Wyatt the Warrior
Hey gang! It’s been a minute, almost four months to be exact, but I thought I would fill you all in on what’s been going on with our wild bunch and give you a glimpse of what life is like now around here. March 1st is the start of Trisomy Awareness Month so I thought what better way to bring awareness than to share our story of our baby boy Wyatt. Don’t worry the food will be making it’s way back soon!
By Google's definition Trisomy 13 is “A condition in which a person has an extra chromosome 13, which causes severe intellectual disability and physical defects.” Most infants with this condition don't live past their first week of life. The real kicker? They don’t even know why it happens, it just does. It’s nothing you do or cause, it just happens.
At the start of quarantine when this blog idea had just started to slowly grow, Paul and I discovered I was growing something of my own, our second baby. Obviously thrilled but definitely scared to be so vulnerable during a time of such uncertainty.
I had just been pregnant with Logan not even a full year before so it wasn’t hard to fall back into that mommy-mode but the restrictions of a global pandemic really made a glaring difference. I remember being grateful that this was at least my second go around and that Paul not being allowed at any appointments wasn’t as hard as it actually was. My pregnancy was seemingly normal, looking back at my 20 week ultrasound there was a moment where the technician got quiet and weird. She had called in the doctor but they assured me everything was normal and sent me on my way. I had opted not to get any genetic testing done for a few reasons, I am young, I have a perfectly healthy toddler and I had done it with my first pregnancy. Also my insurance did not fully cover it and let me tell you it is not cheap! I didn’t even give it a second thought.
Before I knew it 37 weeks flew by and a week before we could start our full “two week before baby lock down” Wyatt was starting the show a little early. Now with Logan I was two weeks late and had to be induced so I for sure I thought I would be late again but the morning of November 12, 2020 I woke up to a few weird pains around 4am. It wasn’t until maybe the third one I even thought “could these be it?” I immediately got up and started getting any cleaning and laundry I could get done all while timing my contractions, which were almost 5 minutes apart pretty quickly. My mother-in-law made her way down around 8am and we headed to my doctors office just to be sure. Paul and I couldn’t stop laughing, thinking how wild this all was. We didn’t get to do this with Logan so it just felt so surreal especially for the planners that we are.
Sure enough I was already 6cm and in active labor... again we laughed. I walked my way with the nurse to the L&D floor and checked in. Not long after I got my epidural and Paul was squaring things away with work. By 12pm I was 10cm and almost ready to push. We both kept repeating how wild this was and couldn’t stop our slightly nervous but happy laughter. Finally it was time and with only 15 minutes of pushing Wyatt came into this world with such ease. So much so I told the doctor “that was easy”. I was almost sad that it was all over so quickly I weirdly love labor and delivery, it’s such a rush!
Our joy and laughter immediately turned into panic, we knew something was wrong. The doctor started quickly pointing out some abnormalities, small eyes, and extra toe, a piece of his scalp that was not fully developed and a few other obvious defects. Wyatt’s breathing required extra oxygen and positive pressure so they hooked him up to CPAP and rushed him up to the NICU. We were then later informed that they believed Wyatt had Trisomy 13. We had no idea what to do or think. We immediately started googling which of course is a mistake. Right there in print “7-10 days” the typical life expectancy with a T13 diagnosis and a list of other horrifying statistics. We were devastated. To top it all off we of course we’re still in a global pandemic. Which meant no family, no friends and limited access to even seeing Wyatt in the NICU. We waited a grueling 10 days to be finally crushed with a confirmed diagnosis of full Trisomy 13.
During our 22 days in the NICU each time we went to visit still seemed unbelievable. How could this be happening? How am I now a mom with a baby in the NICU? How am I now a mom of a terminal baby? Just how? All of Wyatt’s initial anatomy scans showed no major brain or heart abnormalities which is usually what causes such early loss in T13 babies. Each day Wyatt would make small progress, he quickly came off of all oxygen support, he was mainly being fed with an NG tube but was starting to take feeds orally and gaining weight. Each day the nurses would share these small victories and all I could think was “great, but he’s going to die?” I didn’t get it. I didn’t understand. I’m being told he won’t live past 6 months to a year but he’s progressing well? How do you take happy news when it’s shadowed with the devastating future. It wasn’t until later I learned there can be a spectrum of full Trisomy 13. Each week that passed Wyatt continued to thrive. I started finding more and more babies and even young kids with full T13 through social media that were thriving the best they could be but still enjoying life, alive. We are not naïve to our situation, there’s no guarantee that Wyatt will continue to do as well as he is doing but there is also no guarantee that he won’t. So for now we take everything one day at a time and celebrate the time we have with.
As of today, Wyatt is blind, deaf, has a tethered spinal cord, and an abnormality in his kidney (which as of now doesn’t affect him). He has been off his feeding tube since the end of December 2020 and continues to eat and gain. He’s starting to coo, squirm around and suck his hands. He’s starting to be a baby. He has a wonderful hospice and palliative care team that help us through any concerns or questions, but we are ultimately just following Wyatt’s lead. We are still learning every single day and this is definitely a life I NEVER could have imagined, but we are here now.
Everyday we get to love Wyatt and learn more about what his life may look like. There is so much unknown, which might be the hardest part, but we are lucky. We’ve gotten so much time with him that most families don’t get. My dreams for Wyatt and Logan look so different now. Sometimes it’s painful to remember they won’t get to grow up together, play catch, get into trouble, crack jokes at my expense. But they do get to spend this special time together and hopefully can learn from each other. Wyatt has taught us so much and for that we are grateful.
