Jubilee’s Story - We Remember

Hello. My name is Lyssah Fry and I am starting this fund on behalf of my daughter, Jubilee.

Jubilee Nileen Fry was born on August 21, 2021. Born at 25+6 weeks gestation, Juju (as she is known to all who love her) entered this world weighing 515 grams (1 lb 2 oz for us non-metric folks) and 10 inches long. To put it into perspective, that is smaller than an Elf on the Shelf). The medical team didn’t expect Jubilee to last very long, but Juju has shown herself to be a fighter, overcoming multiple issues over the past year. Jubilee's first year has been fraught with obstacles that God has continued to bring her through.

As a family of 5, we had no idea what the coming months held in store. Our three children at home (ages 5, 3, and 1) knew they had a little sister and regularly wondered why Juju was still at the "baby doctor" and why mommy and daddy had to be gone for stretches of time. At the time, we had no idea that they wouldn't get to meet her in person until many months later (as I write this, our youngest two are preparing to meet her for the first time on her first birthday...still in the NICU).

At 8 days, Juju was in a state of rapid decline. She was placed on an oscillator vent and remained on this high-pressure vent until she was 23 days old. At 23 days old, after moving back to the conventional vent, we were able to hold her for the first time...a day I will never forget. In November, we almost lost her again as her lung collapsed. She was placed on the oscillator again and the doctor invited me to sit by her as they had done everything they could. That night, I watched her saturations climb up from the 40's, one by one until the following day she was finally back in the 80's, and her team was amazed she made it through the night.

At four months old, just after her actual due date, we transferred from our original NICU to one of the best Children's Hospitals in the south, due to their BPD specialty clinic. At six months, after three failed extubations, it became clear that Jubilee required more time for her lungs to grow before she could survive off of the ventilator. It took two months for her to be stable enough to move forward, but in April, she received her tracheostomy and gtube surgery. Her official diagnosis is Chronic Lung Disease, Bronchopulmonary Displaysia, severe malasia, and Pulmonary Hypertension. Due to her prematurity and extended intubation period, she is also working to overcome high muscle tone and NICU delirium.

I wish everyone could meet our girl in person. She has a big personality and has literally captured the heart of anyone who has interacted with her. From neonatologist to the amazing facilities crew that clean her room, Jubilee spreads joy and hope to everyone she comes in contact with. Her smiles are infectious and her unwavering fight inspiring. Her team has come to the end of their ability multiple times and has waited for the end only to see her come back stronger than ever.

We have had many nights where we didn't know if Juju would make it through, but God has shown grace and mercy and Juju has overcome every obstacle she has faced. As we approach her first birthday, we are excited to be nearing some big milestones that will hopefully allow her to come home soon. Her journey is not over. Because of her medical complexity, there are quite a few things we will need to get to prepare to bring her home. Many have asked us how they can help or if we have gofundme. We so appreciate the offer and we are so grateful for any help people feel God laying on their hearts, as it will require changes and adjustments that in the natural, we don't have the money for...but we know God will provide.

This past year has been day by day, week by week, holding onto hope and faith with every last ounce of hope inside of us. Emotionally, physically and financially, every limit has been stretched, broken and duct taped back together.

Thank you for taking the time to get to know her and for walking this journey with us. Below I am including our ongoing list of items we need to get in preparation for her coming home. Additionally, we will be physically preparing our home for her, including professional cleaning of our ducts, home, and vehicle, to remove any potential irritants or things that could impact her sensitive repository system. If you would rather purchase an item directly, you can do so via the Amazon list. We also believe in accountability and we want you to know what your money is going towards. Any extra will be put towards expenses incurred while in the NICU, that arise in direct connection to our NICU stay (bills, gas, child care, etc) or need that we are unaware of at this moment.

Thank you for your care, and support over this past year and over the future to come.

At 1:36 PM CT on Sunday, September 18th, Jubilee went to be with Jesus. We know her earth bound life is over but her story is still bringing hope and life. If you have donated toward her coming home and would like a refund, please contact Fo Fund Me’s customer service. If you would like to donate in her memory you are welcome to. Thank you again for walking through this with us.

Cameron and Lyssah Fry