- J
Our youngest son, Evan, was unexpectedly born on September 17, 2021 at 26 weeks and 5 days gestation, after I was hospitalized for a blood clot in my leg. Having had a completely healthy and uneventful pregnancy, this was a shock to say the least. He was born weighing 1 pound 11.9 ounces, and was immediately flown via medi-flight to a Level 4 Neonatal Intensive Care Unit in Sacramento.
In addition to being a micro-preemie, it was discovered after Evan’s birth that he was born with an incredibly rare genetic condition, ultimately diagnosed as Type B Long-Gap Esophageal Atresia with Tracheoesophagael Fistula (he was born with his stomach and esophagus disconnected, and a portion of his esophagus attached to his trachea). Because of his extreme prematurity, he was unable to receive any treatment or intervention for this condition for several months.
We spent 150 days in the NICU 90 miles away from our home, driving back and forth daily to see him while our older boys were in school. Life at home was focused on Easton and Everett- school, homework, sports, extracurriculars, dinners, bedtimes, and as much enjoyment as we could muster. Weekends were spent in Sacramento in order to have more time with Evan and attempt to get some reprieve from driving almost 200 miles every day.
After multiple surgeries and unsuccessful repair attempts in Sacramento, Evan and I flew to Boston, MA on 2/14 for his care to be continued at Boston Children’s Hospital, who has a world renowned EA/TEF program. Matt, who is back to work full time, stayed in Chico with Easton & Everett to hold down the fort at home. For the past 50 days, Evan has undergone multiple surgeries and follow up procedures to repair his EA/TEF.
These past 7 months have been overwhelming for our family, both emotionally and financially. During this entire period, I have continued to work mostly full time, since we couldn’t afford to go down to one income with all of our additional expenses. Matt was able to take a brief leave of absence, but it required him to deplete all of his sick, vacation, and comp time, leaving him in the position to have to return to work after a few months or face taking unpaid leave. Our medical bills, both for Evan’s care and my initial hospitalization for my blood clot, have been immense. The strain of paying for lodging, gas, and meals for the past 200 days while traveling back and forth to Sacramento, and now in Boston, have been challenging to manage despite our best efforts to cut costs everywhere we could. With our discharge approaching, we are now happily collecting all of the necessities for bringing Evan home (we weren’t able to have a baby shower since he came so early).
Even after we are discharged home, Evan will continue to need extensive follow up care for at least the next few years. This will require ongoing trips to Sacramento and Boston for further treatment and therapy. His medical team on both coasts will include a variety of specialists to monitor both his EA progress and the residual effects of prematurity. He will also continue to depend on specialized medical equipment and supplies during this time.
We have done everything we can to mitigate costs and make ends meet as best we can. Matt and I are both hard workers, and absolutely hate having to ask for help, so this experience has been incredibly humbling. People have already been so generous, and we are so grateful for the kindness shown to our family.
As our discharge date approaches and our expenses continue to mount, have reached a point where we are swallowing our pride, and calling in a lifeline.
Any contributions will go towards paying outstanding medical bills, cover the cost of Evan’s ongoing care, and help mitigate expenses associated with traveling for his treatments.
Evan has proven time and time again he is an absolute warrior. The obstacles he has had to overcome in his short life have been beyond comprehension. There was a period of time when there was a very real possibility we would never get to hold him in our arms, let alone bring him home. The fact that we are even at this point now, is a gift that’s not lost on us. We thank every single person who has been a part of our journey and offered support, words of encouragement, and helped us take care of our family.
*EDIT*
We have had people reach out asking for alternative ways to helps us. The following is Kayla’s Venmo and the registry for Kayla baby shower.
Venmo: kaylagates1010