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

Meanwhile, back on the ranch...

The day Hannah was born, Lexie (2 1/2 years old) had full-blown croup, with a 103 degree fever, diarrhea, cough, and lethargy.  My mom took her to the pediatrician and Lexie got a steroid treatment, which started working almost immediately.  Regardless, she was still symptomatic when Hannah and I came home from the hospital 2 days later. It added another dimension to having a newborn at home: the risk of her getting the rest of us sick.

My mom had been with us for a week and a half and had gone home (to Chicago) on Monday.  On Tuesday, the day everything hit the fan, Lexie still had a fever and diarrhea, Audrey was starting to cough, and Leah (11 years old, 6th grade) had stayed home from school with a high fever and cough.  I always feel so bad leaving her home alone when she's sick, because she gets lonely and bored, and I would rather be home with her to keep her from getting too discouraged.  She is the most conscientious tween and doesn't want to let her teacher down or miss choir practice or get behind on school work.  So she stayed home because in my professional opinion as her Mother, she was too sick to go to school, but I was running all over creation with Sandy getting medical attention for Hannah.  By afternoon when I had decided to see another doctor, I called Chris and told him it was time for him to come home early, and arranged for someone to stay home with Lexie until he could get back, which would be about 45 minutes.

By Wednesday I was living and sleeping and showering at the hospital.  I was afraid to leave and miss something important.  We were in full on crisis mode, and so many friends and loved ones wanted to help, but I didn't know what I needed.

Fortunately Chris was able to take a sick day on Wednesday to stay home with Lexie.  On Thursday he had work meetings he couldn't miss and I had to coordinate people to help get my kids the right places at the right time.  This is where I got to call in all those proffers for help.  Chris got the kids out the door to school, dropped off Lexie at a friends house, and went to work.  Leah was again home sick and I didn't want her to be home alone, but I also didn't want her to get my friend's kids sick.  I rallied friends to check in on her throughout the day, and they came through for us with flying colors. A friend picked up milk and pizzas and came over to have lunch with her. Others dropped in to check or keep her company.  Leah and Samuel had a concert the following day, and I recruited one friend to finish making Leah's black skirt, and another friend to pick up some black concert pants and socks for Samuel at Kohl's.  All week friends and ward members showed up with gifts and dinners and rides for our family.   I think all our friends now know our garage door code! 

There is no way we could have met all our obligations without the outpouring of love and support from our friends and church community, which I hope any church community could provide, regardless of denomination.  We are Mormon, and each family has Priesthood brothers and Relief Society sisters assigned to watch over and provide spiritual support and fellowship. Our ward (congregation) jumped into swift action to provide the compassionate service we needed.

On Friday, Leah was again too sick to go to school and missed her concert anyway.  She was especially discouraged because the next day, Saturday was her birthday. No one wants to be sick on their birthday!  I knew I absolutely did not have the time or mental energy to plan a Harry Potter birthday party, and so I asked my Relief Society President, "Remember how you said I could ask you to help with anything I needed?  Well, I need you to plan a Harry Potter birthday party."  She and another sister came through for me and started making arrangements for a party the following week.

For the second Friday in a row, Hannah and I came home from the hospital in time for lunch.  Saturday was Leah's 12th birthday and we got to be together as a family. We went to an art museum where Leah's work was on display, then went out for pizza. Everything felt almost normal, but I was leery that Hannah was really not out of the woods yet.






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