If you've met Russell Jane Fulkerson, you've probably gotten a smile, noticed her wearing a bow bigger than her head, and left feeling lighter than before you saw her. I know we're partial, but she lights up the room, loves her people hard, and wants to be smack dab in the middle of the party. To say she is loved would be an understatement.
After finding out you're pregnant, the first big milestone is hearing your baby's heartbeat. When we found out we were pregnant with our rainbow baby, we waited (less than patiently) for the appointment that we got to hear our little's. We heard her loud and clear at every single appointment (and we had some extras). Russell 'Elle' Jane Fulkerson came into this world on her own terms, but perfect in every way.
The next day, during a routine newborn check up at the hospital, the nurse practitioner asked if anyone had talked to us about her murmer. Our first response was, 'what murmer'? They suggested an echo, just to take a look. When Ben and the baby got back to the room, he said they took hundreds of pictures, and we were starting to think that was a little odd. When the nurse practitioner came back with the results, I said that he could update me and to let Ben keep sleeping. The NP said that we really wanted to wake dad up for this one, and I think I stopped breathing and my brain stopped comprehending information after he said that our sweet, perfect, sassy, little princess had a hole in her heart.
Before that moment, Tetralogy of Fallot (Tet) didn't mean anything to us. For months it was almost all we talked and read about. And now, it's an opportunity to advocate and educate. Tetralogy of Fallot is a congential heart defect, but because our family doesn't do anything in a small way, it's actually 4 heart defects all at once. The 4 components are 1. a ventral septal defect (hole) in the bottom wall separating 2 chambers of the heart, 2. an over-arching aorta, 3. narrowing of the pulmonary valve, and 4. thickening of the heart muscle because it's working too hard to keep the blood in the right place. (We later found out that Baby Elle had another hole at the top too!)
At about 24 hours, we were transferred to the Norton Children's NICU and started our heart journey. We read, studied, reviewed medical papers, and asked as many questions as we could. We luckily got to go home just 5 days later, but we knew we weren't done with the scary stuff yet. We were on the clock to get to 4 months old and over 10 pounds so we could have open heart surgery.
During this waiting period we had doctor's appointments, scans, tests, lots of prayers, and tried to keep our heart baby in a bubble while also making sure she got to really live. Tet Babies have a tendancy to turn blue, have trouble breathing, and generally fail to thrive because their body is working too hard to do it's most basic functions. While we lived on edge waiting to respond, we were some of the lucky few that didn't have any emergent needs or hospital visits before our repair.
On surgery day, we hugged our little peanut and watched her get carried back to get prepped with a smile on her face. While the staff was lovely, I don't ever want to have to wait in a room like that ever again. We got updates every 45 minutes, and the best and worst one is when they told us that her heart started beating again when she came off the bypass machine. I think we kind of forgot that our perfect, little girl's heart wasn't beating on its own for a few hours. When we talked to the surgeon, he said she had her full repair and he was able to preserve the valve. In non-heart patient speak the surgery was a slam dunk, hole in one, last second touchdown to win the championship, or whatever perfect moment you can imagine. We went in for surgery on Wednesday and we were home on Sunday to watch the lead group play their round in the Master's.
Since surgery, we've been told by multiple doctors that her zipper scar is the only reason you would even know she had something unexpected medically.
She exceeds milestones, but most importantly she lives to the max. She has girl's nighted, watched horse races, gone to football games, flown first class, laughed until she fell over, chased her cousins, made strangers smile, and every day with her is a new adventure.
If you've read this much of her story, then I hope you'll consider supporting the research to better detect and study congenital heart defects and to support the families that aren't as lucky as ours.
Congenital heart defects are the most common birth defect at 1 in 110 babies.
Tetralogy of Fallot is found in 1 in 2077 babies.
And Elle is one of a kind.
Thank you for being part of Elle's Entourage!
