As our scheduling luck turned out, we met with the neonatologist, met with the new OB, and had the fetal MRI all on July 23.
We first met with Dr. Jan Byrne, director of the Fetal Therapy Program at the University of Utah Hospital. As of August 1, she would be taking over pre-natal care of our son. That meant that Bekah would now have weekly 45-minute trips to Salt Lake for the last 5 weeks of her pregnancy.
We then met with Dr. Bradley Yoder, professor of pediatrics at the U of U School of Medicine and Associate Director of the Newborn Intensive Care Unit at Primary Children's Medical Center. Dr. Yoder explained the care that Nathan would receive once he was born and informed us what they monitor and the statistics that they follow to determine how or if the child is progressing. From information gathered from CDH babies from around the country, they had a pretty good idea of the line that marked survival from fatal. But they always do everything they can for babies who fall just under that line "just in case."
And in a very sobering way, he let us know that sometimes, regardless of what they do, they just can't save a child's life. In those situations, what they usually recommend is taking the baby off of all life support systems and providing it with "compassionate care" or in other words holding him in your arms and loving him until he gently passes from this life into the next. Dr. Yoder then gave us a brief tour of the NICU at Primary Children's.
Finally, we topped the day off with the fetal MRI. I wasn't allowed to accompany Bekah into the MRI room, so I had a front row seat in the waiting room while she spent about an hour in the MRI. They took lots of images in order to get the best picture possible of just how severe Nathan's hernia was. The MRI confirmed the severity of the hernia and also that Nathan had a floating stomach (sometimes in the chest, sometimes in the abdomen).
And that was it. Everyone was supposed to be prepared now. The doctors had all the information they could get. We had been briefed as best we could considering the circumstances.
We met with Dr. Ball one last time on August 1. Now that all of the pre-natal evaluations had been completed and we had met with everyone we needed to consult with, Dr. Ball was handing care over to Dr. Byrne. It was a bittersweet moment. Dr. Ball had done so much for us to get us ready for Nathan to be born. It was he who had arranged for all of the appointments and meetings with specialists to be made. So while it was nice to be "graduating" from his care, his help and assistance had proven invaluable in guiding us along the beginning of this journey we didn't know we would have to take.
And for that, we will always be grateful.
The Family
Welcome to our blog!
We've decided to start at the beginning and work our way forward. You'll have to check back often as we chronicle the last 2+ years.
Thank you to all those who comment. We appreciate knowing you enjoy our blog.
Also, we want to say thank you to all those who have recently started following our blog. We hope you find it informative and enjoyable.
We also realize that some of you may wish to contact us. So we have created a special email account for you to do that. Contact us at nathansfamilyblog@gmail.com.
Tuesday, September 15, 2009
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