My husband and I have four Children. Our fourth is a little boy named Case Daniel. This is his story and the lessons he's taught through his differences.
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, April 13, 2012
A special kind of bond.
There's just something about another NICU mom. A bond that is unexplainable. I met Lisa in January, 2011 the day she was discharged from the hospital (just a few days after the birth of her second son). I first met her aunt on the Pent House floor of the Ronald McDonald House. The Pent House is a beautiful place designed for families to connect with each other and other families. I met a lot of families up their but Lisa's was different. While speaking to her aunt I opened up. She was a stranger but I didn't care. I told her all about Case's medical history and otherwise. She was so sweet and understanding. She told me of her niece and her great nephew who was now in the NICU fighting for his life. It was then I fell in love with Ramsey, his mother, grandmothers and whole family. Lisa and I have been good friends ever since. We talk of things that none of my other friends understand, not because they don't love me but because they were never NICU moms. They were never told their boy might not make it. They never stood at rounds while doctors spoke and their heads spun with news good and bad. They never walked into a room with beeps, wires, tubes, needles and a small helpless baby that was theirs. Lisa is strong. Ramsey even stronger. He fought (and is fighting) a good fight with Jesus on his side. I feel privileged to have met him and his beautiful family. If you would like to read Ramsey's blog Rooting for Ramsey, click here.
Wednesday night Dan, Case and I met with Lisa, Dennis, Ramsey and his older brother Reed for dinner in Monroeville. It was great to get together. Our NICU days are behind us and our future is bright.
Sweet Ramsey Razza in the NICU over a year ago.
One of Case's first pictures. He is also in the NICU.
Our super boys now. Good job boys. You've come a long way!