June 18 Email Update

Friends,

Thank you all for your patience in waiting for this update. There have been no changes in Claire's health, or the baby's health, so she is still waiting to get to the 36 week mark. At that point, her doctors can induce labor and have all of the necessary team members available for the baby's birth.

Our family had the most wonderful vacation that we have ever had two weeks ago in Hilton Head. All of us, but especially Claire and Jeff, appreciated the opportunity to get away from reality and just have a "normal" week with our family. We have some wonderful memories from the trip and it was an amazingly happy and peaceful time for all of us. Thank you for your thoughts and prayers- they continue to lift us up.

Rather than try to summarize Claire & Jeff's report from their meeting with their perinatologist yesterday, I am (with her permission) copying her information below. I think it helps some people to have the details, in the process of trying to understand what is happening with the baby. Here is Claire's report from yesterday...

"I just wanted to let you all know that we met with our perinatologist this morning; he was wonderful to us, as usual, and confirmed (to the extent that he could) a few things to us about thebaby. There is still no fluid around the baby, and he believes thatthere is no kidney function at all. He said with at least 10% kidneyfunction, we would at least see some fluid, and there is clearly none at all. Also, the kidneys have cysts on them, which indicate damage aswell. He told us the lungs also look smaller thanthey normally should at this point, which makes him believe that thelungs are underdeveloped. Normally, this would be bad news, obviously,but in our situation, it means there may be a more merciful end for thebaby and that we might not have to wait until the kidney damage takes him. He indicated that he was somewhat surprised that there had not beena cord injury at this point-he said he would have fully expected it tooccur in the three weeks since we've seen him last. He also said thatthe possibility of cord injury increases as the baby grows (and he iscontinuing to grow, right on track, according to the ultrasound measurements); however, both Jeff and I feel like the cord injury is not likely-this little guyis putting up quite a fight. So, with the compromised lungs and alsowhat they believe to be no kidney function, he said that itwould be a matter of when, not if, the baby will pass away. He thinksthat if the lungs are truly compromised, it will be very quick, but ifjust the kidneys are compromised, it will most likely be a matter ofdays-not hours and not weeks. So, we are hopeful that God will bemerciful and swift with our little one; in any event, he confirmed that neither of these failures (lung or kidney) would bepainful for the baby or result in a large struggle, which gives us a lotof comfort.We will meet with him for one final ultrasound in a few weeks,just so we can make sure nothing has changed and that we are as preparedas we can be for the birth. "

Your continued prayers are so appreciated. Specifically, we are all hoping for a peaceful birth of this precious baby, and regardless of how his life unfolds- whether it be minutes, hours or days that he is here with us- that he not have to suffer for even a moment. Claire and Jeff's medical "team" has assured them that any and all necessary steps will be taken to ensure the baby's comfort; however, they understandably have lingering anxiety over this possibility.

I read somewhere recently that this experience- of losing a child so soon after birth- can be described as "preparing simultaneously for the joys of the birth of your child, and the undescribable goodbyes of death... learning to let your child go, while also holding on as tightly as possible to their memory... in a word, devastating".

Thank you for your love and support.
love kathie