Corkin, Cadence Skylar

[left:766c3af4d0]http://www.cdhsupport.org/graphics/Corkin-Cadence.jpg[/left:766c3af4d0]Hi my name is Kara Gleeson , I just subscribed to the Cherubs site and I am following through with our story. After 2 years of trying to have our second child , two miscarriages , the last one February 5 2006 , I got pregnant for Cadence in April. In July we had our first ultrasound and that's when we found out something was wrong they could see her stomach up in her chest. We found out days after the ultrasound was done not the day but we knew something was wrong because the way the tech was acting. We found out it was our girl we had been hoping for . When the nurse called me to tell me something was wrong she said it was nothing to worry about that it was just a little hole. Boy were they miss-informed. Anyway my doctor sent me to see specialist almost three hours away from home. That’s where we had to go every week from then on to get ultrasounds to check and make sure she was ok. I went through two amnio's to check for lung maturity neither one was good, they finally decided that I was to be induced sun. January 8 2006. I had her naturally at 11:07 pm the 9th. The whole room was full of specialist waiting for her arrival. Once she was born she couldn’t get any air and was immediately put on a vent. She stayed on the vent for months and was put on an oscillator but eventually had to be on ECMO. She remained on ECMO until her heart and lungs were well enough to get her through her hernia repair on January 24. She nearly made it through her surgery because she got cold and they had to stop , it took 4 hours longer than expected , it’s was a terrible agonizing wait to say the least. She eventually started to get better, her chest tubes came out , she was weaned off her oxygen, which that in itself was amazing because she only has one functioning lung that is small and an upper lobe that doesn't work. I finally convinced them to let me feed her with a bottle instead of having a tube down her throat all the time which she hated and I think made things worse. I took the time and got her to eat and was told I had 48 hours to get up to full feeds and I could take her home, well we did it and we did really well for a week then something was wrong she stopped eating and pooping and then started throwing up blood. We immediately rushed her back to the hospital in Syracuse April 2 , she had a bowel obstruction for her getting scar tissue from her hernia surgery. While I didn’t feel it was right they wanted to do a fundoplication and put a g/j tube in her to feed her because they had to do surgery to remove the obstruction. I agreed to it because I thought they would know best. During these three operations her stomach wouldn’t go around her esophagus to do the nissen fundoplication so they stapled her stomach to her throat, this surgery took longer than expected also. She spent two more weeks in intensive care ended up having to have a blood transfusion because she was throwing up blood. She couldn’t eat because her stomach and esophagus were so eroded by stomach acid that’s why she had the transfusion. The nissen was to get her to not throw up but she can. We got to come home the end of April after Easter. She is a strong little girl she is almost 6 months old now and weighs 11 pounds, they said she will always be small and that is one of there concerns of her. They want her to gain weight. I think she doing great for only having half a diaphragm. We have frequent visit with her surgeon and she answers all my questions weekly it seems. We had one little slip up with her feeding tube coming out which scared the hell out of us, but we got it replaced and she is ok. We go back to see her doctors July 18 for her developmental assessment and to see her pulmonary team. It has been really hard but she is all we could have ever dreamed for.

Written by Cadence’s mom, Kara Gleeson (NY, USA)
2006