At what point...

Brummy14 · January 2013

...did the NICU residents start talking feeding tubes?

Our girls hit 39 weeks tomorrow, and while one is consistently taking well over half of her feeds by mouth, the other hardly takes any. Granted, she's been battling non stop congestion, for which she's been worked up three times and all is normal, but that has limited the number of bottle attempts she's been given. That said, she's just a sleepy baby, with not many wakeful periods at this point. I will let her stay here as long as they will allow to learn to bottle feed, but I really don't see her building the endurance or having the energy anytime soon. As much as I hate the thought of a feeding tube, I also realize it is such a minor hiccup relative to everything we could have faced...but, trying to be realistic, and knowing they won't let her just camp out here forever. What were your experiences?

Brummy14 · January 2013

Yes, OT feeds our girls daily. The one is nippled at least 6 out of 8 feeds, and I'm really not worried about her. The other is a minimum of once per shift, more if she's somewhat alert and cueing, which isn't all that often, unfortunately. At best, she'll take half of her bottle when she does try, so she's around 10 percent or less per day by mouth.

They both suffer from reflux, but they really don't do much in the way of meds to manage that here unless they're having brady or apnea episodes as a result. If it continues past their due date, they may consider it, but it's unlikely.

Brummy14 · January 2013

Thanks. We've mentioned reflux meds before and even pushed, but to not much avail. It may be time to do so again.

She's more coordinated than her over eager sister, actually. But is just sleepy all the time, so she never can get through a bottle. She will occasionally choke and brady, but her sister does that on a daily basis since she's the one trying to suck the whole thing down at once. Lol.

Brummy14 · January 2013

Awesome. DH is calling the resident now, since as of late, even the most benign conversation can leave me in a puddle of tears. Lol. And I'm so not like that...this process has just broken me down. ::sigh::

No cereal, but my BM is fortified with HMF to 24cals and liquid protein, so it's thicker than just plain BM.

thishappyhouse · January 2013

My daughter was sort of a combination of your two. She was super sleepy and never very pleased to have the bottle put in her mouth but then she would get over eager (or was just super uncoordinated?) and have horrible choking episodes to the point where she was being bagged or given blow by somewhat regularly. It was scary and frustrating.

We werent dealing with reflux, but I would definitely push for a trial of meds before considering a g-tube. Is she still on oxygen? Is that contributing to her congestion? I assume that they are trying saline drops and trying to limit the suctioning?

At 39 weeks my daughter was probably only taking 15% of her daily volume by mouth on a good day. The neos and nurses started mentioning a g-tube as a last resort around that time. I was unwilling to discuss a g-tube until 44 weeks adjusted and depending on her progress was willing to go home with an NG (some hospitals don't do this)

I hope this week is a good one for you guys and there is progress and a plan. Its so hard when you are approaching term with that light at the end of the tunnel still looking far away.

Brummy14 · January 2013

Yes, she is still on the teensiest bit of oxygen because she desats so much on account of the reflux. Vicious cycle! She spent two weeks under the humidified head hood to try to loosen up the congestion, which helped, but she's back on the cannula now. And, yes, definite use of the saline drops with as little suctioning as they can.

Courtneyw04 · January 2013

We have one baby on the gtube for a paralyzed vocal chord and three babies on ng tubes due to aspiration. All four of them slept through the night consistently when they were about two months old because they got fed continuosly at night. We give the babies as much milk as they want by bottle and the rest by the feeding pump. They have been slowly working their way up to full feeds at every feeding. The thought of bringing home a baby with a feeding tube can be scary but I promise it's not that bad! :-)

thishappyhouse · January 2013

Just thinking out loud... Have you had an ENT consult? They may have some ideas as to what is causing her congestion or some different ways to resolve it. They can also easily do a scope at the bedside to take a look at her anatomy and to see whether there is irritation from the reflux.

Have you tried breast feeding at all? That was the first place my daughter was successful. It obviously isn't a solution to getting her home (she had to learn to bottle feed). But when she was successful at that everyone became a little more patient

jacque_z · January 2013

I didn't read all the responses so I could be rehashing some stuff. They started talking feeding tube with my daughter pretty early I want to say about 36w but they thought she had neuro issues. I think we scheduled the surgery around 39w but it ended up getting cancelled when her MRI came back normal. She ended up making great strides (it just clicked) weeks 40-42 and came home at 42w.

My DD had severe reflux and a delayed swallow which all contributed to her feeding issues. Have they done a swallow study? Have they thickened their formula? Thickened formula helped my daughter immensely! GL! I know how frustrating feeding issues can be.

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