The Fluture Journey

My name is Christina Gillen, and I am the proud Aunt of Bo, Tess, and Finley Fluture. This Fundraiser is designed to help the Fluture Family with substantial medical expenses, both previous and forthcoming throughout Tess’s journey specifically.

As so many of you know the journey began in June 2019 when Bo James Fluture was born at 27w6d, weighing only 2 lbs. 10 oz. This unexpected early delivery was to no surprise traumatic as Marissa had a healthy pregnancy prior to Bo’s quick entrance. In the moments leading up to his arrival, and in the first hours/days to follow Marissa and Nick feared for the worst. They honestly thought they were going to lose their baby. After 13 weeks in the NICU, Bo was finally able to come home! Luckily during that time, both Nick and Marissa were able to keep their jobs. Marissa then took unpaid maternity leave for 3 months once Bo came home, returning to work in January 2020. Bo stayed with a nanny during that time to avoid daycare germs, and he was all set to transition to daycare in late March. Covid had other plans. Marissa again took unpaid leave to make sure they could protect Bo's lungs until June 2020, when Bo started daycare and she returned to work.

When Nick and Marissa found out they were pregnant with twins and thus high-risk, they once became a single-income household, as Marissa was unable to work. Between the dangers of a twin pregnancy after a preterm delivery as well as covid, the doctors and they decided it would be the best option. Therefore, Marissa was off from January 2021 until June 2022.

At 24 weeks Tess and Finley arrived via emergency c-section. Weighing only 1 lb. 5 oz and 1 lb. 7 oz. The girls were given only a 50% chance of survival. Nick and Marissa knew they were in for a very long NICU stay, so an immediate plan for people to help with Bo, who was now 23 months old unfolded. Family and friends took turns helping daily with Bo, while Marissa and Nick didn’t miss a single day caring for their sweet miracles. Then, in a terribly timed accident, exactly 1 week after the emergency c-section, Nick fell from a ladder and broke his foot. He was put into a walking boot and then cast, using crutches to navigate as he couldn't put weight on that foot. Due to Marissa’s 6-week post-op lifting restrictions, and 2-week driving restrictions coupled with Nick's inability to walk on the left leg or lift Bo, someone was at their Naperville home constantly to help. Family and friends stepped in immediately driving them to the hospital, running their errands, cooking, cleaning, caring for Bo... whatever they needed. A positive light during this time was Nick’s ability to continue working. He would work remotely from the NICU, on car rides to and from, and late into the night. Most of his coworkers and customers never knew what was going on in his life.

On day 8 a middle-of-the-night phone call that every NICU parent dreads came in. Marissa and Nick were told to immediately get to the NICU for Finley. They nearly lost her. When they arrived, Nick and Marissa were told that the NICU team had performed CPR on her tiny body, and she wouldn't be able to tolerate it if they had to do it again. They were told to prepare to say their goodbyes and they would be allowed to hold her as she passed. They asked Nick and Marissa to sign a DNR. Marissa refused. Marissa shared with me that she cried so much she physically had no tears left. She felt so empty yet also prayed nonstop while they sat next to their baby. Finley pulled through like the fighter she is, as her name means fair-haired warrior.

Both girls had multiple pulmonary hemorrhages during their stay, which is what lead to Finley nearly losing her life. Finley's PDA was so big and causing pulmonary hemorrhages, so 5 weeks in, she had her PDA closed via a bedside surgery. Then Tess got a blood infection, which could be deadly. While they knew it was bad, they never really told Nick and Marissa how serious it was until later. During this time, Tess also developed pustules (fluid-filled cysts) in various joints of her body. They had to monitor these with an infectious disease specialist following her case. Both girls had brain bleeds, but Tess's was so severe she developed hydrocephalus. While this sometimes resolves on its own, hers did not. Tess was transferred to Lurie's, downtown Chicago for a subgaleal (less invasive) shunt to be put in and drain the fluid from her brain. They transferred Tess back to Edwards to be with her sister and closer to Nick and Marissa’s home, but the shunt failed. Tess was once again transferred back to Lurie's for a revision of her subgaleal shunt. This didn't work, so she required a third brain surgery to place a VP shunt, which is more invasive. Tess now has a tube that drains all the way from her brain to her belly. She has enough tubing in her belly to be 5 ft 10 in!

Nick and Marissa found that setting goals week to week from the beginning helped them navigate through this difficult time. "Let's just make it to 25 weeks, and we'll call that a win. 26 weeks, 27 weeks, etc." They literally lived their lives week to week hoping and praying for good news and that their girls wouldn't develop NEC, have another brain bleed or pulmonary hemorrhage, or die from a blood infection. They held their breath while also praying all day long. They leaned on family and friends, with people from all over the world and whom they had never even met praying for their family thanks to Bo's Journey (which quickly turned into Bo's Journey and Fluture NICU Fight Club, and is now The Fluture Journey). Finally, after 124 days, 2 NICUs, 3 surgeries, and 4 ambulance rides, Tess Jolie was able to come home!! Finley followed just 3 days later after a total of 127 days and one surgery.

Tess had to return to Lurie's in February 2022 for her PDA to be closed, as it wasn't improving. Nick and Marissa stayed overnight and thankfully were able to utilize the Ronald McDonald House. They had become familiar with and used the room during her first surgery. They had to book a hotel room initially, but then they were able to get into one of their family sleep rooms within the hospital. It was perfect as it was just two floors away from Tess, so they could check on her all night long. Plus it was obviously less expensive than the hotel. They also received a parking pass through Jackson Chance, which they first learned about and utilized during Bo's NICU stay. Because Marissa was pumping, she received a meal voucher for to use at the hospital cafeteria, so at least they only had to pay for Nick's food while there.

Both girls have received PT and speech for their first couple of months home, and they have various other specialists appointments. They began early intervention in January 2022, which meant no more driving to therapy or taking the girls out into the cold. Thankfully, the EI fee has been waived since COVID, but they know that won't last forever. After cold/flu season, Nick and Marissa enrolled the girls in daycare and she returned to work, finally after a year and a half off! The girls LOVED daycare, and Marissa loved getting back to work in a new role within early intervention, helping kiddos like HER own. Unfortunately, the girls couldn't handle the many daycare viruses and germs. They were in and out of the PICU (pediatric intensive care unit) every month from May until September 2022. At that time, Nick and Marissa ultimately decided they should pull the girls from daycare again, and Marissa would stay home with them. Thankfully, this seems to have done the trick as they have been sick many times, but THEY haven't gone to the ER even once! Thank God!

In October, Marissa noticed Tess was up on her toes of the right foot while in standing positions. As a PT herself, Marissa caught something others may not have. A blessing in disguise? Marissa discussed this with the girls’ PT, as she was concerned it could be a neurological reasoning after her brain bleed and hydrocephalus. Fortunately, the PT didn't think that was the cause, but she did discover that the right leg was 2 cm shorter. They set up an appointment with ortho, assuming she had a subluxed right hip. They had x-rays prior to the appointment, and that is when it was discovered that Tess was missing her right femoral head and part of the femoral neck (top of the thigh bone and how it attaches to the pelvis). The orthopedic surgeon asked Marissa about Tess’s NICU stay, and it was mentioned that she had the blood infection and pustules, one of which was in her right hip. He assumes the infection settled into and ate away at her right femoral head/hip bone. This surgeon was great, but he admitted he had only seen one other case like this. He said "maybe" down the road we could do a hip replacement, but he really didn't have a plan for her otherwise. Nick and Marissa were in shock. They literally couldn't wrap their heads around the fact that their baby who had already been through so much was now being given the prognosis of never walking normally, being able to play with her peers normally, and the surgeon didn't even really have a plan.

Nick and Marissa came home and immediately began to research the best ortho programs for pediatrics in the country. At the same time, Nick's sister mentioned that it sounded very similar to a problem her oldest son's friend had, and that she could get them in touch with his mom. Minutes later, Marissa was on the phone with a mom from Michigan who had the exact surgeon Tess needed and knew what they were going through. She was so kind and really positive in chatting with Marissa. She even reached out to the surgeon directly, asking if he could help and sending pictures of Tess's x-ray. An hour later, the surgeon's assistant was calling to schedule Nick and Riss with Tess. A month later they were all set to travel to West Palm Beach, Florida flying down to see Dr. Paley, who is world renowned and invented the super hip for kids. He ordered an MRI of Tess’s hip and pelvis to determine if she has any residual bone or cartilage left.

This MRI uncovered Tess's femoral head is present (top of the thigh bone), but it has not ossified (turned into bone). Basically, she just has cartilage in there that never turned to bone. The growth plate of her greater trochanter (lateral edge of the top of her thigh bone) was affected with the bone infection while she was in the NICU. She will need three procedures in her first surgery: femur osteotomy, pelvic osteotomy, and BMP injections to turn the cartilage into bone. They will also close the growth plate at the top of her femur at this time. She will be in a cast for 6 weeks following the surgery, and Nick and Marissa will be in Florida for about a week with Tess. After the 6 weeks, she will have her cast removed and start PT. The surgeon would like to wait until she is closer to 2 years old in order for her to grow more since she weighs so little currently. Tess’s first procedure is scheduled for August 22, 2023.

Each trip to Florida will require extended stays for pre and post op processes. Bo remains in preschool full-time, and while they had hoped to reenroll Finley and Tess next summer, it is now unclear if Marissa will even be able to return to work. If she cannot attend daycare, Finley will require care at home while Nick and Marissa travel to and from Florida.

The Fluture family has incurred substantial medical expenses since their journey began with Bo in 2019. Coupling in the addition of Tess and Finley’s emergency c-section, NICU stays, surgeries, ongoing hospital stays associated to multiple viruses, and illnesses, ENT procedures for all three kids, etc.,

It is my hope that in reading this story of the Fluture Journey we can come together once again in support of this tremendous cause. Bo, Tess & Finley have received an outpouring of love, prayer, and support since their arrival. After all, Nick and Marissa are true believers that because of your thoughts and prayers their miracle babies are blessing all our lives each and every day! You see prayers are answered, and in this case the lives of 3 beautiful kiddos are proof.

This Go Fund Me is intended to help with the ongoing costs associated to Tess’s upcoming, and future surgeries. This includes expenses for Florida: airport costs of flights/luggage, transportation, meals, Airbnb or VRBO; as well as medical copays and hospital bills. While there is an option for an equivalent to the Ronald McDonald House, they have been told it is not always accessible. This first surgery only requires a week-long stay, but the leg lengthening surgeries will each require a stay of 3 months.

This is the first time a Go Fund Me has been created for the Fluture Journey, and my hope, as Bo, Tess, and Finley’s Aunt is that we can come together as an extended network of friends, family, colleagues, and acquaintances to show our love and support for a very deserving family. All my love and thank you in advance.