Infant feeding tube experiences?

[Anonymous]

No experience with a feeding tube, but had a tiny preemie with reflux and failure to thrive. Just here to say that you are a great parent--it is lonely, and you can feel like you are failing all the time. You're not! This is really hard.

Love all the support and advice you've gotten—hang in there!

[Anonymous]

Anonymous wrote:No experience with a feeding tube, but had a tiny preemie with reflux and failure to thrive. Just here to say that you are a great parent--it is lonely, and you can feel like you are failing all the time. You're not! This is really hard.

Love all the support and advice you've gotten—hang in there!

This means so very much. Thank you.

[Anonymous]

Anonymous wrote:For child care, look at Easter Seals and Karasik. Both have experience with children with disabilities.

Karasik has a RN there every hour it’s open. That’s not true of most centers.

[Anonymous]

It all sounds scary at the time but looking back, it’s not a huge deal and is manageable. Zero reason to quit your job. Get a nanny and bring her to the training and dr appts with you. Before we even went feeding tube route, the neonatologist specifically said no daycare for any ftt babies. It’s so hard to get weight on them that even a minor cold can be a setback. Post some ads on care.com. For what it’s worth, my feeding tube baby is now the tallest of all my children.

[Anonymous]

There's an Easter Seals Head Start that just opened in Trinidad (Bladensburg Rd)--not sure if it will take kids who aren't low income but it's worth checking if that commute would work for you. They are also opening an Easter Seals in Arlington but I'm not sure when. I agree if you can find a nanny that could be best just from the perspective of avoiding illness.

[Anonymous]

OP here - quick update. Thanks to all of you we got into Karasik! We're now using a gtube and working out some issues but it's a journey. Thank you all again for your hopeful advice and examples. This is truly so hard but hearing about your successes makes it easier to endure.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I'm back!

My now teenager had a g-tube from 9 months until 3. We did not do an NG tube, because the issue was severe reflux and aspiration, and NG tubes aren't great choices in that circumstance, so I can't talk about the transition, but for is it was absolutely the right decision. He began to gain weight, and height. His breathing got so much better. He began sleeping so much better, and once the vicious cycle of aspiration, leading to labored and disorganized breathing, which complicated his swallow and caused him to aspirate, was broken, he figured out the eating thing. He wasn't using it for calories by the time he was 2, and then used it for water overnight for another 6 months because he got the hang of solids faster than liquids. Then we kept it for another 6 months to get us through flu and RSV season before pulling it out.

For daycare we did Easter Seals in Columbia Heights. One challenge that we had was that my kid needed to be fed very slowly because of the reflux, and licensing has pretty strict rules about not restraining kids, and my kid has always been very active. He had classmates who weren't mobile and had feeding tubes, and they could feed them, but mine kept crawling and then walking away from the pump. At home, I'd put him in the stroller and we'd go for a long walk while the pump ran, or I'd just follow him around with the pump, but it limited the hours he could be in daycare because they could really only feed him during nap time. That lasted about 6 months, before we were able to get him to tolerate a speed where he had longer periods off the tube, and we could feed 14 hours over night, the 2 hours at nap, and otherwise just do some snacks by mouth. But you may find that you are able to bolus feed him, and that that isn't an issue for you at all.

Let me know your specific questions, and I'll come back!

NP. Did your child develop any attachment to the g-tube? Did he feel any sense of loss of hunger cues? Do you think it would be different if a child were older and have a g-tube? What are the medical worries from having had a g-tube, i.e. are the holes able to recover w/o any weaknesses?

I'm the poster you replied to and I totally missed this. I can answer now in case you come back.

My kid did not have any attachment to the tube. Once he got over the discomfort of having it placed, it didn't really bother him.

I think he lost a sense of how hunger connected to eating. As a toddler, he'd be curious and happy to explore foods if he wasn't hungry, but if he was hungry he'd be cranky and not wanting to be bothered with food. He sorted it out, but it took maybe a year or two. I imagine if he was older or had it longer it might have made it harder to figure out. Also, if he had been a kid who had feeding aversions, or medical trauma around his mouth, and hadn't wanted to eat, it might have been a harder journey?

His stoma didn't close entirely. It closed down to a tiny pinhole on it's own, but the tract stayed open and if he sneezed or laughed really hard it would lead a little. Luckily not often, because leaking stomach acid can irritate the skin but we didn't have that problem. About a year after the tube was out they did a procedure to clean out the tract and sew it up. He has a scar that looks like a second belly button, but no restrictions on what he can do. He's a pretty athletic kid with no restrictions because of the tube now, although he still has asthma that I imagine might be exacerbated by early aspiration.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm back!

My now teenager had a g-tube from 9 months until 3. We did not do an NG tube, because the issue was severe reflux and aspiration, and NG tubes aren't great choices in that circumstance, so I can't talk about the transition, but for is it was absolutely the right decision. He began to gain weight, and height. His breathing got so much better. He began sleeping so much better, and once the vicious cycle of aspiration, leading to labored and disorganized breathing, which complicated his swallow and caused him to aspirate, was broken, he figured out the eating thing. He wasn't using it for calories by the time he was 2, and then used it for water overnight for another 6 months because he got the hang of solids faster than liquids. Then we kept it for another 6 months to get us through flu and RSV season before pulling it out.

For daycare we did Easter Seals in Columbia Heights. One challenge that we had was that my kid needed to be fed very slowly because of the reflux, and licensing has pretty strict rules about not restraining kids, and my kid has always been very active. He had classmates who weren't mobile and had feeding tubes, and they could feed them, but mine kept crawling and then walking away from the pump. At home, I'd put him in the stroller and we'd go for a long walk while the pump ran, or I'd just follow him around with the pump, but it limited the hours he could be in daycare because they could really only feed him during nap time. That lasted about 6 months, before we were able to get him to tolerate a speed where he had longer periods off the tube, and we could feed 14 hours over night, the 2 hours at nap, and otherwise just do some snacks by mouth. But you may find that you are able to bolus feed him, and that that isn't an issue for you at all.

Let me know your specific questions, and I'll come back!

NP. Did your child develop any attachment to the g-tube? Did he feel any sense of loss of hunger cues? Do you think it would be different if a child were older and have a g-tube? What are the medical worries from having had a g-tube, i.e. are the holes able to recover w/o any weaknesses?

I'm the poster you replied to and I totally missed this. I can answer now in case you come back.

My kid did not have any attachment to the tube. Once he got over the discomfort of having it placed, it didn't really bother him.

I think he lost a sense of how hunger connected to eating. As a toddler, he'd be curious and happy to explore foods if he wasn't hungry, but if he was hungry he'd be cranky and not wanting to be bothered with food. He sorted it out, but it took maybe a year or two. I imagine if he was older or had it longer it might have made it harder to figure out. Also, if he had been a kid who had feeding aversions, or medical trauma around his mouth, and hadn't wanted to eat, it might have been a harder journey?

His stoma didn't close entirely. It closed down to a tiny pinhole on it's own, but the tract stayed open and if he sneezed or laughed really hard it would lead a little. Luckily not often, because leaking stomach acid can irritate the skin but we didn't have that problem. About a year after the tube was out they did a procedure to clean out the tract and sew it up. He has a scar that looks like a second belly button, but no restrictions on what he can do. He's a pretty athletic kid with no restrictions because of the tube now, although he still has asthma that I imagine might be exacerbated by early aspiration.

OP here - I realize it's been a while but were you in this area at the time and, if so, what hospital or clinic did you use? Thanks very much for being so responsive!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I'm back!

My now teenager had a g-tube from 9 months until 3. We did not do an NG tube, because the issue was severe reflux and aspiration, and NG tubes aren't great choices in that circumstance, so I can't talk about the transition, but for is it was absolutely the right decision. He began to gain weight, and height. His breathing got so much better. He began sleeping so much better, and once the vicious cycle of aspiration, leading to labored and disorganized breathing, which complicated his swallow and caused him to aspirate, was broken, he figured out the eating thing. He wasn't using it for calories by the time he was 2, and then used it for water overnight for another 6 months because he got the hang of solids faster than liquids. Then we kept it for another 6 months to get us through flu and RSV season before pulling it out.

For daycare we did Easter Seals in Columbia Heights. One challenge that we had was that my kid needed to be fed very slowly because of the reflux, and licensing has pretty strict rules about not restraining kids, and my kid has always been very active. He had classmates who weren't mobile and had feeding tubes, and they could feed them, but mine kept crawling and then walking away from the pump. At home, I'd put him in the stroller and we'd go for a long walk while the pump ran, or I'd just follow him around with the pump, but it limited the hours he could be in daycare because they could really only feed him during nap time. That lasted about 6 months, before we were able to get him to tolerate a speed where he had longer periods off the tube, and we could feed 14 hours over night, the 2 hours at nap, and otherwise just do some snacks by mouth. But you may find that you are able to bolus feed him, and that that isn't an issue for you at all.

Let me know your specific questions, and I'll come back!

NP. Did your child develop any attachment to the g-tube? Did he feel any sense of loss of hunger cues? Do you think it would be different if a child were older and have a g-tube? What are the medical worries from having had a g-tube, i.e. are the holes able to recover w/o any weaknesses?

I'm the poster you replied to and I totally missed this. I can answer now in case you come back.

My kid did not have any attachment to the tube. Once he got over the discomfort of having it placed, it didn't really bother him.

I think he lost a sense of how hunger connected to eating. As a toddler, he'd be curious and happy to explore foods if he wasn't hungry, but if he was hungry he'd be cranky and not wanting to be bothered with food. He sorted it out, but it took maybe a year or two. I imagine if he was older or had it longer it might have made it harder to figure out. Also, if he had been a kid who had feeding aversions, or medical trauma around his mouth, and hadn't wanted to eat, it might have been a harder journey?

His stoma didn't close entirely. It closed down to a tiny pinhole on it's own, but the tract stayed open and if he sneezed or laughed really hard it would lead a little. Luckily not often, because leaking stomach acid can irritate the skin but we didn't have that problem. About a year after the tube was out they did a procedure to clean out the tract and sew it up. He has a scar that looks like a second belly button, but no restrictions on what he can do. He's a pretty athletic kid with no restrictions because of the tube now, although he still has asthma that I imagine might be exacerbated by early aspiration.

OP here - I realize it's been a while but were you in this area at the time and, if so, what hospital or clinic did you use? Thanks very much for being so responsive!

We used Children's for GI, nutrition and pulmonology and Georgetown for ENT. My kid got speech therapy for feeding from EI but it was pretty useless, because his oral motor skills were fine, except for the tail end of his swallow, and because he was always interested in food. My worry wasn't getting him to eat, it was keeping him from getting food and aspirating, and from sensory seeking and mouthing unsafe things.