Feeding Tubes and Pediasure: Dealing with the Unexpected
When my boys “play doctor” with their toy stethoscopes, they do it just like the real doctor and listen to their belly. That’s what stethoscopes are for, right?
Roo had a feeding tube surgically placed into his stomach last July, because he wasn’t able to eat enough to survive. Within a week, his overall anxiety was down and his sleeping improved. Within a few months, he shot up from the 3rd percentile in height and weight for his age up to over the 60% percentile!
Last summer, Roo takes a break from playing in the backyard to help Daddy with "noodle frosty time".
Roo has been in eating therapy most of his life. The doctors exhausted a long list of tests on his gastro-intestinal (GI) tract (with no conclusive results) before deciding on the surgery. Even without a diagnosis, the symptoms couldn’t be denied; he had nearly stopped eating altogether. Drastic action was necessary.
Bear (Roo’s biological and adopted brother, younger by 12 months) also had eating troubles, but early onthey didn’t appear to be as extreme. But few a months before Bear turned two, his trouble with eating became slowly and steadily worse. We are thankful that he still agrees to drink Pediasure from a bottle several times a day, or we would be looking at the possibility of a feeding tube for him, too. He has benefitted from what we learned from working with Roo.
Currently, this is what a successful lunch for Roo looks like. He has carefully picked the cheese off of an entire pizza, and consumed some of it. He has also chewed on several orange slices, and consumed some of that. What he can't manage to swallow he spits out into a napkin.
Currently, Roo and Bear are in feeding therapy with an occupational therapist once a week. In addition, every meal and snack time is its own home feeding therapy event. We tend to call them “eating opportunities”‘ rather than “meals” because it feels less pointless that way when neither boy eats anything.
There is still no official diagnosis for either of them, other than a recognition of “sensory processing issues.” It’s generally accepted that these issues stem from some combination of biological make-up, non-existant pre-natal care, exposure to toxins in the womb, and prematurity.
Lunch is usually the best meal of the day for them. The “best meal of the day” means that Roo actually engages his food, enjoys his own unique attempt at eating, and often consumes enough calories to avoid his post-lunch pediasure tube feeding (which we call noodle frosty time). For Bear, this means that he might acknowledge and touch some of his food, and may actually consume a very small amount of food. He takes a 9 oz bottle of Pediasure before nap each day.
Yes, this has involved a great deal of ”learning by momosis.” And yes, it has a lot to do with learning and applying medical information and techniques. But it also involves a lot on the emotional side.
Earlier this week, a successful lunch for Bear meant that he touched some of his food, perhaps put some in his mouth, perhaps chewed or swallowed some of it, and then plays with stickers willingly at the table (allowing the rest of us to actually eat).
We have a deep set expectation that we must feed our children, so how do we feel when they just don’t eat? I have friends who have experience similar distress when it turns out that breastfeeding isn’t this amazing, blissful, intuitive event… and their baby isn’t gaining weight like the doctor wants.
What have you experienced when the “basic tasks” of motherhood turn out to be incredibly difficult or impossible for you? Or you discover your children have high or special needs? Will you share a story with us?
It’s my hope that the readers of my blog will find emotional support and relief from what I post, and also through the comments shared by each other.
It doesn’t need to be as dramatic as my story. I think there is a different twist on this issue when you a “typical mom” of “typcial children” because everything should be going “typically.” And by “typical” I mean the insane standard of the endlessly bliss-filled, joyful experience of motherhood, of which we wouldn’t trade a single minute…
P.S. - Was this blog entry too long or did you happily make it all the way to the end? I couldn’t figure out how to make it any shorter! I have more to say on this, but I have to remind myself that this is a blog entry, not a book. :)
Thanks for sharing…I wondered what you meant when you said you had children with special needs. That can mean so many things. As a special ed teacher I am always interested in learning about children with these different challenges. I thought the length is fine…whatever you want to say is fine, I think! I will continue to read what you have to share!
It’s amazing to me that when eating goes well, it’s not something we think about. At all. But when it goes awry we feel that we’ve failed at providing our children with the most basic of needs. Maslow’s hierarchy and all that. How can our children have anything else if they are hungry.
I can’t even begin to imagine what this is like for you all.
Of my 3 children, one is “typical” and two are “special”. They all leave me standing amazed (and admittedly frustrated too). For all of the struggle there remains this undescribible deeper than deep love. Our struggle is not with food, but communication. Our hearts were broken to realize one of our children couldn’t understand the launguage or culture she was born into. Like another reader posted, it’s so basic we take it for granted until it goes wrong. Autism… went wrong. Early intervention… went right. Our family finds new hope every day and some days I even recieve the gift of a real converstion with my previously “lost” little girl.
One of the difficulties, from my perspective, has been living with a situation that doesn’t really “fit” into any typical medical definition, and thus it seems, doesn’t really exist. At least in the eyes of many in the medical community. While Roo was lying in his bed at Children’s recovering from the sugery to put his tube in all Mr. World Renowned Physician can say is “he wasn’t even losing weight…” Eff you. Our little boys seem so normal to the casual observer they have no idea. No. Idea. Which I why I’m so thankful for the few professionals in our lives who have been able to think outside of their own professional box, listen to us and have been so good for Roo and Bear. Yes, I mean you Ms. McCarthy…
Hubby, this is so true and sure to be the rant of some blog entries in the future! There’s nothing like having kids that won’t eat, and having some “professional” who has known you for 2 minutes give you THE LOOK which says they figure it’s probably just because you aren’t feeding them correctly. !@#$%
It is such a blessing for me to have 3 replies right away from: Shar, a good friend from gradeschool; Netti, a good friend from college; and pds, a good friend from post-college. Thank you, facebook!
Thank you for taking the time to share what your family struggles to accomplish on a daily basis. Your blog entry shows the power of listening. But listening can’t happening when sharing doesn’t happen. It must be hard to share when it is painful, personal, and has been discounted or judged when shared in the past. WHICH IS WHY YOUR BLOG IS SO IMPORTANT! We are listening, Naomi. And I hope it will encourage more sharing and more listening.
My story is “typical,” but very scary to me at the time. I expected nursing to hurt a little for a time. But it hurt so bad that I would flinch and dodge when my husband was trying to help her attach the way the nurses showed us. I suffered through to find she was losing weight. When I gave all I could and it wasn’t sufficient I was devastated. Encouragement from blogs was really helpful at this time. I think because it was advice without “tone,” judgment, or expectation. Just people sharing from their experience.
so many things ring true. One is from your hubby’s comment on remarks from the medical profession or strangers and their comments. It’s so hard to hear people say things, because there is so much stress, fear, anxiety, failure, shame, that rises up when people say things. For me, both my daughters were (one still is) breastfed, but my youngest is a small girl. She was born two weeks early at 6lbs 2 oz but completely healthy. For me, it’s comments from people when they say, “She’s small (insert tone)!” There are many ways I want to respond, but don’t. The harder part is I had difficulties with my first in nursing and my second everything seemed to work. I was so relieved, b/c she was gaining well…until her 4 month check-up. She dropped a bit and the doctors made me question my abilities, scared, and so much more. Why God can these other women produce enough for three babies and it seems like I can’t produce enough for my one? Or am I producing enough and she’s just small? Why do people equate small for being unhealthy and big Michelin baby for healthy? I know my experience is a bit different from yours…that’s how my adjustments have come to light.