Sadness

Tonight a sadness engulfs me as I cry in my bedroom.  Today's meeting did not go as I wanted, and in fact, I've got a lot of things to work out in my head, dealing from anger to sadness, to just being more overwhelmed than I have ever been in my life.

I went in today to the meeting with the full expectation that they would see that she can eat small bites, and would immediately book her into the hospital to begin the tube-weaning program. Well, first of all, insurance only covers four days of these programs, and second of all, she is nowhere near being ready to be admitted to an intensive tube-weaning program.

In front of the one sided mirror today, she ate a few bites of macaroni and cheese, half of her smoothie, and a few bites of an apple. We were thrilled. Surely they would notice just how awesome she was eating and see that she is ready.

We were wrong. Soooo wrong. I was wrong in how I thought they would want to wean her. I was wrong in everything.

This is what we learned: No matter how much you starve a child, if they don't have the skills to eat, they won't eat. We knew this before we got her g-tube, we knew this when people would say, "Just get her really hungry! She'll eat! A kid won't let themselves starve!" I knew how wrong they were, and somehow I thought that she had the skills now. As they began telling me that her little bites of only four foods that she will eat is not skillful enough to eat when they starve her, I began seeing that they were right. She pockets her food. Every bite takes such energy. It scares her.

So they gave us OUR NEW PLAN. I hate it. I hate everything about it. I hate that it is going to run our lives. It brings me back to days before Sweet B was on a feeding tube, and we spent hours and hours trying to feed her by bottle, and when she went on the feeding tube, we continued to try to get her to eat orally at every meal. And did therapies. And doctor visits. And basically I lived my life holed up in our little rental home, devoting my soul to getting her to eat, and roll over, and keep her from getting sick, etc...I gained weight. I had no activities that I enjoyed. I didn't leave the house. I had no friends.

These days I have taken up my health as a big hobby. I cook healthy meals and I exercise and it keeps me sane and happy. I go to Weight Watchers meetings and I'm seven pounds from my goal weight. I have friends. I go to church. I am a part of two moms groups. I take my son to tumbling and Sweet B goes to dance. Sure, she still goes to the doctor often and I still tube-feed her three times a day and offer her food several times a day and feed her overnight through her pump. But it's doable. With OUR NEW PLAN, I'm afraid that I will lose myself, that I will lose the relationship with my toddler boy, and that that I will see my husband even less.

OUR NEW PLAN (summarized...really, it is four typed pages)

-They want her off of her overnight feed as it is not natural to eat while you are sleeping and supposedly keeps you from getting hungry throughout the day. So we must slowly add ounces from her overnight feed to her day feeds. The problem with this is that she gets 30 ounces of formula. I do not know if we can put 30 ounces in her tummy over 12 hours without her going into a retching fit and killing off any desire to eat orally. Other feeding teams believe in keeping the overnight feeds to supplement, but not ours. I don't know what I believe. I suppose it's different for every child.
-I will be doing FIVE separate g-tube feedings throughout the day, as well as FIVE FULL MEALS consisting of one preferred food and one new food. Then the 6th g-tube feeding is to be her overnight pump until we get her off of that. *I also have a toddler son. He will of course be in on the five meals, but the g-tube feeding and all of the venting that that requires for each one, will require him to be able to entertain himself, which is impossibly difficult.
-They want me to subtract some of the calories she eats orally from her tube-feeds, but not all, since they want her to grow even more and get a bit chunky.
-I will be taking her to her doctor for WEEKLY weigh-ins. What will I do with my son during this time? I don't know.
-I am to only let her eat the same food once a day, the rest has to be slightly different. A different brand of mac and cheese, a different flavor of yogurt, etc. The goal is to get her to eat a wider variety of foods so that when she is ready to go into the intensive feeding program, she will have a list of foods to eat. They said a large part of wanting to eat is knowing variety and getting excited about different foods.

I understand what they are trying to do. I understand why they no longer want me to talk to her about coming off of her tube. I understand why this must go slowly. I understand. But it still makes me cry.

I wonder when I'll see my friends, when we'll have play dates, if I'll be able to attend the functions at church that I so desperately need. What about my Weight Watcher meetings?

I know that the answer is that I have to. I have no choice. I am praying that God will make this bearable for me. That He will give me help. I pray that I will keep up my commitment to myself to lose my last seven pounds and continue my exercise programs. That's why I'm having my foot surgery tomorrow...as a commitment to myself.

I've had times where I've handled all that Sweet B needs with grace, and I've had times where I've gone off the deep end, losing myself in the process.

My desire is that in a few days when I blog again, I can see the good in this and I will see that I can still lead a full life, whatever that might be for now. I pray that I can see that I have the strength to do this, and that I can be a loving and attentive mom to both of my children. My heart breaks for my boy. I want him to feel special and that his attention needs are being met. I'm just so overwhelmed and sad.