Monday, May 14, 2012
My journey with my daughter Yanni began in December of 2001,
when she was born. I had a standard scheduled Cesarean-section. Yanni is the third of five children and the two born before her were also c-sections. Surgery went wonderfully, and Yanni weighed in at a beautiful and healthy 7 pounds 8 ounces.
But right after birth, her blood sugar dropped and so did her oxygen saturation levels. Unfortunately, the doctors just couldn’t figure out why. They placed her in the NICU, where she stayed for 4 days until they believed she was stable, and sent us home. I couldn’t have been happier, because although she hit that initial speed bump, she seemed to have come through just fine. She ate very well, and behaved like any newborn would. As time went by though, I noticed that Yanni didn’t seem to be “seeing.” She wasn’t tracking objects, and her eyes were bouncing around a lot. I brought it to the attention of our pediatrician at the TIME, and she blew it off as normal newborn behavior. I listened to her in the beginning, trying to disregard my gut feeling that something wasn’t right. In the meantime, Yanni developed a nasty case of RSV, and we were again thrown into a state of complete worry as she fought for her life in the hospital. She became so weak that members of my family and my few close friends believed (though they didn’t share these thoughts with me) that Yanni might not pull through.
By the grace of God, she did. Again we were sent home and I was relieved just to have my little girl back in my arms, away from the hospital, the doctors and all of those beeping machines. By our next well baby visit, Yanni was 3 months old, and I brought up my concerns about her eyesight to the doctor again. Again, I was shot down and told not to worry.
This time, I decided it was time to seek the opinion of another pediatrician, and so I changed to a new doctor and it was with her help that Yanni’s diagnosis came to light.
Monday, May 7, 2012
June 17th 2008, my husband Dustin and I welcomed Gage Rayden into the world. With an overall "normal" pregnancy we were excited to meet our new baby boy.....that was until we noticed something was wrong and no one was telling us what it was. Hours after my C-section they still wouldn't let us hold or even be in the same room as Gage, they kept telling us that he just wasn't thriving the way that he should and he needed to rest. We went the entire night without being able to hold Gage; no one had been able to hold him except for Dustin right after Gage was born. The next morning the pediatrician came in and told us that they were going to move Gage to the nearest children’s hospital, there was something wrong with our baby and they had no clue what it was. My heart sank, what could be wrong and what was going to happen to my precious baby?
The next few days was like a whirlwind, it seemed like years before we knew what was going on, but at the same time it seemed like things were moving so fast. After the first day of being at the University of Kentucky Children’s Hospital our nurse finally came in and told us that our son would need an open heart surgery, but the doctor would have to explain everything to us and he would be in as soon as he could. Dustin and I broke down, at that moment even though there was a room full of people it was like we were the only two people in the whole world. It was a lot to take in when the cardiology team and surgeon came in to speak with us. Gage had a severe Aortic Coarctation and multiple holes in the bottom portion of his heart; he needed open heart surgery ASAP. The next day, at just three days old our little boy would undergo his first of 2 open heart surgeries and his 1st of four heart procedures. It seems somewhat weird to me now the sense of peace I had in my heart that night after everyone left and things began to sink in. Looking back I believe that God had his hands on me that night and sheltered me from my fear of what could happen to Gage while the doctors had his tiny heart stopped. Gage's first heart surgery took over 6 hours, it felt like a lifetime! When they finally called to let us know that they would be taking him to the PICU we all ran down the stairs from the floor my hospital room was on to the hall where they would be bringing Gage down. I can remember that moment vividly, there were people lining both sides of the hallway at least 20 people standing there waiting to catch a glimpse of Gage as they brought him down. As I saw them wheeling Gage's little bed down the hallway the tears began to roll, there he was, doctors and nurses all around, and tubes coming from everywhere. No one is ever prepared to see their child in such a state; it broke my heart looking at my small child in such bad shape.
That night we stayed by Gage's bed as long as we could and returned from my hospital room first thing that next morning, when we got into the PICU his nurse met us and informed us that Gage had begun to have seizures in the night. They started him on Phenobarbital and scheduled him to have an MRI of his brain to see what was going on. Again I felt crushed; Gage had already been through so much!
Wednesday, May 2, 2012
Peyton's mom's tattoo.
Dr. Juan Pascual receives two major grants for rare brain disease research
"NMR offers access to an unprecedented amount of metabolic information of very high quality right where the disease takes place, without subjecting patients to invasive procedures or radiation.We are also eager to apply these methods to the clinic population we serve, which is one of the largest mitochondrial patient groups anywhere."