Evelyn Benzer Evelyn's Page

First post: Nov 7, 2017 Latest post: Apr 11, 2018
Evelyn was born on October 9th, 2017.  She was delivered by a scheduled c section at 37 weeks due to a complete previa.  She weighed 6 pounds 2 ounces and was 20 1/4 inches long.  During the pregnancy we went to Saint Cloud for ultrasounds to monitor the previa.  Evelyn was expected to be a healthy baby, besides the previa nothing was ever noted as a cause for concern.  When they delivered Evelyn it was evident something was wrong.  She did not cry and was very weak.  They figured out quickly that she could not be laid on her back because her chin was so small that her tongue keep falling back and blocking her airway.  They were able to stabilize and transfer her to the Saint Cloud nicu.  The doctor there let us know that he felt there were two issues with Evelyn.  One was the small chin and the other was that Evelyn had low tone and could not swallow her own secretions, something we all take for granted and don't even realize we are doing.  He thought these issues might be a result of a neurological issue brought on by some sort of trauma, a lack of oxygen to the brain, either during pregnancy or labor.

Many tests have been done in an attempt to figure Evelyn out.  She had an EEG that showed slight slowness on one side of the brain which prompted an MRI which came back normal.  These were followed up by genetics and metabolic testing that came back normal.  All this is great except we do not know what is causing her low tone or lack of ability to swallow.  Currently we are waiting on results from additional genetic and metabolic tests for rarer conditions.  Last week she was transferred to the University of Minnesota Masonic Children's Hospital for a second opinion and a g tube,  which will give us the ability to feed her through her stomach. Right now she is fed through a tube that goes in her nose and down to her stomach.

We have to take things day by day with Evelyn.  We are still waiting on test results and new tests are done everyday.  We are excited to be at the U of M.  Evelyn has been seen by neurologists, geneticists, ENTs (ear nose and throat), and OTs (occupational therapists).  The OTs  have started working on teaching her to  cough and swallow so hopefully one day she will be able to handle her own secretions.  Tomorrow is her surgery for the g tube.  While under for the surgery they are going to look into some additional items and ENT is going to get a good look at her as well.

Evelyn is almost a month old now and more awake every day.  She is a sweet and curious girl.  When awake she really looks around.  Her cry is starting to get a little louder and she cries now when she is hungry or fussy.  We are hopeful as we move forward and greatly appreciate all the support and prayers from family and friends. We are especially grateful for our parents.  They have helped us in countless ways.  We couldn't get through this without their support and the support of family and friends.

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