My story starts March of 2006. I was going to find out if my sweet baby was a boy or a girl completely unsuspecting, forgetting, as everyone seems to, that ultrasounds are for checking up on the baby. The nurse kept going over and over my belly saying half sentences like, "What is..." and "Hmm...is that...." Finally, she brought the doctor in and he said the same half sentences and then, "Your son has a birth defect called Gastroschisis."
Gastroschisis is where the abdominal wall of a fetus doesn't grow correctly so their bowls are on the outside of their body. For 8 weeks they had me come in 3 times a week to watch him. He wasn't growing and my fluid was low so 3 times a week I heard how my son must have something else wrong with him and IF he lived to be born he would die shortly after. Then from week 28 to 30 they made me stay in the hospital POSITIVE that they would have to do an emergency C-section. They were wrong so they let me come home on bed rest, coming in every other day until the 36 week when they insisted I deliver.
JT was born perfect. 3 lbs 9oz of beautiful screaming baby boy with his little purple guts swinging around. They took him down the hall of U of U to Primary Children's NICU. His first surgery was a few hours later. Pretty much all they did was stuff his bowls back in and sew him up. Parts of his intestines were affected they were too small in places so nothing could pass through. These parts needed to be cut out but the surgery had to be postponed so he could grow. (by the way, they were wrong about something else being wrong with him)
Two weeks after he was born, while we were still waiting for the next surgery, they told us he had an infection but don't worry because most everyone gets them and it wasn't likely it was anything to worry about. They were wrong again. Bacterial Meningitis. My heart dropped. My mind screamed, "THIS IS WHAT PEOPLE DIE FROM!" For 10 days we couldn't touch him. He was white, whiter than I have ever seen a person be. Then they took us into a room full of doctors. You know this scene, it's the one where everyone except you knows something horrible and it's time for you to know too.
They showed us the MRI's, the ultrasounds and then they explained. "Your son's brain is liquifying. The parts that are gone will never come back. 75% of his brain will not exist ever again. He could be a vegetable...or he could almost be normal...don't hold your breath on that though." Okay, that wasn't their exact words but close enough. From that room on, my husband lost all faith in God. From that room on, I knew JT wasn't being taken from me. He wasn't dead, I could stop praying for him to die quickly and I could stop crying and planning his funeral. On good days I still feel like that. Who cares about the therapy and the doctors offices when you have that sweet child on your lap?
JT has been behind on all of his milestones. He now walks and he has a fabulous sense of humor. He is happy. Completely attached to me, which I love. He doesn't talk but we have a couple speech therapists. We recently found out he has sleep apnea and seizures while he sleeps. Lots of doctors for that. We also have been working on his left ankle. They haven't used the words Cerebral Palsy but I think it is safe to say he falls in that circle with all the talk about "tone" and whatnot.
So we are really busy but I am so freakin' excited about this that I will try my hardest to at least read what you guys write and comment but we will see when I can write again. I am so happy to have you guys!!! Sorry about how long this is.