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.

Tuesday, June 12, 2018

6 Months

Impossible not to smile back
at that beautiful face.
Everyone who sees Hannah says she has the most amazing eyes and eyelashes. She is so attentive and will smile at you if you make eye contact. She loves reaching for you and stroking your face (or pulling your hair).

Last month Hannah met her Lola Pearly and her great Lola who were visiting from Washington State. We (finally) had her baby blessing at church on May 27.

Hannah's blessing day
Hannah is getting better at getting her calories every day, although some days she doesn't have as much of an appetite as others. At $25 for a canister of thickener that lasts 8 days and $17 for a canister of formula that lasts 2 1/2 days, I calculated that it costs about $10 per day to feed Hannah! I'm working on transitioning her to a cheaper thickener since she's getting formula now instead of breastmilk, which called for the super pricey thickener. (And the new thickener makes her poop smell like an actual garbage dump and it makes her bum raw. If that isn’t a first world problem…)

While she does often have a wet cough and chokes a little on her bottle sometimes, she seems to be staying healthy. The last time we saw her ENT, he concluded that her swallowing dysfunction is more a matter of functional ability rather than any residual anatomical abnormalities. Hopefully, she will get better at swallowing as she continues to practice and strengthen her swallowing muscles. We saw a pulmonologist last week to make sure we aren’t doing any damage to Hannah's lungs in case she is silently aspirating a little bit each time she takes a bottle. The pulmonologist was impressed at how well Hannah is thriving given her rocky start.  Nevertheless, she ordered a chest CT next week to make sure her lungs are clear.  It will most likely be perfectly normal, but we have to check anyway.  (And on July 1st our insurance deductibles and out of pocket amounts reset, so we are doing everything possible before then!)  If for some reason the CT isn’t normal, we would probably have to do nebulizer treatments twice a day to strengthen her lungs.

Hannah had her 6 month check-up a few weeks ago and is almost in the 50th percentile!  She learned how to roll from her back to her front, which is much harder than front to back, and is getting better at staying sitting up instead of just flopping on to her face. She's SOOO close to crawling! She can get her knees up underneath her and looks like a little inchworm.  She’ll be crawling in another week or two.

While we’re on the subject of doctors, I just want to say that some doctors are incredible at listening and can gauge how much medical terminology you are familiar with while talking with you. They explain things respectfully and answer all your questions in a warm, inviting manner.  On the other hand, there are some doctors that throw out half a dozen words you don’t recognize without missing a beat, and have the body language, facial expressions, and tone of someone who thinks you are a moron if you didn’t go to medical school, and that you are a moron if another doctor made a prescription, did a procedure, or gave you information contrary to said new doctor’s preference.  I have met both types, and often their reputation for being abrasive or blunt has preceded them accurately.  Don’t get me wrong, I appreciate doctors being straightforward with me, but I also appreciate the benefit of the doubt that I am (usually) not a moron.


The coolest CT scanner you'll ever see!  Hannah was super chill and didn't need to be sedated.  We were there a total of 40 minutes!


Dad with his Mom, Grandma, Lexie and Hannah
I am working on converting this blog into a book for Hannah, so I've been reading all my posts from the beginning, editing, and adding pictures to a layout. It brings back so many thoughts and emotions. It wasn't that long ago, but it feels like a lifetime ago and I have already forgotten how incredibly stressful that period was. Just reading about it makes my head hurt again, my back and shoulder muscles tense up, and I get an unsettled nervous feeling in my stomach, which was my constant state from December to March.  Four months doesn't seem like that long right now, but back then it was an eternity. I would call it Uncertainty Limbo. Being in the thick of it without much precedent on what to expect, we had no idea how long it would take before we could reach any semblance of normal and finally be able to exhale.

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