Meet CASE!

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.

Wednesday, October 5, 2011

The Journey.

I will lead the blind by a way they do not know. In paths they do not know I will guide them. I will make darkness into light before them and rugged places into plains. These are the thing I will do  and I will not leave them undone. Isaiah 42:16

 I found out I was pregnant with Case in May of 2010. My husband and I had no idea what a journey we were on. In September 2010 at about 25 weeks of pregnancy we started a long string of second level sonograms usally resulting in more bad news. Case's diagnosis before birth was grim. "He has so many congenital anomalies there is a good chance he will have failure to thrive and die" - said by one of the Pittsburgh hospital's obgyns. We knew that God was in control and that everything was going to be "okay". We did not know if our son would live or die and if he did live we were uncertain of his health and overall wellbeing. What we did know is that he did, does and always will belong to God and he would (regardless of where he was) be okay.

Case was born through c-section on December 21, 2010. He was less than 4 weeks early (according to the very latest due date they gave me) at 2 pounds 13 ounces.

He was diagnosed with: severe IUGR, a multi-cystic dysplastic (non functioning) kidney and a few other congenital anomilies. Nothing as severe as we had prepared ourselves for. He spent 38 days in the Children's hopital. I stayed at the Ronald McDonald house (a beautiful place) 100% of the time.

In the blogs to come I will share journal entries from my pregnancy and updates on how Case is. We travel often with Case to Pittsburgh Children's hospital (about 2 or so hours away) to see many specialists.

Give thanks in all circumstances for this is the will of God. 1st Thessalonians 5:18

1 comment:

  1. This is beautiful Liz. I am glad I found this. I can't wait to read more about Case and your family <3