Tennessee

Eryn Baines

Co-HUB Leader

[email protected]

Eryn BainesI’m Sean’s mom, Eryn Baines. His story began when I was 13 weeks pregnant and found out he had Gastroschisis. I was terrified when my Dr. came in and told me that something wasn’t right with the ultrasound. You think your going in for a regular appointment. From that moment on I knew my baby boy was going to be special. I actually had a pretty easy pregnancy except for the extra appointments to check on my little peanut. That’s what my mom named him before we found out the gender. My Dr.s told me that they doubted that I would go full term. But I did my best and carried him til 36 weeks. I remember that day like it was yesterday. At 3:20 a.m. February 17th 2010 we were blessed to have our baby boy. I saw him for a split second before they whisked him up to  the NICU. One can try and prepare themselves for something like that but you just don’t know what to expect until you go through it. Once the NICU staff got him up there they immediately set up the silo and started the whole process. Part of Sean’s small intestine was out when he was born. The duodenal loop. I think I got that right. It took about a week after he was born before they did the closure surgery. That loop of bowel was so big and swollen and that’s why they waited as long as they did. Once the closure surgery was done we started our on our journey to get him home. We ended up staying in the NICU for about 2 an half months. Of course we had our ups and downs throughout our NICU stay but more ups than downs. We ended up getting to go home with our baby boy. We hadn’t been home a week and he was just constantly spitting up and I’m not talking your normal spit up, I mean projectile spit up. So back to the Dr we went. Ended up being a ingurnal Hernia. Which was on the left side of his groin. They did the surgery to remove it and we were able to go home the next day. Then life went back to normal. He was a happy and healthy baby boy. Then when was about 18 months old he was just staying sick all the time and we battled cdiff a lot. He would throw up 6 to 9 times a day. I kept saying that there was something wrong and the only Dr that I could get to listen to me was his pediatric surgeon Dr. Leslie Taylor. She ended up doing a couple of tests. Doing a berium test and doing an endoscope. But none of the tests showed anything yet he was still sick. So she ended up saying that we only had one option left surgery. Well no one wants to just say yeah go ahead but at this point it was our only choice. So we went ahead and did the surgery and after 4 an half long hours I saw Dr.Taylor’s  face and she said I’m glad that you went with your gut feeling. No pun intended. Because he had what was starting to be a blockage in the loop of bowel that was out when he was born. She said that she couldn’t even get her pinky finger through it. It was rotting from the inside out. After that surgery it was a long recovery road. We spent like 5 to 6 days in the hospital then we were able to go home. But when we got him home it was like we had a newborn baby all over again. He couldn’t walk talk nothing. He would get these blank stares on his face and would just space out. It worried me. Ended up he was having pedimal seizures. They said it was because he was put under for so long during the last surgery. After we got that taken care of he went back to being a happy and healthy toddler. We had some problems with constipation while we were trying to potty trained. After we got through that we have been doing awesome. I pray everyday that he stays healthy.