Tuesday, June 8, 2010

Feeding issues

Magnus had a cardiology appointment yesterday morning. I guess that was the longest (6 weeks!) he's ever gone without seeing a cardiologist!

We had been worried about this appointment, mostly because of Magnus's weight. After his Glenn surgery, his eating and weight gain dramatically improved. But all of that seemed to come to a screeching halt at the beginning of May. All of a sudden, he didn't want to eat anymore, he was fussy all the time, and his weight gain leveled off. We attributed the fussiness to teething, although he still doesn't have any teeth.

And then, two and a half weeks ago, he came down with some sort of virus. His symptoms were oddly diverse: conjunctivitis, diarrhea, and a cough, but when I took him to see the doctor, she said it was probably all caused by the same virus. He never got really sick, but his eating got even worse, and he actually started losing weight. He finished off the month of May lighter than he'd been when it started, and since he's been growing, he just looks so terrifyingly skinny.

So, we were nervous about going to see the cardiologist. Nervous, because we knew she was going to want us to put his NG tube back in, but I was also nervous that his weight loss and fussiness could be attributed to a problem with his heart. Luckily, that latter possibility was not the case, and cardiac-wise he is doing just fine. That leaves us with the eating.

What would be so terrible about putting the feeding tube back in? Well first, even when he was a tiny baby, he was a champion at pulling his tube out. Now that he's stronger and has better fine motor control, I shudder to think how often we'd have to replace that tube. Second, the tube seems to be uncomfortable for him. He would often gag on it, and he would frequently just scream the whole time we were using it to feed him. This made feeding an extremely slow process, which leads me to problem number three, which is that the tube is inconvenient. It's a bunch of extra equipment to worry about and in his case is much more time consuming than feeding by mouth. And fourth, he'd have to go around with a tube on his face! This might sound trivial, but I guess one of my coping mechanisms in all this has been to strive to live our lives as normally as possible. A baby with a tube on his face is NOT NORMAL and is visible to the world as a SICK BABY.

But really, my biggest frustration with all this is that a tube won't really do anything to fix his feeding issues, it will merely circumvent them. As things are now, Magnus typically only eats one or two ounces at a time, and then he turns his head away or pushes away the bottle. If you try to get him to eat more than that, he screams. I don't know if it's from reflux or gas, or just him feeling full, but it feels wrong to me for the solution to be to force-feed him through a tube.

But I don't have an alternative solution. We just started adding probiotics to his food on Sunday evening in the hopes that it would improve his diarrhea (which has now been ongoing for 17 days) and maybe generally improve his bowel function and appetite. He then ate fantastically on Monday morning, but dropped off during the afternoon and evening and ended up having another meh day of eating.

These feeding issues are so frustrating...all last month, I've felt like I was fighting with him all day to get him to eat, and then because he eats such small meals, he usually wakes up every 2 hours during the night. And then lately, he won't even eat at night, but we feel like we have to get up with him to at least try.

Anyway, if Magnus doesn't turn things around right away, we have to go back to the cardiologist's next Thursday and he'll be back on the tube. I'm going to keep trying with the probiotics, but I'm not terribly optimistic. One positive thing, though, was that Magnus was actually in a really good mood all day yesterday, despite the fact that we had a very long doctor's appointment that included an echocardiogram, an EKG, and a blood draw. Between the "teething" and being sick, it had been a long time since he'd had such a cheerful day, so maybe those probiotics are doing something after all.


  1. Hi Jen! I just came across your blog not too long ago and thought it time to introduce myself. My name is also Jenny and my daughter Aly (11 months) has HLHS. I know exactly what you mean about the tube. I absolutely HATED the tube for all of the reasons that you listed. The tube always brings more stress, which is the last thing a heart mom (or baby) needs. We will be praying that Magnus starts gaining so he doesn't have to go back on it. Maybe it could be reflux again? Aly had bad reflux in the beginning and her pediatrician told us to beware because it normally reared it's head again between 6-9 months.
    Heart Hugs,

  2. Jenny, it definitely did occur to me that it might be reflux, but it doesn't seem to make a difference whether he takes Zantac or not. Who knows?

  3. We have a daughter, born 12/2, with HLHS; feeding issues have been the most stressful part of our journey, hands down! What is Magnus eating? I know it is a complex equation, and each child is different, but after Cora's Glenn (at 4.5 months), I threw in the towel on fortified breastmilk and formula/supplements in general and switched to straight breastmilk to everyone's chagrin. Our GI was ultimately convinced that Cora had allergic colitis, triggered by cow's milk protein intolerance, and she could not tolerate breastmilk despite my diary free diet. It was the only recipe we had never been allowed to try, and it did wonders. She put on more weight in the weeks following her surgery than she had during any other period. I know the Glenn physiology is helping, too, but just a thought. We ultimately felt that the 30 calorie fortified milk, for instance, was more bothersome and resulted in fewer ccs consumed than the lower calorie breastmilk which she tolerates really well. Hang in there. I know how frustrating it can be to get these little guys to gain weight! No fun at all.

  4. Hannah, that's interesting. Magnus is on breastmilk fortified to 27 kcal. We started out with 22 kcal fortified, and then kept adding fortification to try to improve his weight gain, but I haven't really noticed it helping. At the same time, I worry that if we went back to straight breastmilk now, he would lose weight in the short term, which we definitely can't afford at the moment! When he starts gaining again, though, I'd love to decrease his fortification, and my crazy fantasy is that he would go back to at least partial breastfeeding, which we did for his first month, but stopped when we took out his NG tube because we wanted him to get more calories from the fortified milk. Getting an almost 7-month-old to go back to the breast is going to be difficult, if not impossible, but I'm so sick of pumping all the time!

  5. So a few more thoughts: what if you just offered him straight breastmilk, in a bottle, to see if he would take more volume? If he does not, then there is your answer. If he does take more, you just need to keep track of how many calories he takes per feed at the 20 cals per ounce of breastmilk versus the fortified (breastmilk is 0.7 cals/cc while your 27 kcal is 0.9 cals/cc). If he is really taking as little as one ounce per feed now, you would only need him to take about 40ccs per feed of exclusive breastmilk to equal the calories he is currently getting. If he took more than 40ccs in a feed, he'd be getting MORE calories from your milk!!

    While I know how draining (no pun intended!) the exclusive pumping is, your goal, it sounds to me, is to get him breastmilk each day while encouraging his weight gain. If after trying the exclusive breastmilk for a few feeds/days he seems to take more volume, you could try to re-introduce the breast at times when he is either really hungry or tired (I always had success in the middle of the night). But I would definitely try straight breastmilk in a bottle first; it will be less stressful for you, and you will be able to have some concrete numbers to work with.

    I hope I am not being pushy, I just know how terribly frustrating the weight gain can be and if any of this is helpful, wonderful; if not, I hope I have not over stepped my bounds. Good luck!

  6. Hannah, no, I definitely appreciate your suggestions! The problem is that he is wildly inconsistent in how much he will take at a feeding. Sometimes it's 2 ounces and sometimes it's less than 1, and he's not on any sort of regular feeding schedule, so we'd have to try the straight breastmilk for at least a day or so to really determine what his intake is.

  7. Hey Jen. I have been following your blog through Lisa's. My daughter is Carolena (10 months). She has eaten like crap from day one, consuming half of what she should with great effort from me and my husband with the added bonus of then vomiting back up half of what we could get down her. I have done everything with her while resisting getting a tube. She went from breastfeeding exclusively to now full formula bottles. I was very disappointed that I could not longer breatfeed her as I nursed my two boys until 1 year of age (I stopped pumping when I went back to work). C has had every imaginable test and therapy done with the 5 different GI doctors she has seen (cardio kept insisting it was GI and GI kept insisting in was cardio). The only GI medication she remains on is Prevacid, which actually seems to help her. For every reason you listed (and more) I refused to have a tube placed. I was so determined that she would catch on. After her Glenn I was so excited that she would eat since all the docs said how her heart would be functioning so much more efficiently and she totally rocked her 1st heart surgery and went home in 5 days. I just knew she could do it. We stuggled for the next 5 months with her. She is not even quite 14 pounds at 10 months old. She recently had to go back in for a 2nd heart surgery to fix again an issuse she had fixed back with her Glenn. My husband and I decided, after much deliberation, to have a g tube placed. C did pick up her eating after her 2nd surgery but it is still not enough. I was so against getting a tube and now I do not know why I waited so long. She does great with it. It is more equipment and does take more preparation but I cannot even describe to you what it feels like to not have to fight with her to eat for the first time in almost 10 months. If you would like to read about C's eating stuff and GI stuff please check out my blog. I really empathize with you. I absolutley know that g tubes are not for every baby and I cannot even tell you how frustrated I was to hear all my heart mom friends talk about how we should just get a g tube for C. But really, I think it has been a life saver for all of us. My biggest concern about getting C a g tube was exactly yours, why in the world would I force feed my baby if she cannot handle that amount of food. I was so adament that I was not going to stress her that way that I lost sight of the fact I was stressing her far more by basically starving her. We still have no concrete answer as to why C does not take the volume she needs. There does not appear to be anything GI wrong with her and I will not put her through all those tests again if not absolutely necessary. I have no real advice about the eating other than what I have learned from my own daughter, heart babies struggle with eating, even when the heart is functioning as well as possible and there are no GI issues, sometimes they just need a little help to keep them on track. We feed C bottles and baby foods off the spoon all day and do a slow drip feed at night. It really seems to be working. I apologize if I am not saying this all correctly. I just really understand the frustration and constant worry of having a heart baby that just will not eat and wanted to let you know I am more than happy to share what we have tried and what has worked for C.

  8. Hi Ashley! I have been reading your blog occasionally (also found through Lisa's) so it is nice to "meet" you!

    I still hold out hope that Magnus will pick it up with the eating, especially since he has gone through periods when he was eating enough to gain 40 g/day, which is above his goal. But he's definitely not in one of those periods now, and I know we have to be realistic. He is going on NG feeds for the time being, and we are taking him for a GI consult tomorrow, but if we don't get this figured out soon, I think you're right that a G tube will be the way for us to go, too. We definitely want to avoid another surgery (albeit minor) if we can, but it seems like other parents of G tubers all say the same thing, that they wish they'd done it sooner.