written by Autumn, Miracle’s mom

     Miracle Elizabeth Gonzalez was born on December 8th, 2018. She was born three weeks early. We fell in love with her as soon as she was born, at 6 lbs 1 oz, and 17 in. long. 

     Miracle was diagnosed with two heart defects in utero, she had a complete AV Canal defect and a narrow aortic arch. The cardiologists were so confident in her procedures, little did we know that we would not be coming home with our baby. Miracle had her first open-heart surgery on December 17th, 2018. We received an update that Miracle’s aortic arch was already repaired, the doctors were going to try to take her off of bypass and warm her body. However, she was unable to stay off of bypass because of dangerously low blood pressure. They decided to bring her back out of the OR on ECMO/bedside bypass. Miracle was on bedside bypass for a suspenseful four days.

      Even though Miracle was able to come off of ECMO, she had to be put on the max amount of blood pressure medication. Considering everything that she went through, we were very hopeful that she would start to recover. Miracle was able to come off of the blood pressure medication slowly, but she was just not progressing, which was frustrating. Miracle was not able to tolerate feeds or wean from oxygen support. That 1st post-op journey was one month of a truly horrible roller coaster ride.

     We found out that Miracle’s heart would squeeze but not relax fully; it was too thick to be able to work well for her body. A cardiology fellow finally suggested that we should see if Miracle’s aortic arch was still too narrow. Miracle had a CTA scan that confirmed that her aortic arch had scar tissue built up, ironically from her 1st open-heart surgery which was to fix that exact issue. The scan also confirmed that she had a lung problem, which meant that she would need more oxygen support for longer.

    The cardiologists agreed that Miracle should have a catheter procedure performed, on January 24, 2019, to balloon the narrow part of her aorta to allow more blood flow. The doctor who performed the procedure came out and said that the balloon slipped and punctured another part of her heart. This was VERY discouraging. It was difficult to not be upset about the accident because she needed that procedure.

The inevitable happened. Miracle had to have her 2nd open heart surgery two months early because of the damage from the cath. On Friday, February 1, 2019, Miracle went into the OR at Children’s Hospital for her 2nd and last open-heart surgery. I/we were a mess. It’s hard to sign the consent form, agreeing that you understand the risks that you know too well, for a surgery that you know will impact your child’s life. I know that many of you know this ugly feeling. Miracle passed away when she was two months old on February 8, 2019.

It is very important for all of us to raise money for this disease, to support each other through these difficult tribulations, to advocate and to know that we are some of the strongest people. This is for Miracle; this is for all of the Heart Angels; this is for all of the heart warriors.