Everly’s Story

by Erin Peterson

Brody and I, along with our families, were blessed with the birth of Miss Everly Anne on September 22, 2015. Everly truly has a heart of gold and brings so much joy to our lives!

She is the perfect mix of sweet and spunky and is the greatest fighter I have ever known. She has taught us more about life than we could have ever imagined.

You see, Everly was born with a very rare genetic syndrome called MMIHS (Megacystis Microcolon Intestinal Hypoperistalsis Syndrome). This is a life threatening syndrome with no present cure (for additional information visit
MMIHS.org). Because of this, she so bravely faces challenges each and everyday.

This is her story.

When I was 26 weeks pregnant, an ultrasound revealed our baby had an enlarged bladder. Weekly ultrasounds and meetings with specialists took place in order to monitor the prognosis. At 39 weeks I was induced in Fargo, North Dakota and Everly graced us with her beautiful presence.

To look at her you would never know that her insides were not working properly. We got to spend the first day like most parents, in complete awe of this little human that we brought into the world. However, the next day challenges presented themselves and we were forced to face some pretty hard truths in the days to come.

Everly began spitting up large amounts of bile. She was quickly admitted into the NICU and had surgery the very next day to fix a meconium
backup in her small intestine. We prayed this would fix our baby and we would be headed home soon.  Unfortunately Everly continued to spit up bile and further complications were identified.

Everly spent the next month having various tests administered around the clock to try and uncover why her bladder and intestines were not working properly. After one month in Fargo, Everly was airlifted to the Children’s Hospital in Milwaukee, Wisconsin where they specialize in gastrointestinal care.

It was there that Everly was diagnosed with MMIHS. MMIHS affects the motility of the bladder and intestines and because of this Everly is unable to digest food or drink by mouth. Instead, a tube delivers a nutritional supplement (TPN) directly into her bloodstream through her central line. Her stomach also houses a g-tube for medication administration. We also use this to drain her bile when it exceeds the capacity of her intestines.
An ileostomy was her most recent surgery in order to minimize abdominal bloating, help rid her body of waste, and hopefully improve intestinal motility.

Everly is also catheterized every four hours as her bladder is unable to consistently empty on its own. In addition to her inability to eat and drink, many other challenges exist due to this syndrome. For example, it is not feasible for Everly’s chest area to get wet due to a possible infection in her
central line. Everly’s life depends on existing in an environment that limits her exposure to much that could be detrimental to her health.

Extreme outdoor temperatures are of further concern. Hot weather could result in Everly’s dressings losing adherence to her skin. A total seal is absolutely necessary as the area needs to be kept completely sterile. Cold weather may affect Everly’s tubes in a negative way as well.

A simple cold or virus could result in ER visits and possible hospitals stays. The consequence of a fever/temperature is always a trip there and the outcome has been an admittance more than once. Infections could prove fatal for Everly, being she has a central line running directly to her heart.

Everly has spent 150 plus days in hospitals and has been airlifted three times. Clinic appointments and pharmacy runs occur on a weekly basis, with trips to the children’s hospital taking place every couple months. We have also completed a week long transplant evaluation in Omaha, Nebraska. The medical community is also in contact with us on an almost-daily basis.

At home, Everly requires around-the-clock care and monitoring. Her medical care includes feeding tubes, ostomy bags (empty and change), administering meds, venting her tummy, charting input vs. output, changing fluid amounts, TPN hook up and disconnects, answering and
making calls to set up appointments and get weekly lab results, various medical appointments, central line dressing changes, g-tube replacements, catheterizations, learning new procedures, tummy measurements to check for distention, temperature taking, sponge baths in order to keep
her central line dry, flushing tubes, checking the pump batteries, picking up supplies, researching and analyzing EVERYTHING!

Everly is also hooked up to two pumps throughout the day. Her TPN (nutrition) pump runs for 16 hours a day and fluids for 16-24 hours. Therefore, her cares also include following very closely behind her with sometimes two backpacks weighing up to 13 pounds.

Everly certainly faces many medical challenges on a daily basis but this does not define her. She is a two year old who is so curious about the world! When she is feeling well, you will most likely find her out playing at the park, walking her babies in her toy stroller, going for bike or
stroller rides, attending library, gym bin, dance and music classes, or enjoying preschool (withmom in tow). She also loves to lick foods simply for taste (pickles, peppers, apples, etc.)!

Everly continues to teach us important life lessons with a huge smile on her face! One of the most important lessons she continually reinforces is to live each day to its fullest. She has an amazing love for life, which is something I greatly admire about my daughter.

Live each day to its fullest!

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