Titus Update: The Break
Tonight will be our 6th night to sleep in chairs here at Children’s Hospital. Same as at home, when the little eyes finally close, Seth and I crash and process what we can.
I keep thinking about last Sunday at church, how all I could repeat in prayer was, “I don’t want to break.” After telling a friend about my weariness, she said that maybe that’s exactly what I’m supposed to do – let myself break. I’ve realized that one of my greatest fears is losing my mind, my understanding, and my faith – that I would ever reorient so much that I question God’s goodness. I tell myself that if I break, I might lose all three. Oh but I know I am not the one in whom all things hold together. I am free to shake until I burst open.
The day before yesterday, Titus had thrown up all his meals from afternoon through the night, and his glucose plummeted. The room settled after we thought surely he wouldn’t keep getting sicker. It was 4:45 AM. Seth encouraged me to sleep, so we can stay well, but I finally held his worn-out body and wept. I talked to God. I said words like “Glory.” I said words like “trust.” I said, “no matter what.” What made me break was God here like a roar, how the weak place is the syphon for glory. I sat in a place I could hardly bear. Then I closed my eyes and took a morning nap with Titus stretched out on my chest.
The next morning, all the doctors looked confused and called him a mystery, a puzzle – after this many days. His genius, loving, and highly qualified team had several meetings to discuss a new course.
They changed his feedings to drop by drop through his feeding tube – continuous feeding. He was to receive 40 mls of elemental formula an hour for 4 hours. At the end of that period they were to remove residual fluids from his tummy. We found out that his feeding did not get distributed through his body. Much of the milk was pooling up in his tummy, so that’s why he continued to reject feedings. They removed what was pooling up and continued to feed him, so by this morning, he had gained weight!
Today they lowered his feeding to 30 mls an hour, and the last feedings have shown no residual fluid in his tummy, so I think that means he can only digest about an ounce of food an hour. Now we’re in a position to move forward because we know what he can tolerate. THIS IS HUGE.
In the meantime, Titus has proved what a bruiser he is. He ripped out his 2nd IV, which isn’t cool because often it take 3 and 4 tries to get one in him. Then at one point today he lunged toward me inside his crib and busted his eye wide open. He bled everywhere and wore about 4 nurses out while they tried to clean out and put butterfly bandaids on his eye. They totally gave up on replacing the IV. Titus is his perfect name. When he’s not kicking and screaming, he’s smiling and blowing kisses.
Now we pray for the doctors to find out why his body is not distributing food appropriately so they can treat it. We’re waiting for more test results to come in, and on Monday we’ll do an MRI to make sure it’s not his noggin telling his tummy to act that way.
I cannot express how grateful I am for the messages and cards and food and visits and calls. This room is a circus, and I just wish I could show you my heart, how loved we feel and grateful we are that you’re carrying us how you are. Seth and I love you so. Thank you for praying.