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.

Friday, January 19, 2018

Introductions

Big eyes!
Hi! I'm Hannah. I'm 2 months old!  I was born the day before Thanksgiving. I have a crazy family and some crazy sisters and a crazy brother. They are so LOUD but I'm used to the noise. During my naps I sleep better when it's noisy. Sometimes they get along and sometimes they don't, but they all seem to love me and want to hold me and protect me. I like it when they stroke my head. They give me silly nicknames like Hannah Bear, Sugar Plum, and even Miss Hannigan. Daddy calls me weird things like Miss Dump-a-Load.


My daddy is really silly.
Every once in a while those crazy parents stick this thing in my nose and all the way down.  It's awful!  I scream and scream and eventually they stop. Then I don't mind it anymore. I have a feeding tube because when I try to swallow, it doesn't go down right, but it'll get fixed soon and then I'll be as good as new.  For now my tube puts milk in my belly and I never feel hungry. I probably don't even know what hungry is! Because of my tube I hardly ever spit up.


My big sister Audrey

I went to the hospital a bunch of times, and I rode in an ambulance.  At the hospital they poked me with sharp things a lot and made me cry. I especially didn't like it when they sucked boogers out of my nose, but it did help me breathe better. There were a lot of noises and beeps but I got used to it.  I much prefer being at home.
I really like to be swaddled nice and snug, and I love my binky.  Sometimes my mom dips my binky in her magic milk and I can taste it. It is so yummy!  I wish I could have more.

I can sleep alllllllll night long. My mommy brings me to her warm dark room and puts me in my cradle all bundled and then turns on the soothing vibration that helps me fall sound asleep. Sometimes she puts a bean bag on me to make me think there is someone putting their hand gently on my chest. Then I go to sleep for 8 hours and I don't mind that its quiet.
My big brother Samuel.







I really enjoy my bath. It is warm. When I get out I'm cold at first but then I feel so warm and sleepy and safe after I get dressed in fresh jammies. I also like to poop and burp and be held. I ESPECIALLY like to be held. It is warm and comforting to be in someones arms and hear their heart beat and their breathing. It makes me feel safe. Sometimes all those other crazy people all want to hold me at once and it gets a little too crowded. I like to be around my family during the day. When they are eating at the table I like to sit in my vibrating bouncer chair nearby or sit on someone's lap so I can be near all the action. Sometimes my mommy holds me like a football while she eats and that's cool.

I don't like being in my car seat. Its boring and nobody holds me and it's not warm. There's nothing to see or do.
My big sister Lexie

My latest trick is smiling and watching other people's mouths. They get really happy when I smile at them and I get happy when they smile at me. I can almost hold up my head, but it's hard work. There's so much to see that I open my eyes really wide to take it all in, and everybody likes that and thinks I'm cute. I know that I am loved.

Whew!  Now I'm exhausted from all this chatting. Now I get to go to sleep.  See you next time!
My biggest sister Leah!

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