Xochitl and Brian Scott were looking forward to adding to their growing family. The couple had children from previous relationships but not one together, so they were overjoyed when they learned Xochitl was pregnant.
“I had done everything under the moon and stars to get pregnant. It was so surreal for me that it was really happening,” remembers Xochitl.
Because she had experienced two previous miscarriages, Xochitl was understandably nervous during her first trimester. As a paramedic, she found herself overly anxious because she had witnessed countless times how quickly life could change.
“I was just so worried and prayed a lot and I cried over everything,” said Xochitl. “I even cried over a bag of Doritos. And, my cravings were crazy. I had to have Texas BBQ which was not something I was a fan of before at all.”
To help keep things in check, her doctors put Xochitl on a weekly dose of progesterone, which seemed to work until Xochitl began experiencing excruciating abdominal pains one day. The progesterone pills affected her kidneys so that her blood was not being filtered. Her body had become toxic.
She was about 17 weeks along at this point and was worried that if she continued taking the progesterone pills, she would lose her baby. Xochitl and Brian hoped and prayed for the best. Their prayers were answered as things progressed, and the fear of miscarriage slowly dissipated.
The couple’s dream of having a child together began to take more shape until they hit another bump in the road. Xochitl learned she had both gestational diabetes and was high blood pressure.
Wondering how these two conditions might affect her pregnancy, Xochitl had an ultrasound when she was about 20 weeks along. After having her test done, she left, and within 30 minutes, her doctor called and asked her to come back to the office.
“My heart stopped. I was terrified. I thought they were going to tell me that I had lost my baby or that they couldn’t find the baby’s heartbeat,” said Xochitl.
It turned out to be none of those things. Instead, Xochitl and Brian’s baby had a condition known as omphalocele, a congenital disability of the abdominal wall. It’s when an infant’s intestines, liver, or other organs protrude outside of the belly through the belly button. Xochitl immediately began questioning whether she had done something to cause this.
“The paramedic in me came out. I’m supposed to make everything okay; my job is to make everyone feel better. I felt like I had failed,” said Xochitl.
She was referred to Dr. Theresa Stewart, a high-risk OB at the Center for Maternal and Fetal Care – New Braunfels, which is part of The Children’s Hospital of San Antonio.
“She was such an amazing person and made sure that I did everything I was supposed to do,” said Xochitl. “She was on top of everything and made me feel so wonderful and gave me lots of hope. The whole staff are so dear to my heart from the desk office to the ladies that would to the sonogram. They became like a family to me.”
Xochitl’s diagnosis of gestational diabetes and hypertension, in addition to the baby’s condition, was just too much to bear. So much was happening that they did not find out until the second ultrasound if they were having a boy or a girl.
“At that point, I didn’t care if the baby was a boy or a girl,” said Xochitl. “I just wanted the baby to be as healthy as possible.”
As it turns out, Xochitl was pregnant with a little girl they would name Lilly.
Dr. Stewart told Xochitl that she would need to arrange to deliver at a children’s hospital because of baby Lilly’s omphalocele. Xochitl knew exactly where they wanted to go: The Children’s Hospital of San Antonio (CHofSA.) Soon after birth, Lilly would need multiple surgeries to correct the omphalocele and access to a neonatal intensive care unit (NICU).
During her third trimester, Xochitl began going to specialists weekly to have her blood sugar levels checked. One day at work, when she was about 30 weeks along, Xochitl didn’t feel right and thought it would be wise to take her blood pressure. It was sky high. The next thing she remembers, doctors and nurses were swarming around her, and transported her to the hospital.
Dr. Stewart determined Xochitl had preeclampsia, a condition in pregnant women marked by high blood pressure that can damage the liver and kidneys.
Despite everything swirling around them, Xochitl and Brian remained strong in their faith and counted their blessings.
“We tried to focus on the positive and surrounded ourselves with our other children,” said Brian. “They brought us lots of laughter and a ton of love. That helped.”
The diagnosis of preeclampsia called for strict orders for Xochitl to go on bed rest, which proved to be quite challenging for the active mom, but she knew what she had to do for Lilly. She and Brian took a short vacation, and she also stopped working – all steps to ensure Lilly had the best possible outcome. That was the middle of August.
On September 15, Xochitl had what she thought would be a regular appointment with a specialist, but she was experiencing painful contractions and was bleeding. At 37 weeks, Xochitl was going into labor, which she was unprepared for, and began panicking.
“I kept thinking this is way too early for her – she hasn’t fully developed yet. I knew she needed to be in the womb as long as possible to help her recuperate from her surgery and only have minimal complications. I wasn’t ready,” said Xochitl.
Ready or not, though, baby Lilly was coming. Xochitl was prepped for a C-section that same day, and Lilly made her arrival into the world.
In addition to the omphalocele, Lilly was born with a few other complications. Her left arm did not fully grow and was underdeveloped, and she didn’t have a pinkie or thumb. One side of her mouth drooped because a tendon was missing.
It felt like an eternity between the time Xochitl gave birth to when she got to see Lilly. And when she did get to see her finally, Xochitl was heartbroken. Watching her newborn with a central line and IVs was difficult to see.
Because Lilly’s lungs were in good condition and her stomach was intact, the doctors at CHofSA were planning to do surgery on September 16 – the day after she was born.
“I was happy because my baby was born. At the same time, I was nervous about what was happening with my baby and feeling scared, too,” recalls Xochitl.
Dr. Katherine Barness, who serves as Chief of Surgery at CHofSA, did the surgery and afterward shared the amazing news with Xochitl and Brian: Lilly’s surgery was successful – so successful that she would only need one surgery instead of multiple ones to correct the omphalocele. At the beginning of their journey, Xochitl and Brian were told that there was only about a 5% chance of this happening.
From there, Lilly made an amazing recovery. Soon after her surgery, Lilly started eating – something entirely unexpected. Her heart looked good, her oxygen levels were up, and she rapidly began to gain weight. When they first started on their journey, Xochitl and Brian were prepared for Lilly to spend two and a half months in the NICU, but as it turned out, she was only there for two weeks.
“We weren’t quite prepared to go home so soon. Sometimes babies with omphalocele require special equipment designed just for them like cribs, chairs, and car seats,” said Brian. “She ended up not needing any of it.”
In Xochitl’s mind, Lilly defied medicine and defines hope.
Today, Lilly is doing well and is showered with love and attention by her siblings. She eats regularly, likes to swing, and loves cuddle time. Xochitl is so grateful to her friends and family who provided tremendous support during her journey.
“Lilly is hope, Hope that miracles can happen. She inspires us and shows us that the impossible can be conquered. I stare at her and realize we are so blessed. We are thankful and so grateful to all the NICU nurses that took care of Lilly, especially Dr. Katherine Barness and Dr. Maria Pierce,” said Xochitl. “We would have been lost without their kindness, care, support, and wonderful sense of humor. I wish I could take what I have in my heart and physically show how thankful we are. I don’t think words can express what we feel. They have made a difference and changed more than one life. Thank you for giving us our miracle and for giving my family our Lilly,” she said.
To learn more about the NICU at The Children’s Hospital of San Antonio, please visit our webpage: https://www.christushealth.org/childrens/services-treatments/nicu