Grayson Brian (birth story)

Night before Grayson was born. WHOA momma!



Grayson's birth story is a little more complicated than Austin's. In the 8th month of pregnancy, I started feeling some odd movements. My doctor assured me that it was just the baby moving down and stretching out. Everything looked fine on the ultrasound and heartbeat was good so they weren't worried....

Grayson was born via c-section on July 27,2010 weighing in at 6 pounds and 13.4 ounces.

The first day went well. After the c-section, I went to recovery and Grayson was brought to me so I could nurse. He looked perfect!! The doctors said we had ourselves a healthy baby boy. We were taken up to our room to get settled in and at this point we are just so happy that our second boy is here and healthy. That first night, Grayson slept all night long, which was odd to me considering his older brother didn't sleep through the night until 3 months old but again, I wasn't worried. That next morning (the day after he had been born) I tried to nurse him but he wasn't latching on. We decided to give him a bottle to supplement and he loved it. He drank 2 oz of formula and I burped him and he fell back to sleep. I decided to lay him down and let him rest. Just as I laid him down,  it happened. Grayson had his first seizure. It was the scariest moment of my life. He quit breathing and stiffened up, his head twisted around....it was horrible. Thank God that the nurse was in our room when it happened. She immediately called the NICU and he was rushed out of my room to be evaluated. He then had another seizure on the way to the NICU.
In the NICU, the doctors immediately began running tests.
 

Grayson in the NICU (3 days old)

In the NICU, he was immediately hooked up to an EEG monitor that confirmed that he was, in fact, having seizures. They then performed a spinal tap and took blood to run labs. All of the tests came back normal and they ruled out alot of possible causes. We still had no answers at this point. What was wrong with our baby??
Over the next 3 weeks, the neurologists tried multiple meds to try and stop the seizures, none of which worked. Grayson was having up to 20 seizures a day lasting anywhere from 30seconds to a minute each.  These three weeks were the worst three weeks of our lives. Holding our baby while he seized over and over was the most heart wrenching thing Brian and I have ever had to do.

Big Brother Austin visiting his baby brother in the NICU


After three long weeks, countless sleepless nights, and tons of seizures later,  the neurologist said that there was nothing else that he could do for Grayson. They recommended that we transfer him to UVA and we immediately agreed. We had to find someone to help our boy!!

 

On August 11, Grayson was transferred to UVA.  Upon arrival, he was immediately hooked up to a 24 hour EEG monitor that also videoed him. He was still having at least 15 seizures a day. We  met with the neurologist there, Dr. Rust, (a.k.a. smartest man alive) who discussed his plan for Grayson. He reviewed all of his records from RMH and read the EEG. Later that day, he talked to us about a new medicine that he wanted to try on Grayson. He said that he had never gave it to a newborn, actually he had never given it to any child under 2.  He believed that it would work, though, and we trusted him so we agreed. Grayson was put on Trileptal that day and the seizures stopped immediately! ! 

Seizure free!


He stayed at UVA for 2 more weeks for monitoring and additional tests, including genetics. They ruled out so many possible causes but in the end decided that those "movements" I had felt in the 8th month of pregnancy were seizures. He had been seizing in the womb those last 2 months. Something must have happened in utero to cause him to lose oxygen which caused him to have damage to his brain which caused the seizures. Doctors said he could have rolled over onto his umbilical cord, or had a stroke, but that is something that we will never know this side of heaven. This loss of oxygen caused Grayson's brain to be small. The MRI showed that Grayson's brain is overall small. They used the term "Global damage". His ventricles are enlarged due to this causing him to have macrocephaly (bigger head). He was released from UVA on August 30 and we were finally able to take our baby home! At this point, we had no clue what the future held. We only knew that our boy was no longer seizing and we were bringing him home....finally!!

 Leaving UVA


Grayson's story: To Be Continued.........