I am so defeated with Peanut's eating and feeding and everything GI related!! She can eat by mouth. She has the oral skills to do so. Sometimes she even seems to WANT to, until the food actually gets near her mouth. Sometimes she will rub her lips on food, like my Chili Cheese Fritos last night. She will not ever ever open her mouth for food though. If I squeeze her cheeks just a tiny bit she will open her mouth and I can pop something small in. Some of the time she will chew it and swallow it just fine, other times she just sits there looking miserable, drooling a ton, until it finally drools out. On this front, we had a feeding evaluation two weeks ago and are waiting on authorization to start back up in feeding therapy. From there we will probably be admitted for an intensive feeding therapy program.
Then there's tube feeding. I hate tube feeding. I hate feeding my child through a plastic device implanted in her beautiful soft stomach. I do know that it is what keeps her alive and healthy, and for that I am thankful. It's just so UGH!
She has been getting a blenderized diet for half her daily nutrition for a few months now. With the help of the dietician, we bumped it to 2/3 of her nutrition is food and 1/3 is formula. We're now down to only 8 ounces of formula a night, and the dietician is working on a recipe of food to get her completely off the icky unnatural Neocate Infant. It's the only formula she tolerates.
I keep telling myself that she is tolerating this well. Her hair and nails are growing like CRAZY on the blenderized food. It does make her more constipated, so she's back to a daily dose of Miralax, but she's pooping daily now.
I am lying to myself. She's not tolerating this 2/3 food and 1/3 formula diet at all. She's retching, waking up choking, spitting up on the bus to school, fussing a lot more than normal, and on and on. I tell myself it's because it's so hot lately, and she doesn't do well in heat. I tell myself it's because she has to get up earliere than normal for summer school, and after all morning is always her worst time.
I admitted to my husband this morning that this isn't working. It is what *I* want. If I have to tube feed my child, I want it to be FOOD. That is somewhat more normal. But she doesn't like it. And in the end, it's HER tummy and GI system that is dealing with it. My heart may like it, but her body does not.
So we are going back to the 1/2 baby food and 1/2 formula schedule, to see if she goes back to baseline. If not, I will have to admit defeat and go back to all formula.
Sometimes I hate that my heart wants what it can't have. :(
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
8 comments:
We are going to take the katie beckert waiver in, they never told me about that. Of course.
I totally know what you mean with the tube feeding, although I don't mind it now, when he was a baby it made me crazy to think that I couldn't breastfeed my baby. He actually got quite good at breastfeeding, then went into the hospital and on the ventilator for 4 months. I finally gave up pumping when he was 7 months old, knowing that even when he got off the vent he wouldn't be able to eat by mouth.
Wouldn't it make all of this a whole lot easier if we didn't have a heart?! If I could just go through the motions and not have any feelings, this would be so much easier! Of course, then I wouldn't feel this incredible love for my child either, so I guess that's a bad idea, but I understand! My heart wants so much for my child, but reality doesn't agree!
I'm so sorry that this is bringing you down! I pray that the feeding issues will improve!
Have you heard of the formula called Compleat Pediatric? Gavin was put on this about 9 months ago. It is "the real food" tube feeding formula. It's a blenderized formula made with foods for patients with intolerance to other formulas. It provides nutrients found only in real food. It has chicken, peas, green beans, peaches and cranberry juice in it. It also has Benefiber soluble to promote normal bowel function. And it's lactose free.
I feel like I'm doing a commercial for it! :) Anyway, it's made by Nestle Nutrition.
It has been great for Gavin. He still gags and spits up daily, but it's not as bad as it used to be, and he is very regular. He hasn't been constipated at all since being on this.
Hoping and praying for solutions and also peace for your heart! HUGS!!!
Oh Mama, I SO feel your pain on the feeding issues. I'm praying for you and Peanut that the right combo is found and it is something you can both live with.
Feeding issues are at the top of my "dont like special needs list" Its so hard to want something so much for our sweet kiddos, and it just isnt to be.
Thinking of you Mamma!
Feeding...has got to be one of the most difficult issues we have faced. It is something that you have absolutley NO control over.
I get it...I do.
Sorry.
I like the honesty part...that sounds all too familiar. :(
I so much am with you on this one. Except for this: I wouldn't drop all the way down to just formula forever, because maybe it's just certain foods that are the problem. NOT that we've figured out all of Mallorie's problem foods, but we have learned that grains are NOT tolerated. Neither is benefiber, metamucil (all my attempts at semi-"natural" ways to keep her moving with fiber). And I think we just figured out this week that peaches are better for her than applesauce. I was stuffing her with applesauce every morning, ignoring that the pediatrician had even told me that applesauce can be constipating. I didn't believe it. It wasn't till someone on the blenderized diet group I joined said something about it being constipating and peaches and plums being better, than I made the connection. Duh. Also, we have to give LOTS of free water or pedialyte. For Mal's weight, she needs like a liter of fluid per day, and a bit more if she's getting lots of solids. If not, we are doing the gagging/retching/vomiting/refluxing/constipation game.
I signed in only to say: "I'm sorry." But when I started writing, I realized I more than that wanted to say, don't be discouraged. You'll get it over time. NOTHING wrong with taking a break and backing up to a formula that you already know does work for her, but that doesn't mean you won't get there eventually.
It is hard... luckily feeding has never been an issue for us. If Marie had the strength she'd be okay, other things are our hurtles. I just wanted to say I understand how your heart hurts, it sucks. You're not alone though...
hugs!
What I wouldn't give to just hug you... To ask you about all the things you LOVE about Peanut. And to share a tear or two about feeding and cathing and ...
But, a hug. That is where I would start.
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