On May 11th my husband and I welcomed a full term baby girl into the world. While everyone says that being a first time parent never goes as planned or as expected, no one could have prepared us for the journey we have been on. Despite being full term, Lyra has failed to thrive, and we are still trying to figure out why. Yesterday she turned one month old. Instead of taking silly pictures with a “1 Month” sticker, I was taking her to the ER and later admitting her to Children’s Hospital for the second time. I still look a picture, but it was a quick shot in her car seat before running out the door. In her short month in this world, she has been in the ER 3 times, taken 2 ambulance rides, been in the NICU twice, and now is in the PICU. This blog is our journey, my way of updating friends/family, and my way of coping. My little one is a fighter. Now, we just have to teach her how to thrive.
It’s been almost 2 years since I first started this blog and we have many more answers…. and questions. Lyra is THRIVING in her own way, and we couldn’t be prouder of our little fighter. Here is what we now know:
Lyra has 2 VERY rare chromosome disorders called 9p Trisomy and 16p Deletion. The documents provided don’t address Lyra’s specific duplication and deletion, because there simply haven’t been very many documented cases. Also, Lyra is the first documented case of someone having BOTH disorders. The doctor’s really don’t have any idea what to expect. When we received the diagnosis (she was about 7 weeks old) we were told that she would have substantial physical and mental handicaps. While she is doing much better than were initially told to expect, she does have significant physical and cognitive delays.
Lyra was also born with a number of physical abnormalities that were slowly discovered over the first year of her life, during many hospital stays (10 in her first year), a few scares, and more tests than I care to count. Lyra basically has abnormalities in her brain, heart, airways, liver, kidneys, and GI tract. She also has struggled learning to eat, hence her feeding tube.
We are so grateful for all of the support we have received. Stay tooned for more updates!
So much has happened in over the years. Lyra is turning 6 in a few months and, as you can tell, our family has expanded. Lyra is a great big sister and is gaining new skills all of the time. She is still non-verbal, but she tries to communicate with us using gestures and touch. Her health is always a bit of a roller coaster, but we are along for the ride. Thriving may look different for us, and that is okay. But we are learning what thriving means for Lyra as an individual, and for us as a family.