Not in a million years did I ever think that we would be spending our baby’s first 140 days in the NICU. A place I had heard of but new nothing about. Now, I know more then I care to. A never ending cycle of doctors and nurses, nurses and doctors. I can tell you what a lead is, an OG (not Original Gangster), a GT, a pulse ox, a brady and a desat. I can tell you that we have met with neonatologist, cardiologist, ent, pulmonologist, endocrinologist, audiologist, neurologist, ophthalmologist, anesthesiologist and physical, respiratory and occupational therapist. Our baby has been put under more times in 30 days then I had in 30 years. An uphill battle indeed but never a losing one!

I remember the day I realize we’d be in the NICU for a while. Everly was 2 days old I was holding her when suddenly her monitors started alarming. Although I had no idea what it meant my heart dropped. I looked down at my sweet baby and she was turning blue in my arms. The nurse tried to wake her but she wouldn’t respond so she grabbed her from me, put her back in the crib, unwrapped her so the cold air would hit her chest, turned her oxygen up and shook her until finally Everly took a breath. Then the nurse turned to me and said in a tone of voice you might tell someone the weather “Sometimes she forgets to breathe.” Meanwhile, I’m fighting back tears cause I’m pretty sure my baby’s dying. This is also the moment I became indebted to and internally grateful for nurses, technology, medicine and science. Since that day as I leave Evie for the night I would tell her she had one job, JUST KEEP BREATHING and since that day she has.

We now know that Everly has CHARGE Syndrome, severe Bronchial/Tracheal Malacia and is completely Deaf. As a result of her CHARGE syndrome she has an underdeveloped right ear, facial palsy on her right side and a is nearly blind in her left eye. The Malacia is what has kept her from coming home. Every time she breathes her trachea and bronch collapse. This is why she needs breathing apparatuses and probably will for the next couple years. Lastly, due to the CHARGE her nerves in both ears did not develop leaving her Deaf and unable to benefit from any type of hearing devices. Of all the diagnoses this is the one that made me cry and I mean the ugly cry. I could deal with a lot but for some reason the thought that our baby would never hear her beautiful name, the one we picked just for her, broke my heart. When we broke the news to our family and friends they without hesitation agreed to learn sign language. I had never loved or felt more loved then in that moment, it would be them that put my heart back together.

Everly has been ready to go home for about 3 weeks now but we're are unable to take her home because of insurance issues. Although, Everly is well enough to go home she is not yet well enough to breath without assistance and depends heavily on a couple breathing apparatuses. In short our insurance has authorized everything, however, they are not willing to pay for a Pulse Oximeter which measures the oxygen in her blood. Because Everly has had episode's of labored breathing and a couple times no breathing at all it's very important she stay connected to the monitor and can not leave without it. Unfortunately, with all of her medical expenses we cant afford to bring her home. 

 It breaks my heart that Everly is missing out on so much, she's never even been outside and until we can break her out she won't.

I have spent my life’s journey trying to prove how independent I am but in the end I have found that it really does take a village!