My apologies ahead of time...this is kinda long!

We were finally ready to have the NG tube put in today. Oh how things change! Earlier this week, we saw the GI who said we should do the tube. She wants samantha to take 3 oz, 7 times a day -- GI said she would be happy with 20 oz of the 30 cal formula. This morning, we saw Samantha's cardiologist, and he thought she was doing better since last week and maybe would not need the tube. He said he would try a few more days of just her new heart medicine, which might help her eat better. Well, we were still having trouble feeding her when we got home, so we (Dh and I) told each other we would still do the tube since the homecare nurse was going to come anyway. Well, when the nurse comes she's all surprised that they want to tube Samantha. Nurse says that Samantha looks healthy and even though FTT, that tube doesn't seem necessary. But she said it is between us and the doctor what we want to do. Anyways, we didn't tube her today b/c the pharmacy sent us the wrong length tube. We won't get the right ones until tuesday, so Nurse said we should give it another try this weekend to see if we can get to 20 oz. She even called later in the evening to tell us she spoke with her boss, who used to be a NICU nurse, and her boss said it is not reasonable to NG tube a baby to only give a couple ounces through it.

So I need your advice. This is our situation: Samantha will drink at least 17 oz a day, with 7 feedings. Sometimes we can get her to 19, or even 19.5. With her heart medicine starting to kick in, and her reflux under control, I think she will start eating a little better (little is a relative word!). The GI's goal for Samantha is 20 oz a day. Is it worth the trauma to tube her, if it's only to pour in another ounce or two? From a FTT standpoint, yes, she does have a lot of catching up to do. We'd like to see her back at the 10th percentile, and she is now at the 2nd or 3rd percentile. From a heart standpoint, feeding from a bottle is hard on her, but her cardiologist this morning said she is looking better.

What do I do? We're so torn, b/c we're so borderline...

That IS a tough one. Our situation was so different. Daniel would go from fighting us to taking zero ounces, so it wasn't a tough choice. And he was never FTT, so calories didn't matter that much; I worried about hydration more.

Still, if you want my thoughts, I'd say: have the home health nurse show you how to place the NG tube, and if you have a really, really bad day, put it in and give her extra ounces at night. I'd also push the doctor to really find out how much is enough, for hydration and calories. You shouldn't have to be the ones to determine that!

Good luck....

Thats what we do....per our GI if ALexys takes less than 16oz per day we tube her at night. But...it is rough having to take it out and put it back in all the time also. Is she losing weight? We put off doing the tube until ALexys just kept dropping and dropping, if we would have even been able to maintain her weight I dont think I would have gone for it. It HAS helped her with weight gain, but so has supplementing...the tube has caused a bottle aversion, and she pukes a lot more when we use it which sometimes defeats the purpose of getting the extra formula in. If they only want you to use it for an oz or two I'm not sure it would be worth it. Have you tried other things such as a dropper to get the extra oz or 2 in ....or a finger feeder?

I agree with amy about the dropper. That is how we got food in our little GERDling. If she is so close to the goal and is still gaining.... maybe give it a short period of time to see if she doesn't just take off herself.

Since you have reflux under control and heart meds have been changed she might just start getting her appitite. My DD didn't have an appitite because she was so use to being starved. But once we did get her eating she went from on bite a day to some times eating a whole meal.

Good luck with this, I know this same choice kept us up more then my DD sleep disruptions. But what ever you choose pray for peace about it. You are her parents and I believe you will make the right choice for your baby girl.

Sue

We do use a syringe to supplement her feeds. But a lot of times, she will just hold the formula in her mouth, and then let it dribble out. Last week we found out that her heart is a little enlarged and is pushing on her esophagus, which might be causing a drinking aversion.

What is a finger feeder?

Anyways, about her weight gain...she is gaining! That's why I'm so confused!! She's almost 6 months old, and is gaining 1/2 oz a day, even though she only drinks 17 oz a day. Last week was a bad week, and when the GI saw her, she only gained 2 oz in a week. But since then she's started her heart med, and she's gaining 1/2 oz a day. The GI wants her gaining a little more than that since she has so much catching up to do.

Thanks for all your words, opinions, advice. It is reassuring and helpful to hear from other mothers who have been there, done that!

We had no choice but to tube Sam, he just stopped eating. Putting a tube down seems like a lot for a few oz. when she is gaining. Maybe give it a few days and see how she does with the new meds. maybe she will start taking in a bit more. Have you spoke with the GI yet??? Maybe the cardiologist should talk to the GI.

A good way to keep DD from spitting out an eye dropper meal is to put the dropper between her cheek and her gums back as far as the cheek goes so you are placeing the formula right between her upper and lower gums. but only put a very small amount at a time as she could choke if you put to much. but when you place it that far back their toungs can't push it out. and if it is only a little it is not tramatic. Of course if she starts to show she really hates that you are doing that stop.

How was she today? Do they think that the meds will reduce the size of her heart so she is more comfortable?
Sue