04 March 2012

Ugh. Bennett's Weight.

Bennett has his CF Clinic appointment this week.  I'm dreading it.

Bennett hasn't gained any weight for about 8 months now.  He's 26 pounds.  His size 2T pants are falling off of him.  His ribs are showing, so much so that I am gentle with him when I tickle him for I'm afraid it will hurt.  It takes everything within me not to get anxious about it.

He is eating well, for the most part.  But it's just not enough.  He needs to eat 2,000 calories per day - what I eat - and he's not getting that by any means.

Up until now, our doctors have been cautious but not overly concerned.  But the longer he goes no gaining weight, the worse it is for his development and his disease.  I know this.  So I fully expect them to be concerned when I meet with them this week.

As I wrote in an earlier post, I have chosen not to get too worked up about it until we see the doctors.  But, as our appointment approaches, the anxiety creeps in more.  I find myself anxious because I realize that the decision of what to do ultimately rests with myself and Brian.  No matter whatever the doctors recommend, we still have to be the ones who decide what we're going to do about it.

Here are what I see our options are:
* Cut back g-tube completely with hopes that Bennett will get hungrier and eat more by mouth.
* Put back into place the Feeding Clinic protocol we learned this summer forcing him to eat by mouth three to four times daily.
* Utilize the g-tube more at night, which will likely make him even less hungry during the day and slow his oral eating.
* Utilize the g-tube more at night and during day, which will likely make him even less hungry and couple potentially stop his oral eating.

Our GI doctor recently suggested that we try this first, to cut back the g-tube.  But I know in my heart that this is not the best decision.  If he isn't eating now, his hunger won't convince him to eat more.  I wish it would.  But lack of appetite and issues with gaining weight are hallmarks of Cystic Fibrosis.

Putting back the Feeding Clinic protocol into place has huge ramifications for other areas in our life.  In one way, it feels much like trading one issue for another.  If we choose to do this, we will absolutely have to stop participating in many of our daily activities and will have to begin regulating meals to an almost unmanageable (to me) level.  I am very glad we now have the skills to do this if we need but I dread actually having to do this.  It seems like a good idea on one level but it's incredibly disruptive to our entire family on another.

I expect that the doctor is going to suggest increasing his night time feedings.  This is very doable and something we are happy to do.  But we know that his day-time eating will suffer.  Night g-tube feedings can significantly affect the daytime hunger pattern.

The worst case senario is to use the feeding tube at night and during the day.  I don't expect this to be the case, at this point.  But, if Bennett chooses to cut back his daytime eating even more, it can be a slippery slope that causes us to have to increase feedings during day and night.

One of the things I have to do is to remind myself that Bennett isn't physically a normal child.  He has CF.  This isn't going to change.  And while I'd like for his life to be as "normal" as possible, normalcy comes behind being healthy.

So, I have to face my fear that we're going to need to increase his g-tube or even put the Feeding Clinic protocol back in place.  I know that I must focus on the overall goal of keeping Bennett happy and healthy for the future, not just what makes sense right now.  But it's hard to do as there are so many things we must balance, between Oliver's needs, each of our needs, Bennett's emotional/social needs, etc.

Brian and I would greatly appreciate prayers with regards to wisdom of what to do in this situation.  Our prayer is that the doctors will have helpful suggestions on what to do, and that what they recommend will not be something that jeopardizes other needs we must balance in Bennett's life.  We just want to make the best decision for Bennett, as well as for our family.

It feels like we've been here before.  And we have.  And, I'm afraid, this isn't going to be the last time we're here again, I'm sure.  But each time we're here, it doesn't seem to feel much better.  Decisions are tough.  It's tough to fight this beast that is wanting to swallow up my child.



  1. The weight stuff kills me at times. I know your situation is different though. As much as the g-tube can prevent him from eating a lot during the day it's so nice that you have that as a "back-up" even if it isn't always the best answer. Have you tried giving Bennett pedisure and cutting it (thinning it) with milk? Madeline is at the age where she doens't want to spend a ton of time eating so instead of trying to get her to eat volume, we have to just "beef" up the meal to make it all super high calorie and fat. For instance- Madeline HATEs to eat breakfast. So, i buy Entenmanns chocolate donut holes. I break them up into tiny pieces and if she eats 2...i call it success. 2 of THOSE donut holes have 12 grams of fat! They are small and quick. She gets the fat...and we move on. Sometimes I will eat have her play and visit the coffee table for a minute snack. "come here and take a bite" over that hr long that she has. usually she drinks some milk/pediasure with those donuts but they provide a very SMALL meal with LOADS of fat/calories. We give Madeline 2-3 milk/pediasure drinks a day as her main drink and then she has her entree. The shakes are thick which is why we add milk and then flavor them with strawberry syrup (another 100 calories). The shakes (which tastes like milk since we thinned it) usually end up being 370 calories and 14 grams of fat alone and then we give her the entree. So even if she drinks the shake...she is still getting a "MEAL." It took us awhile to get her use to the shakes...She didnt like them at first. But after following her for weeks with it at every meal she got accustomed to drinking them and now she does it completely on her own. If it wasn't for the shakes...she wouldh't be gaining....toddlers just dont want to sit and eat tons of food...and I cannot blame them. Dont beat yourself up. YOu are a great mama and I am sure you will find something that works for Bennett!

  2. I will keep you, your family and especially Bennett in my prayers as you go through this very difficult journey with Bennett's weight. The weight issues are familiar to us with Olivia and I know the anxiety, frustration and disruption to life that fighting this battle can cause - it is pure exhausting. Please know that my prayers will be with you. I pray that you will find something that works for Bennett and your family without disrupting the normalcy you have and especially for your strength as you continue to try to get Bennett to gain weight.

  3. Dear Breck,
    As a CF mom, I can totally relate! If it helps at all, our son is in the exact same boat. We don't do nighttime feedings, but we give him extra nutrition through boluses in his Mic-Key button after each meal. We aim for 2-3 cans of Pediasure 1.5 with fiber, on top of regular meals and snacks. Lots of days we don't get more than a few bites of macaroni or chicken nugget in as the actual meal, but we're always trying. And our son is up to 29 lbs, so we know it can work!
    Take heart. You are all so strong. I've been reading your blog for many months, and taking heart from what you've written. You're a great CF mom!
    Big hugs,

  4. Anxious to hear how B's appt goes...

  5. I'll keep all of you in my prayers! I totally understand the frustrations of weight gain. I hope that you and the doctors can find the best possible solution for Bennett.


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