Austin Thomas Erb
9.14.22-11.26.22
When we first learned that Austin would be admitted to Rocky Mountain Hospital for Children PICU for open heart surgery at 3 weeks old, we were nervous and anxious for what was ahead. However, nothing would truly prepare us for what the next 53 days would bring.
The feeling of leaving your baby in the hands of another is daunting and emotional but we never doubted for one moment that the staff didn’t love him as if he was their own. It made our hearts warm hearing their individual stories and moments with Austin. From snuggle time, to bottle time, and rubbing his fluffy brown hair. There is no doubt that every single one of them fought and pushed alongside Austin each day.
It would be a lie to say that Austin didn’t have odds against him. During pregnancy, we learned I had velamentous cord insertion, requiring close monitoring. Additionally, we had to go to a high risk OBGYN for an additional ultrasound to make sure Austin’s heart chambers developed properly (everything appeared OK at the time). At 37 weeks of pregnancy, I began having high blood pressure and my doctor decided it was time to bring Austin into the world early. We quickly packed our bags and headed to the hospital.
However, Austin didn’t always like to go by the book and was the captain of his own ship. During labor, he flipped into a breech position and we had to undergo an emergency c-section. When the doctor pulled Austin out, his entire body was wrapped in the umbilical cord and the cord was barely attached to the placenta. It was a miracle he made it and that’s when we knew Austin was special.
Immediately upon birth, Austin struggled to breathe and was admitted to the NICU. He spent 6 days there where we were told he was a candidate for VACTERL. He was diagnosed with a butterfly vertebrae, kidney fullness, sacral dimple, and several heart defects (right aortic arch, VSD, and ASD). However, at the time, we did not know he also had a very rare isolated left pulmonary artery (causing PPHN) as this was hard to detect on the ultrasound and would later be detected at his cath. Hearing those words scared us as parents but we would always love him and try to give him the best life possible, regardless of what disabilities he may have had.
Austin was discharged from the NICU with follow ups to the cardiologist in a few weeks. He was home for 16 days before going back to the hospital for a cath after several check ups at the pediatrician showed low oxygen levels, high respiratory rates, and continuous struggle to gain weight. Those days were filled with lots of love and memories we will cherish forever. Although looking back, he may have not been ready to go home, we are so thankful we had the time together. He got to meet his big brother Aidan and we will be sure to remind him all about Austin one day when he is old enough to understand.
It is overwhelming to think about the ups and downs we encountered after Austin’s first shunt surgery. I remember that day like it was yesterday. Kissing Austin goodbye as he was wheeled down to the OR. We were so proud of how strong he was and couldn’t wait to hold him afterwards. However, other plans were made when Austin coded and was placed on ECMO. The team did everything possible to try and get him off but unfortunately Austin told us he was finally done fighting. Like our surgeon always said: we want to do things for him and not to him.
When the day came that it was time to say goodbye to Austin, the doctors and nurses were right next to us every step of the way. Nothing can ever prepare you for the hardest day of your life but somehow it felt beautiful at the same time. Holding Austin as he took his last breath and went onto his next journey. He was no longer in pain - he could rest, we could all rest.
Austin taught us more about life in his short time on Earth than we ever knew possible. Always tell people you love them, cherish not only the big moments but the small moments, live everyday to the fullest, never judge someone because you don’t know what they are going through, to name a few. We miss and long for him dearly each day but we try our hardest to honor him and live our life as if he is still with us in spirit. I can't say that the pain will ever go away because I don't think it will but it just changes shape and form. Just because you look like you carry it well, doesn't mean the grief is not heavy.
Until next time our sweet angel boy.
Love, mom, dad, and Aidan
