CHD Awareness Week 2014 - Heart Warrior Braxton

CHD Diagnosis: Transposition of the Great Arteries, minor ASD, minor VSD

Braxton's Story: Braxton was born on December 27, 2012 at 1:55 a.m. He passed all his tests, screens, and had a bath. During our bonding time, in the mother baby recovery room, a nurse arrived to take him for vitals and shots. This was about 6 hours after he was born. She returned a bit later but without Braxton. She said he was turning blue and that his oxygen level was dropping. She said they put him on oxygen, were going to do some tests and an echo, because they believed he had a heart defect. She also mentioned that a pediatric cardiologist from the local Children's Hospital was on their way to evaluate him. I felt like this was the meanest joke around or she had mixed up the babies because I was unaware of him having any problems.

The pediatric cardiologist said he needed to be rushed to Children's Mercy (our local children's hospital) for a balloon catheter to be done so that he could receive the oxygen he needed until he was strong enough for his surgery.

I spent the first 48 hours away from my newborn baby, family, and friends because I wanted everyone with him, supporting him in his time of need. It was not the introduction to parenthood I expected for me or my husband.

Braxton had his open heart surgery on January 7, 2013. It was such a bittersweet day. He was hopefully getting a second chance at life but it required an arterial switch of his arteries. His surgery went beautifully as planned. However, during his surgery his left vocal cord was clipped, paralyzing it. The doctors were unaware of this until almost a week an a half later. I had to give up nursing and we had to thicken his formula.

Everything was going great and he was showing great recovery until the night/early morning of January 19th. I was holding Braxton, trying to calm him down because he wanted to nurse and not drink his bottle. He was screaming and crying so much it broke my heart. Then, all of a sudden he twitched, his cries and screams stopped immediately, and he went from color to blue. I looked at his monitors and they read flat line and 0. I screamed for my husband to get help. The nurse ended up calling a code blue over the hospital. Braxton had refluxed so much of his thickened formula up and without a working left vocal cord, he choked on the formula. It had filled his lungs and caused him to have cardiac arrest, from basically drowning. The doctors did everything they could with nothing working. All my husband and I could do was listen and cry because there was nothing we could do to help our newborn baby. Finally, after what seemed like an eternity, the doctor shot some epinephrine into his right leg bone marrow. It worked!

From there, Braxton ended up spending another 2 weeks in the hospital because he had to have a Gtube placed and had a fundoplication operation done to prevent him from refluxing and choking again.

He finally was able to go home on January 31st, 2013.
36 days in the hospital, 1 OHS, 3 other surgeries, 1 cardiac arrest episode, and finally we were being allowed to go home.

Since leaving the hospital, Braxton has done nothing but proved all doctors wrong. His vocal cord is healing, he is able to eat and drink without thickeners, he is developmental on track or advanced, and continues to thrive.

It has been quite the journey but am grateful God chose us to stand by his side and support him through this :)