Life of Knuckles: Heart Angel Aeden

 

It was early October 2009, I was 22 weeks pregnant, and started bleeding.  My membranes ruptured and the embryonic sac was falling out, because I have an incompetent cervix.  I was rushed to Bergan Mercy Hospital in Omaha, Nebraska.  They did everything in their power to keep the baby in utero.  I stayed in the hospital for multiple days, lying elevated. I had developed an infection because of a tear in the embryonic sac, and was put on antibiotics.  Not knowing I was allergic to ampicillin, the hospital was forced to induce labor.  Aeden James was born on October 15, 2009, weighing only 1lb 10oz and 12 inches long at 24 weeks.  The doctors told us he had a very small chance of survival.  After a quick exam, they rushed him off to the NICU.  My mother called our deacon and asked him to come to the hospital. Aeden was baptized 2 hours after he was born.

Aeden was born with an absent septum pellucidum of the brain, PDA, NEC with resection, lung disease of prematurity, adrenal insufficiency, retinopathy of prematurity, amblyopia, interventricular hemorrhage, and chronic constipation.

He was so fragile and delicate.  We were not able to touch him let alone hold him in fear his transparent skin would tear.  His eyes were still fused closed for 2 weeks after birth. All I could do at this point was stare at tubes and wires all around him, longing to hold my first born child. Finally after weeks of waiting, I was able to hold my son. Skin on skin contact.  He still had wires and tubes connected to him along with a ventilator, but that did not matter to me, I was holding my child.

Omaha had record snowfall that year.  There was so much no one knew where to put it anymore.  I would go to the hospital every day to see him.  At times, I had to ask my dad to take me because of the blizzard conditions.  

In February of 2010, he had his small bowel surgery due to NEC, removing parts of his intestine and rectum.  Aeden had to be on medicine every day to refrain from constipation after this. After 5-1/2 months in the hospital, he finally came home in March, I remember it was the Friday before Palm Sunday.

He regularly saw his endocrinologist and pulmonologist.  In October of 2010, his tonsils and adenoids were removed to aide in breathing due to his lung disease.  At 16 months, Aeden finally learned how to walk. He was behind for his age, and I contributed that to his prematurity. 

I became pregnant again and delivered another son, a full term healthy boy in April 2011.  It did not take long for these two boys to become best friends.  It was like having twins.  Aeden was behind on the growth chart and his brother Tanner was right where he should have been.  They were always together, getting in trouble, as only brothers can do. It was as if nothing was really wrong, that they would grow up together, playing, riding bikes, going to school, camping and fishing, playing ball together.

Early Childhood Development would come to our home and assist with Aeden’s developmental and motor skills.  They suggested Aeden should attend preschool to help with his development. In January of 2012, at 3 years of age, he went to school in the afternoons.  He developed pneumonia in February and didn’t finish the year at school. We began focusing on his vision. Aeden still could not see out of one of his eyes, and glasses were a must.  His optometrist suggested we patch Aeden’s good eye, forcing the weak eye to strengthen.  That only frustrated him as he was not able to see at all now.  In August of 2013, we headed to St. Louis for reconstructive eye surgery which was successful!  Aeden could now see out of both eyes. Not very well, but both eyes, nevertheless.

Late summer of 2013, we went on a family vacation.  Aeden played in the mud, visited the apple orchard, went 4 wheeling, played video games and went swimming.  I noticed Aeden couldn’t breathe well while he was playing in the water.  His lips were turning blue.  When we returned home, I made another appointment with his endocrinologist, thinking his asthma must be worse.  The doctor then scheduled an echocardiogram for him in September. By October of 2013, he has his first Heart Catheterization confirming the worst, Pulmonary Hypertension. First round of medicine of Sildenafil started ASAP. Shortly after diagnosis, Aeden had his first seizure. Back to Children’s Hospital he went. Round 2 of Pulmonary Hypertension medicine began of Bosentan. 

Hoping for the best, we enrolled Aeden again in preschool in August.  Giving the school countless instructions on his condition, I still feared for his health.  I needed to know this disease.  How, why, what can I do?  Upon a regular doctor visit in September, I was given information about the Heart Hero’s and ordered Aeden’s cape.  I started to read everything I could about CHD to become more educated.  Aeden’s Heart Hero Cape came the month of November.

Then in December of 2013, he started to have stomach pains.  After numerous visits to the ER, Aeden suffered from gall stones. Surgery was scheduled to remove his gall bladder.  While Aeden was under anesthetic for this surgery his optometrist preformed yet another eye procedure.

Aeden was faced with so many different challenges.  One did not necessarily relate to the other.  Countless doctor visits, numerous hospital admissions, endless medicines. Everyone who has met him always said they remember Aeden with a smile on his face. He had the innocence of a child and was simply pleased with the company of his brother and his large family.

By March of 2014, Aeden needed to be on oxygen every night now.  He was on multiple medications multiple times a day, only adding to the daily routine. Then he developed pancreatitis in April.  Children’s Hospital was becoming our second home at this point. I spent countless nights sleeping in his hospital room, never leaving his side. The doctors and nurses knew us by name as he went back in June with a fever for a few more days. 

Aeden would play when he could, and rested when he couldn’t, tormenting his younger brother often. His grandpa did everything he could for him, from movie nights in the front room pulling out the mattress off the bed, to motorized vehicles and a new 4 wheeler so he could play outside without getting winded, a Wii station and an IPAD.  Aeden would ask his grandpa for a dollar frequently to download new games. His doctor always said that Aeden had strong thumbs from playing so many games. 

A few months went by with little change, still having regular pulmonary, cardiologist, endocrinologist and optometrist visits. Thumbs were getting stronger as Aeden started slowing down in his physical activities. School started again in August, and we thought things were “OK” as much as OK could be for him. Again, I had to pull him out of school as it was physically too much for him to handle. I signed up for the Super Hero Heart Run in Omaha in September of that year, it was the only run Aeden was able to attend.

During a regular checkup in October, his doctor noticed his illness was getting worse, it was Aeden’s 5th birthday.  The decision to preform another Heart Catheterization was made to determine if the 3rd medicine for his pulmonary hypertension was needed. In December of 2014, IV therapy of Veletri began.  This medicine was the most difficult one for Aeden’s body to accept, fevers, body aches, and the worst, jaw pain. He had to go through all of these medications before they would consider further treatment. The next step would be a lung transplant. Shortly after the IV port was put in, his breathing became more difficult. I took him into Children’s Hospital and Aeden now needed to be on oxygen 24 hours a day. January 2, 2015, he was admitted for progressive hypoxemia, fevers and respiratory distress. Realizing the medicines are not helping anymore, Aeden needed a lung transplant ASAP. It was a Friday. The weekend was upon us and paperwork was delaying approval. Aeden was becoming worse, and quickly declining.  We were making arrangements to head to Houston for a lung transplant.  By Monday, approval was granted, but the doctors had stated that the disease has progressed, and Aeden would not make the flight. That night, the beginning of the end was upon us. Family rushed up to the hospital in the wee hours of the morning to start saying their goodbyes. The hospital floor was becoming quite full. So full, we had to rotate people in and out of the room, overflowing the waiting room area. Our family priest came to the hospital in the morning and Aeden was confirmed and given the anointing of the sick. Then, 2 hours later, on January 6, 2015, Aeden took his last breath. Aeden lost the battle.

Making funeral arrangements for him was so hard on all of us. Knowing how large our family is, those who knew Aeden on a personal level, our friends, those who knew Aeden on a social level, and neighbors, school, doctors, teachers, aides, daycare, who all knew Aeden on a different level, the list became very long.  The funeral hall was standing room only, church was overflowing. So many people came to pay their respects to a 5 year old boy who smiled every time he saw them. We had a balloon release at the cemetery, the sky was a perfect shade of blue, sending all of the red heart balloons floating up for Aeden to catch.  A fund raiser was held in Aeden’s name.  I did not want money, I wanted Aeden back, but friends insisted and pulled together one raising over $10,000.  We took the funds and donated it back to Children’s Hospital to purchase 2 new Wii gaming systems, just like the ones Aeden would play with while he spent so many days and nights in the care of the wonderful nursing staff at Children’s Hospital.  

Not a day goes by where I don’t think about Aeden, always wondering what he would be like today.  I visit him weekly at the cemetery, bringing him toys he should be playing with, and asking him to watch over all of us, missing him deeply, crying each time I go.

His memory will forever be in my heart.

Posted in: Advocacy, Awareness, CHD, Heart Angel, Heart Hero of the Month, Heart Heroes

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2 Comments

  1. Dr Fletcher September 1, 2017

    He was a special young man. Always smiling! Thanks for let me walk the journey with you.

  2. Angel Hans September 20, 2017

    Papa and grandma Hans think about you everyday and miss you so much. You were a brave strong funny loving boy…. Until we meet again baby.