Friday, June 1, 2012

Forgive me while I vent.

I'm going to take a very short moment to feel sorry for myself.  I don't need anyone else to feel sorry for me.  I just need a moment and then I'll go back to seeing the beautiful things around me instead of the awful.

Here I go.

I hate that I cause my son pain just by feeding him.  HATE it.  

I force feed him via his feeding tube.  Of course he doesn't want to eat.  It HURTS.  And yet we put him through feeding therapy; we try all the tricks in the book to get him eating.  He doesn't hate us for it.  He tries.  But then he stops, because it HURTS.  So when he doesn't eat by mouth, I put it down his tube, and it hurts just as bad, only instead of hurting himself by eating, it's his Mommy who hurts him.

I only do it to keep him alive, I swear.  When we know that he's certain to throw it all up anyway, we just don't feed him (like at church).  He likes it better that way.

He had another scope on Tuesday and we got the biopsy results this morning.  The eosinophils are back.  The only foods that are changed from his last scope in November, where there wasn't a single eosinophil, are the formula (switched from Elecare [an amino acid-based formula] to Gerber Goodstart Gentle [a dairy-based formula]), peaches, pears, and sunflower/safflower/canola oils.  So he's reacting to at least one of those.  It's most likely the formula, since dairy is such a common allergen, so starting today we're trying a new formula.  But it could also be one of his other foods, since at the time of his scope in November he wasn't eating much other than apples, grapes and sweet potatoes, even though chicken, rice, tuna, and white potatoes were also allowed.  He just hardly ever ate any of those because he was vomiting so much that eating wasn't appealing.

So, for the past 6.5 months, Caleb has been in pain every single time I feed him.  That sure makes me feel like the mom of the year.

So much time wasted.  That's one fifth of his life.  I hate this guessing game.  I hate this disease.  I hate that my little boy has been so sick for so long and we never really knew.

Please, oh, please, just don't tell me that I have to take potato chips away from him.  It would break his sweet little heart.

There is something seriously wrong with my life.

The end.


Katie Bradley said...

You deserve to vent at all hours of the day. It stinks that you all have to deal with this and it stinks Caleb has to be in so much pain. But you're doing everything everything you can to make Caleb thrive as much as possible- I think that DOES make you mommy of the year.

Niki said...

Does it kind of make the NICU seem easy? Millie still had heart and eye surgery, loads of blood transfusions, and feeding problems but I always knew the situation would likely end in March (though it took until April) and I felt confident she would survive. I only briefly considered lingering problems after the NICU. Having to live with this feeding situation, especially for so long must be so stressful. As moms we're so good at wearing it completely on our own shoulders, too. You're doing great.

MeganandClaudy said...

you are such a trooper. It's only human to need to vent every once in awhile. I think as long as you don't dwell in it, then it's healthy. You do so much and put up with a lot. You are such a great example of a loving mother who does what is best for her son, even when it's hard or super unpleasant. Hang in there. I hope things will start to get better for both of you.

Heather said...

Wish I had read this before I complained tonight! You know we love you guys and pray for Caleb all the time.

Valerie Hill said...

The disease is tricky, and the symptoms are awful. I feel and understand your you'll see on my post. Things will get better, its this awful game of give and then take away. Its hard. I wish we didn't have to do it, and I wish the kids didn't have to go through it. Sometimes I just wish that I could let it go and stay where we are (in a good place with only 5 foods) and let go of the guessing game. Lots of *hugs*