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We Exist to Help You

Defining moments. We all have them. Moments that we remember as if they were burned into our memory, where we remember what we wore, where we were and how we felt. The times that are indefinable to others but still cause our stomachs to knot when we think of them.

September 21, 2006 was the day that changed our lives forever.

You’ve all heard the stories about Pearl Harbor, 9-11 and Vietnam. While ours was not a literal war, or a bomb dropping, there was a fight that would have to take place. However, our battle was not fought, or won, on a battlefield. Ours was fought, and won, on the 3rd floor of the Children’s Hospital of Denver. On a chilly September morning, we awoke with great anticipation for this was the day we would be seeing our new baby on the ultrasound machine for the first time. We would see the baby’s fingers and toes and if I could convince Mat, we’d find out the gender. We were excited, happy and full of joy as we arrived at the office. Our joy was soon to be a thing of the past.

As the ultrasound technician looked at the baby, the tone in the room changed. Although the room was already dark, it seemed as if a cloud descended as she repeatedly looked at the baby’s heart. She didn’t speak, just looked. She asked me to dress and wait in the lobby as she may need to get more pictures. When she came back, she had with her the head of the department and my stomach sank. At that point, I sensed something was wrong, but what, I did not know. We returned to the room and I lay on the bed. Now he began looking and I squeezed Mat’s hand. Tears began running down my face before he spoke. He turned to us and said “I am not a doctor so I can’t give you a diagnosis but there appears to be something wrong with your baby’s heart”.

Within hours, we were scheduled to see a neonatologist and when we arrived to his office less than a week later, he confirmed our fears. Our baby had hypoplastic left heart syndrome. Our choices were to terminate the pregnancy, do compassionate care, have a series of three open-heart surgeries known as the Norwood procedure or to elect to have a heart transplant.

That night, I fell on my knees and cried out to God, “if you’re going to take the baby, just take him now, please don’t let it be born and then die”. When I didn’t have a miscarriage, I know death wasn’t God’s plan for this child so we began exploring our options. After about a week of research, we decided that the best odds for this baby was to have a heart transplant and we began searching for the best transplant hospital in the nation. I spoke with Children’s Hospital of Pittsburg and when she asked where we were from, I told her Denver and she let me know that one of the best transplant programs was located a mere 15 minutes from my home. I rejoiced.

The next day, I left a message and got a return call from Dee Dee, one of the transplant coordinators. We went in to meet with the transplant team about 2 weeks later and the ball was set into motion. We spent the next few weeks in a whirlwind of cardiologists, neonatologist and insurance companies. I was reeling from the amounts of information coming my way but we knew what we had to do.

We decided to find out the baby’s gender and were thrilled to find out we were having a boy. Mat cried when I told him the news. Now began the debate over name, which we knew had to be just right. We talked, debated, argued and researched and finally decided on Gabriel, as that is Mat’s middle name and it means God’s warrior. The middle name was up in the air until we heard a song called “mighty warrior” and remembered the scripture in Judges Chapter 6 that says “and an angel of the lord appeared to Gideon and said the lord is with you, mighty warrior’. We knew the battle our baby had to face and we knew that he would have to be strong…we chose Gideon, believing that every time we spoke his name, we would be affirming him as a warrior.

Gabriel Gideon entered the world on Wednesday, January 24, 2007 at 11:17 a.m. at a whopping 8 lbs. 8.5 ounces. I held him for a brief moment before he was whisked off to NICU. My family, all 50 of them, arrived and awaited his birth hoping to catch just a glimpse of him as he was taken to NICU as none of us knew when they would be able to see him again.

Gabriel was transferred to Chidldren’s hospital via Flight for Life Thursday, January 25 at 8:00 p.m. When he arrived, the transplant team had orders for him to be evaluated throughout the night to be sure he was a candidate for transplant and that he would be strong enough to withstand the procedure. We left him there that night and went home to sleep and I cried the whole way home. We returned the next morning and at about 10:00 a.m., Dr. Pietra, head of transplant team, came in and spoke to my mother and informed her that he was working at getting Gabriel listed by Monday. That afternoon, he returned, right before 5 p.m. to let us know that, against all odds, Gabriel was listed and was at the very top. Again, we cried, but these were tears of gratitude.

The next two weeks went by in a near-blur…13 hour days, sitting in a 10x10 room, literally knee to knee, caring for Gabriel. The nursing staff taught us how to give his medicine, take his temperature, read his sats, watch his blood pressure, change his cuffs, switch his pulsat, and give him a bath. We practiced kangaroo care and sang to Gabriel, prayed with Gabriel, read to Gabriel and when the emotion would be too much we would walk out and hold one another to cry. We made sure to only speak life to Gabriel…there was never a question of if he would be healthy, it was only a question of when.

On February 6, 2007, as I rocked Gabriel to sleep, we got the CALL. A heart might be available. The team was flying out to check it out and if it was viable…would be coming back. Gabriel would be prepped for the surgery throughout the day…tests, pokes, tears, fears, pain, joy, sadness. I can only describe this day as bittersweet as I knew now that my child would live, but someone else’s’ child had died.

The day went with bursts of activity and moments of anxious quiet. By this time, Gabriel’s health had started to decline because of his little, broken heart and we could see the side effects…he was cold, pale and so, so tired. We would have to hold him close, wrapped in many blankets to keep him warm. By the time the surgery was to begin, Gabriel had been poked at least 10 times and my heart was breaking for the pain he was in.

My brother raced in to see Gabriel for the first time just minutes before he was wheeled into the operating room. Gabriel looked at all of us with such peace, such calm; it was almost as if his spirit was speaking to ours and letting us know he would be okay.

The night passed fairly quickly, with Bethany coming out every hour to give updates. “he’s sedated”, “his chest is open”, “his old heart is out”, “his new heart is in”, “the heart is beating on it’s own” and 25 sleep deprived and emotionally exhausted people rejoiced as a cheer went up.

That night, some of the nursing staff who had worked with Gabriel waited with our family to hear the updates. One nurse went to our house and took our dog for a walk so we didn’t have to worry about her. After his surgery, Gabriel had a great recovery and began gaining weight within 2 weeks. His health has been good and his first heart cath revealed great functioning of his heart. Today, he is on one medication, is walking, talking and keeping us all very, very busy.

Every now and then, when he is sleeping, I take a stethoscope and listen to his little heart beat. I can’t even begin to thank Children’s for giving my son the chance to live.

The Heart Transplant team; Dee Dee, Bethany, Carrie, Darcy, Nurses Seree, Jody, and Danna. Shannon in clinic and of course, Aurora. Drs. Campbell, Pietra, Le, Myomoto, Fagan, Wilson and Mitchell and the hundreds of others who have made Gabriel’s life possible. I don’t think words can express the gratitude that comes from a parent who is given the chance to BE a parent but I hope a simple thank you will suffice.

Lastly, to the parents of a little four-month-old baby girl in Oklahoma…Your generosity overwhelms me. Your pain has become our triumph and I pray that one day, we will walk this victory out together. Not a day has passed when I don’t think of you.

Facts!

Interesting information that keeps you aware.

  • Congenital heart defects are the #1 cause of birth defect related deaths.
  • Stressors that come along with chronic illness are: financial, separation from the child during hospitalizations, lack of perceived social support and uncertainty about the life expectancy of the child.