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the eric update - day 88: colorful crib! weight gain (finally)! gut tube?@!

since it looks like we may or may not be having an extended stay at the new nicu, we decided to spruce up eric's crib with artwork made by eric's cousinds that we brought over from the old nicu. the artwork is color coordinated with his mobile, no?

other than sprucing up his crib, it was a relatively quiet day in a good way. after days of not gaining much weight, he weighed in a 4 pounds 14 ounces or 2215 grams, which means if he keeps the reflux under control he should hit the five pound mark quite soon. perhaps on his lucky 13 week birthday? also, he's been displaying signs of being very hungry after his feedings, so after some advocacy on my part, they increased his feedings from 40 cc's to 45, which amounts to about a whole extra bottle of milk over the course of a day. it's a tough balance, i think his doctors are wary of giving him too much milk at once since he's refluxes so quickly, but it's also not fun to watch him suck on his fist and smack his lips after each meal. everyone will be watching him to see if the increase in volume, exacerbates the effects of the reflux. indeed, after two and a half days of no alarms, he had an apnic episode in the evening, although it's impossible to know to what degree the increase in feeding volume contributed to the alarm, if at all.

it's still not clear if eric's neonatologists believe that the hiatal hernia and nissen surgeries are inevitable. one can learn a lot by learning to decipher eric's neonatologists' medical notes and amongst the scribblings we can see that they are discussing the results at a radiological conference, which i take to mean that they're gathering opinions. if you look at the notes you'll see that they specifically refer to a GT/nissen procedure where the GT refers to a "gut tube". with a gut tube you feed your child by popping off a cap on their abdomen and pouring milk directly in their stomach. as with the nissen surgery, it's been my understanding that GTs were done as a last resort on kids with very obvious esophogeal damage to give the damaged tissue time to heal, but eric doesn't display any signs of obvious damage. one nurse commented that they the GT was actually necessary to help the esophagus heal from the nissen surgery itself and not preexisting damage from reflux.

if they do decide that he needs the procudere, i think we'll be getting at least a second opinion, because it sure seems like quite an invasive procedure given that eric seems to be doing so well with the barley feeds. but then again, perhaps they're seeing something ominous in the upper GI scans? if so, they're not saying anything directly to us. i'll wait a day, or two or three before starting to press them to clarify what's going on behind the scenes.

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9/30/2004 11:56:00 AM 9 comments


What the nurse commented to you about g-tubes is what I have understood as well. The person who has the Nissen basically automatically gets a g-tube or button because of the procedure, but may or may not keep it afterward.

What I have heard is that g-tubes are placed (with or without Nissen) because of poor weight gain or inability to suck. Luckily we've thus far avoided one. :)

In other news, Ricky is in the hospital as of yesterday. With his CF it's inevitably going to happen from time to time but at this point he'd been out for almost 2 years, which is good news.

Thinking of you guys!

By Blogger Becky Sprecher, at 11:16 AM  

hi becky -

thanks for the clarification on the gut tube. i'm sorry to hear that ricky is back in the hospital, which i'm sure isn't easy after being out for two years. please keep us posted and our thoughts are with you.

By Blogger e3, at 1:04 PM  

Hi -

Susan has a g-tube because she didn't take enough food by mouth consistently. No nissen because at the time of surgery she wasn't showing reflux. The g-tube is also given with a nissen because the nissen can interfere with the ability to burp and you might need the tube to vent gas. It depends on how tight the nisssen is whether burping/vomiting will be possible.

Please get as much information as you can about this procedure. On the feeding listserv I read, many of the kids have had nissens and NONE of their parents are happy with it. It's kind of like stamping out ants with a sledgehammer. A lot of these kids still vomit, or they retch without being able to vomit. In some cases the abilty for oral feeds falls way back or stops altogether. I know it's great for some kids, but I don't think there's any way of knowing which kids it works for and it can be detrimental for the others.

I hope you don't mind the unsolicited advice. Naturally your doctors and you know what is best for you child. Maybe ask about Prilosec of Prevacid as more powerful medicines to try before surgery. They've helped us a lot. Even with the months of projectile vomiting at every feed, I'm glad we've avoided the nissen. Devil you know vs the devil you don't know, you know?

Good luck,
Molly in New Orleans

By Anonymous Anonymous, at 10:05 PM  

hi molly -

thank you very much for the "unsolicited" advice. we appreciate any and all perspectives, whether for or against the procedures. i think we're going to have a tough decision ahead of us, because we're beginning to learn why the neonatologists are leaning towards wanting him to have the nissen and g-tube ( i'll write more in today's post ). but we're going to have to weight their professional perspective ( and certainly we've heard from parents who thought it was the right decision for their child ) with the opinions we've been hearing from people who've decided to have the procedure done on their children and say they wouldn't go through it again.

it seems we're going to have to make one of those impossibly difficult decisions that all micropreemie parents are confronted with at one point or another.

By Blogger e3, at 11:14 PM  

oh yeah - what feeding listserv are you reading? i suspect it might be worth trolling through the archives. thanks!

By Blogger e3, at 11:41 PM  

Here's a link:

Unfortunately Yahoo's search function is terrible, but nissens, medications, and dosages are discussed pretty constantly.

By Anonymous Anonymous, at 5:46 PM  

My name is Melissa and I am the mother of three children, two with cystic fibrosis. Our youngest child with cf had a nissen and g-tube placed at the age of 6 months. She is now three and we want to take the g-tube out because it is always red and infected no matter what we put on it. The g-tube was supposed to be temporary and was to be taken out when she gained weight. She has put on the weight and my husband and I want to take the g-tube out against doctors advise but are scared to because of the nissen. What is she gets the flu or accecdtially swallows posion, if she cannot throw up will she have to have her stomach pumped? I am angry with myself for doing the nissen because I feel like we are stuck with this icky g-tube forever! Should we take it out??

By Blogger melissa, at 5:39 PM  

melissa: I am angry with myself for doing the nissen because I feel like we are stuck with this icky g-tube forever! Should we take it out?? :

melissa, sorry for the delay in responding. i wish i could give you concrete advice to help you make what obviously must be a difficult decision, but i think talking with other people who are in more similar circumstances would be best. have you tried getting advice from the yahoo "feeding" group that a commenter pointed out to me [1]. i'll be there's lots of people on that group who have had to make a similar decision.


By Blogger e3, at 2:27 PM  

I've followed Eric's story..and just wanted to send you bright blessings and the gentlest of hugs..
Peace, Kai.

By Blogger Kai, at 2:58 PM  

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