Tuesday, March 12, 2013

feeding tubes

We had a lengthy appointment today with the boys GI doctor. We don't look forward to these appointments since growth is something that the boys obviously don't excel in. I didn't expect to leave with such a pit in my stomach. This was when we first became familiar with the term failure to thrive. 

Its not the first time a G tube has been brought up. But today they pushed harder about it. The boys made some initial weight gains after being on the high calorie prescription shakes back in the summer but its getting harder to get them to drink them and now they are less likely to eat much at all because the shakes fill them up. I feel like we are in a viscous cycle. Without the shakes, they are not taking in enough calories but even with the shakes, when we can get them to take them, its not enough to show adequate growth. 

I'm fine with my kids being small. I've said a million times before we are not giants either. But its MORE than discouraging to see them lose weight (they weigh less right now than at their last visit six months ago) and falling further away from their own growth curve. Trust me if they EVER got on any "regular" growth curve, I'd throw a freaking party--a BIG one too, I kid you not)!!!!

As with a lot of other failure to thrive kids, there's just no clear reason why they are not growing well. Food allergies aren't helping. I'd love to go through the drive thru and pick up some really tasty high calorie laden goodies for my boys but I can't. Heck, they'd probably only eat a couple french fries and be full anyway. A lot of the other big stuff has been ruled out which makes the path to go a lot less straight forward. Hubby and I were content (at least partly) to do the wait and see. You  just hope that at some point something will click with them and make them WANT to eat. At some point, you just kind of expect that a big growth spurt will happen, not to make them six foot mind you, but hey a couple inches would suffice. 

To spend so much of your time cajoling, bribing, sneaking in calories every which way and still end up with a LOSS is beyond frustrating. Really, I left the appointment near tears because as a mom it feels really like I'm failing. How can you have not one but two kids who aren't growing, who don't want to do something as basic as eat? This isn't something you should have to stress over, and work at. Getting your kids to eat healthy, yes that is the kind of effort I would understand. Prepping for the weigh in at GI lastnight and I'm sitting there trying to woo them into eating a couple bites of a stinkin pop tart, or a single bite of cupcake with frosting. Nicholas flat out refused. Seriously, what kid doesn't want that? I still worry that I'm "breaking" my kids with what I affectionately call the pop tart and oreo diet but when I give them fruits/veggies, they fill up on them so fast so again, I feel like we can't win.

So almost four years old and Alex is 31 inches tall and not even 24 pounds, Nicholas is 34 inches and a whopping 24.1 pounds. They had both gotten closer to 25 pounds on/'off but they can't maintain that. 

I have to submit a food diary for the both of them when we meet with the nutritionist again. I don't need a dietary degree to tell them that they are not getting enough calories in. I know that. What I don't understand and may never understand is the why. When they were in the NICU they were found to have "delayed gastric emptying" and I wonder if thats part of the story now too. They eat a couple bites and are full. With those high calorie shakes, they probably never feel truly hungry. However they were only put on the high calories shakes because the bites here and bites there before that never added up to enough for growth either so where does that leave us?

They are sending the boys to endocrinology for a work up. Alex already had one at two years old and it showed nothing abnormal but they said lets look again. Nicholas has never had one so we'll see on that. My gut is telling me that nothing will be found amiss. GI tells us they really have nothing left to offer other than the G tube. Taking my emotions out of it, I understand where they are coming from: two little boys (for whatever reason) are not taking enough calories in to grow, therefore, give them a way to get the calories in and hopefully sit back and watch them do just that: grow.

If it were that simple but my stomach is all tied up in knots; Thinking about an invasive surgery for not one but both of my boys and what if I put them through all of that and for whatever reason, their bodies are just meant to be teeny tiny? It might seem sort of silly but giving them a surgical "button" seems extreme to me. They are not children that CAN'T eat/drink safely. They DO eat and drink and I don't want them to lose that drive, what little of it there is. If we went this route, how long is it typical for and what is the weaning like? I've gotten several personal messages that some kids have lost all interest in eating by mouth when they are tubed and they are on it for years with struggles for getting off of it. I've also heard stories from friends of friends that it can do exactly what you hope, get kids over the hump, get them to get growing. Ofcourse with any surgery comes the risk for complications, infection, etc. Then there is the logistical stuff like how will Alex belly crawl or get on/off his scooter board without tugging on it? I'm just having a hard time wrapping my head around this. 

On the flip side, how long do we sit back trying the same things and getting very little results and at what cost to the boys? Do we put them through the surgery and take it out in 6 months, a year if it doesn't help? Are there ramifications for this? 

If I had a crystal ball to know that this surgery would turn things around for them, give them the added fuel that their little bodies need to grow and reduce the stress on all of us, wouldn't it be worth it? 

If any one is reading this and has experience, PLEASE feel free to message me. Oh and also if you have a working crystal ball, that would be lovely too :)


ferfischer said...

My daughter has a gtube - but she cannot eat or drink safely. In your case I would get in with a good dietician/OT/both and try that route before a surgical solution! There are people that specialize in this -and you're right. GI is out of options- that doesn't mean there are no solutions!

Chaney Roko said...

Take age out of the equation and they are doing just fine... people are always too concerned with comparing kids to other kids. How big were you at 4?

Holli said...

Chaney: thank you for your comment. Yes the chart is for children their age but its not just the comparison. We are concerned about them losing weight and not getting enough calories/nutrition in.

Joy said...

We have a friend whose daughter, at age 8, was still struggling not to lose weight. She simply had no interest in food though she is able to eat and drink normally. She has been using a gtube for about a year now and seems like a whole new kid. She has the energy and healthy glow that wasn't there before. I forgot she even had a problem until I said something to her about being hungry and she said "Oh, I'm never hungry, but I'll get fed while I sleep." Sorry I can't be of help, since it isn't my experience, but thought I'd let you know you aren't the only ones.

I only had a glimpse of the weight challenges when my son lost weight from 2.5-3.5yrs. We were fortunate to find his atypical gluten intolerance and he started growing again on a GF diet. At 7.5yrs he seems to have slowed/stopped again, but he is having GI problems so we hope to find a cause, and he is still at the 20th %ile so you won't hear any complaints here.

Good luck with your decisions, the boys are lucky to have such a great mom!


Tatum said...

Hi Holli, I just found your blog when you commented on mine. I'll definitely be following. I'm wondering if you have every posted some of your questions on the FB group Pediatric Feeding Disorders/FTT/GERD and kiddos with g-tubes. It's a really supportive group and you might get feedback from moms in similar situations. My son has a g-tube but he wasn't able to even start to work on feeding until he was 6 months old and he has a nissen, so our decsion making was different than yours. I will say that he doesn't seem to catch it on as much as you'd think. Also, they make a neoprene belt that you can put over it and that would protect it from getting snagged. I haven't read your full blog, so I'm sorry if this has already been done, but I agree with the previous poster that I'd try an intensive feeding program before getting a g-tube, if you haven't done it already. Or, can you try NG for a while to see what that does to their diet. Also, on my blog, I have a post called "feeding disorders vs picky eater" that has links to a few studies that might give you some thoughts to ponder. Good luck with your decision.