Meet Oakley

It is day 2 of Congenital Heart Defect Awareness Week!  Our guest blogger today is Lauren.  I actually met Lauren through a heart mom’s group on Facebook.  After finding out that she was from Joplin, I inquired about more information on her son’s birth date and hospital stay.  I was able to figure out that Lauren, her husband and baby Oakley shared a room at 7West at St. Louis Children’s Hospital with us when we were there with Reiss! I was amazed about how social media had allowed us to be reconnected.  In today’s blog, you will read about some warning signs of heart failure.  Another reason to be CHD aware.  I hope you enjoy reading about Oakley’s journey.  – Sara

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Baby Oakley

Normal.

Normal weight gain. Normal pregnancy. Normal birth weight. Normal APGAR scores. Everything was normal.

Oakley was born September 20, 2012. The day we were being discharged from the hospital the pediatrician heard a murmur. The concern shown from the pediatrician was minimal. At one week old, we took Oakley for an echocardiogram, and he was diagnosed with an Atrial Septal Defect (ASD) and Ventricular Septal Defect (VSD). A hole in the wall between the two upper collecting chambers (ASD) or between the two bottom pumping chambers (VSD). We were told the holes were small enough that they would most likely close on their own and not cause any problems. Ryan and I were worried, but we were reassured that holes in the heart were relatively common.

Fast forward about two weeks:

On October 8th I took Oakley to the pediatrician. He had stopped eating well over the weekend, and would cry every time I tried to wake him up. He had displayed other symptoms prior to this: high respiratory rate, sweating, being lethargic. My husband and I talked to the on call doctors at the hospital over the weekend, but no one put it all together. The pediatrician checked him over; he had lost weight since the week before. I knew this was not good news. The pediatrician’s first thought was maybe my milk supply was too low (although this didn’t make any sense, because Oakley had gained about 12 ounces in his first week being home). Finally, it was decided we would take Oakley to the small, local hospital and get him admitted for dehydration and run tests to see what was causing it. Before we left the pediatrician’s office he decided to check Oakley’s pulse ox. As the numbers popped up I saw the 93% (the average person would be closer to 100%).
When we got to the hospital they began running multiple tests on Oakley – blood, urine, stool, and a chest x-ray. After the pediatrician’s office closed, he came over to the hospital to check out Oakley’s results. First, we were told it looked like Oakley had an infection, but the doctor had no idea where the infection was coming from. He left the room again to take a look at Oakley’s chest x-ray…

Oakley’s heart was severely enlarged and he was in heart failure. I don’t remember everything that the pediatrician said. I just remember interrupting him and saying “IS MY BABY GOING TO BE OKAY?!” He told me he wasn’t sure, but that he would definitely have to be transferred to a bigger hospital. The wait for the helicopter felt like an eternity. All the while, Oakley’s pulse ox reading was getting lower and lower. When the med-flight helicopter arrived, I was able to fly with Oakley.

The moment I stepped on the helicopter (with two boxes of tissues, God bless those sweet nurses at our local hospital) time sped up, and it slowed down at the same time. We couldn’t get to Springfield fast enough, and yet we were there so quickly.

Upon our arrival to Mercy Hospital Springfield, Oakley was immediately intubated. I was pushed off to the side, while they put a tube down Oakley’s throat so he could breathe. It felt like forever before my husband and family arrived. Once we were able to talk to the cardiologist he told us that he suspected a “coarctation of the aortic arch.” (Coarctation of the aorta is a narrowing of the aorta, the main blood vessel carrying oxygen-rich blood from the left ventricle of the heart to all of the organs of the body.) They wanted to wait until morning to get a clearer echo since his heart was so enlarged. Morning came, we received good news – Oakley’s heart seemed to be functioning normally, but obviously something was still wrong. The doctors began running multiple tests, but everything still pointed to his heart. Late in the evening we decided to transfer Oakley to St. Louis Children’s Hospital. After sitting down with another cardiologist from Springfield, it was decided they were 100% sure if he had the coarctation or not. Even if he did, they were unable to actually perform surgery at this hospital.

By Wednesday morning (October 10th) Oakley was being prepped for surgery at St. Louis Children’s. His surgery went well, though we did find out that he also has a bicuspid aortic valve. (A bicuspid aortic valve is an aortic valve that only has two leaflets, instead of three. The aortic valve regulates blood flow from the heart into the aorta, the major blood vessel that brings blood to the body.)

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Oakley is now 16 months old and doing very well. His last follow up was in September. His ASD and VSD are closed, and his coarctation repair is great. His bicuspid aortic valve is okay for now. Oakley was cleared for yearly follow ups. Overall, he’s a very ornery little boy who acts and looks like any other toddler.

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