By Nicole Weber
Mommy to Ilah
Born August 2023
Pulmonary Atresia – Congenital Heart Defect
We went in for our 20-week anatomy scan for our second child and found we were having a girl. However, the ultrasound tech started to seem a little worried. Once the scan was done, she told us to wait and she was going to go show the scans to the doctor. We were put in another room and a few minutes later the doctor came in and said they thought Ilah had a heart defect and she was going to reach out to Cardinal Glennon and they would contact me to schedule an appointment. About six weeks later we drove to St. Louis and they did an ultrasound and echo at Cardinal Glennon, confirming our daughter had a heart defect. They gave us the surgical plan and scheduled us for another appointment to come back to keep an eye on her.
Just like every parent you hope your child is born healthy, once getting the news my heart broke. Multiple surgeries would be in our daughter’s future.
I was induced at 37.5 weeks because she was struggling to gain weight while I was pregnant with her, and they thought they could do more to help outside the womb. After several hours of being in labor I finally had Ilah on August 24, 2023 and they took her to the NICU at Cardinal Glennon. The next morning I called over to check on her and they said they had done an echo to see how things were looking in her heart. They said it didn’t seem as bad as they had thought and once she got a little bit bigger, they would do her first surgery.
Ilah’s first heart surgery was when she was a week-and-a-half old. They had to keep an eye on her blood sugars afterwards; her levels had been all over the place. They finally got that under control and a few days later they did an ultrasound of her liver and found a cyst in the tube coming off of her liver. She will eventually need a surgery to remove the cyst but it wasn’t something they were worried about in that moment. I finally thought things were headed in a better direction, but then she got NEC (Necrotizing enterocolitis, an infection in the intestines), which took some time to get under control.
It was a roller coaster of ups and downs but she is such a little fighter. After 8 weeks in the NICU, Ilah came home in October. She’s supposed to have another heart surgery in February. She’s been slow on gaining weight because her heart has to work so much harder and that burns through all her calories. She’s 8.3 pounds, she needs to be 10 pounds before her next surgery.
We had an appointment about the cyst and now they’re thinking it was just a bulge because they didn’t see it during her last ultrasound, she has another appointment in February to get it looked at and if everything looks normal at that appointment than they’re not going to worry about her liver. So, right now all we’re working on is her weight to get her ready for her next surgery. She’s doing amazingly; she’s such a happy baby, always smiling, she’s rolling over. Her big sister adores her! Knowing she has a long road ahead of her still makes me worried, but she is so strong and doing so well.
On Angels’ Wings has been a huge support system, I was scheduled to get my maternity pictures done and the day before I was admitted into the hospital due to her heart. I was crushed when I thought I couldn’t do them, but a photographer came to the hospital and did my maternity pictures there and they turned out absolutely beautiful. Once having her they did newborn pictures of Ilah while in the NICU and I am so beyond pleased with how they turned out.
I am so thankful for On Angels’ Wings and how well they have worked with me along Ilah’s journey. I would tell absolutely everyone in circumstances like ours to reach out because they made things so much easier and doable. They worked with us to make these pictures happen even in difficult situations and did such an amazing job. We’re making plans for another session before her surgery in February, and I know OAW will be with us through her whole journey, not just for pictures, but as a support system. On Angels’ Wings is such an amazing organization and we are beyond blessed to be supported in these hard times.
