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.
Saturday, September 15, 2012
Today is Neonatal Nurses day. As I'm thinking of how to thank one of my favorites that I'm still in touch with my mind zooms back to December 23rd, 2010. This was the day I was discharged from Magee (where I delivered Case via c-section) and moved into my new home, the Ronald McDonald House in Pittsburgh. Dan walked me through the bright colored wall of CHP and back to my tiny man's new home. There he lay, in his box under the billy lights with a visor on his face. His tiny 2 pound 13 ounce body had holes and bruises from what seemed like constant poking and pricking. I could not hold him. His food was TPN via an IV. I was completely exhausted from, you know being cut open just days before. I didn't use a wheel chair or fill my prescription of Percocet. Once in the room I realized this was going to be a long, hard road with lots of tears and triumphs. My baby belonged to the NICU. They decided when he was held, fed and poked. That first day I was mostly alone while Dan got Christmas and the kids from our home and moved it and them into the Ronald McDonald House. As the evening rolled in I was dizzy from emotional and physical exhaustion. It was then I met one of my very favorite NICU nurses, Kristy. It was 7pm. The day nurse was giving her report and it wasn't pretty, full of all the things "wrong" with my precious baby. As I listened, my face got hot and I had no control over the the tears that filled my eyes. I tried to escape but the closest bathroom seemed miles away. There she was, my NICU angel, Kristy telling me it's okay to cry. I bawled. It was an uncontrollable, ugly cry right in front of her. I was in over my head with no way out. As the days went on, I got stronger, smarter and eventually felt like Case belonged to me not the NICU. Every step of the way there was a constant comfort in nursing scrubs. You see, the doctors came and went but it was the NICU nurses that were there for the good, the bad and the ugly. They weren't just nurses. They were nurses, doctors, therapists, baby holders, baby feeders, artists, comforters, bathers and most importantly, friends. Friends that I will NEVER forget! Here's to the heroes of the NICU in nursing scrubs! You will always have a place in my heart and I will be drinking a glass of wine I your honor.;) You mean more than you'll ever know...