Monday, May 5, 2008

Hope is Fading

Events From Saturday May 3

Grandma Gates and I went to the NICU at Johns Hopkins where we got to see Hope and speak with the doctors—they had called us late last night and requested we meet with them. It was tough to see Hope hooked up to all those tubes. It's remarkable; she is beautiful on the outside and as identical to her sister but I begin to realize that it's just a shell. You'll see what I mean when as you read this post…

The doctors gathered me and Grandma Gates into a small conference room and gave me more details about what they told us on the phone last night. The doctors at Hopkins did a brain scan to see if the trauma of Hope's birth had caused any damage to her brain. This would be a routine thing to do with a baby having the breathing difficulties that Hope was. What they found "shocked" them. There are large portions of Hope's Brain that are "missing"—watery cists where brain cells have died that are clearly evident on the ultrasound photo even to an untrained person. The doctors believe this damage to her brain was done some time during the pregnancy—i.e., it's older damage that was not caused by the ordeal she went through at birth. (We were monitored extensively during pregnancy and there was never any indication that there was a problem; every checkup they told us: "Everything looks fine.") The doctors pretty much told us that brain damage this extensive would likely mean very little if any quality of life for Hope. She very likely wouldn't survive very long if at all.

The doctors said that this is about the worse news that they could have to give a parent. The heart-wrenching choice we now have to make is whether move from the mode of doing all we can to keep her alive to making her comfortable. WOW! It's really hard to receive this kind of news. You feel so alone—almost like you are dreaming or watching a soap opera plot unfold. A room full of personnel from the best medical facility on the planet saying basically: "We're doing all we can to help your daughter and it just isn't helping and we have to decide what to do about it." No parent should ever have to make this choice… but alas this is what Laurie and I face now.

After that we had to go back to Franklin Square and give the news to Laurie. How do you tell a new mother that her one-day old child is in such distress and not likely to survive? Somehow I got the words out. All I could do was hold my wife tight as she cried. We just kept thinking: "With so many exams, how could they have something this major?!" But on another level, as much as we would like to, we can't go back and undo it.

Later that day, we received visits from John and Kathy Gates (Laurie's brother and sister-in-law) and later from GranAddie and Pop (my parents) and Steve and Trish Audi (good friends.) Everyone visited Becca in the NICU—two at a time. (Becca seems to be doing quite well by the way.) My mom and dad had a chance to hold their granddaughter. Then later in the evening Ann Atkins and Ann Adams (pastor colleagues of Laurie) came and visited and prayed with us.

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