Our beautiful, Raegan Rose, was born on February 25, 2015 at 6:23 am. She weighed a whopping 9 lbs 7 oz! She was so beautiful and perfect! While Raegan snuggled in and nursed the first 45 minutes after being born, the nurses did all the tests they needed to. They briefly mentioned that her oxygen levels weren’t matching up and that they would try again later. We thought nothing of it, they made it sound like no big deal. However, they were unable to match them up and our pediatrician requested that we take her to a cardiologist just to make sure everything was ok. We still worried very little about it. But we were extremely anxious to get out of the hospital, and we were discharged the next evening at 7:00pm. So Raegan was only 36.5 hours old. But we simply could not wait to get her home.

The morning after our first night home, we got a call from the hospital at 10:00am asking if we can make it to the American Family Children’s Hospital by 1:00pm for an echocardiogram and an appointment with the cardiologist….Holy Moly! I remember thinking, “How are we going to get this little human out of the house?! I can barely walk, how am I going to get through a hospital?! What do I all need to bring?!…..For the love of god, I hope this doesn’t take very long.” But we told them we could make it work.

I didn’t start feeling anxious or nervous until the drive in – that’s when it sunk in. The baby was sleeping in the car seat, Shane was driving, and I finally had a chance to really think about what we were doing. We knew we were being sent there because her oxygen levels were 1-2 points off of what they should be, but to be honest, we had no idea what that meant or what it could lead to. I remember telling Shane, “I have a really bad feeling about this…” as my stomach slowly sank. They don’t just send perfectly healthy babies to the children’s hospital their first day home. And he just reassured me that everything was going to be fine…With the small window of time were given to get ready and the 45 minute drive, we somehow managed to only be 10 minutes late. The wonderful staff congratulated us on the new baby as we checked in and sat in the waiting room. My first public mom outing – I wobbled through the hospital with a donut (no, not the tasty kind!) in my hand to sit on. That’s mom life for you.

Daddy took this picture while waiting for the results of the echo.

First was her echocardiogram. While waiting, Raegan had her stats checked, she actually ended up passing the oxygen test that she failed previously! Shane even asked if further testing was even necessary, since her oxygen levels were good now. We were tired, and ready to spend much-needed time with our baby in our own home. But the nurses said that we still needed to go forward with the echo. Raegan was nursed to sleep and continued to sleep through the whole test, which took almost 45 minutes. During the test, the sonographer said very little; Shane and I just sat there and watched a picture of our baby’s heart with flashes of red and blue all over the screen. We had absolutely no idea what we were looking at. After the echo was finished, we were told that the cardiologist needed to look over the data and would be in after she had analyzed everything. We sat and we sat and we sat…for almost two hours.

I remember the chairs being SO hard and uncomfortable. I so badly wanted to be in my own bed, in my own home, with my beautiful healthy baby. While we sat there, we just stared at her, completely in love with this little human. She nursed on and off while she was wrapped up in just a diaper and a hospital blanket…But each time a nurse would come in and ask us if were ok or if we needed something, my heart would sink into my stomach. The postpartum hormones were flowing like a river; I physically wouldn’t let Raegan go. She was the sole thing that was keeping me together. Then, what should have been one of the best days of my life, quickly turned into the worst.

She walked in, shook both Shane and I’s hands and sat directly in front of me on a rolling stool. Our knees were literally touching. Her name was Dr. Peterson, a pediatric cardiologist. I remember the words like it was yesterday. She put both her hands on my knees, looked me directly in the eyes and said, “I’m sorry to tell you, but there is something wrong with Raegan’s heart.” Shane grabbed my hand and we both immediately began tearing up. We were flooded with emotions, which made it impossible to think straight…..What did this mean? Is our baby going to be okay? Will she get better? What did I do to make this happen? …..

Illustrations by Joseph Pangrace for Richard Krasuski M.D.

The rest of our conversation was mostly a blur. But she gave us a brief summary, telling us that Raegan was going to be okay and that she had a hole in her heart, called a PFO, along with a very rare congenital heart defect, called Ebsteins’s Anomaly. She explained it to us in the most simple form and gave us a few handouts and different references to look at once we were ready to learn more. But she warned us NOT to look on the internet past those few resources. We were told that she was okay to come home with us. But we were given warning signs to look for, we were taught how to use a stethoscope and told to not be alarmed if her lips turned bluish while crying or nursing. MY BABY TURNING BLUE!?! Not terrifying at all, right?! They did a few more tests and we were told to schedule a follow-up appointment for the following week. This would give us time to digest all the information and come up with any questions that we might have.

Once everyone left the room, I closed my eyes and gently kissed Raegan’s forehead as tears continued to roll down my cheeks. Then I handed Raegan to Shane. Even though I didn’t want to let her go, I knew he needed her too. We all needed each other. Shane says that he remembers me saying, “I knew it, I knew something was wrong.” Mother’s intuition, I guess – but this is not something that I wanted to be right about. We sat there, in that awful and uncomfortable room, with our beautiful baby girl and just cried together. Once we were able to gathered our emotions, we worked our way back to the reception area. We made our appointment and headed back to the car. If all the crying in the patient room wasn’t bad enough, we started crying again. We cried a lot. We were sad, tired, angry, confused, and scared. Our baby looked healthy…she looked perfectly fine. We had no idea how to handle ourselves and all of this new information. We called our families to tell them the news. Our parents were able to keep calm while on the phone, but we were all heart-broken and confused.

After a few days, our nerves settled. I began looking on the internet, just as I was told not to. It was terrifying! There were so many people sharing their stories. The range of severity and outcomes is huge! And I quickly learned, that things could much worse for us. However, she still had many tests to go at her next appointment. But at least we had her home and she was having no complications what so ever. She was a normal newborn; cluster feeding, pooping and sleeping (well, sleeping sometimes).

At the follow-up appointment the next week, the staff was so welcoming! Although we were given not great news the week prior, this appointment was much easier to walk into. We had an entire
sheet of questions about her health, about her future, about any procedures or surgeries she may have to have, and what we would have to do differently as a parent of a child with a congenital heart defect <3. We were told that although there may be a few bumps in the road, our little heart warrior should lead a very normal life. She went for another echo at 4 weeks, 12 weeks, 6 months and then a year. Thankfully, she continues to be strong and healthy, with no complications. Soon we will be coming up on her 2 year check up…We are praying and crossing our fingers that this one goes as well as our past visits.

Ebstein’s Anomaly is very rare, only effecting 1 in 200,000 live births, which accounts for <1% of all congenital heart disease patients. Congenital heart defects, however, are not so rare. 1 in every 100 children are born with some form of a congenital heart defect. There are SO many babies, children, and adults who are battling CHD of various severities, many who are not as lucky as we have been. So squeeze your little one or loved one a little tighter, give a few extra kisses, read an extra book before bed and say a prayer for the heart warriors and their families.

“SOMETIMES, REAL SUPERHEROES LIVE IN THE HEARTS OF SMALL CHILDREN FIGHTING BIG BATTLES!” – UNKNOWN AUTHOR (PINTEREST)