Saturday, June 19, 2010

NG Nggggggh

It's been an eventful couple of days.

At Thursday's cardiology appointment, we requested a GI consult, and somehow were magically able to get an appointment the following day. Our GI appointment was mostly pretty uneventful. They approved the cardiology plan to supplement his feedings via NG, and gave him a prescription for Prevacid, since it seems clear that the Zantac isn't really working for Magnus's reflux.

We had decided to wait until Friday night to insert Magnus's NG tube, partly because Iggy had to work late Thursday night, and also because we figured it might be best to try out his new nighttime NG feeds on a night when I didn't have to go to work the next day.

So when I got home from work Friday, we got down to business. We swaddled him, we prepared all the bandages to keep his tube in place, we got out the tube, and I took a deep breath and started to insert it.

Inserting an NG tube is really pretty straightforward. You stick the tube in one nostril, and then just keep pushing it until it gets down to the stomach. Except the first time, it didn't work. The tube just got all bunched up in his throat, so I pulled it out and tried again.

The second time, the tube went all the way in, but then he immediately vomited it back up. Ditto for the third time. By then, all three of us had had enough. Magnus was screaming his head off, and Iggy and I were about ready to cry, as well. I sent a panicky e-mail to our cardiologist, and decided that we could bring him to the urgent care clinic the next day to have a nurse insert the tube. But it was pretty unnerving that we would be unable to reinsert it.

Our cardiologist e-mailed me right back and was very reassuring. Take him to urgent care tomorrow, she said, and you guys can get more training next week. It was exactly what I needed to hear...a little pat on the head.

So this morning, I brought Magnus in to urgent care to have the tube inserted. Iggy had to go to work, so I was by myself. With great struggle, the nurse and I managed to get the tube inserted, but she had to call another nurse to help check placement, and Magnus got so upset during the insertion that he screamed until he turned blue, and then vomited up a bunch of bile afterwards. I think even the nurse was a little bit traumatized. She suggested that we stick around for a little while to make sure he was tolerating the tube, and we did. He seemed to be OK, although not very happy, so after half an hour or so, we went home.

I think he was mostly asleep on the drive home, but as we pulled into the garage, he started to fuss. As I gathered up our things and tried to comfort him, I accidentally dumped the contents of my purse on the garage floor, and somehow, that was the thing that sent me over the edge. Magnus was crying, and I was crying, and I just felt completely devastated, knowing that Magnus was going to have to live with this horrible tube that was nightmarish to insert, and then probably uncomfortable for him all the time. Even as a 6-week-old, he managed to pull his tube out on a regular basis, and I imagined that surely things couldn't be any better now. Since we couldn't do it ourselves anymore, how often was I going to have to take him to the doctor's to have the tube re-inserted? Was I going to be driving him to the clinic several times a week, skipping out on work, and having to shell out a $10 co-pay, plus $6 for parking, in order to have this incredibly horrible thing done to him?

I managed to pull it together and bring him inside. I put him down on his sheepskin to play, and he actually cracked a smile and seemed to be doing OK. I left him there because I was way overdue to pump breastmilk, so I sat down to do that. About 10 minutes into the process, I noticed that Magnus was fussing a little bit. His back was turned to me, so I couldn't see what was going on, so I just talked to him and hoped he would settle down, but he didn't. I stopped pumping and went over to check on him. And wouldn't you know, he had pulled his NG tube entirely out. The outside part was still taped to his face, but the part that was supposed to be in his stomach was just flapping around freely.

At this point, it became clear to me that an NG tube just wasn't going to work for us. We had gone through so much to get this tube inserted, and then it didn't even last 2 hours! There's really no way you can prevent someone from pulling out an NG tube, short of taping over their entire nostril, preventing them from breathing. Or keeping them in a straightjacket. Neither of these options seems particularly desirable.

I sent an e-mail to the cardiologist saying that the NG tube was just NOT working out, and that we would have to move on to other options next week.

What other options do we have? Well, it seems that we really only have one. Magnus could have a permanent feeding tube surgically placed in his abdomen, a G tube. While this involves another surgery, it can be done endoscopically, and typically only requires patients to stay in the hospital for a day or so.

The issue there is that a G tube can make reflux worse. Since we think that reflux is a big part of the reason why he's not eating enough now, that's a big problem. For this reason, GI docs often recommend that babies with reflux who have G tubes placed also undergo another simultaneous procedure called a Nissen fundoplication. This typically cures reflux, but comes with its own set of possible complications, including problems with gas, digestive problems, and most alarmingly to me, it makes it impossible to vomit.

So basically, while the G tube sounds very attractive to me, I'm scared that he won't tolerate it without the Nissen fundoplication, and the Nissen, quite frankly, terrifies me.

I don't really know what to do. It feels like we have no good options...the NG just isn't working, the G tube seems like it would create as many problems for him as it would solve, and the status quo of limping along with weight gain certainly isn't satisfactory either. So for now, I'm drinking a big glass of wine and saying to myself that we'll figure it out next week.


  1. I'm so sorry to hear about all your frustrations. I don't think I've ever commented on your blog before but my daughter is 11 months old and has HLHS. She had severe reflux issues and the NG tube was also not something she tolerated. We tried reflux med after reflux until we finally found a combination of Reglan and Prevacid. I know Reglan is a bit controversial if babies are on it for too long (it can contribute to developmental delays) but it works magic with reflux. Aly only needed it for a couple months, which we were told in the long term wasn't considered a "long" time.
    I'm sorry I don't have better suggestions for you :(
    heart hugs,
    Jenny- mom to Aly HLHS

  2. God, Jen, I am so sorry that you guys are having these setbacks. Poor little guy (and, since he is not the one who will be permanently traumatized by all this, poor you ... I hope you have plenty of wine).

  3. Hi - I'm Stella's Mom and we've been through this please read what I have to say!!!

    Ahhhh!!! Yes I have suggestions!!! STAY AWAY FROM THE NISSAN!!! OMG! IT'S NOT A CURE!!! The Nissan can cause horrible problems especially as kids grow. The Cleveland Clinic suggested this to us too and Boston about had a flipping fit!!! NOT FOR HEART BABIES PLEASE!!! That surgery is so unnecessary when it sounds like the exact same thing Stella was going through. A G-tube was awesome for us! Generally speaking, some kids experirence more vomiting at first, but it's just while the body adjusts. Once Magnus gets stronger they will see a HUGE improvment in the vomiting. My guess is that it's not reflux at all. It's heart related vomiting. Every single heart baby I've ever encountered vomits. Stella was on more meds for her stomach than for her heart at one point and none of them helped! It wasnt untl she was strong enough that she started keeping food down. That came with the Gtube. I know how scary the thought is, and we fought it for a long time but IT WAS STELLA'S LIFE SAVER!!! She would still vomit, but as she got stronger, it decreased. There were times (even with the tube) that she would vomit for days, so we would just mix her formula with pedialyte and so she wouldnt dehydrate and that would work. Sometimes if there is snot, phlegm, boogies or a slight cold, she would vomit every single feed, so then we mix half pedialyte and half formula and she seems to tolerate it better. Just thinning the formula out every so often makes a big difference. Also if Magnus is on extra calorie formula, that could be half the problem. Every heart baby that has been extra calories seems to vomit. Most healthy baby's can't handle fortified formula, I don't know why doc's seem to think that heart babies can. Especially since the digestive system is the first to be compromised due to heart related diseases. Then the docs just put the kids on more meds which can make the kids even more sick - it's a vicious cycle.
    I urge you to please consider the Gtube!! It saved Stella's life. She couldnt eat at all by mouth before it. She was also on a NGtube that came out 15times a day and I was a basket case. I finally broke down and said "I give up, I'll do the G-tube". I felt so defeated. Until I realized that I should've done it a long time ago! It was the best decision that we ever made. Please feel free to contact me anytime if you have questions!!!!

    The Gtube is a life saver and NOT A LAST RESORT!!!! It's the start to a turning point!!! Stella is walking (and running) proof!!!!

  4. By the way, Stella's journey is at
    and my email is loumertes at

  5. Laura, Magnus has "silent" reflux: he doesn't vomit (usually), he just experiences pain after eating, which makes the whole process aversive. We need to talk to the GI docs about it this week, but if we could manage a G tube without a fundo, that would be ideal.

  6. I'm so glad you have this support network of other parents who have been through this. This gives me comfort, and I hope it gives you some, too. Sounds like the G tube is the way to go, but of course you'll have to consult with the doctors and base it on Magnus's needs. If love and best wishes are any help, please know that we're sending lots your way.

  7. I didn't mean to overstep Jen...I'm sorry. I just remember being so frustrated and I can see that you are there too. I just want you to know that there is hope and for us that was the G-tube. I hope they can manage the G-tube without the fundo. Let me know if you have any questions about the G-tube or the surgery..I'm here to help!

  8. Laura, no, you're not overstepping at all! It's definitely good to hear a G tube success story about a kid with reflux.

  9. Hey Jen. I know you are probably so tired of advice from all us other heart moms but I just want to say I completely second everything Laura said. A fundo was also suggested to us for C as she did have horrible vomiting. We also did the Prevacid/Reglan mix and that just seemed to make it worse. Prevacid alone works very well. After having another heart mom friend warn me against the fundo I researched it and decided I was not going to have that done for C. I even discussed it with her cardiac surgeon and he was adamently against her having a fundo. So, we went with the tube only and she really has done very well with it so far. And magically, her vomiting has stopped. I think she just got big enough and strong enough and her heart "fixed" well enough that the vomiting just stopped. I do hope the eating issues work out soon for you all. I will be sending you lots of good happy eating thoughts.

  10. Jen,
    I am sorry Magnus is having these set backs. Joshua had a lot of the same issues, but as he got bigger they eventually went away completely. Of course that's not the case for everyone, but you'll get it figured out. I've heard great things about the g-tube, as others have mentioned. Hope you find a solution soon!