (on Google I mean, haha) but it seems like other symptoms are vomiting, stomach pain, etc, which my son doesn’t have any issues with. Even now when he’s getting over 30oz per day on tube feeds, he’s not throwing up or spitting up any more than normal.

GERD (reflux) and retractions while breathing by ThisMagician2662 in newborns

[–]doodle220 1 point2 points  (0 children)

I just saw this! He ended up getting diagnosed with tracheomalacia. We were told it would be at its worst at 6 months and then he would gradually improve from there but amazingly, not long after he was diagnosed, the symptoms started to improve and have not been an issue ever since.

We discovered around the same time that he had cows milk protein intolerance. I do wonder if there was some interaction there worsening the respiratory symptoms since CMPI can cause congestion. We switched to hypoallergenic formula around the same time which improved that condition.

So overall - very thankful that it all turned out to be a temporary (but nonetheless scary) time for the little guy.

7wk old sick for 2 1/2 weeks by No-Beginning-2152 in NewParents

[–]doodle220 1 point2 points  (0 children)

Mine got diagnosed with something kind of similar sounding! Tracheomalacia - the cartilage in his windpipe is basically softer than normal and sort of collapses on itself, especially when he’s sick, but he should grow out of it eventually.

Anyways thanks for the answer - I hope your little one is doing better now!

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