It's been a while since my last post, but some important things are happening in the CDH community. First and foremost, there is a CDH family that needs your support and prayers as they are going through an extremely difficult time. Their daughter Avery has fought tooth and nail to beat CDH, but they have decided to take her off of all support and spend as many precious moments as possible with her. I know that many prayers and thoughts are already being sent their way, but I ask that you add yours to the list. I have been touched by their journey as have many others and I am truly hoping for a miracle.
The second thing I want to mention is a campaign to spread the word about CDH to the media. The project is called Letters for CDH and you can find out more at www.lettersforcdh.blogspot.com. Please support this effort if you're not already doing so. It's a pure and unbiased effort to get the word out about CDH.
And what post would be complete without an update about Jaxson. We had a rocky week last week with our first hospital visit since being in the NICU. Jaxson came down with a stomach virus that presented itself in an unorthodox way - no fever and no diarrhea. Given his complicated history, we of course feared bowel obstruction or worse re-herniation. After two ER visits, a 3 day hospital stay at the brand new Children's Hospital of Pittsburgh, 3 failed IV sticks, one successful head IV, many fluid infusions, an x-ray, ultrasound, blood work and an upper GI...Jaxson was given a clean bill of health and the diagnosis of stomach virus. He's finally on the mend, eating better, gaining back the pound and a half that he lost, and back to his happy boy self. It was scary, but I feel like we as parents acted quickly, paid attention to his sickness cues and remained cool and calm so we could focus on getting Jax healthy again.
I'll end with another plea to pray for Avery and her family. CDH may be life threatening, heart breaking and merciless at times, but it produces some amazing fighters. I am praying for a miracle tonight.
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