My pregnancy with Olivia was normal and full term. At the 20 week ultrasound, we were extremely happy to find out we were having a baby girl since we already had a little boy.
Olivia was born on December 17th as a seemingly healthy baby girl at 6lbs 13.1 oz. She was a quiet and sleepy baby that day. It wasn’t until the second time I tried to feed her that she wouldn’t wake up. Looking back at pictures I can tell she had a blue tint. I called the lactation consultant who also couldn’t get her to stay awake and latch on. They tried to test her oxygen levels but couldn’t get a good reading with the machine. Olivia was taken out of the room. We waited patiently for them to bring our newborn back into the room so we could cuddle her, but they never brought her into the room. The pediatrician came in and told us that her oxygen saturation levels were very low and it didn’t appear to be an issue with the lungs. They believed it to be something wrong with her heart and they were going to be admitting her to Penn State Hershey Medical Center. She was born at 8:48 AM and by 8 PM we were checked into the Ronald McDonald house and waiting at the hospital for a diagnosis of our newborn baby.
Finally at 2:30 AM the doctors explained that the “plumbing” in her heart was backwards. She had d-Transposition of the Great Arteries (TGA) with an Atrial Septal Defect (ASD). My husband and I were shocked! We had never heard of a congenital heart defect (CHD) before and now we are being told that our new born daughter has one. Our world was being flipped upside down! Our hearts were completely broken! We couldn’t help but ask why our baby? This wasn’t supposed to happen. We were supposed to have Olivia home in time to celebrate the holidays.
The next day they had to perform an atrial balloon septostomy to make the ASD bigger because it was keeping the blood mixing so that some oxygenated blood would get to the body and keep her alive. They gave her prostaglandin through an IV to keep her Patent Ductus Arteriosus (PDA, another hole in the heart that allowed mixture of blood) open.
We finally came to terms with the fact that our Olivia needed open heart surgery to survive, but were thrown for a loop when the nurse mentioned she saw Olivia’s hand twitching and that this could mean she was having a seizure. When the nurses saw that her face was also twitching they did an MRI. Diagnose, Olivia had suffered a stroke! This meant her surgery would be pushed back a few weeks due to the risk of her brain bleeding out during surgery.
It felt like an eternity waiting on her surgery. People would ask us if she was getting better but the truth was she couldn’t possibly get better until her heart could be fixed. The surgery day was probably the worst and best day for us. Once that day was over, we could start to feel like she would recuperate and eventually go home with us.
Our family was very supportive and we had visitors just about every day to help the time go by. Even though this was a very difficult situation to have to endure we felt very blessed for the positive energy from our loved ones. When I look back, I think, how lucky we are to have experienced this and witness so much compassion from our loved ones and strangers alike!?
She was admitted December 17th and discharged January 18th, on her big brother’s 5th Birthday. Since then I have tried to educate myself as much as possible on her health. Olivia has had bumps along the way and has to take a couple of medications but that feels like nothing compared to where we were. I feel lucky to be Olivia’s mother and want to be able to help other parents who find themselves going down the same path we have traveled. My husband, son and I adore Olivia and blessed to have such a happy little girl.
Olivia’s birth has formed me into somebody who wants to be part of something big. I look forward to meeting other parents who feel as strongly as I do about advocating for our little heart patients.