October 12 - Dear Nicholas Sparks (Guest Blogger Taylor Johnson)

Dear Mr. Sparks,

I just wanted to share a little about my sons story with CDH. I remember sitting in the doctors office anxiously waiting to be called back to get an ultrasound and to get to hear my little boys heart beat.. I was around 20 weeks pregnant, I remember going into the room and everything seemed fine as I was getting the ultrasound.. I was waiting on the Doctor to come in and tell me how well little man was doing, and it didn't happen like that... I watched her as she came in and I could tell by the look on her face that something wasn't right. She sat down and said "we've found something called a hernia", but she couldn't go into detail with me because she wasn't for sure what type of hernia it was. I asked questions , trying to get answers about my babies health. Of coarse, everybody just wants their children to be healthy and ok. She didn't really have any answers for me besides that she was referring me to a specialist where they could tell me more. I walked out of the Doctor trying to hold back my tears but it just wasn't working.. I was so scared that something was majorly wrong but everybody I had talked to just said it was probably a umbilical hernia, or something simple like that. I did research and when it came to CDH, the Internet talked about how rare it was, so I thought there was no way that my baby had it. It finally came appointment day with the specialist, and they done an ultrasound and then the Doctor came in.. She explained to me what was wrong with him and what all he would have to go through if he survived, because this was a very serious condition and some babies don't make it. Kaden, my son, had everything in his chest except for his kidneys and that's why they were really concerned about whether he would make it or not after he was born. The last appointment I had , they set me up to be induced that coming Monday. That was 4 days away!! The nervousness really hit then. After around 17 hours of being in labor, they finally gave me a c-section. I remember lying there, my fiancé holding my hand telling me everything will be okay, and I didn't even hear an actual cry, just a couple little noises. He was immediately intubated. After a few minutes before they sent him up to NICU, they pushed him beside me as I was getting cleaned up and I remember tears in my eyes looking at how beautiful he was and praying to God that my little boy would be okay because I didn't know what I would do without him. After they took him away, I don't really remember anything else about that night , just waking up the next morning wanting to see him. We went up to see him in the NICU and they told us he was actually doing well. We were also told about the coarctation he had. Where everything was up in his chest, it caused his heart to be moved and caused a narrowing of the aorta. He done well that first few days of life and at 4 days old, he had his repair surgery for the diaphragm. We gave him our love and with tears running down our faces, we walked away as they took him back for surgery. They called us every hour and told us how well he was doing. After he was done with surgery, the Doctor came out and told us he did great and that we would be able to see him after they get him settled back into his room. He's done well so far with everything, they've brought him down on his ventilator and certain medicines. He finally opened his eyes to where we could see them just a couple days ago. He will be 2 weeks old in 2 days and he has a very long road ahead of him. He will have another surgery soon and we hope and pray he does as good with that one as he did his first. Then the challenging part will come when it's time to start trying to feed him again, because the first time didn't work out.. But he has so many obstacles he will go through that no child, better yet, anybody should ever have to go through. I hope that my sons story as well as everyone else's gets out and something can be done to figure out the cause of this horrible illness that's causing babies to go through all the things they have to go through. Please , if there's anything that you can do, please help.

Sincerely,
Taylor Johnson