Lily’s CaringBridge Site  (link to Lily’s full story)

Hello Everyone,


As many may know, but for those that don’t, our daughter was born at 25 weeks gestational. Lily was hospitalized in two different NICUs and one Pulmonary Rehab floor, for a total of 385 days. 
Lily was born in Orlando, FL, approximately 75 miles from where we lived (Melbourne, FL). While hospitalized in FL for 8 months, Jacob and I lived in Orlando, to be close to our warrior daughter. After an excruciating long NICU stay in FL, we grew tired of the endless wait for our girl to come home, and there was nothing else the hospital could do. With a lot of research, we discovered a specialized program offered in Colorado. So, we moved across the country; Lily and I took a flight ambulance, while Jacob had to stay in Florida. Our daughter was then hospitalized at the Children’s Hospital in CO for another 4 and a half months. 
While in FL, Jacob and I paid for living costs at a hotel near the hospital and our apartment rent in Melbourne, and food (whether hospital food, fast food, or little to few groceries) **Special thank you to New Hope in FL for those that contributed to 2 coolers full of food for us**. We had to pay money towards our daughter’s laser eye surgery, to prevent blindness caused by ROP (retinopathy of prematurity) and finally, moving expenses from FL to CO. We spent our entire savings on these necessary things for our family, and owe more, $9,688 to be exact. This debt stems from the loss of Lily’s social security income and Medicaid insurance. It is the collective amount over 2 years. We have appealed twice, and have been denied; therefore, this sum is due next month in November. With last year’s medical and moving expenses, we are financially suffering, and she has lost her state funded programs.
I spent every day- 385 days- with my daughter; watching her fight for every breath and heart beat. Now that she is home, I am unable to work because I am at home taking care of her. **We are very blessed she is home and growing with us**. Jake is on a fixed income with the USAF, as a senior airman. 
We have shared Lily’s story since day one, the ups and downs, and now I am sharing our truth; our truth of financial need and help. It has been a long and hard struggle these past 2 years not only mentally, but physically and spiritually. Now, we come asking for help, in any way possible and seen fit. We are extremely humbled by expressing our truth to you all, and it is hard to face the fact that sometimes in life help is needed, but we appreciate and are extremely grateful for all those willing to assist. 


Thank you for reading, thank you for sharing, thank you for your endless support. 


With love and gratitude,


Jacob, Sarah, and Lily