This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

Dr. Tuggle, you saved my life!-Eli

Dr. Tuggle, you saved my life!-Eli

Dr. David Tuggle, who I like to refer to as Jesus Mechanic of Baby Guts, met us this morning for Eli’s follow-up appointment.

“Thank you for saving his life,” I said. I’ve probably thanked him about 20 times.

It was all in a day’s work for Tuggle.

Tuggle took a look at Eli’s scar, which has healed nicely, and said I can yank out the stitches if I want. We can finally stick buddy in the tub, too.

The visit lasted only a few minutes – Tuggle is a busy man.

However, I made sure to get a picture of little man together with his intestinal mechanic. I actually took a pic of Tuggle in the hospital last time, but I took it on the new Vine app – video made for Twitter – and the darn thing was somehow deleted.

Eli’s gut condition entailed a swollen small intestine packed with meconium and an underdeveloped colon. It’s name: meconium ileus.

It is serious and can be deadly. When Tuggle delivered the news that Eli needed surgery right away, I dissolved into a glob of messy-sloppy.

We’ve come a long way since then. Buddy is doing great. Mommy has regained her sanity.

Buddy displays his scar almost a month after surgery.

Buddy displays his scar almost a month after surgery.

While we were in the hospital the second time around, I met a mother whose son was also born with meconium ileus. She was little man’s nurse. Her own little man’s bowel obstruction perforated, leaking poo into his body, and he became septic, meaning overwhelmingly infected. Her child coded twice shortly after birth. Because there was a hole in his gut, it had to be rebuilt. He had a hard time eating after surgery – he couldn’t eat quite right for a year, she said. Her son would scream out in hunger – she’d crawl into his crib with him, giving him sugar water all night. He threw up every third or fourth feeding for a year.

Her son was one of the lucky babies, though. Not only did he live – he’s 6 now – he had no underlying condition.

He had meconium ileus but he did not have cystic fibrosis, even though a distant cousin of hers did have the disease.

Eli’s recovery from gut surgery was nothing like the nurse’s baby’s. He eats like a bottomless pit, poos like a champ and tops 11 pounds as of today.

The human body is a crazy thing.

Now, we’re going to turn our attention toward our wee lady, Laila.

She is getting a genetic test tomorrow to rule out cystic fibrosis.

She was screened at birth in 2010 and it came up negative. Eli’s screen was positive.

Tomorrow she’ll be getting a sweat chloride test, which I’ll explain later. It’s a better diagnostic tool than the newborn screen.

Laila doesn’t cough. Her illnesses don’t linger. CF is unlikely. But, she’s small. She’s always been small. Being teeny can be related to CF, since the body doesn’t absorb nutrition right. Or she could just be little.

She doesn’t eat and eat and not gain weight – she could basically give two craps about food. I don’t remember her crying out in hunger as a baby. Eli starts screaming the second he wants to eat. Every meal is a battle with Laila.

Laila, posing as Andy Rooney, says 'meh' to food. "The problem with food is...bla bla bla..."

Laila, posing as Andy Rooney, says ‘meh’ to food. “The problem with food is…bla bla bla…old man-ish complaints, etc.”

Yesterday, our lunch entailed her being sent to the corner for playing with her food, not eating and not listening. Then I directed every bite:

“Laila. Put the sandwich in your mouth. Bite it. BIG BITE. Chew. Do not spit it out.”

The ordeal, otherwise known as lunch, lasted almost an hour.

She got down a half of a yogurt, a half of a little burrito and a few pieces of avacado. That is a big meal for her.

“Good job, baby. Do you want some icecream?”

“No.”

What kind of kid doesn’t want icecream?

Mine.

I’ve been giving her kiddie Boost protein shakes this week after meals.

Her doctors have never been concerned about her size- I just flipped out after putting her in ballet and noticing she was by far teensy weensy compared to the other bbs.

The human body is a crazy thing.

We hope she doesn’t have CF.

We are terrified.

She is happy because she’s a happy little girl, as displayed here:

Happy Laila

Happy Laila

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3 thoughts on “Tuggle time

  1. Luke is the exact same way — and 31 pounds at four and a half. Some kids just don’t eat!

    Like

    1. j&m says:

      Laila didn’t even care about food when she was a baby. I’ve always had to make her eat…btw just got a cookbook called ‘mom 100’ It is amazing and I think I’m going to cook up some delectable recipes for Laila that she’ll probably hate.

      Like

  2. Pam says:

    Please let me know how the tests go tomorrow. I am glad Eli had a good appointment. Yea

    Like

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