Infant feeding tube experiences?

[Anonymous]

We recently had to place an NG tube in my infant daughter after she was diagnosed with failure to thrive and was not eating enough to gain appropriate weight. It looks like we may be on our way to a gtube in the next few months if things do not improve. Unfortunately, my husband and I both have to go back to work by July 1 and the daycare we have lined up isn’t experienced in dealing with feeding tubes or complex feeding issues. This is so stressful! Our doctors say that July 1 is far away as far as infant development goes but I am feeling increasingly anxious about not having childcare lined up, especially considering how tough getting childcare is in general. I’m terrified I’m going to have to quit my job.

Any parents out there with experience in infant feeding tubes? How was the transition from NG tube to G tube? Any advice for navigating this new world (including how to find suitable childcare) would be appreciated!

[Anonymous]

I'm sorry you're going through this. You may have to get a nanny instead. It shouldn't be any more expensive than a regular nanny.

[Anonymous]

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

[Anonymous]

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

I wouldn't consider this a disability. It's more like having diabetes or needing a nebulizer. It's not rocket science.

[Anonymous]

Anonymous wrote:

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

I wouldn't consider this a disability. It's more like having diabetes or needing a nebulizer. It's not rocket science.

Regardless of whether it's a disability, centers with experience with disability may feel more comfortable taking care of young children with less common medical needs. Rocket science or no, the OP's original day care won't do it.

[Anonymous]

I am sorry you are going through this.

We had a child who was put on the feeding tube due to failure to thrive a decade ago, and it was a very dark time in our lives. No one in the medical community could help him and kept insisting that he'd continue feeding through the NG tube. At the same time, the tube wasn't helping him learn to eat either and he looked so uncomfortable. We knew that if we kept going, he was going to eventually end up being on the G-tube. At the time, we went through infants and toddlers. The SLPs there were pretty much helpless, but our PT and OT were great with helping DS stay developmentally on track despite all the issues he had.

We had joined an online parent support group. We decided to pull the NG tube for a week, started using the Haberman bottle, and monitored extremely closely his intake. We watched carefully for any sign of dehydration.
Thankfully, DS started getting some hungry cues. I remember he wasn't eating much, but was was producing wet diapers. I remember we weighed everything and counted every partial CC of intake. The process was approached as scientific as possible.

That said, my spouse is a doctor so that helps mitigate some fears with the weaning. I also took a leave of absence off work for a year to focus on getting DS back on track, which we never knew would happen or not happen but had to hold onto some modicum of hope.

I do not know what your child's health situation is and what your hope is of weaning her off the NG tube. The NG tube for babies is challenging because they get itchy and will try to tear it out of their nose.

Even if you were successful at weaning off the NG tube, it would be very hard to have her at a center. If she gets sick, it would undo everything. If possible, I would lean towards trying to get a nanny or even shared one to keep your daughter safe. This would be the case even if she ends up getting the g-tube.

[Anonymous]

Mom of an older child who had an NG Tube and a feeding tube. I would work with a center like Kennedy-Krieger and their feeding team during this period before July to try to get your daughter back on track with eating. You can do it if you really work hard with her. Put guilt aside.

She will probably gain weight quickly with the NG tube. Then you will need to work with the feeding team to resolve her feeding issues and get her back on track. The problem with a feeding tube is that most kids stop eating by mouth.

[Anonymous]

Anonymous wrote:

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

I wouldn't consider this a disability. It's more like having diabetes or needing a nebulizer. It's not rocket science.

Diabetes and asthma are both disabilities, as is this. Having said this, as a parent of a child who had asthma and a feeding tube, and a teacher who has had kids with diabetes in my class, I can tell you that a feeding tube is way easier than asthma or diabetes both of which can cause life threatening incidents.

[Anonymous]

PP above here,

I'll come back with more thoughts. I'm the one who wrote in your other thread saying that the g-tube was the best parenting decision I made. But I am at work now!

[Anonymous]

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!

[Anonymous]

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?

[Anonymous]

My DD also had a g-tube for failure to thrive. We worked with a feeding coach to determine when to feed her so that she’d learn to recognize hunger signs while making she she had enough nutrition.we also had to measure everything she ate. Supplementing with a bottle allowed her to work on the “suck, swallow, breathe” motions. Over time she figured it out and her g-tube was removed a little over a year. We used night time to get her g-tube feeds in to make sure she was getting calories. We topped her off before day care and the minute we got home, and did the best we could with the bottles at day care. Some days she took the bottles and some days she didn’t but the night time g-tube feeds were essential. Eventually, her body figured it out and she exclusively took the bottles. We also think DD had acid reflux which made her not want bottles at all. I think the acid reflux medicine played a part in finally getting to to accept the bottle.

You’ve got this!

[Anonymous]

OP here. Thank you everyone for sharing your experiences - I've felt pretty isolated on our journey so the shared stories are comforting.

We're currently seeing a slate of specialists over at Children's to determine the cause of DD's struggle to take in appropriate volumes on the bottle. We initially struggled with bad acid reflux, which made feeding very difficult for the first three months, but that seems to have abated somewhat as she's gained size (DD was born and remains in the <1 percentile).

Some signs have pointed to possible micro-aspiration as DD often has labored and/elevated breathing that we haven't been able to explain through cardiac and pulmonary evaluations. We're waiting for a swallow study and possibly a full endoscopy for more answers. We've got appointments lined up with Children's disordered feeding clinic and aerodigestive feeding clinic in July. We've also got OT through a home health program and should be getting Maryland early intervention programming soon.

In the meantime, we're trying to keep the feeding as "normal" as possible and to try to encourage regular feelings of hunger. So far, she will still take an ounce or two orally, with the rest going through the NG tube in a bolus feed. Looking ahead, DH and I see the g tube as the next step if we are unable to identify a straight-forward, easily fixable reason for all of this. The ng comes out so, so frequently.

Am I missing anything as far as medical support, evaluation goes? Who did you use to guide how to configure feeding schedules and nutritional needs?

We've got GI, ENT, pulmonology, and Speech at Children's working this case. We've had cardiology rule out heart issues and GI rule out structural issues with her digestive system. I think we need more feeding coaching/OT work but that should be coming online soon through Maryland infants and toddlers program.

Thank you all so much, again!

[Anonymous]

Are you working with an SLP who is a Feeding specialist? I know there are OT but also SLp techniques that can help, or at least helps provide treatment suggestions.

We had a child who aspirated (never found reason) and had an Ng tube for a couple months and then a g tube for several months and then was able to move to thickened beverages and swallow safely. Eventually to normal food and drink, but a long path.

[Anonymous]

Why not just get a nanny? You can be very specific on care.com, and it isn’t rocket science. My son is now 13 and it’s been years, but we found a nanny who had been a nurse and also a nanny who had been a pharmacist in her home country. Both were great and went to the same training I did. I actually trusted both of them more than I trusted myself at first!