Our daughter Hannah was born 11/22/17. She's our fifth baby and a welcome surprise caboose for our family. At 6 days old she was diagnosed with a rare condition called cricopharyngeal achalasia, also known as cricopharyngeal hypertrophy, bar, or narrowing. It is a congenital defect involving the upper esophageal sphincter muscle that is too large and impairs the swallowing process, kind of like a pinch in a hose.

At 8 days old Hannah underwent a procedure to dilate her esophagus and reduce the muscle with Botox injections, but unfortunately, the procedure was unsuccessful. On March 16 she had a myotomy of the muscle, and she is now able to swallow. After 4 months on a feeding tube, she is finally able to eat by mouth.

This is her story that is still being written.

Saturday, December 2, 2017

This is nothing like Grey's Anatomy



On Thursday the surgeon suggested doing the balloon dilation and the botox injections together, which I had also considered.

The nurses turned off the baby's feeding tube some time in the middle of the night so that she would have an empty tummy for anesthesia and surgery. Poor little one. She might have been on an IV for nutrients and hydration, but that doesn't do much for an empty tummy. Hannah was surprisingly peaceful nonetheless. She certainly loved the binky and being tightly wrapped.

Super Scary Form

Surgery was scheduled for 1pm. So naturally at 3pm we finally got started. Wheeling a ginormous crib and IV pole for an itty bitty 8 day old baby down the hallways and elevators to surgery was truly surreal and foreign. First we went to "holding" and signed all the Scary Papers and met the anesthesiologist. Then she was wheeled one direction and I had to go the other direction.  The waiting room had a screen showing patient number and surgery status...kind of like waiting for a flight to arrive.

I'm so grateful to my visiting teacher and friend Kari who came with me and sat with me during surgery so that I would not be alone. I was a ball of nerves.  It was refreshing to talk to someone that wasn't a doctor or nurse, and to remember that it was still just a Thursday and that real life was still swirling all around outside of the hospital.

Esophagus before and after dilation.
Top picture shows intubation tube going down trachea.
Cricopharyngeal muscle is below the esophageal opening.
The official name of Hannah's surgery was "esophagoscapy with balloon dilation and botox injections."  The surgery took less than an hour and Hannah seemed much the same as before, albeit very sleepy. (Her cry sounded a little different afterward too...less like a screechy, wounded velociraptor and more like a newborn, but that could be completely unrelated to surgery).  Dr. Schramm gave me some pictures of the procedure and said "Here are the most expensive baby pictures you'll ever have." 

I was told that as soon as she was able to nurse successfully twice we could go home. And Hannah nursed like a champ, as if we hadn't missed a single step.  Yay!  Hannah was all better! We went home Friday before lunch.  It turns out I was probably a little overeager to go home after 3 days in the hospital, because we wouldn't be home for very long!
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