Updated: May 11, 2021
We were so happy to catch up with the Buskirk family recently. When they were last interviewed, they had been through so much with their daughter Emerson. Traveling for care to make sure she survived and eventually to be listed for a new heart.
Their hometown is in Las Vegas. There's no transplant center there at this time. Everything started when Emerson was born on June 26, 2018. There were no issues, and it was a normal pregnancy and delivery.
Andrea considers herself lucky with that. They were discharged from the hospital in two days, and everything was fine. Nothing was picked up in utero. Emerson was the first and only child. They assumed everything was great.
Andrea was formerly a teacher. She was excited to have a baby over the summer; she still had 12 weeks at the beginning of school or not 12 weeks, six weeks at the beginning of school. She was set to go back to work on September 24, 2018. The weekend before, she was the school's cross country coach, waking up in the morning for the family's first meet. Emerson was with them because she had been going to practice. The students knew her; families knew her as well.
Emerson didn't sleep well the night before, which was new because she was a great sleeper. She had been up every 45 minutes, and she was pretty cranky. She told her husband to keep an eye on her. Saturday night, it was the same kind of thing; up every 45 minutes didn't sleep well.
As Sunday progressed, all of a sudden, she just became lethargic. She didn't want to move, didn't want to do anything. They just held her all day; she was still eating, going to the bathroom, no fevers. Andrea then called the nurse hotline on the back of our insurance card. "Hey, I'm a new, you know, first-time Mom; I don't want you to think I'm overreacting." In her gut, she just knew something was wrong. Of course, they had no idea the extent of what was wrong.
Luckily, they had a great nurse. She cautioned her to look for several things over the next few hours: dehydration, dark urine, stopping eating, vomiting. If any of those should happen, she should take her into the ER.
That night, she and her husband slept on the couch in the living room because the only place they could put her down was her swing. And finally, at 3 am, she had changed her and noticed she had dark urine, and she tried to breastfeed her, and she wasn't eating. They immediately grabbed the diaper bag, still in pajamas, took her to the hospital, where she was delivered about 15 minutes away.
They consider themselves fortunate to have excellent hospital staff. The intake nurse was listening to them and telling them they are not overreacting or anything. But she said to them as soon as she saw them, "Is she always that pale?" They said yes. Emerson always looked like Snow White, just a very fair-skinned baby. They take her oxygen, and her oxygen was in the 60s, so she was immediately placed on oxygen. When the doctor comes in, the first thing he says, "Is Emerson always that pale?" Andrea and Brandon knew that's not a good sign. She was put on oxygen and an IV, and then next a chest X-ray. After seeing that chest x-ray, the doctor says, "I don't have all the answers, but Emerson's in congestive heart failure."
When he exited the room, they both just collapsed. That's when they were transferred to the Children's Hospital in the area on the other side of town. A 25-minute ambulance ride to get admitted to the new hospital and start an echo on her. And the doctor that comes in, who they consider another wonderful man comes in, hugs both of them, and says, "I'm here for you, we're gonna get through this, you know, she's gonna be okay." He proceeds to do her echo when he stands up fast, and he leaves the room, almost running. He tells them we need to expedite this. After admitting Emerson to the hospital, Andrea and her husband are taken to the quiet room. And of course, they know, the quiet room doesn't mean good answers. She was diagnosed with dilated cardiomyopathy. Her heart was about three times enlarged, and her ejection fraction was 10%. At the time, they had no idea what any of that meant. And just like that, he says Emerson's going to need a transplant to live.
Because there wasn't a transplant center in their area yet, they were life-flighted to Loma Linda in California that night because they thought she would need ECMO. They wanted to make sure she had the treatment necessary to her so that she could survive.
Once they got there, everybody was ready. They had the most wonderful male nurse that night. He just looked at them said, "I've got her. You guys need to take care of yourself. Go get some sleep." That's how welcoming and why they were able to trust them immediately.
The next day and the whole first week were all the tests. All the scans and all blood tests were trying to find out, was this congenital? Was she born with it? Did she have a virus that she picked up that this happened? What's going on? They figure out that she was probably born with the size of her heart. And it was just something that was missed in ultrasounds.
That whole first week was very touch and go, hour to hour. They didn't know if she was stable. Then at one point, they thought she had a stroke in the first week. When she had to go down for the MRI, the staff said, "We don't know what that was, but her brain looks normal. So that's good." That was the first piece of good news in the first week. Doctors confirmed the only way she's going to survive is a transplant.
That first Friday is when she stabilized, and she got a "She's out of the woods, for now, still needs a transplant." She was intubated for the first three weeks. Her parents wondered what's the long-term solution going to be since they would have to wait; they had no idea how long that wait was going to be. Staying intubated the whole time isn't a good option. She was so little, they didn't want to do a Berlin heart at the time but would if necessary. There was also a procedure that's called the pulmonary artery band that was ultimately considered. At Loma Linda, she was their third patient with this procedure.
On October 8 was her first surgery, and it went great. And they were able to extubate her three days after surgery. And she stayed then fully activate until her transplant, her ejection fraction improved to about 20%. She was on milrinone, and she was on epi; she was on everything. And so then they just waited. Her husband returned to work in Vegas, so he would teach Monday through Friday and then either fly down or drive down for the weekend and see them. Andrea stayed with Emerson in the hospital.
The night of January 17, they got the call, and she went down to the surgery at midnight. Her official transplant dates January 18. Shy of four months from where they started, which they knew in the grand scheme of things, isn't a long time at all.
They were at their apartment in California, eating dinner. Usually, they would spend all day at the hospital, and we would leave for an afternoon break. They would then go to get dinner and then come back. They talked to her doctor hours before because she bumped down to 1B's status. After all, she was extubated. From looking at her, you wouldn't know that she had an issue. They met with their doctor because he was going to petition UNOS to put her back up to 1a, and he said, "I'm submitting all that paperwork today." When calling back, Dr. Bock says Emerson has a heart. They were back in the units for hours, and a heart became available. They went back to the hospital at about six o'clock. It was nurse shift change time. Everybody was excited. The plan was to take her down to surgery at midnight, but it could be delayed a little bit from the retrieving doctor traveling. They could only tell us it was close. At 11:45 pm, she's all ready to take down. Surgeons want to get started to prep her and put her under anesthesia. Andrea got the official text on my phone at about two o'clock that she was intubated and her chest was open, and surgery was starting. At about six o'clock in the morning, she got a text message surgery is complete. "We're bringing Emerson back up to the unit." The first thing they noticed was that she was colorful; she was pink. She was rosy, and her parents thought, "Oh my gosh, she was the wrong color all along." Nine days later, they were being discharged.
From January 26, when she was discharged, they stayed in the area until April 1 is when we could finally get to because she had clinic twice a week, and they wanted to keep her close. March was the very first time that she asked them if she could go home.
Andrea hadn't been home since the morning of September 24 the previous year, when they left with only a diaper bag and their pajamas. They wanted to know if they could go home for the weekend? The doctors didn't have concerns about her. They told her to follow up with a transplant cardiologist in Vegas, assuring them that they will always be there for consultation. So at that point, they started doing the commute back and forth every week. They did this three times. After that, they said, Emerson looks good, "You guys are going home." And so they came home April 1 and haven't been back since.
They wrote to the donor family the very first year. They did this after pondering, how are you supposed to write that letter? How are you supposed to say thank you for giving a gift of that magnitude? It was a truly amazing thing they did while being in immense grief.
Today Emerson loves books, anything book-related. Her mother says, "She has two cats and a dog. She loves her animals. She loves to draw, as you can see. Love artist things—anything outside related. If you put her outside all day, she would, you know, she would play there. We just on Saturday, for the first time, took her to a park. For the very first time, it had been one that's close to her house."
We hope that Emerson continues to be artsy and adventurous! Her parents are grateful for their miracle.
**all photographs courtesy of Jill Heupel Photography