tag:blogger.com,1999:blog-3265009737359661353.post1035866531525238910..comments2023-10-01T05:52:03.758-04:00Comments on Where do we go from here.....: Meeting with NeonatologistMeghanhttp://www.blogger.com/profile/15525601797993137270noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-3265009737359661353.post-47953800682333365392011-09-17T13:51:03.854-04:002011-09-17T13:51:03.854-04:00Having Trisomy 13 is like throwing a handful of di...Having Trisomy 13 is like throwing a handful of dice and seeing what happens. The syndrome itself won't do any harm on an ongoing basis other than what she has right now. Once Quinn is born she will have whatever problems she will have... no new syndromes will suddenly develop. Once those are taken care of she will have an easier time. My son had about 12 problems... 5 of those problems were going to require surgeries. Thankfully, he won't need those surgeries. I give credit to God. When our problems are bigger than we can handle, that is the time when we need to ask God for His help. One of my son's major problems was a tethered cord when he was born. The neonatologist said that it was pulling the bottom spinal column so tight that it was nearly fused with the one beside it. He was concerned whether Troy would be able to go to the bathroom or have other immediate issues. The scheduled an appointment right away with a neurosurgeon before he was two weeks old. All the problems were overwhelming. For the tethered cord the typical fix is to do open back surgery and to cut the spinal cord at the base so that it is free. I was ready to argue with the surgeon that we don't want to have surgery because we felt it could do more harm than not. On the day of our appointment with the neurosurgeon, the radio was on softly in the background to a religious station but we weren't listening to it at the time. I said a silent prayer though that everything would be OK. Right after I made my prayer, I heard the preacher yell "God will cut his cord! He is going to cut the cord!" I told my wife to listen... and I turned the radio up, but the preacher was now talking about something else. It sent chills literally down my spine. We went to the appointment and the neurosurgeon said, "You know what.... I'm not sure I even see a problem here. I want to do a follow up in 6 months but from what I see, everything looks like it is fine, except that the spinal cord is stretched a little, but that won't hurt him." He showed me the MRI photo and the spinal cord went 3/4 the way down Troy's spine and was not stuck on the bottom spinal cord as it was when he was born. God owes us no favors and He may have plans we don't know, but He can make a difference when you ask if it is His will. We still have issues we are dealing with, but I have seen some miraculous things happen since my son was born. I pray for you and your family.Troy's fathernoreply@blogger.comtag:blogger.com,1999:blog-3265009737359661353.post-74956107556196089962011-09-17T10:00:15.071-04:002011-09-17T10:00:15.071-04:00Thank you both so much for your comments! You are...Thank you both so much for your comments! You are both such wonderful ladies and I hate that we had to meet under these circumstances. <br /><br />Katie - I am also praying for you, Hallie, and all of your family. This path that we are on is so hard. I keep praying that we will both get to meet our girls and hold them close for as long as God allows.<br /><br />Miranda - You amaze me! You are so strong and have such faith through loosing Annalise. I hope that should we loose our Quinn that I am able to carry myself with as much grace as you have.<br /><br />I wish that none of us had to go through this but I thank God that I have met both of you. Know that you have both helped me through this just by my knowing that I am not alone.Meghanhttps://www.blogger.com/profile/15525601797993137270noreply@blogger.comtag:blogger.com,1999:blog-3265009737359661353.post-58675394177057581282011-09-16T23:11:31.843-04:002011-09-16T23:11:31.843-04:00I don't have the right words, but know that I ...I don't have the right words, but know that I feel so much of this, too. I don't understand why at all, but I'm praying for you & Quinn just as I pray for my little Hallie. I have been feeling much the same this week. It's been a hard week! What's up with that?! :) So much pain right under the surface and having to keep it all together is just hard to manage some times.Katiehttp://thelittlegreenfamily.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-3265009737359661353.post-31841940327550198252011-09-16T19:03:43.883-04:002011-09-16T19:03:43.883-04:00There are no words. My heart is so heavy for you g...There are no words. My heart is so heavy for you guys - it literally aches for what you're going through. I understand the pain. I'm so sorry. Praying hard for you. Let me know if there is anything I can ever do for you.Mirandahttps://www.blogger.com/profile/09733530093257296679noreply@blogger.com