Saying Goodbye to Our Hope… but hanging on to hope

Events from Sunday May 4

Laurie and I didn't sleep much Saturday night. Not only do we have the emotional roller coaster of the past two days but Laurie is recovering from her C-section and still in considerable pain, and I seem to have come down with a bad cold. It came on fast. I started coughing a bit on Saturday afternoon, but by evening I was much worse. In fact, I went to the Emergency Room to be checked out and they said I do in fact have bronchitis—when it rains it pours.

In the morning, Laurie and I went to the NICU at Franklin Square to visit with Becca. This was Laurie's first opportunity to breast feed Becca. Meanwhile, I took care of errands including getting our room packed so Laurie can be discharged later today and we can go down to Johns Hopkins to say goodbye to Hope. Reverend Sandy Taylor (who mentored Laurie) will come and baptize Hope and then we will disconnect Hope from life support.

Tony Hunt (Laurie's superintendent) came to visit Laurie. He prayed for us before he left. There is a delay in discharge because it was decided that Laurie should have an ultrasound of her leg to make sure that there are no blood clots—Laurie had lots of swelling in her feet and some pains so they decided better safe than sorry.

We went to Hopkins to have a last opportunity to visit with our daughter. We've decided that her chances for a decent quality of life are not very high and the best thing to do is let her go. Laurie was able to see the brain scan results that I saw yesterday and that helped her, I think. We took some time to visit with Hope and then Sandy baptized her. (The staff cleared out the area while we were there.) After that they disconnected most of the tubes that she was connected to and mom and dad got a chance to be alone and hold her while Laurie's parents, my dad, Beverly DeFontes (a close friend of Laurie's), and some of the staff went to another room.

Laurie and I held Hope until Hope's heart stopped—it took a little while since she had been on strong medications to keep her heart beating. After the doctor confirmed her heart had stopped, we spent a little more time with her, and then we rejoined the family and gave the others a chance to hold Hope one last time. I have to commend my dad. He's not extremely comfortable in situations like this and there may have been times in the past where he was less than compassionate, but he impressed me with how he "stepped up" in this situation and was there for his son at a time that I really needed him. Thanks dad! I know it wasn't easy but I'm thankful you were there.

I also have to commend the staff at Hopkins. They could not have been more caring and compassionate in dealing with us. Even the doctor gave us all hugs, which really stands out as somewhat unusual. Several of the nurses asked to stand in for the baptism and we heard from Sandy that they were impressed with how our family handled this very difficult situation. (They will do an autopsy on Hope to see if they can learn more about what exactly caused the brain damage and then send her body to a local funeral home.)

Once we finished, Laurie and I went with her mom and dad for dinner and then we all went home. Laurie and I were exhausted and we turned in very early. The stress of the past couple of days caught up to us. It was an extremely difficult day and it is very hard to say goodbye to our infant daughter but we rejoice that Hope is at peace, and free; she passed from life support to life eternal and we rejoice for her even as we mourn her loss. We will never forget our little girl; we will always hold onto hope.

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