Military Special Needs Network

Proudly Supporting all Military Families with a Special Needs Dependent

A Life Not How I Imagined

photo 1

“I knew I couldn’t hate anything that helped him.”

I sat there, numb, as the speech pathologist began explaining the different types of feeding tube buttons available. She continued to talk about bolus feedings, decompression tubes, and a number of other terms I wouldn’t understand until days later, after the shock wore off.

After three weeks in the NICU, the swallow study was only supposed to prove a small amount of aspiration. It was supposed to finally give us the answer to why our little Jack was breathing in the 100s. We were supposed to only need to thicken his feeds so we could finally be on our way home to enjoy our newborn.

Instead, suddenly, there’s a woman in front of me, discussing a MIC-key versus a Mini, and how I will need a medical supply company– a supply company to provide the tubing I would use to pump food directly into my son’s stomach.

As each day passed leading up to his tube placement surgery, I kissed his sweet belly, and
caressed it with my fingers. He was only four weeks old, and he was already going under the
knife; his beautiful, new skin would be subjected to a wound and scarring. A plastic object would stick out; foreign, out-of-place, and unwelcome, in my eyes.

I was tortured by the very idea of a feeding tube. I snubbed the nurses who tried to explain it to
me, and silently fumed at the doctors who brought dolls for me to practice on. They tried to cheer me up by telling me he could be continuously fed through the night, eliminating the need for me to get up and feed him myself. I didn’t want to hear it.

The night before his surgery, I didn’t sleep. I cried and railed against the universe, still furious at
the unfairness of it all, because the feeding tube was only the tip of the iceberg when it came to
his medical needs. Why my son? Why did he have an unlucky roll of the dice?

The procedure went well, and he healed quickly and perfectly. My husband dove in head first,
learning when to clamp the tube, how to lock it in place, how to program the machine, and how to keep the surrounding skin from being irritated.

Me? I was scared. This wasn’t the life I imagined. This wasn’t the way to feed a baby. Babies are fed by mouth, as they snuggle into the crook of your arm and stare into your eyes. Late night feedings are part of the package– those 4 a.m. feedings are bonding moments. This stupid tube was changing my vision for my baby.

But, then, after a few more chest X-rays, I realized just how badly the aspirating had been
damaging his lungs. He couldn’t bottle feed; it was literally too dangerous for him. The tube, while not ideal in anyone’s vision for our son, was going to make it easier for him to breathe, and I knew I couldn’t hate anything that helped him.

I have finally started to accept this part of my son, and even set up his feed and hooked him up all by myself the other day. I can do this. I knew I could. I just didn’t want to, because it meant
accepting this as our new normal, and I wasn’t ready.

That’s okay. It takes some of us a little longer to get used to the new world we find ourselves in
when a child needs medical intervention. I actually think his button looks kind of cute on his
tummy, and I know it’s not the end of the world, as I imagined.

Thank goodness.

photo 3Rachel has been married to her airman for eight years, and they have two children: 3-year-old Sydney, and 2-month-old Jackson. They are stationed in Texas, but are currently living out of their son’s hospital room while they wait for him to have heart surgery. Rachel blogs about their lives as a special needs family at Tales From the Plastic Crib (http://theplasticcrib.wordpress.com).

 

One comment on “A Life Not How I Imagined

  1. trucklyfallon
    July 28, 2014

    Pretty sad 😦

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