Since I went full time with Meant to Fly Photography in February of this year, I’ve spent my entire time at the hospital with my son, Ryan. I’m a pretty open person, as I truly feel that I was placed on this Earth to tell the stories about those around me, including myself. I choose to tell those stories through both pictures and words, and beginning this year I’m going to be even more open with this platform about my life, my struggles, and my successes. This month, it happens to be a story about how I witnessed a true miracle happen right in front of my eyes.
In case you are new here, my husband Justin and I had our son August 26, 2018 and named him Ryan Leroy Edwards. He was born with beautiful green eyes that turned blue like his momma only weeks later, reddish brown hair like his daddy and an extra chromosome that makes him his own amazing person. With being born with Down Syndrome, he had a chance of having some medical issues as well, and the medical issue he was born with is a heart defect called AVSD. We knew all this during pregnancy and that he would require open heart surgery at some point. Well, that time had come. At just under six months old, Ryan weighed only 10 pounds 12 ounces (only 4 pounds 5 ounces up from his birth weight) and was not thriving how he should have been at his age, so it was time for his heart repair. He turned six months in the hospital and will possibly turn seven months here as well.
My son went in for open heart surgery on Friday, February 22 and surgery went great! During the surgery, they had to hook him back up to the bipass machine during it once and fix something and it took an extra 90 minutes than planned, but overall it went without a hitch. That night he rested well and things were looking amazingly, we were so relieved! I literally felt like a whole new person knowing that the worst was behind us and we could just look into the future, start the recovery process and finally have a thriving baby boy who isn’t struggling everyday.
The next morning he was extubated and the doctors were so happy with how that went, he took it like a champ! An hour later, as I was getting ready to lay in bed with him, Ryan suddenly coded. The surgical team rushed to the hospital while CPR was in progress, and his chest was opened back up and was placed on ECMO. In case you’re unfamiliar of what ECMO is, like I was, it is life support, it literally functions as your heart and lungs. He had two tubes (canulas) in his chest and his chest was left open for the entire time he was on this life saving machine. These canulas took his blood from him to the machine, oxygenated it and then put it back into his body. Ryan was having lots and lots of troubles with bleeding during this time and had a total of about 57 blood transfusions.
Then six days later, late at night some things happened and he went into emergency surgery in attempt to get bleeding to stop and came out of surgery no longer on life support. He’s truly a miracle baby, there’s no other explanation for how things have worked out and how amazingly he’s doing only 3 weeks after the start of the events. His kidneys shut down and was placed on dialysis, his left lung collapsed, he had to be placed on the pacemaker randomly, his left foot was injured and he got a blood clot in his left leg. He was sedated and medically paralyzed for nearly two weeks, and heavily medicated. It was 16 days before my husband and I were allowed to hold our baby boy, and let me tell you that 16 days felt like an absolute eternity and hell on earth to be quite honest.
Now he’s recovering very well, his kidney function is back in working order, his lung is no longer collapsed, and he’s been off the pacemaker for officially one week now. His doctors and nurses continue to be surprised by him daily and he is beginning to be his normal happy self who’s loving life. The last few days, he’s been up and playing in the mamaroo, sitting in a chair, and flirting up a storm. I cannot put into words how amazing it is to see that smile again, when just a short time ago I was sitting at his bedside at the darkest time of my life, praying for my baby boy to make it through and to see those eyes open once more.
We truly have been blessed with the very best friends, family, and strangers who have become cherished extended family during this entire situation. On behalf of my husband, my son and I we thank each and every one of you who support us in one way or another. The thoughts, prayers, and help during this season has not went unnoticed. Your support by allowing MTFP to photograph you and telling the story of YOUR life through photographs is one of my biggest blessings in life and going through this situation has made me even more humble, grateful and appreciative of the blessing of photography. I have captured all but six days of this hospital stay, for us to look back at and allow our son to see what he went through and overcame in years to come. While he likely has another open heart surgery in his future, we aren’t going to focus on that right now.
Ryan has the absolute best medical team who has literally saved his life on more than one one occasion here at Mercy in the last few weeks. We will forever be indebted to every single one of them, I feel like words do not even scratch the surface of how grateful we are for what they have done for him. Between them, modern medicine, modern technology and power of prayer, a miracle happened and my son got another chance at life.
I’ve been so blessed to be able to work from anywhere, as my own boss. I’ve been educating myself with webinars and booking new sessions/weddings while being right here in the hospital with my husband and son. For that I want to THANK YOU for allowing me to have the very best job in the entire world and having the very best clients I could ever ask for. I will never take this opportunity to have my absolute dream job, for granted!
All my love,
Victoria
#teamryan