On August 30, 2017, Adelynn Rose made her way into this world weighing 7lb 2oz. Not too shabby for a 36 weeker. She was full of color and seemed absolutely perfect, but the nurse's face had a look of worry and concern. After a short 10 minutes of skin to skin, Addy was taken to the hospital's NICU for observation from the on staff pediatrician. We overheard talks of breathing difficulty, but we weren't receiving any answers. Why couldn't we hold our baby? Why can't she be in our room? We were moved from l&d and moved to postpartum before meeting with anyone regarding what was going on.

Once in postpartum, family began arriving to welcome our newest sweet girl into our family. Behind them came the pediatrician with news we never in a million years though we would receive. She needed to be transported to Cincinnati Children's NICU to be further observed by specialists. They were not comfortable sending her home without being at least seen by their team. I was released four hours after delivery, and at just seven hours old, Adelynn had her first ambulance ride.

The next day, ENT came to Addy's bedside to scope her airway, and it was confirmed she had a severe case of Laryngomalacia. Next step, sleep study. The sleep study has revealed how serious her condition was, and that Addy also had severe Obstructive Sleep Apnea. At just 15 days old, Adelynn had her first surgery. The recovery was pretty brutal, but after 26 days the the NICU, we were able to come home! This however did not mean that we were out of the woods.

When at our now 4 year old's dance practice, another parent asked me how she was doing. I explained that she has been so tough, but she has a long road ahead of her. The response, "SIDS is her middle name!". Those words haunt me everyday, but it's unfortunately not far from the truth. When released from NICU, we came home on constant oxygen and pulse/ox. If it weren't for that monitor, we would never know when she would struggle to breath, and we wouldn't know when to rush back to children's. That monitor is her life savor, and our slight peace of mind. That monitor is what helped lead us to multiple overnight admissions, a MRI and another sleep study. We probably wouldn't have had a follow up for another six months! Instead she had a follow up that taught us that her first supraglottoplasty was unsuccessful, and she will be making her way back to the OR. Adelynn has since had a second sleep study that revealed the OSA has not improved, and she now has Central Sleep Apnea as well. Her body is essentially becoming dependant on the oxygen, and her levels are continuing to drop lower than before.

Adelynn will have a second surgery next week in hopes of repairing the airway.

There is nothing to prepare you for being a NICU parent. Nothing anyone can say usually makes it better, but it does get better. I believe there are angels on Earth, and they are NICU nurses. The teams that we have seen along with doctors and specialists have been more than amazing and have done everything in their power to not only help our now 2 month old, but to make our family feel as comforted as possible. It's tough trying to juggle home life, sibling(s), running out of FMLA and praying that your company will approve an administrative leave because your child has 3 appointments a week. Trying to find a sitter for your oldest and hoping your s/o is off work in time to take her to dance and cheer. Looking for a way to explain why sissy has to go back for another test to a toddler is rough, and finding time to go to the grocery is almost impossible, but it is possible. And it will get better in time. If it weren't for the excellent team at Cincy Children's and their positive attitudes, I'm not sure we could've stayed as positive as we have!

This may seem like rambling, but it is our story. My best advice would be not to blame yourself, and to be thankful for the ones that are going/ habe went out of their way to get our babies home!