2022

On January 10, 2022 Everly Rose Matsen was born into the loving family of Mark and Natassia Matsen. Everly was born with a heart defect that is commonly associated with trisomy 21, or as most of us know as Down Syndrome. This AV canal defect will require open heart surgery to repair the hole in her heart so she can live a healthy and thriving life. Because of her trisomy 21 diagnosis, she faces some obstacles that are a little tougher for her to overcome without some help. Two major things, one being gaining weight and the other is fighting off viruses. Her tiny little heart works 4 to 5 times faster than other babies, which makes it more of a workout to feed, and less strength to fight off things like a common cold or stomach virus.

 

On February 4th, Everly was admitted to Children's Hospital because she was not gaining the weight needed to have her open heart surgery. She had been consistently losing 1 to 2 ounces at every doctor appointment.  It was a full week of remaining at the same weight and trying different intake recipes and medication cocktails until she finally found her stride and began to gain weight on a daily basis. Everly was discharged home on February 18th after two full weeks in the hospital. Mommy, Daddy and her two older brothers were so excited to finally have Everly home.  She had now spent more time, either in isolation because of COVID, or as a patient in the hospital, than at home with her family.

 

After nearly a full week at home, Everly went for her echocardiogram and found that her status had been bumped up from mild/moderate to moderate leakage from her heart. The plan was to continue watching weekly as nothing else seemed concerning at the time. Natassia had noticed she was wanting her bottle sooner than every three hours, so she asked if it was ok to do that. That led the team of Doctors to decide to increase her intake every three hours. So when she showed some stomach symptoms in the early hours of a Sunday morning, their first thought was her change in diet. That afternoon, the symptoms continued and they realized something was off.  After getting her ready for her afternoon feeding and meds, they noticed she looked a little pale and lethargic so they checked her temperature. A brand new thermometer read 104.6. They quickly called their cardiologist and explained all of the symptoms they noticed. They gave her Tylenol and immediately headed up to the ER. When they arrived, they quickly took her vitals and decided to take her to another exam room with more monitors. On their way there, a code blue was called. They were terrified even though they were told that was typical protocol to get all hands on deck quickly. They began to give her oxygen, place IVs and IO (an IV through her shin bone) and discussed the need to intubate. After several minutes (which felt like hours) of getting her some support to help her body rest, they felt they were clear to move up to the Cardiac ICU to assess the next steps.

 

Once they got up to the Cardiac ICU, it was decided that they needed to intubate and put her into a sedated paralysis to keep her from moving and feeling discomfort, and allow the clinical team help take over so she could rest her tiny body. They went through a full night of monitoring and trying to get answers. With her heart condition, it made what may be common for other infants, extremely hard to fight on her own. In addition, Everly had been on diuretics to help her heart two times a day, so that coupled with diarrhea was enough to tip her over the edge. Ultimately, her primary diagnosis was hypovolemic shock, or shock due to dehydration. 

 

With God on their side, Everly had been making tremendous strides, but was breathing very fast and relying on oxygen. Knowing this, her medical team decided to move forward with her first open heart surgery in mid-March. The surgical team placed a PA band around her heart which will allow her the time to grow a little more for her complete repair at a later date. Everly responded very well to the surgery and is continuing to gain weight and will hopefully be discharged home soon.

 

They are extremely grateful for the love, support and prayers throughout this journey and know that soon it will become just one chapter in the great book of Everly Rose Matsen.

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