The Heins Family

Our beautiful daughter Zariah was born at 33 weeks and 5 days by C-section. She had to be given surfactant just hours after delivery and was placed on a ventilator briefly. As weeks passed she did not give cues to oral feed and continued to have desats during tube feedings. On April 16 she had a significant spell (a spell is when oxygen and heart rate decrease) that scared everyone, she needed to have the nurse use a PPV. Since then the neonatologist have been trying to figure out what may be causing our little Zariah to not want to oral feed. After an MRI, EKG, a scope of the anatomy of her mouth through her nose, and an initial genetic test, everything came back good. Then several days later after a dose of caffeine which should decrease  her from having a spell she had two over the weekend. This led the doctors to want to do an EEG. After 2 days of assessing her they determined Zariah has encephalopathy. We were told things by the neurologist that broke our heart, but I looked at her and told her she was not God, she would not tell me what me daughter would not do and she most certainly would not take away my hope! Because of her not showing signs to oral feed, acid reflux and desats they have suggested a g-tube. This idea seems very scary but if it will help her cross the bridge to feel better and hopefully oral feed and we are going to move forward with hope. I have not gone back to my job as an infant teacher for 6 weeks, and given the uncertainty of exactly how things will unfold, I plan to take a little more time off from work. Our biggest need right now is paying our rent. If you are able and would so graciously help us. We would be so very grateful! Thank you for reading our journey and if your able to donate we would be so appreciative! Please keep our little Zariah and our family in your prayers! Thank you!