Brody and I, along with our families, were blessed with the birth of Miss Everly Anne on September 22, 2015. On that day, our lives changed completely! First a bit about our little family. We currently reside in Grand Forks, North Dakota. Brody sells farm equipment for Butler Machinery and previous to having Everly, I was a 5th grade teacher. I currently stay home to care for our little superhero. At 13 months, Everly brings so much joy to each day. She loves to be outside, play at the park, go to the library, read books, and make animal noises. She is also so close to walking! Everly 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 rare syndrome called MMIHS and because of this, she so bravely faces challenges each and everyday. This is Everly’s 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. At two months of age Everly underwent her second surgery to have a g-tube and central line placed, along with several biopsies taken. She spent one additional month in the Milwaukee Children’s Hospital to monitor her care. On December 20th, we made the long drive home with our baby for the first time, just in time for Christmas!
Since then, we have spent one additional month in Wisconsin due to a possible bacterial overgrowth infection and many other hospital visits on top of that. Everly has since had another surgery to change her central line from her leg to her chest. She has also had her g-tube replaced with a gj tube. Currently Everly is TPN dependent for 16 hours a day. She is able to take very minimal feeds through her gj tube when she is feeling well. She is also catheterized every four hours. Everly will have her fourth surgery in the coming months to get an ileostomy placed in the hopes that she will be able to tolerate more food and be on less TPN.
Life with a baby who ha
s MMIHS comes with it’s challenges. We make weekly doctor’s visits to our local clinic to get labs taken and her central line dressing changed. That is on a good week! If Everly is not feeling well, we also make additional visits to the clinic and sometimes even the ER. We travel to Sioux Falls, South Dakota every couple months to meet with our GI doctor, urologist, and pediatric surgeon. We also doctor in Fargo with an additional pediatric surgeon. As parents we are constantly trying to research and learn more about what we can do in order to best care for our sweet baby. Her medical cares require a great deal of time throughout each day and into the night. However, we have found as we get more comfortable with the
procedures, we spend less time playing nurse and more time as parents!
We believe it truly takes a village to raise any baby, but especially one with a rare syndrome such as MMIHS. We are completely blessed with the support of our family, friends, MMIHS support group, and medical staff in order to care for Everly. We are doing our best to take it one day at a time and accept the journey. Everly has taught us many things. 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!