9-18-02 bens ups and downs

From: Lisa Cote [mailto: ljcote@snet.net ]
Sent: Wednesday, September 18, 2002 3:07 PM
Subject: Bens ups and downs..

Hello everyone.

Today is a sad day. Today we buried our little Joshua Timothy amidst our family. I never thought I’d see the day when I would bury my own child. But having our families surrounding us with their love made the morning a bit more tolerable.

Ben had a couple of good days and really began to make some impressive improvements – they had taken him off of the respirator yesterday afternoon and were giving him 24 hours to see how he did. When we saw him yesterday he looked great and seemed much more comfortable without the darn tube down his throat. Last night when we visited him, he had even graduated to a hard shell incubator and our hopes were once again lifted.

At about 1:00 am this morning we were awaken by the NICU nurse who called us and said that Ben was not doing as well off of the ventilator so they had put the tube back in. When they took an X-Ray to see if the tube had entered correctly, they found a penetration or hole in his lower intestine. This required emergency surgery to repair and we worried that he might not make it through this invasive procedure. He survived the surgery but will be very sick for a while as he recouperates from surgery and from some of the waste that had leaked into his stomach area from the hole. The doctors are unsure how the hole came to be, but are speculating that it may be from one of the medications he had been on – some sort of side effect. The nurse said that this was not uncommon in babies his age and size unfortunately. We saw him today after Joshy’s burial and his color was so different and he didn’t look well. It was hard to see him like that after seeing him look so great yesterday.

We were told that for every day or week he has that’s good, he may have days like this where he takes some steps backwards. Logically that seems comprehendable…but in my eyes, it’s almost impossible to understand. And I continue to ask why. But I also continue to have faith in God, and in all of you who have consistently shown your love and support throughout this whole ordeal. So PLEASE just keep praying for our little Ben. He’s a strong soul…but his little body can only take so much…

Love and peace,

Lisa Cote