Four months...

It's been nearly four months since I've updated this blog. And there are several reasons why. Amelia Marie was born April 5 at 1:00 PM weighing 5 pounds 13 ounces and measuring 18 inches long. Deep down, I suspected even during my pregnancy that something was not right with my daughter. Even after she was born, I watched everything.

Within a couple of weeks, instead of gaining strength, my baby became weaker. She developed hypotonia and failure to thrive. I brought her to a doctor who diagnosed her with Acid Reflux and Hypothyroidism. She was prescribed Synthroid and Zantac and they made an appointment with endocrinology. I prayed and prayed her issues were just hypothyroidism, but I suspected something was horribly wrong. Millie, once an excellent nurser began to get upset and stop eating during a meal. The scariest part came later, where I was giving her medicine and she aspirated. She turned blue. Everything changed and I realized something was majorly wrong.

The next day I called the pediatrician's office and told them what was going on. Instead of getting a call from the nurse, the doctor himself called me. He told me Amelia needed to go to the hospital right away. My worst fears were confirmed. We brought her to Sanford Children's Hospital in Sioux Falls on May 24, 2016 where she was directly admitted. The first night they simply monitored her but the next day specialist after specialist came in. At first I suspected Mito, but the other possibility was Spinal Muscular Atrophy. My husband's cousin had SMA so we knew this was a possibility.

Spinal Muscular Atrophy is a genetic disorder that causes progressive muscle weakness. The motor neurons degenerate and die, causing more and more Atrophy as time goes by. There are several types of the disorder, ranging in being fatal in infancy to being fatal in adulthood. Generally the severity is determined by the onset of symptoms. There is no cure for SMA, and if Millie had it she was likely to have Type 1, which is the most severe.

Neurology saw her and they were fairly certain she had SMA. A blood test was done to confirm the diagnosis. Meanwhile, she had a swallow study which determined she aspirated both thin and thickened liquids. They put in a nasogastric tube and then told us we could do a more permanent gastrostomy tube which would go directly into her stomach. No more aspiration. She had the surgery to place her g-tube on May 27, 2016. We were finally discharged on May 31 and awaited the genetic test results.

The feeding tube gave Millie a whole new chance at life. She was happier than we had ever seen her in her entire life. However, less than a week later, she was in respiratory distress and went back to Children's. The next morning, Palliative Care team came in to speak with us and brought a box of tissues. The genetic test results were back: Amelia had Spinal Muscular Atrophy.

We were devastated. In just moments our world shattered. The maximum life expectancy for her was 2 years without a ventilator or tracheostomy. She came home with oxygen and we were advised to seek hospice care.

She was admitted to hospice on June 17th. As things progressed, she require Morphine, more oxygen, and her breathing became more and more labored. It became clear her disease was progressing much faster than we ever anticipated.

Beginning on July 12 I realized Millie was getting close to leaving us for heaven. The fight was starting to leave her bright blue eyes. My heart was broken. On July 14 in the evening hours, she began to decline rapidly. Her organs including her kidneys were shutting down.

My sweet baby girl went back to heaven on July 15, 2016 at 12:52 AM at just three months and ten days old.

My life is completely unrecognizable now. The pain and grief I feel can not be described in words. It is intense and unrelenting. I miss my baby so much. I can't see her, hold her, snuggle her, or kiss her any longer. I am comforted in knowing that she no longer suffers and that she is happy and whole in heaven. However, we are left to live life without her and no parent should ever have to do that.

While I apologize for my silence, I'm sure people can see why I have not written much lately.

Rest in Peace my precious angel. Mama misses you and loves you more than all the stars in the sky.

Amelia "Millie" Marie Phillis April 5, 2016-July 15, 2016