This week for our Stories of Perseverance series, we're interviewing Jenna Blodgett. She's a mother of three and her son Talmage has gone through some scary health challenges. Read along to see how the family preserved, and found hope.
Who are you mom to?
Emmeline (7), Lila (5), Talmage (2).
Tell us what Hypo-plastic left heart syndrome is:
Hypoplastic Left Heart Syndrome (HLHS) is a congenital (meaning occurring in utero/present at birth) heart defect where the left side of the heart is underdeveloped. My son Talmage does not have a left ventricle, which is normally the workhorse of the heart, pumping oxygen-rich blood to the body. Essentially, Talmage has half a heart. HLHS is considered the most severe and complex of congenital heart defects.
Briefly describe Talmage’s birth story, including his diagnosis and what his first few months of life looked like for your family.
Talmage was initially diagnosed by my OB at my 20-week anatomy ultrasound. I went home from that appointment and started researching HLHS; I read the survival rates and saw for the first time in my life images of babies after surgery with their chests still open. It felt really scary. A few days later we met with a cardiologist at the children’s hospital who confirmed the diagnosis and told us in a very plain and matter-of-fact way that we would “outlive our son”. Those words changed me. Instantly my view on life became eternal in the most real sense of the word.
Talmage’s first few months were spent in the hospital and at doctor’s appointments. He had three heart surgeries within four months. He spent many weeks inpatient at the hospital and the other weeks frequenting doctor appointments. His health was fragile, and he was at risk for sudden cardiac death.
What helped you the most during Talmage’s hospital stay(s)?
“Miracles can happen in our lives as we look to God with a grateful heart. Understanding comes, and strength to endure grows.”
This quote was on my mind so much during this time with Talmage. I knew I wanted to live with a grateful heart and as I tried to do so, I saw so many miracles. My husband and I were blessed to feel happiness and joy every single day during this difficult stage. Our days spent in the hospital were easily among the most special of my life. It was a blessing to spend the weeks we had in the hospital removed from the outside world and focused on just loving our baby. I felt it was a privilege to care for Talmage and his accompanying medical needs. I believe that the more miracles you look for and acknowledge, the more you will see. This perspective shift helped tremendously in enduring Talmage’s hospital stays that inevitably come with worry, heartache, and setbacks.
Who or what helped keep you grounded during so much uncertainty?
I remember one night while I was pregnant, I had gone for a drive and found myself in a vacant parking lot and I just sobbed. I felt so overwhelmed looking ahead to what my son’s future held. And to be honest, I was terrified for what my future held as his mama. Talmage was born into this world with a lot of uncertainty surrounding him. Would I hold my baby? Would his heart be a candidate for surgery, or would we be told intervention was not an option? Would he survive the first surgery? The first hospital stay? Would he meet his sisters? Or sleep in the home we prepared for him? If he did come home, would his heart carry him through to the next surgery? And then what about the one after that? When will things change for him? When will things turn? At 2 years old? Seven years? Nine? Eighteen? I could go on and on down the list of spiraling thoughts that accompany his heart defect. That night in the parking lot I felt helpless and too weak to face our reality.
I think it is important to note that it is okay and normal to worry; we all do, but I have learned to not sit in the worry for too long and instead focus on the present. Staying present grounds me and is possible because I have put my faith in a higher power. There is something to be said for trusting in something bigger than yourself, and for me that is Jesus Christ. I know with certainty that my Redeemer lives. He is my strength, my light, my hope. I know that Talmage is in His watchful care. With my faith at the forefront, those anxiety-ridden thoughts of uncertainty come, but they also go.
What advice would you give to parents in a similar situation (or really any time they are faced with uncertain challenges that accompany parenthood)?
I am paraphrasing a meme I saw on the internet not to long ago (haha!), but it resonated with me. God does not only give children with special challenges to special parents; God gives children with unique and special needs and challenges to regular everyday parents, who choose to step up and be strong for their child! I am confident that child will teach you life lessons that you never could have anticipated, and you will learn how to become the parent your child needs through your journey together.
How did you balance the need of your older child, your new baby, and yourself?
My husband, Rob, and I were constantly saying, “there is no right balance” and for a time there really wasn’t. Rob and I would trade off taking 24 hour shifts at the hospital with Talmage, while the other parent was home with our other two kids. We are fortunate to have a great extended family who provided a lot of support, but even still we were in survival mode. To be honest, I think that simply “surviving” is appropriate and okay for a season and I gave myself a lot of grace in that.
What has this experience taught you about resilience?
Humans are stinking resilient! We have survived 100% of our hard days- no matter how hard those days have knocked us down. That is something to be celebrated.
Update on Talmage:
Talmage is awesome!! Over the summer, he hiked up a little hill in Southern Utah and I cried proud, grateful, happy tears! He panted happily up the incline repeating “I hike! I hike”. He was breathing heavy but appeared unphased. Can you imagine doing these things we take for granted with only half a heart and about 75% oxygen saturations?! He makes us so proud.
Medically, he is not out of the woods, nor will he ever be. He has two upcoming heart surgeries in the next couple of months; those surgeries will be followed by a lifetime of more medical care and appointments, additional surgeries, and likely a heart and other organ transplants. But! TODAY he is living and thriving and loving the life he has been given. He has exceeded our wildest dreams!!