A year ago, we rushed this sweet girl to the doctor and then we were immediately sent to the ER. The triage nurse rushed us back, and 10 nurses immediately descended on her. Everyone looked worried. Nobody would tell us why. We thought she had jaundice.
“I see enough that I’m admitting your baby.”
“Did you have a normal pregnancy?”
“Did you have prenatal care?”
“How many ultrasounds did you have?”
“Did she cry when she was born?”
She was transferred lights and sirens to the PICU at the main hospital at TMH, where the doctor there told me it was either her heart or her lungs. Tommy had gone home to pick up a couple of overnight things, both of us thought it would just be a few days in the hospital. I was alone, 10 days postpartum, and receiving some of the scariest news of my life.
“Her x-ray looks abnormal, we are going to get an echo to take a closer look at her heart..”
“We are going to intubate her, she’s working really hard to breathe and I don’t want her to give up...”
I was in such a daze. There was one nurse that kept looking at me with extreme concern. She finally asked, “is there anyone we can call for you? I don’t want you to be alone…”
I explained my husband was coming, he just went home to get some stuff.
She asked if she could get me some food and I realized I hadn’t eaten all day. She brought me a sandwich and a coke. I think I took 3 bites before realizing I couldn’t eat. But I felt sick so I forced a little more down. Then I realized it was bought from the cafeteria, she probably bought it with her own money. I felt bad so I made myself eat half of the sandwich, but after that I just couldn’t.
I was texting my mom friends from church to pray. I needed to tell my husband what was going on but didn’t want to say too much over the phone. Who gives that kind of information over the phone? I told him they think its her heart. He said he was on his way.
It just kept getting harder. Through Wolfson Children’s Specialty Services office in Tallahassee, we were able to see pediatric cardiologist, Dr Vining, and were given a partial diagnosis; transposition of the great arteries and a ventricular septa defect (VSD). We would be sent to Wolfson Children’s Hospital in Jacksonville, Florida for the next four months, for the remainder of her care and through her first and second open heart surgeries and recovery. This is where we introduced to The Healing Hearts Project.
People kept telling me how cute she was. I thought it was such an odd thing to say when my insides were being ripped out. This is one example of how having a community of other heart families who just get you makes a difference.
I had been worried for a few days. Something seemed off but it was also normal newborn stuff when looked at individually. I remember my 7 yo asking why she was still so sleepy all the time. At first I said it was normal, but after a while it was worrying me. I still feel guilty we didn’t take her in sooner.
This girl is such a fighter. She held on. The Lord held on to her and to us. Our family held us. Our tribe held us. We made it through that day. There were many more difficult days to come, but this was the hardest simply because it was the start. The shock. The trauma. The fear. The unknown.
Happy First Heartiversary to Kayla!
- Kayla's mom