My daughter, Laura, was born at 25 weeks. She arrived via emergency c-section
weighing 1 lb 6oz and 12 inches long. Due to her unexpected early arrival, there
was not time to administer steroids to assist with her lung development. We were
blessed that Laura did not have any brain bleeds or neurological issues, however,
her lungs were so underdeveloped that she was on a ventilator for the first three
weeks of her life. She was released from Blank Children’s Hospital after a 124 day
stay in the Neonatal Intensive Care Unit (NICU). Three months after being
home, she was finally off oxygen. It was a huge milestone!
However, Laura, was diagnosed with Chronic Lung Disease (CLD) and still
struggled with her lung functionality. An annoying runny nose and cough for
everyone else would be pneumonia for her and a hospital stay. We were in the hospital so often with her during the first three years, that we have lost track on the number of hospitalizations. We were lucky that our insurance approved the RSV vaccination for the first two years. She was denied for the third year.
When Laura was three, she came down with what we thought was another cold.
Of course, symptoms started on the weekend. We took her to the walk in clinic
since her pediatrician was closed. After the doctor examined her, she stated that
in her opinion, there was a high probability of RSV. We were immediately sent to the
Blank Children’s Hospital.
At Blank, an RSV test was conducted which turned out positive. Before Laura was
born, I had never heard of RSV. Since her birth, it's been the scariest words a doctor
could say. Laura was admitted and taken to a room. In the few short hours since her
original diagnosis, her breathing was becoming more labored. Her oxygen levels were slipping and she was unable to keep food down due to her coughing. She was put on oxygen and given nebulizer treatments hourly. Besides the evening of her birth, that night was the longest of our lives. Laura was getting worse by the minute. She was unable to sleep due to her symptoms but needed sleep so desperately bad. The next morning, she was moved to the Pediatric Intensive Care Unit (PICU). Laura’s maternal grandparents came to see her that day. Laura was so weak that when she saw her Grandma Susie, she could barely hold up her arms asking to be held. That is a sight that will never be forgotten.
After a few hours in the PICU, her situation was not improving. It was still worsening. It was decided to put her into a medically induced coma. She was in the coma for four days. While we knew it was the best for her, it was a hard to see. She looked peaceful, was getting the nutrients she needed, her oxygen levels were level, and she was getting much needed rest. However, not seeing and hearing her sass, laughter, and smiles was hard.
After four days, she was removed from the coma. She was able to breathe on her own and eat via her feeding tube. It took several more harrowing days to be released from the hospital and ensure there was no permanent damage due to her illness and issues with her oxygen levels. Laura was not out of the woods even after being released from the hospital. We had to keep vigilance on her around the clock to ensure she would not return to respiratory distress. Around three weeks after her initial RSV diagnosis, she was finally symptom free with no permanent damage.
RSV may just be a bad cold to most, but for preemies, it is so much more. We may have encountered missed work, hundreds of thousands in hospital bills, and more stress than a lifetime. However, we are lucky. We have careers and employers that understand, good insurance coverage, and we were able to bring our little girl home. Some are not so lucky.