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Update

Tuesday, July 5, 2011

I took Bennett to the Pediatrician to be weighed today.  He weighed 25 lbs, 10oz, down from last week by a little less than a pound.  I wasn't surprised.  He's been refusing his drink lately and overall eating less than he first did when we came home.

I sent his weight (and a record of his current calorie count) via email to the Baylor Feeding Clinic Dietitian.  I will hear back in a few days about what we should do next.  There is a good chance we're going to have to increase Bennett's nightly tube feeds.  We shall see.

The Feeding Clinic was awesome but trying to replicate that system at home is hard.  There are times when I want to give up and skip a meal - or just pretend we don't have to do this - or consider trying to change the feeding protocol so it fits better with what I want to do.  But this is what it means to be an adult -  and a parent - to do what is right, not what is easy.

I *love* not having to hook Bennett up to the feeding tube during the day.  But there are moments when I consider how easy the feeding tube is in comparison to these feedings.  Sacrifices are having to be made in order to make sure these feedings are done correctly and on time.  We, as a family, are tremendously less mobile now.  And the rhythm of our day is built around this 8am, 11:30am, 3pm and 5:30pm meals.  However, we still feel it's well worth it in the long run.

I hugged Bennett today when I took him down from his highchair after a meal.  He hadn't eaten well.  He would put food in his mouth but he refused to chew it, even spitting it out at one point.  I wanted to be upset - I wanted to sit and rationalize with him why it's important to eat and how we only want him healthy.  But I realized I couldn't.  I kissed his puffy cheek and said to him silently, "you have no idea what you're parents do for you because they love you so much."

Sometimes, it's hard not to feel trapped or frustrated by my sons' needs.  But, wisdom reminds me good things are worth waiting for.  The time spent caring for my boys is well worth it for what their future will bring.

6 Responses to “Update”

  1. breck -- i keep thinking about you and your lovely boys and this feeding therapy business, which breaks my heart and hurts my brain each time.
    you are sacrificing so much, based on one method, a method which apparently is not working so well.

    i know you have this protocol, but what if, what if... what if you could let bennett explore food on his own terms, feeding him when he's interested, letting him eat as much as he wants to, without any distraction or timed sessions in a high chair by himself? what if eating was allowed to be, at whatever slow pace, a JOY for him and for you? what if your family could go anywhere, because there would be no screaming (as you once said in a post), and bennett could eat as much as he was able, and then would get the rest by tube, in a relaxed way? what if you kept his button, until he got old enough to understand that with his condition, he needed to eat more than his friends and brother? what if you could go back to your vision of motherhood, which is so beautiful, without bins of plastic toys and TV to be used for "bites" and "drinks"? what if he could be a kid and blow bubbles in his milk? (unless milk bubbles annoy you! :-)
    what if you didn't have to pass judgment on whether he ate badly or well? didn't have to feel guilty over whether you were strict enough or not? what if your family no longer had to endure these feeding sessions, all of you, especially given the known harmful effects that stress and sorrow have on body and spirit?

    i know that you are following a program. but as in all of medicine, many treatment plans are *opinions* and *options*. rarely is there one way to do something, or one explanation the only right one.
    after all, what if bennett himself was trying to tell you something when he stopped drinking -- that he was scared, that something was not right. not because he was not complying, or having a behavioral issue (as your feeding clinic assumes about refusals, unless shown otherwise), but because he had a good reason not to drink? (that said, i hope your swallow study comes back ok. but if it does, how are you going to tighten the protocol? and what good, i mean good in your heart and his heart, will it do?
    a feeding clinic like this treats food as a prescription (so many mLs at this time, all counted and weighed, etc), and, to me, does very strange things to the mother-child dynamic and to a child's own understanding of what food is for. aren't food and eating also family time, and pleasure and joy, and the ultimate act of becoming one's own person? why can't bennett just eat how he is able to, in your loving and joyful presence, and being given the rest via his life-saving tube, at least for now?

    i apologize for being so brazen, i'm just writing from my heart this time, without any holding back. i think about your situation a lot. i feel for the suffering you and your child and your family are going through. there are other ways, less traumatic, ways that don't make you forsake your mother's heart.
    with deep compassion, and much love to your little ones,
    - olga

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  2. btw, a few links to discussions i've had on that feeding group on NING, including with dr. markus wilken, who is too modest to call himself an expert, but he really is an amazing, "look through the child's eyes" kind of guy.
    markus wilken's lecture to the physicians and parents at seattle children's hospital (long, but WOW):
    http://tubefedkids.ning.com/forum/topics/markus-wilkens-lecture-link-to

    what i learned on my vacation trip to two european feeding clinics:
    http://tubefedkids.ning.com/forum/topics/reposting-overview-of

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  3. Breck,
    I think you are amazing. Please let me know if I can do or bake anything for you or your family.

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  4. you are so amazing! This has to be so frustrating, not to mention every other time consuming thing you have to do to keep his CF at bay. We just cultured Psuedo and are starting TOBI a 3wk on 2wk off /3 month cycle...this will make 7 breathing treatments per day now...sometimes I get afraid if I can handle having another with CF....if this baby has CF -would I be a fun mom at all anymore? Or would I just be moody about this or that....I know that it will all work out the way it should and I will find a way to make it all work...but sometimes I do feel "trapped" by all of these things that make up our day living with CF. I too would like to run away with no meds, no enzymes or anything...wow....how amazing would that be?

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  5. and in fairness, for you have allowed such a look into your journey, here's us, when zander was weaning at home (at age 20 months)
    http://www.youtube.com/watch?v=J0_FqbT6fRU

    and another night from our wean
    http://www.youtube.com/watch?v=kHnjuPg1llw

    and from just recently, with home-made playdough, pretending they are cookies:
    http://www.youtube.com/watch?v=A7ZUCkX_mVA&feature=related

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  6. Keep up your good work. I know the feeling...of wanting your child to eat more and dealing so badly with those frustrations when they don't. Hold your head high- you are a patient mama who is doing what is best for Bennett! Time will play it forward for you- years from now Bennett will be thriving...all because of you!

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