Saturday, April 18, 2009

Starting at the beginning

January 2, 2008 my husband Barry and I bundled up and headed to Allegheny General Hospital in the north side of Pittsburgh for our first ultrasound appointment. The waiting room was not very crowded and we were taken back fairly quickly to meet our baby for the first time. Our ultrasound tech was very nice and patiently walk us through the first of what would become very many ultrasounds.

"Would you like to know the sex of the baby," she asked. The answer was yes, we were dying to know! Seconds later we had our answer, a boy. The first boy on my side of the family in quite some time. The ultrasound tech finished up and said the doctor would need to review her images before we could leave. "Ok, we said and I anxiously called my dad to tell him our news!"

Several long minutes later the doctor came in. His bedside manner was not the best. He was very serious and grimm looking. Barry tried to break the ice with him to no avail. He sat down and began taking more images of my belly. We sat silent, exchanging glances at each other while we waited for the doctor to be finished. Finally, he told me to clean my belly and sit up.

His words exactly, "I do not have good news for you." That was the beginning of our CDH journey.

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Welcome Jaxson's CDH Journey

Jaxson is a CDH survivor and this blog follows his story and our ongoing efforts to spread the word about CDH.

Jaxson was diagnosed with LCDH at our 20 week ultrasound. His stomach, intestines, spleen, apendix and left lobe of the liver had all herniated into his chest cavity. We were told his chances of survival were less than 50% and that he had an 80% chance of going on ECMO.

He was born at Hospital of the University of Pennsylvania and transported next door to CHOP on 5-19-08. He did not go on ECMO, had his repair on 5-23-08, came off the ventilator on 6-6-08, breathing on his own by 6-12-08 and was discharged after 37 days in the NICU.

He is our CDH rock star!