Veronica spent the first 12 days of her life in the NICU, every morning beginning with new specialists discussing new theories, running new tests. Every night ending with the NICU doctor reporting on the day, then non-chalantly dropping a bomb like, “We think Veronica might have (insert something horrible here).” Then she’d turn to go home, her work day complete, and we were left to sit with this new, frightening diagnosis all night, waking up to start that gut-wrenching cycle all over again.
Our extended family made sure that our 2 and a half year old was well cared for, visiting the hospital everyday to support us, encouraging us to take breaks. It was hard to leave even for a short time, but I needed to make sure that my older daughter was doing well, too. I took her for a walk to a nearby park during one of those breaks. I remember how bright the sun seemed after being inside for several days, and as I looked around it struck me how silly so many of the things are that we pursue as humans. So many meaningless things occupy our thoughts and drive our lives. I was learning how precious and precarious life was. I enjoyed the constant commentary from my little chatterbox as we walked along holding hands. My heart was still heavy, but the break with my girl felt good.
Day after day, there were no new answers. What we knew for sure was that Veronica had a condition where her eyes didn’t fully form – severe bi-lateral microphthalmia – which none of the doctors that we met had seen before, let alone heard of. We were told the chances of this condition were 1:300,000,000, although I have read different figures. She was blind and we were told she would never see. She also needed oxygen, but the reasons why could not be determined. She had many asymmetries, including her eyes, ears, and lungs, but nothing that made sense to geneticists. She had a slight atrial septal defect (hole in her heart), but we were told it was tolerable. She wasn’t gaining weight very well. Born at 5 pounds 13 ounces, she was barely back to her birth weight by day 12, despite a healthy appetite.
We also knew that being in that environment of the NICU everyday was not healthy for any of us, and Todd asked what it would take for us to go home.
The thought of going home was so appealing, and so terrifying at the same time. I wanted desperately to take my baby home and rescue her, and us, from the insanity of the daily barrage of specialists and tests. I wanted my family together. I wanted normal. But I had no idea how to manage a child that needed to be on oxygen 24/7. And what if something went wrong? The NICU offered a safety net.
We petitioned, and the doctors agreed that we could be discharged. We took a CPR class and packed up our little one, oxygen tank and all, and headed for home. I felt liberated. We had no idea what the future held, but we would face it together. It was just the beginning. There’s no place like home.
I had just the opposite prlebom with my daughter. She was born normal and healthy, but I was the one in ICU for 3 weeks after she was born. I thought she wouldn’t even know me, and that she wouldn’t like me. I had all the same feelings you do. But your child will know you the minute you are able to take him home. He’s heard your voice for 9 months, he knows you and he knows who you are. He’ll bond with you as soon as he’s able. Jaundice is OK. Most babies will get this. They can fix it, so don’t worry. Also, your motherly hormones are kicking in, you want to be with him, and you can’t. You worry more about this than he does, I promise. I held my daughter maybe 3 times in her first 3 weeks of life. Once I got home from the hospital, she took right to me. She knew me, and your son knows you, too. He just has to get better first, then you can hold him all you want!!
Dear Karin,
Thank you so much for sharing Veronica R.’s arrival into the world and the immense responsibility and trials you went through and amazingly you and your family are still enduring.
You are an example of fortitude and perseverance and most of all you are transmitting the love of God to Veronica.
I love everything about your story. I love that you look 12 in this picture. I love that V looks like V and I love that you and Todd are still going strong doing whatever it takes for the precious girl every day. You are inspiration to every mom, not just moms with special needs babies.