Thursday, December 31, 2015


Two weeks ago today Avelyn entered this world and in doing so forever changed mine. I feel I've lived a life time in the short span of 14 days. I became a parent and then nearly lost our sweet baby. Sean and I will never be the same. I don't think we could ever forget the feelings of ineptitude that raged through us as we could do nothing to help our child. I still don't feel like we have much of an opportunity to be parents. Sure we have changed a few diapers and gone to bat with her providers a time or two. But I look forward to true parenthood. I look forward to the mundane. I am ready to put life and death situations behind us. If only it were that simple. We'll have to relieve much of this in just a few short months and that's a heavy weight to bear.
As for Avelyn's progress, she's a little rockstar. She's off the ventilator and all positive support airflow. She's tolerating full feeds via an NJ tube, tomorrow we'll go to NG then work more on PO. She's off all her cardiac medications and is doing well so far. She had her chest tube pulled this morning and is breathing much easier now. The chest tube had been holding her back from taking deep breaths. It was painful so she was breathing shallower. But she never cried so to convince the nursing staff of her pain was a shiftly struggle. The only signs she's have were increased respirations, blood pressure and heart rate. She rarely cries, especially from pain. Most of the time it's because she's angry. (I guess she's a bit like me after all 😉). All in all she's a very sweet baby who is giving it her all. She's still fighting and we're still praying that before long she doesn't need to fight anymore and can be a normal happy baby girl. In the mean time we cheer her on and celebrate each small victory--whether it be a big cough, poo, or first smile--we celebrate them all. Please continue to keep her in your thoughts. She's doing much better and we're so thankful to still have our baby and for everyone's support. Much love to all for the new year! 


  1. So very proud of you both as parents and totally in love with this amazing baby girl ❤️ Mom

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  3. She looks a lot like Sean but she has your fire mama!