On January 20th, I woke up super excited to get to my ultrasound appointment. I had always loved seeing my baby wiggling around and dancing in my belly. I figured it would be an appointment just like all the others. They’d check her anatomy and make sure she was looking good and healthy. Then we would get some really adorable pictures of her. But this was not the case.
During this appointment, the ultrasound technician went through and measured the baby, checked her brain, and continued moving through all of the other organs. She hovered the wand over my daughter’s heart. She stayed there for quite a while, moved to other areas, and then went back to her heart about two more times.
I could feel the energy shift from happy conversation to a more quiet and focused attention. It was then that I knew. I could feel in the pit of my stomach that I was going to get some sort of news.
The doctor came in just a few minutes after the ultrasound was done to inform us that our baby girl had a very serious and rare congenital heart defect called Tetralogy of Fallot.
Tetralogy of Fallot is when the heart develops a large hole, and this hole then impacts the structure of the heart. It begins to alter the blood flow through the heart and greatly impacts important valves and oxygen levels. The only way to fix this was to have open heart surgery. We were advised that, during the time of our diagnosis, New Mexico did not have the team available to perform the surgery needed to repair her heart. We would have to give birth at the Children’s Hospital of Colorado.
» » » » » » » » » » » » » » » » RELATED READ: My 1 Pound Miracle Baby « « « « « « « « « « « « « « « «
Months passed as we continued to go to many different appointments with our OB as well as the pediatric congenital cardiac team here in New Mexico at Presbyterian. We gained a lot of insight and learned much about this condition. We made a trip out to Colorado, got to meet our birthing team, and received a tour of the specialty hospital where we would be receiving our care.
The doctors told us that the baby might need open heart surgery immediately after she was born or her heart may be strong enough to allow her to develop a few months after birth. Then she would have surgery when she was bigger and stronger. It was all dependent on what her oxygen levels looked like.
So the waiting game began.
As we got closer to our due date, our medical team here in NM recommended we temporarily relocate to Denver about four weeks before my due date. This was a precaution as I delivered three weeks early with my first child and one week early with my second.
While all of this was happening, I was planning my son’s final year in high school. He was scheduled to graduate just days before I was due. Talk about an emotional roller coaster.
We had to leave, so I was unable to be a part of everything I wanted to right before graduation. People say that “it takes a village” to help raise a family, and I couldn’t be any more thankful for my village. My parents and my sister helped focus on my two oldest children while we were away in Colorado. They made sure that everything was running smoothly so that my son had what he needed for graduation. I hoped and prayed selfishly that I would get to see him walk across his stage and receive his diploma and that we would not have to stay in Colorado for long. But I knew that the odds were so incredibly slim.
» RECOMMENDED RESOURCE: Ultimate Guide to Pregnancy and Postpartum in ABQ «
We were blessed to receive a referral to stay a the Ronald McDonald House in Aurora. It was about six minutes away from the hospital. We spent our month living with other families who also had children hospitalized nearby. During this time, we made friends with neighbors down the hall from us and often ran into the same friendly faces when cooking meals in our shared kitchen. I was homesick, missing my oldest babies, missing my family, and wishing that we could go home. But there was comfort in knowing that we were surrounded by others who were going through something similar. It made us feel grateful to be able to stay so close to where we needed to be.
Our induction day arrived, and to say I was a complete nervous wreck is the understatement of the year. I was terrified.
I had never been induced before, and I wasn’t sure what the situation would be. Would her heart be strong and healthy enough to allow her a few months to get stronger? Then we could head back home to New Mexico to make it in time to watch my son graduate! Or would we see complications arise quickly and have to undergo open heart surgery at only a day old? Nothing was for certain. We had to wait and see what the verdict was once she was delivered.
On May 16, 2022 at 8:31 a.m., our Kendall Grace made her way into the world. She weighed 6 lbs 5 oz and was 19 inches long. She only had to hang out in the Cardiac ICU for one day. Later she was moved into the progressive care cardiology unit which meant that she was doing absolutely amazing. Her medical team was so impressed with her and said that they thought we would be out of the hospital in no time. Which we were.
We were discharged on May 19, which just so happened to be the same day that my oldest would graduate high school. It felt like everything was working in our favor. I just knew I could get there in time to see my son receive his diploma.
We traveled back home with a brand new baby that was just days old. It went from a 7-hour drive to a 10-hour drive. There were lots of stops to change diapers and nurse her, and lots of pit stops for a mama who was recovering from childbirth.
Sadly, I didn’t make the graduation. I watched my son through the screen of my iPhone as they called his name and as he received his diploma. I was so overwhelmed with emotion. There was so much to be grateful for and so much sadness in missing such a monumental moment in his life. He truly understood though and was so glad I could watch through FaceTime.
Kendall was able to develop nicely. She was so healthy and strong that she made it until she was three months old before we were scheduled to go back to the Children’s Hospital of Colorado to do open heart surgery. On September 9, 2022 at exactly 8:18 am, Kendall’s heart received the ultimate gift. A second chance at life. She underwent open heart surgery with one of the best cardiac surgeons in the nation. Her heart was repaired. Just six days later, we were discharged from the hospital. Within two weeks were able to head back to New Mexico where everyone was waiting for us!
Kendall will spend the rest of her life working with cardiologists and will have another surgery when she is anywhere from five to nine years old to maintain parts of the heart that need to remain functioning for proper oxygen flow. She is working with developmental and speech therapists to work through the aftermath of a major surgery.
She is a true miracle. And one of the toughest little kids I have ever met. I’m so proud of her and all she has endured and overcome. She’s a true heart warrior.
The opinions expressed in this post are those of the author. They do not necessarily reflect the official policy or position of ABQ Mom, its executive team, other contributors to the site, its sponsors or partners, or any organizations the aforementioned might be affiliated with.
