Last Monday I wrote about Veronica’s first day – or at least the first 12 hours. By mid-day it was clear that the delivery hospital was not equipped for Veronica’s needs. In addition to requiring oxygen and an extremely rare eye condition, everything on her body was a little asymmetrical. One ear looked a little different from the other, she held her hands and feet differently, she had red marks all over her forehead and eyes, and her body curved a bit to one side. We were transferred to a more specialized hospital nearby.
Knowing what I know now, we should have requested to go directly to Children’s Hospital. Prior to this we had had very little medical experience, what the doctor said is what we did. And we were still in a state of shock, I guess hoping that someone would explain everything and tell us how to help our baby.
We arrived at the new hospital and they decided to re-run all of the tests that had just been done, doctors were buzzing around like Veronica was a specimen for an experiment. I held V tight, Todd got angry. The transition to becoming an advocate for our child was turned on like a switch. The hurt and fear was still there, but it was now being channeled toward taking care of our baby. We demanded that no tests be repeated, and realized that ultimately we were the only ones that had her best interest at heart and would be making decisions for her best life.
The quest to find out more about Veronica was in full force over the next 12 days. Every morning would start with scans, new specialists, new theories. Every night would end with the NICU doctor non-chalantly dropping a bomb, “We think Veronica might have (insert something horrible here – we heard it all).” Then she’d turn to go home, her work complete and we would sit with this new frightening diagnosis all night.
It’s funny what a dose of compassion can do. Compassion or a lack thereof came in extremes at this time. Some doctors or specialists were so callous in what they would say, in stark contrast to the empathetic and practical knowledge of others. We could have used a little more of the latter.
One of the first tests was for hearing. The tech took us to a small conference room and hardly said a word to us as she set everything up. She seemed more involved in her cup of coffee. After the test was done she packed up and handed me a flyer as she walked out.
The flier read, “Your baby has failed the hearing screening, what next.”
Wait, WHAT???!! She’s blind AND deaf? Once again, my mind reeled, looking for a way to take this in.
I asked the tech, “Everything else presents like she’s premature, is it possible that there’s some fluid in there, or something just needs to develop a little more?”
The tech answered, “No, you need to schedule more hearing tests when she’s 10 months old.” She turned and walked away, leaving us speechless.
Stunned by the news, we carried our tiny baby back to the NICU, pulling her oxygen tank behind us. Todd held Veronica and talked to the nurses, I walked back to our room and took a shower where I wailed and prayed for answers.
“How will my baby know I love her if she can’t see my smile and hear my whispers? I don’t understand why this little sweet girl has to face MORE challenges! How am I going to be a good mom for her? I’m not strong enough.”
With more questions than answers, I got dressed and returned to the NICU, scooping up my precious little one and holding her close.
Once in my arms, the answer came. It was going to be OK, I just needed to take care of Veronica. I just needed to love and hold my little girl, the rest word sort itself out.
The next morning our no-nonsense, very wise geneticist came in and we shared our experience with the hearing test. She clapped her hands over Veronica and Veronica blinked. The doctor said in her thick German accent, “Oh, all these fancy machines. Clearly this child can hear.”
We all laughed, relieved to have some great news, and at the reminder that the “fancy” tests don’t always hold all of the answers. We were beginning to see that one test, one doctor, one diagnosis is not the end of the conversation. Our bodies are complicated and the answers are not always apparent or easy to find.