Atchison Family

“It’s the honor of a lifetime to be on this stage before you. Thank you to all of you here who make the level four NICU at Texas Children’s Hospital what it is. It’s because of that NICU and generous donors like all of you, that our Ro is here today.

This is Aurora. We call her Ro. She’ll be 14 months old in a few days.

Ro is the youngest of our three children. Our perfect little caboose. But it didn’t always look like she’d join us. When I was 13 weeks pregnant, we learned there was a high probability that she would have Down syndrome. At 16 weeks we were sent to Texas Children’s for genetic counseling and to meet with a Maternal Fetal Medicine doctor. Her prognosis was bleak, to put it mildly. They found several complications – the most significant being a congenital heart defect – an atrioventricular septal defect. She also had a build up of fluid on the trunk of her body – the beginnings of hydrops fetalis, which is often fatal. We were told she wouldn’t survive my pregnancy.

For several months I went in weekly to make sure her heart was still beating. And then like magic, the fluid disappeared. And then it returned. At one point our MFM walked in and told me, “this is the strangest pregnancy.” And we all looked at each other and laughed because it was true. 

By the end of it, we weren’t sure if we’d have a baby to bring home. Or if we might meet her and then say goodbye to her shortly thereafter.

We knew if we were lucky, she’d spend time in the NICU to keep an eye on her heart. An AVSD is not something that presents itself immediately. Especially for kids like Ro who have Down syndrome, it can take a little while to become a problem. My OB in Victoria advised me that Ro’s chances of survival were greater if she was born at TCH – instead of having to be transferred. It’s one of the best decisions we’ve ever made.

Ro was born at 38 weeks and 2 days. She was the biggest baby on the block at 7 pounds 15 ounces. She’s very on brand this one – instead of the controlled assent of an induction, she came quickly and in her own time. She was blue when they placed her on my chest, but I will never forget how calm my providers were. The NICU team was in the room and I cannot imagine a more compassionate, caring group of individuals to hand my baby over to.

The important part of Ro’s story for today’s discussion begins with her time in the NICU. We were there from August 23 to October 19. Jared and I were able to be there every day with her. We traded out every three days or so. And every single day was better because of two reasons – one: we had our Ro. And two: we were at the best place in the world for her. 

If you’ve ever had a child in the NICU, you know that it can be a very lonely place. Last year was my first and only experience and I can tell you right now that while it was lonely, and while I wanted to be home, it was made better every minute by the fine staff at TCH. They turned a place that should have felt cold and sterile into a warm and friendly environment. I can tell you our nurse’s name when we arrived – Val – and the one we had when we were discharged – Kelly. And I can tell you about the ones in between, and even the ones who made such a great impact and didn’t even ever have Ro as a patient.

I can also tell you about the great providers we had, Dr. Osbourne who began service the day Ro was born and Dr. Gowda – who are both experts in their field and took excellent care of Ro. And also our wonderful neonatal nurse practitioners. Each one of them made sure all of my relevant and not so relevant questions were answered. I’m convinced they are all guardian angels walking around on earth.

On the fifth day of Ro’s life, she developed a fever which resulted in her needing a spinal tap to ensure the infection hadn’t traveled to her spinal fluid. I’ve never seen a medical team respond so quickly – it was like watching a SWAT team assemble. At the time of her spinal tap I was with our big girls and Jared doesn’t do well with needles, so Val was right there with her the whole time. I was sick to my stomach with worry waiting for the panel results to come back. I’ll never forget Jared telling me, “If Dr. Osbourne isn’t worried, we shouldn’t be.” That’s how much faith we had in these wonderful doctors.

Many of the critical and important decisions we had to make were shaped by these TCH staff members. Because Ro’s heart was overcirculating her blood, she was worn out all the time. Meaning she was also too tired to eat. The time came where it looked like she would benefit from having a gastrostomy button. We were able to advocate better for her because of the knowledge we’d gained.

We were discharged a week after her g-button was placed. Daily rounds had become social hour, and by the time we left I knew these people had nestled their way into my heart. We were so happy to go home, but it was also really hard to leave our new family. Some of them even came over to Legacy Tower to visit us when she was recovering from heart surgery. Our time and experience at TCH gave Ro the best foundation and start at life. And for that we will forever be grateful. It is not lost on me that in two days we will celebrate one year of Ro coming home and I can imagine no better way to celebrate than with you all.

Thank you so much for supporting this wonderful cause. It’s because of donors like you that kids like Ro get a chance to live a full life.”