One year ago today, on the 8th of December I had what was easily one of the hardest days of my life. We had a day full of appointments in Pittsburgh. We did this monthly but this day was the hardest. We spent around 8 hours there. Going from surgeon to OB to sonogram to another sonogram to a genetics counceler to a cold room with a big desk and a doctor that told us there was a good chance our son would die and we needed to prepare ourselves for that posibility. His growth was still greatly lagging. His one kidney was in really bad shape the other looked blocked. His heart was said to need immediate repair after birth. They thought his fingers were fused, his rectum was closed and on and on. The people that spoke to us had general concern and confusion on their faces. The same doctor that told us Case may die also said that when he was formed his "computer program" was messed up. Some links were missing. He said Case had some sort of horrible syndrome. They just didn't know what yet. He said Case wasn't made right and he had so many problems that he very well could come out unable to eat, grow and thrive causing him to die. I left Pittsburgh in a blurr. Head pounding. Beyond exhausted. I even vomited on the way home. I lay awake that night pleading with God for our son's life. That he would not only live but live a good life. I begged him to tell me if Case would live or die. All I would hear is the baby saying "I'm okay mom." As a matter of fact I was laying in bed early the next morning thinking of the baby. Feeling like I couldn't handle any more. I remembered the verse that says God won't give us more then we can handle. I said, dear God... I'm not this strong.... I can't handle much more... I sent Dan a text saying that I just wanted the baby to be okay. As I lay there awake I had this vision of a little baby floating around in my belly, he said, "I'm okay mom" with a smile on his sweet face.:) Shortly after I had that vision Dan replied to his text with this: "I'm okay, mom"- Love, the baby. And he was whether he lived or died he did and does belong to Jeaus and will always okay. I do feel very blessed to have him as a part of our lives and to be his mother. :) He wasn't as terible off as the doctors thought and his heart was miraculously better then they thought. Of corse, when I saw him for the first time, I thought he was and still think he is perfect!;)
'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise..
For I am the Lord your God
who takes hold of your right hand
and says to you, Do not fear;
I will help you.
This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.