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.

Friday, December 23, 2011

Easy is over rated.

Last year at this time was ...a blur? I was released from Magee and began my temporary residence at the Ronald McDonald house/Children's hospital on December 23rd. The first few days are blurs in my memory. I had just had a c-section. I didn't get my perscription for Percocet filled so I was walking around the hospital "recovering" from a c-section and half delirious. At one point on the 23rd I remember breaking down. It was 7 pm and the day nurse was giving Case's night nurse report. It sounded aweful... "multi-cystic, dysplastic kidney, dilation and or blockage of the other kidney, posible coarctation of the aorta, a large VSD, an ASD, severe hypospadias, unfound testis, IUGR, unknown syndromes... and on. It was too much. I broke down. Right there, in front of the nurses I sobbed. I didn't even try to make it to the bathroom. I just let it all go. "This isn't how it's suppose to be." I thought. "I should be home, nursing a big, healthy baby. Spending time with Dan and the girls. Admiring my Christmas tree." It wasn't easy. In fact, it was really hard. The hardest part was walking out of his room. They let us hold him for 15 minutes each on Christmas eve and for weeks after that it was only 15 minutes. He was under the billy lights for jaundice for the first few days. I wasn't alowed to feed him. Really, there weren't a lot of reasons to be in his room but when I left him, I ached. I left a part of my body in the NICU. He was a part of me. He spent 8 months inside of me and I ached for him. Just going to the local Walmart made me cry. I wanted him in my arms so bad it hurt. It wasn't being away from home that was hard it was feeling like he belonged to the NICU that was near impossible. But easy is over rated. Easy didn't make me grow. Easy didn't make me love. Easy didn't lead me to Jesus's voice. Yes, easy is nice but easy is not what God had in mind for Dan, me and the children. God has a bigger picture. A better plan. It's not always easy but easy is over rated any way.;)

1 comment:

  1. I remember those same emotions, especially when trying to do something "normal".