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 16, 2011

December 20th and 21st 2010

Last year on the 20th of December, 2010, Dan and I had another hard day. It started out normal with a routine sonogram in Johnstown. I didn't feel like going. I was tired. Tired of bad news. Tired of more and more problems. Tired of traveling. Just tired. Needles to say we went anyway. The tech immeadiatly saw that Case's cord blood was dangerously low and so was the amniotic fluid. The doctor came to the room immeadiatly and sent us to the hospital across the street for a non-stress test (I was very familiar with those. Having them routinely twice a week). Case passed the non-stress test which meant he would let Dan and me go to Pittsburgh. Right before we left he told us good luck and he hopes all goes well. I hugged him and cried. That was the last time I saw that dear, lovely doctor. If Case would have shown serious distress I would have been c-sectioned in Johnstown and Case life flightef an hour and a half away from me to Children's. I was thankful to have the time to go to Pittsburgh. Once we arrived at Magee's women's hospital they put us in a small room. I layed on a padded table and they hooked me up to monitors for hours. At one point Case's heart rate dropped so low several nurses and a doctor rushed in. I want to say it went down into the twenties. I prepared myself in those seconds to say good buy. They were going to rush me in for a c-section right away but he stabilized. They did another sonogram and admitted us to a room. There I was monitored all night. At around 8:40 am on the 21st a team of three doctors came to my room with a sonogram mechine. They took a small amount of amniotic fluid to see if his lungs were developed enough. It was hard for them to find a "big enough pocket" of fluid all together but they did. It only took twenty minutes to get results. His lungs were good! They immediately took us to the OR and strapped me down. It only took around 10 minutes before we heard him cry. I still tear up when I think of it. It was the most beautiful sound in the world. There were dozens of neonatal doctors and nurses on the room. They didn't let us see him right away. Dan even asked and they said no. They had to "assess the severity of his problems". As they rushed him to the table (we couldn't see him. There was a drape in the way). I heard a nurse say, "he looks nice and pink. I don't think his heart problems are as severe as they thought.". We found out a few days later, she was right.:) Anyway, they finally brought him to me. He was so beautiful. All 2 pounds 13 ounces of him (he was 13 and 3/4 inches long). My arms were still strapped down so I asked the nurse to bring him close to my face. She did. She even opened the front of his blanket (he was all clean and swaddled) I kissed every bare part of his body. It was wonderful. They quickly took him away again and put him in an isolate (a heated glass box) and wheeled him to my room. Dan and I said good buy. And the flight nurses flew my baby away. I had to stay at Magee till I was recovered.

I will never forget the pain, grace and blessings I felt in just 24 hours. This was the start of another journey. Another beautiful, unknown, amazing journey. I am thankful for these journeys and that I have been chosen.;)

1 comment:

  1. My husband Allen was 2 lbs 1 oz when he was born:) We have similar baby pics of him. Except case had WAYYYYY more hair. Allen and his twin brother Brian were born at 7 1/2 months gestation.